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Tuesday March 13th 2018

Patient experience, public satisfaction and politics

Patient experience, public satisfaction and politics (49)

Many of our featured reports cover patient experience. This week's is different.

Instead of looking at experience of NHS services, this briefing, using data from the British Social Attitudes survey, looks at general public satisfaction with the NHS. As the authors state, "Polling on public attitudes is different, because people tend to focus on wider issues as well as their experience of care when responding. Not everyone responding to a public poll will have used the NHS recently".

So how satisfied are the general public with our health service? The good news is that "the NHS remains a treasured national institution that is a key part of the British national identity. The public is unwavering in its support for the underlying principles of the NHS and consistently prioritises the health service for extra government funding".

The bad news is that "public dissatisfaction with the NHS grew to 29% in 2017" the highest level of dissatisfaction with the NHS since 2007". Further, "Dissatisfaction with the NHS has risen rapidly over the past three years: between 2014" and 2017, the level of dissatisfaction almost doubled".

Analysis of responses to the survey shows that people under the age of 65 report lower levels of satisfaction than those aged 65 and older. And respondents who identify as Black report lower levels of satisfaction than respondents who identify as White. The briefing notes that "Patient experience surveys also find that patients from minority ethnic groups report more negative experiences, and this may be a contributing factor to differences in the satisfaction levels reported in the BSA survey".

The top two reasons for satisfaction were "quality of care" and "free at the point of use". The top two reasons for dissatisfaction were "not enough staff" and "takes too long to get an appointment". There is an interesting mix here of opinions that may stem from patient experience but which could also reflect political viewpoints.

The question of political viewpoints is important. The conclusion to the briefing states that "With an increase over the last few years in the proportion of survey respondents reporting lack of funding as a reason for their dissatisfaction, it seems the public is increasingly aware of the reality of funding pressures that the NHS has experienced". It finishes by saying that "With equally small increases in funding planned over the next few years and NHS performance on key headline measures worsening, it is hard to see the public's satisfaction with the NHS improving in the near future".

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Tuesday June 19th 2018

Adult inpatients: Problems persist.

Adult inpatients:  Problems persist. (63)

Last week saw publication of the latest CQC national patient survey - this one providing fresh evidence on the experiences of adult inpatients.

We now have a nearly ten-year cycle of these surveys, enabling us to start getting a clear picture of patient experience trends over time. Encouragingly, there have been consistent improvements for how well doctors and nurses care for patients. 78% of patients said they "always" had confidence in nurses this year, compared with 72% in 2009. And fewer patients now say that doctors had spoken in front of them "as if they weren't there" (23% compared with 29% in 2009).

Hospital discharge, however, remains one of the weakest areas of patient experience for adult inpatients. 19% of respondents thought hospital staff did not take their family or home situation in to account when planning their discharge, while a quarter (25%) of patients thought their family (or someone else close to them) were not given all the information they needed to care for them after leaving hospital. Less than two-thirds of patients (62%) left hospital with written information telling them how to look after themselves post discharge, a figure which has deteriorated since 2013 (67%).

The problem is not just with hospital staff. 17% of survey respondents said they left hospital not knowing what would happen "next" with their care, and 22% said they did not receive enough help from health or social care professionals to help recovery or to manage their conditions.

These kinds of issues have been repeatedly highlighted in local Healthwatch reports, going as far back as 2013. If patient experience of hospital discharge remains poor, it is not for want of evidence.

Another persistent feature of the CQC patient surveys is that inpatients with a pre-existing mental health condition report a poorer experience of care across most areas of the NHS patient experience framework; information sharing, respect and dignity, coordination of care, confidence and trust, respect for patient centred needs and values, and perceptions of overall experience of care. We have highlighted this previously - and again, it is troubling to see the evidence mounting up but the problems remaining unresolved.

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Tuesday June 12th 2018

Confronting Dr Robot

Confronting Dr Robot (62)

We have previously looked at ways in which artificial intelligence (AI) and machine learning might affect healthcare. Now a new report from Nesta adds to the debate.

According to the authors, AI could put patients more in control. But, they say, "there's a risk that the public could experience it more as a barrier than an open door, blocking access to care, offering opaque advice and dehumanising healthcare in every sense".

They say that "today's AI is narrow and not capable of the holistic thinking and complex judgement required for many clinical tasks". For them, "the path towards AI replacing humans is not solely determined by technical capability. Technology implementation will need to address trust, accountability and similar factors".

The report calls for a "people powered" AI for healthcare, based on principles of control, simplicity, dialogue, equity and accountability. These, it says, are "principles that apply to any form of healthcare that aims to be humane and person-centred". However, they "are not presently being applied to the design, development and implementation of AI".

The report recommends that "Policymakers should set rules for AI and ownership of public data that ensure the public gets not only value for any data it decides to share, and privacy elsewhere, but also AI products that deliver maximum public benefit".

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Monday June 11th 2018

Power to the people

The Make Birth Better campaign is raising awareness of birth trauma, and calling for changes to maternity services. It is part of a long and proud history of women campaigning for better births.

Importantly, maternity campaigners have not just focussed on the practicalities of childbirth. They have significantly changed the culture of the medical profession. Concepts of choice and control, and the idea of partnership between patients and professionals are now part of the language of the NHS. But they stem, in large part, from the activism of women motivated by the desire for better experiences through pregnancy and childbirth.

Our guest blog on the Make Birth Better site makes the case for a comprehensive evidence base on women's maternity experiences.

All the work of the Patient Experience Library is based on an understanding that in healthcare, knowledge is power. Individually, women seeking better births can rely on personal experience and personal assertiveness. But women together - over time and across communities - need to be able to draw on collective experience and shared knowledge. And for that, they need access to the evidence.

The Library contains over 40,000 documents on patient experience and patient/public involvement. Several thousand of those relate to maternity. We want those to be freely available to patients, public, activists, researchers and, of course, health professionals.

We remain hopeful that NHS England will at some point see the value of the resource, and will want to support our efforts. But in the meantime, we're open to discussions with maternity campaigners about how to mobilise the evidence, and put more power into the hands of women and their birth partners.

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Tuesday June 5th 2018

A raw deal for children

A raw deal for children (60)

"Even taking into account the significant expansion in children's mental health services, workforce constraints mean that by 2020/21 we only plan on meeting the needs of a third of children with diagnosable mental health conditions".

This statement comes from the foreword to Lord Carter's review of unwarranted variations in mental health services and community health services.

The review considers a range of productivity and efficiency issues across various mental health and community health services. But let's stay with those children with diagnosable mental health conditions.

Back in 2016, the Five Year Forward View for Mental Health said that "too many people have received no help at all, leading to hundreds of thousands of lives put on hold or ruined, and thousands of tragic and unnecessary deaths". It spoke of "a real desire to shift towards prevention". But that desire sounds hollow in the light of Carter's revelation that two years from now, two thirds of children who may need treatment will have to go without.

Children who do get treatment for mental illness might be considered lucky - except for the fact that their experience, as patients, is consistently poor.

The Care Quality Commission's most recent Children and Young People's Survey found that patients with a mental health condition, and their parents and carers, reported significantly worse experience for matters including information and communication, transition and continuity, respect for patient-centred values, involvement of family and friends, and awareness of medical history.

At the start of 2017, Prime Minister Theresa May described mental illness as a hidden injustice. We have said before that the injustices are not hidden - they are in plain sight.

Lord Carter's review outlines ways in which productivity and efficiency improvements across mental health and community health services could save the NHS nearly £1 billion by 2020/21. Putting that saving towards better preventative work in children's mental health might be a good way to start addressing the injustices that the Prime Minister is so concerned about.

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Wednesday May 30th 2018

15 steps for maternity

15 steps for maternity (59)

The Nursing and Midwifery Council has recently been consulting on its "fitness to practise" role - its work in regulating the safety and professionalism of registered nurses and midwives.

The consultation document states that "The context in which patient safety incidents occur is extremely important". It says that "By considering the context we are asking what caused an incident, rather than who is to blame".

This is vitally important, given the learning from major failures at Trusts including Mid Staffordshire, Morecambe Bay, and Southern Health. In every case, part of the context for avoidable harm and death was an organisational culture that devalued patient experience and dismissed the concerns of patients and relatives.

So the publication of NHS England's "15 Steps for Maternity" is timely, and welcome. The subtitle, "Quality from the perspective of people who use maternity services" points to its value in enabling the patient voice to be heard alongside regulators and inspectors.

The authors are keen to point out that the 15 Step Challenge is not a performance management tool or an audit. Instead, it aims to build an understanding of how people feel about the care provided, how confidence can be built by positive first impressions, and what might be done to increase levels of confidence as part of continuous improvement.

The challenge is based on a quote from the mother of a child needing frequent hospital admission. Her observation was that, "I can tell what kind of care my daughter is going to get within 15 steps of walking on to the ward". And sure enough, a series of practical guides prompt people taking the challenge to record immediate impressions of a healthcare service - taking in features such as "welcoming", "safe", "clean" and "calm".

Anyone who has read the report of the Francis Inquiry will know that these are powerful pointers towards the underlying wellbeing of staff, systems, and, ultimately, patients.

The 15 Steps Challenge has value in its own right as a means of getting service users' feedback. But it can also offer important clues to that vital question of "context" that underpins health professionals' ability to do their jobs safely and well.

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Tuesday May 22nd 2018

PPI in a digital age

PPI in a digital age (58)

"We live in a digital age" says the opening statement to this report. And sure enough, the NHS is working hard to develop things like electronic patient records and telehealth, propelled by reviews including Wachter and Topol.

This report looks at ways to strengthen the voice of the citizen and patient within the process - not least because "the systems and processes that lead to the adoption of technology tend to marginalise the voice of most patients and the public".

This may be because "projects are nervous about involving the public, and are worried about adverse publicity, particularly in the wake of the Care.data scandal". But the report counters any such perceptions with real-life examples of successful approaches to involving patients and public in digital healthcare initiatives. These include:

Technology for bringing together patient data - including patient data sharing.

Technology for connecting directly with patients - including tools for self diagnosis and self management.

Technology for communicating and engaging with citizens. This includes crowdsourcing techniques and other forms of citizen science.

A series of case studies illustrate how these principles are being applied across the country, and the report is rounded off with a summary of key points of good practice, followed by suggested ways to strengthen patient/public involvement in the development of a digital NHS.

This is a good report that raises some important issues. And, following her own good practice recommendations, the author finishes with a call for interested readers to get in touch, to share ideas and continue the discussion.

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Tuesday May 15th 2018

I could not survive another day

I could not survive another day (57)

It is good to see NHS England's recent announcement of new funding for community perinatal mental health services. These will allow pregnant women and new mothers with mental health difficulties to access specialist services in every part of the country by April 2019.

We hope that the new services will be evidence-based - not just in terms of clinical need and treatments, but also in terms of understanding women's experiences through pregnancy and beyond.

So this week, our featured report is one that came out a few years ago but which is still highly relevant.

Hyperemesis Gravidarum (HG) is a severe complication of pregnancy associated with extreme nausea and vomiting. Other symptoms include headaches, heightened and warped sense of smell and extreme fatigue.

In addition to the physical complications HG can lead to depression and social isolation as well as financial and relationship problems, and women can feel they are less effective parents due to the condition. These complications in turn can lead to Post Traumatic Stress Disorder. Research indicates that around 10% (and possibly as many as 20%) of sufferers terminate otherwise wanted pregnancies for the condition.

This report describes the experiences of women who had ended pregnancies while suffering HG. 95% described their symptoms as "intolerable", and 84% said they would have wanted to continue with the pregnancy if they had not been suffering HG.

Shockingly, the researchers found that 47% of women did not receive treatment for HG. Of these, 40% requested treatment but were denied it, and the others did not ask for treatment and were not offered any. A quarter of women who were not prescribed medication reported that it was because their doctor said it would harm the foetus or there were no medications suitable for pregnancy.

The authors conclude that women are terminating wanted pregnancies because they are being denied antiemetic treatment. They state that women who have terminated due to HG carry a significant burden of guilt, remorse and often anger upon finding out subsequently that treatments are, in fact, available.

Hyperemesis Gravidarum is a physical health condition. But it is one which can have profound consequences for women's mental wellbeing - especially if the symptoms and medications are poorly understood by professionals.

As new community perinatal mental health services are rolled out across England, it is vital that they help to improve understanding of HG. That means listening to women's experiences, and recognising that better physical and mental health for HG sufferers may depend, as much as anything, on better professional responses.

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Tuesday May 8th 2018

Hospital visiting Canadian style

Hospital visiting Canadian style (56)

It has been heartening to see calls for an overhaul of hospital visiting rules from Jane Cummings, Chief Nursing Officer for England. With the 70th anniversary of the NHS coming up, she thinks it's a good time to for hospitals to sign up to John's Campaign (for the right of people with dementia to be supported by their family carers) and pledge their welcome to carers.

According to Cummings, "A flexible approach to embracing the presence of carers has led to improving the overall experience of care, changing the atmosphere in wards and services, and helping to make best use of current resources. It has also led to better communication, fewer complaints, reduction in falls, violence, delirium, length of stay, improvement in hydration and nutrition, acceptance of therapy and medication, generally improved well-being and maintenance of function, complementing the work of the #endpjparalysis and the last 1000 days programme."

Over in Canada, the debate about hospital visiting has been going on for a while. Our featured report this week summarises the deliberations of a Better Together Policy Roundtable on the topic of "family presence".

The family presence approach aims to change the concept of families as "visitors" to families as partners in care in hospitals. It enables patients to designate a family member or loved one who can remain with them 24/7 and be a part of their care team. Families can be present during many aspects of the healthcare experience, including rounds, procedures and transitions.

The roundtable looked at the evidence supporting family presence, considered the current state of family presence in Canada, set about dismantling the myths and challenges of family presence, and looked at case studies of family presence policies.

It then moved on to equipping participants with knowledge about how to implement family presence policies across their organization or jurisdiction. The report says that "Participants left the second day of the roundtable with clear and actionable steps for beginning the process of adopting family presence policies within their jurisdictions or across their healthcare organizations".

We welcome Jane Cummings' call for a review of hospital visiting restrictions, and her clear support for the John's Campaign principles and pledge. We hope that this is just a first step towards the kinds of family presence approaches that the Canadians are championing.

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Tuesday May 1st 2018

Better deal for PX staff - more evidence

Better deal for PX staff - more evidence (55)

We'd like to say thank you to everyone who liked, retweeted and commented on our BMJ Opinion piece last week, which called for a better deal for patient experience staff. A key part of our case was that PALS teams and others are swamped by patient feedback from multiple sources, presented in a bewildering variety of formats, and published across far too many different websites.

By happy coincidence, we spotted this paper last week, from a team of academics who have been looking at the "usefulness and use" of patient surveys.

There is so much good stuff in this paper that it is hard to know how to summarise it. Perhaps the best way would be via these direct quotes:

"The value of data for organizational quality improvement is not commensurate to the volume of data the system supplies. This misalignment is... in many ways, the consequence of national survey programs being set up to satisfy a national agenda rather than being designed with respect to local circumstances."

"... gleaning information from experience data requires the same analytical capability as interpreting clinical data; however, that capability is often unavailable. Staff across health systems consider patient feedback to be valuable but have neither the time nor the expertise to use it...".

"The paradigm regarding patient experience feedback is heavily rooted in large national initiatives... which are accompanied by a sluggish bureaucracy and political concerns. It is likely that these initiatives are neither capturing, nor producing, what is most useful to the organizations trying to use patient feedback to improve care".

"In order for patient-reported feedback to be an effective improvement tool, and avoid the ethical grey zone around soliciting patient input and not acting on it, feedback programs need to make efforts to facilitate data comprehension and use."

It's not that the national surveys are no good. In fact, they are packed with potentially useful data. Developing that potential, however, means giving patient experience staff the analytical tools they need. We have been doing some work on this and hope to develop some solutions. If you have thoughts on this matter, we'd like to hear them! Please get in touch at info@patientlibrary.net

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Tuesday April 24th 2018

A better deal for patient experience staff

It is good to see NHS England running this year's Experience of Care week. Right across the country, patient experience teams are joining in with events, case studies, celebrations, and lots of activity on Twitter.

In an NHS that tends to be dominated by news of financial and workforce pressures, it's patient experience staff who remind us that what matters most is how patients experience the care they receive.

Our top message for Experience of Care week is simple: if staff have good experience of care, so do patients. A workforce that is nurtured, developed and supported will have a better chance of giving patients the best possible care.

Patient experience staff are central to this. And they deserve better support.

The NHS draft workforce strategy is bafflingly silent on this. It says that its purpose is "to put staff at the heart of a patient centred service vision". But it says nothing about patient experience staff - the very people who are best placed to help.

Happily, the BMJ is alert to this issue, and keen to hear more. Our opinion piece sets out clear proposals that are easily achievable by NHS England:

- A stronger learning foundation for patient experience work, with a qualification and professional development pathway. - Automatic access for PALS teams to the Patient Experience Library - the UK evidence base on patient experience.- Analytical tools to help staff make sense of the mass of patient survey data that arrives in different formats from different sources.- Acceptance by all Trusts that Heads of Patient Experience should be part of a patient-centred leadership culture.

This is the kind of professional recognition and support that clinicians take for granted. Patient experience staff deserve similar - especially in an NHS that says that "experience of care" matters.

View our BMJ Opinion piece

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Tuesday April 17th 2018

PALS vs robots

PALS vs robots  (53)

It is not easy to make sense of patient experience. Healthcare providers struggle to keep up with multiple datasets coming from CQC inspections, national patient surveys, Healthwatch reports, local compliments and complaints systems and more.

This paper makes the point that "enthusiasm for collecting patient experience data does not guarantee that these data will be used to monitor improvements and assure the quality of care". It goes on to say that "the eagerness for collecting [data] dissipates into confusion as busy staff struggle to transform reams of patient comments into useful information. The inevitable result is that, despite the best efforts of staff, information which patients share in good faith is wasted".

The task has, in recent years, been made even harder by the increasing tendency of patients to bypass formal feedback mechanisms and air their views via Twitter, Facebook and other social media. How are hard-pressed patient experience staff meant to keep up?

The authors consider the role of machine learning in helping providers to track large volumes of patient comments on social media and to "automate the laborious process of analysing the unstructured text".

They note that "The performance of machine learning algorithms is attractive". One system in particular can predict NHS Choices star ratings "with an admirable 97% accuracy".

So is it time to get rid of patient experience staff and use robots instead?

On this point, the authors are cautious. According to them, "Previous research has highlighted the disconnect between the collection of patient feedback, a relatively straightforward endeavour and its subsequent use to drive improvement activity" a far more elusive task".

In other words, computers can collate and sift data, but it takes skilled and experienced staff to work out what really matters, and to spot where the opportunities for service improvement lie.

As the authors themselves acknowledge, computational systems are good - they can excel at some tasks, and improve efficiency in some of the more laborious aspects of data handling. But the job of "distilling 'messy' patient data into clear and actionable insight" is - for the time being, at least - best left to humans.

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Tuesday April 10th 2018

Patient Experience magazine - Spring 2018

Patient Experience magazine - Spring 2018 (52)

Much of the discussion about patient experience centres on kindness and compassion. Sometimes, the talk is about dignity and respect. But how often do we think about the dynamics of power?

When the focus shifts from patient experience to patient and public involvement, we need to be especially conscious of the power balance between professionals and people who are sometimes described as "lay representatives". How are people invited to engage, and on what terms? On whose territory do meetings take place? Does professional expertise carry more weight than lived experience?

In the Spring edition of Patient Experience, we have two comment pieces that address these issues - raising questions, and offering pointers to good practice. Our third contributor describes her encounters with a health system that seems disjointed, unresponsive, even disrespectful. This creates another kind of power imbalance - one that makes a nonsense of aspirational statements in strategy documents.

We also have our usual roundup of recent reports on patient experience and patient/public involvement, including a batch that offer further evidence that the way healthcare staff are treated affects the way that patients are treated. As the NHS finalises its workforce strategy, this is vital evidence that must be taken into account.

We're always keen to hear from our readers, so if you have news and views for our next edition, get in touch!

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Tuesday March 27th 2018

Staffing and patient experience - more evidence

Staffing and patient experience - more evidence (51)

The NHS consultation on the draft workforce strategy has now closed. A final version of the strategy will be published in July. Throughout the consultation period, we have been flagging up the connections between NHS staff experience and patient experience.

Now yet another report, this time from the Parliamentary and Health Service Ombudsman, reinforces the point.

The PHSO's job is to pick up complaints that have not been resolved by the NHS. And sure enough, the report highlights a series of such complaints, arising from serious failings in NHS mental health services. But it also considers how and why mistakes might be made in the care of people with mental illness.

A frank assessment of "The state of mental health provision in the 21st century" pulls no punches. It refers to recent CQC findings of:
- unsafe staffing levels
- staff on acute wards lacking the skills to anticipate and de-escalate violent situations
- information about risk not being available to all staff involved in a patient's care

It goes on to mention a King's Fund report which revealed "a 13% reduction in mental health nurses between 2009 and 2017, with inpatient care losing nearly 25%. Almost 10% of all posts in specialist mental health services in England are vacant."

The effect on patient experience can be seen in the complaints case studies that form the main part of the report. But the PHSO is in no doubt that "workforce challenges" are at the heart of the problem.

"The complaints we have included in this report demonstrate how patient care and safety is jeopardised by these workforce challenges. They show clinical staff ill-equipped with the skills to manage potentially violent situations, being expected to work double shifts leading to exhaustion, and clinicians having to treat conditions they have no experience of. Unless these workforce challenges are addressed it is difficult to see how the transformation of mental health care, envisioned in the Five Year Forward View for Mental Health, can be realised."

This is now the fourth consecutive report to make the links between staff experience and patient experience very clear indeed. As the workforce strategy moves from draft to completion, we hope that senior NHS managers will take note.

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Tuesday March 20th 2018

Patient surveys: Read the small print

Patient surveys:  Read the small print (50)

A common feature of patient surveys is some form of ratings system to indicate levels of satisfaction. Patients may be asked to give one to five stars for aspects of the service they have experienced, or to score from 1 ("Very Poor") to 10 ("Excellent").

Patient experience staff assessing the results will of course be delighted to see a sheet with top scores against all the survey questions. But this study, published in the Patient Experience Journal, suggests that the top scoring responses may merit a closer look.

The authors analysed almost two years of in-patient survey data from a large hospital system in the US, and found, puzzlingly, that "a significant percentage of patients provide perfect domain scores only to follow up with negative comments". They wanted to investigate this apparent contradiction and to "understand what patients who provide positive experience scores and negative comments are trying to tell the health care organization".

One finding was that patients sometimes use free text comment boxes on a survey form to raise issues that are not addressed by the actual survey questions. In one example, the survey asked about matters such as controlling pain or meeting emotional needs. But the patients, via their free text comments wanted to raise issues such as support staff and understanding of medications.

A second consideration is that "patients who are highly loyal to an organization may not want to decrease their ratings, based on an understanding that ratings are important to the organization". Giving high ratings while airing problems via the comment boxes may enable patients to express loyalty to the organisation, while simultaneously (and as a kind of quiet aside) suggesting room for improvement.

A further point is that "a patient may see a health domain as being predominantly great, but spoiled by 'one bad apple'". For example, a survey question on "nurses" in general may be rated as excellent, while the comment box reveals a problem with one nurse in particular.

The study contains plenty more interesting detail. But its overall message seems to be that if that if you get a five star survey response, don't rest on your laurels. For real learning, read the small print.

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Tuesday March 6th 2018

Care for staff equals care for patients

Care for staff equals care for patients (48)

Twice in the last couple of months, we have featured reports which show that workforce pressures on NHS staff generally result in poorer experience of care for patients. Those reports (here and here) focussed mainly on staffing levels and workload.

This new report takes evidence from NHS staff experience surveys and considers the extent to which staff experience (good or bad) can be a predictor of good or bad patient experience. It found that "there are some clear and strong associations between staff experience and how satisfied patients are".

As with the other reports, workload was important. "When the pressure is higher, and when staff are less satisfied with the resources and support available, patients clearly notice and have a less satisfactory experience."

However, the report goes beyond quantitative matters such as staffing levels, to look at more qualitative aspects of staff experience. It found that organisational culture matters: "In organisations where employees feel that there are not equal opportunities for career progression or promotion, or when staff experience discrimination, or when staff suffer physical violence at the hands of colleagues, patients are less happy."

The study found that for staff in general, "the ability... to contribute toward improvements at work was not as important". Except, that is, when it comes to black and minority ethnic staff. "...when BME staff thought their role makes a difference to patients, and when they were more able to contribute toward improvements at work, overall patient satisfaction was higher". The authors make the point that "the extent to which an organisation values its minority staff is a good barometer of how well patients are likely to feel cared for".

As the NHS and Public Health England consult on the draft workforce strategy, this series of reports present vital evidence that must be taken into account. They show that workforce issues are not just about staffing levels and skills: organisational culture matters too. They show that a "one size fits all" approach will not work - the NHS workforce, like wider society, comprises diverse groups with varying needs and expectations. And they show that in an NHS that aims to be person centred, the way staff are treated directly affects the way that patients are treated.

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Tuesday February 27th 2018

Ignoring the alarms

Ignoring the alarms (46)

This hard-hitting report from the Parliamentary and Health Service Ombudsman is a must-read for anyone involved in patient experience work and complaints management.

We hear of the needless death of a patient - Averil Hart, who died of anorexia nervosa, aged 19. The PHSO report details "multiple serious departures from the standards of care expected", and "a long series of missed opportunities to recognise her deteriorating condition".

As in so many other cases, what happened next was that grieving relatives suffered the worst possible treatment at the hands of NHS organisations.

The PHSO examined the experience of Mr. Hart (Avril's father) through a prolonged period of enquiry and complaint. They found that "most of the NHS organisations which dealt with Mr Hart's complaint failed to respond to his concerns in a sensitive, transparent and helpful way".

Responses to requests for information "were delayed and appeared evasive, and information he requested was often not provided". Responses to complaints "were equally unsatisfactory, and often appeared defensive or protective of the organisation concerned". There was "a consistent picture of unhelpfulness, lack of transparency, individual defensiveness and organisational self-protection".

The report is entitled "How NHS eating disorder services are failing patients". But it is not just about eating disorder services. Multiple organisations and services were complicit in the poor treatment of the family following Avril's death.

The PHSO says this:
"The Cambridgeshire and Peterborough Trust's handling of Mr Hart's complaint was so poor that it was maladministration."
"The GP practice's complaint handling was so poor that it was maladministration."
"The Norwich Acute Trust's complaint handling was so poor that it was maladministration."
"NHS England's approach... was so poor that it was maladministration."

The report finishes with this observation - and warning: "The death of Averil Hart was an avoidable tragedy. Every NHS organisation involved in her care missed significant opportunities to prevent the tragedy unfolding at every stage of her illness from August 2012 to her death on 15 December 2012. The subsequent responses to Averil's family were inadequate and served only to compound their distress. The NHS must learn from these events, for the sake of future patients."

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Tuesday February 20th 2018

Better experience at end of life

Better experience at end of life (45)

We have often made the point that "patient experience" is not just about what happens to people who are unwell. It is also about how relatives and carers feel about the way that loved ones are being looked after. That is particularly true when it comes to end of life care.

As this new report from Macmillan puts it, "At a time when you are at the mercy of medicine, and of your own body, you can feel extremely disempowered and out of control. And, as a family member, you can feel that everything is happening to you and around you".

The report notes that in July 2016, the Government made a "National Commitment" to improve end of life care across England. This included making sure everyone has access to the right end of life care, regardless of geography, age, diagnosis, background or means.

But the commitment came with no extra funding. Instead, implementation of the commitment was left to local sustainability and transformation partnerships (STPs). Analysis of draft STP plans, however, has shown that 41% had no mention or little detail of how end of life care would be improved.

The report authors state that "there continues to be unacceptable geographic variation and inequality in the end of life care people with cancer receive in their dying months. While some people have choices around where they die, and the chance to spend time with the people who matter to them, others spend their final year in and out of A&E, and have little opportunity to access the care of their choosing".

They go on to say that "Each year in England, an estimated 48,000 people experience poor care in the final three months of their lives. And more than 12,500 cancer patients (10% of those who die in England each year) spend the last two days of their lives without adequate pain relief".

The report makes a series of recommendations for how variations in end of life care could be better identified and addressed. It calls for "genuine choice about how you are cared for and where you spend the last days and hours of your life" - not only for the sake of patients, but also because a good experience of end of life care can have "a lasting and meaningful impact on friends and family left behind".

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Tuesday February 13th 2018

Workforce pressures worsen patient experience

Workforce pressures worsen patient experience (44)

A few weeks ago, we featured a BMJ paper, "Patient satisfaction with hospital care and nurses in England". The authors had found that 85% of nurses in NHS hospitals were unable to complete nursing tasks due to lack of time associated with high patient-to-nurse workloads.

7% of nurses reported that they lacked time to complete necessary pain management, and 11% missed treatments and procedures. That is bad enough. But when it came to the kind of person-centred care that is a defining feature of high quality services, the picture was far worse. A staggering 52% reported lacking the time to educate patients and their families, and two out of three (65%) were unable to comfort or talk with their patients.

Now a new report from the Kings Fund and Picker Institute confirms links between workforce pressures and patient experience. They found that on busy wards with high bed occupancy, patient feedback was more negative, particularly in respect of getting comprehensible answers from nurses; and timeliness of response to call buttons.

Conversely, patients at trusts with more nurses per bed reported a more positive experience.

Patient experience was also negatively associated with higher spend on agency staff. This, according to the report authors, is unsurprising, since "use of agency staff provides less continuity of care and stability for hospitals and patients". They comment that "The main focus of concern for spend on agency staff has been on financial savings; our analysis suggests that there are quality issues at stake as well".

The report states that "work pressures and staff shortages in the NHS are escalating, and likely to worsen given financial constraints and the probable impact of UK's withdrawal from the EU". In these circumstances, say the authors, "the risks to patient care are self-evident and it is important to monitor staff wellbeing and how it is impacting on patients".

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Monday February 5th 2018

More deaths. More learning.

More deaths.  More learning. (42)

Last week saw the publication of a long-awaited report into the deaths of five children in the care of health services in Northern Ireland. The children died in the late 1990's and early 2000's, and bereaved families have had to wait until now for a full and final account of what happened.

There are two common threads running through the families' experiences. The first is that their children died from hyponatraemia - an excessive dilution of sodium levels in the blood. According to the Inquiry report, this is a condition for which "A diagnosis is made easily". It goes on to say that "dilutional hyponatraemia should not happen in a hospital. It is a preventable hospital illness".

The second common thread is institutional denial of error, and appalling treatment of grieving relatives.

The Inquiry report describes "an underlying institutionalised reluctance to admit major shortcomings" and "no acknowledgement of any of the very many failings in care". There was "defensiveness, deceit and a strong inclination... to close ranks". Furthermore, "clinicians did not admit to error for the obvious reasons of self-protection" this defensiveness amounted to concealment and deceit".

These statements are a clear, and dismaying, echo of similar statements in inquiry reports from Mid Staffs, Morecambe Bay and Southern Health. The "Recommendations" section of the report starts by saying that "The lessons of these sad cases must be learnt because it cannot be assumed that such tragedy could not happen again". The Morecambe Bay investigation report carried an almost identical warning: "It is vital that the lessons, now plain to see, are learnt... by other Trusts, which must not believe that "it could not happen here'".

Mistakes can and do happen. There will be further avoidable deaths in NHS services. When they occur, the learning should not just be about improved practice and procedures. It should also be about how the NHS, as a healing organisation, learns to deal honestly and compassionately with bereaved relatives.

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Tuesday January 30th 2018

Got questions? Get this.

Got questions? Get this. (41)

You might think that writing questionnaires is a fairly basic skill for people involved in patient experience work. At the same time, we have probably all had experiences with questionnaires that were too long, or contained overcomplicated or irrelevant questions.

Writing a good questionnaire is harder than it seems, which is why this guide from NHS England is a welcome new addition to their "Bite-Size" series.

There won't be much in it to trouble academic researchers. But it will be handy for any front line practitioners needing to put together a questionnaire while simultaneously handling complaints, writing committee reports, managing volunteers and keeping the boss happy.

Some of the advice may seem basic - for example "avoid using jargon". But as it progresses, the guide takes us into more interesting territory, covering "cognitive testing", "gratitude bias" and "bipolar" versus "unipolar" scales. That may sound as though the authors ignored their own advice to avoid using jargon. But the terms are explained well, within a publication that - as with all Bite Size guides - is clear and concise.

If you need a questionnaire that patients can make sense of, and which will return a set of results that you can make sense of, this is the document to have ready to hand.

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Tuesday January 23rd 2018

Defining patient/public involvement. Should we even try?

Defining patient/public involvement.  Should we even try? (40)

Patient and public involvement (PPI) can, at times, look like motherhood and apple pie. We can all agree that it is, by and large, a Good Thing.

Agreeing what we mean by PPI, however, can be harder. We have touched on this issue previously - the excellent "Zombies and Unicorns" paper, for example, stated that "there is a lack of consensus about what effective PPI in research processes might look like and... little conclusive evidence about the best (or worst) ways to invoke PPI in research design, research practice, or research commissioning".

This paper agrees, pointing to "a lack of a common language to share PPI practice... the term PPI is not universal in its application or definition".

In spite of this, attempts to nail down a definition of PPI may not be helpful. They can lead to "semantic intricacies" and "circular debates held primarily amongst academics".

But if we cannot agree a definition of patient and public involvement, how can we aim for consistently good practice? For the authors of this paper, the answer is to aim instead for a basic set of principles - clear enough to be commonly understood, but flexible enough to be applied across different PPI settings.

The paper goes into some detail about the research method, but the important outcome is a set of "essential" and "desirable" PPI principles, assembled from the viewpoints of both patients and professionals.

Equally important is that "the principles suggested provide quality guidelines for best practice, not prescriptive rules. The proposal of a "one size fits all" approach to PPI would be inappropriate, as no single PPI initiative will work for all situations, individuals or agendas". And "whilst PPI must be adaptable to local circumstances and objectives, the essential principles required to underpin its effectiveness may well be universal in their application".

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Tuesday January 16th 2018

NHS nurses - uncaring, or just too busy?

NHS nurses - uncaring, or just too busy? (39)

85% of nurses in NHS hospitals report not being able to complete nursing tasks due to lack of time associated with high patient-to-nurse workloads. So says this study, recently published in BMJ Open.

The authors state that "when nurses have high patient loads... necessary nursing care can be missed because of lack of time". That may come as no surprise. Intriguingly, though, the study goes on to look at the kinds of tasks that are missed when the pressure is on. And it presents clear evidence that while some clinical care may suffer, what really gets hit is the kind of person-centred care that is meant to be the bedrock of good patient experience.

7% of nurses reported that they lacked time to complete necessary pain management, and 11% missed treatments and procedures. But a staggering 52% reported lacking the time to educate patients and their families, and two out of three (65%) were unable to comfort or talk with their patients.

The study cites Sir Robert Francis, Chair of the public inquiry into the Mid Staffordshire NHS Trust, as stating (July 2017) that safe nurse staffing in England still lacks a standardised approach. It confirms his view, with the finding that there is "substantial variation across NHS general acute hospitals in patient-to-nurse workloads. Nurses in some NHS hospitals are caring for twice as many patients at a time as nurses in other hospitals".

This matters because of what the authors describe as "The concern about nurses being uncaring or lacking in compassion". Their view is that the study "refutes the narrative blaming quality of care deficits in NHS hospitals on uncaring nurses".

On this evidence, it would appear that the problem is not so much a lack of compassion as a basic lack of nurses.

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Tuesday January 9th 2018

Patient Experience magazine - Winter 2018

Patient Experience magazine - Winter 2018 (38)

We kick off 2018 with the latest edition of our Patient Experience magazine, featuring another great batch of topics and insights from the world of patient experience and involvement.

On "experience", we have a story about stolen biscuits. This is a useful reminder that sometimes it's the small kindnesses that count, and that organisational attitudes are revealed not in the grand vision statements, but in day-to-day actions.

On "involvement", we have a discussion of "virtue signalling", whereby moral posturing may be seen as more important than effective engagement. An item on culturally sensitive approaches to antenatal classes covers both angles, showing how well-handled involvement can lead directly to improved patient experience.

Our collection of reports and studies contains some gems. The Care Quality Commission published three national patient surveys during the autumn, on Emergency Departments, Community Mental Health Services and Children and Young People's experiences. All provided useful insights in their respective areas. But putting all three together alongside the May 2017 Adult Inpatient survey revealed a stark fact - that people with mental health conditions have consistently poorer patient experience across the board. As the new Mental Health Policy Research Unit gets up and running, we hope that the CQC's findings will be central to their agenda.

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Tuesday December 19th 2017

Need information? Ask a nine year old.

Need information?  Ask a nine year old. (37)

"Communication" features regularly as an issue in patient experience surveys and focus groups. People struggle to understand and retain complex information on health conditions, medication, appointments and so on.

The standard response is to produce leaflets that summarise key facts and can be handed out to patients. But do such leaflets help? What do we do about the fact that, with a UK average reading age of 9 years, much written material will be beyond the grasp of many readers?

The authors of this BMJ paper took a novel approach. They went to a group of nine year olds, taught them about total hip athroplasty, and then asked them to write a patient information leaflet on the subject.

The results are both hilarious and revealing. The children weren't interested in dressing up their messages in official language, or in observing social niceties. They just went straight to the point. "Your hip is old and rotten" was Mohammed's opener. In case you hadn't got that, Jamie helpfully explained, "It is past its sell-by date".

Outlining the procedure, Oliver wrote that, "we saw out the old bone... put the new one in and it's a new hip and then we clip it back up". David's reassurance is, "...don't worry you will be asleep. When you wake up it will all be done".

How about preparation for the op? Maria's advice is, "Don't smoke. Lose weight. Be there on time!!"

The children drew pictures to illustrate key points. Our favourite is the one that carries an important piece of advice for all patients: bring your teddy with you.

People writing patient experience leaflets may not want to adopt all of the children's approaches. Explaining the risks, for example, Mohammed may have been a little too blunt ("You might die!!!!!!"). But in with all the fun is an important point about keeping it simple and saying what you mean.

As the authors put it, "Enlisting children to help formulate these leaflets may seem whimsical. But our experience has shown us that the child can become the tutor, teaching us the value in simple relevant communication."

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Tuesday December 12th 2017

Healthwatch funding cut. Again.

Healthwatch funding cut.  Again. (36)

Last week, Healthwatch England took the step of publishing a letter to the Secretary of State for Health, along with a briefing about the state of funding for the local Healthwatch network.

The documents describe a 37% reduction in funding since the network's first allocation in 2013/14. They say that this is "putting at risk the ability of the network to deliver on its statutory obligations".

By way of evidence, they state that:
- Local Healthwatch operate on very tight budgets and with very small staff teams (often only two people) covering very large geographical areas and populations.
- There are problems with one or two year contracts not providing sufficient stability to enable long term planning and retain staff.
- There are concerns around some councils' confusion between commissioning statutory Healthwatch activity and funding wider voluntary and community sector projects.

Healthwatch was set up in the wake of the Francis Inquiry into "appalling suffering" and avoidable deaths at the Mid Staffordshire Trust. It was meant to be a stronger and more effective patient voice organisation than its predecessor, the Local Involvement Network. But it is hard to see how it can fulfil that expectation with the financial rug being pulled each and every year since its inception.

Last year, our report "What Price Patient Voice" described a widespread failure to understand the value for money offered by Healthwatch and other patient voice initiatives. There is no consensus on what value for money looks like, and no benchmarking of funding levels for patient voice work. This would not be acceptable within other health service functions such as medicines or workforce, where financial assessments, value for money scrutiny and investment rationales are the norm.

Without a clear value proposition, Healthwatch will struggle to develop a strong business case. That makes the network vulnerable to further funding cuts.

It also means that local authorities are free to do what they want with funding that is intended for the statutory functions of local Healthwatch. They can cut as deep as they like. They can do so arbitrarily. And they can get away with it.

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Tuesday December 5th 2017

Patient experience worse for mentally ill

Patient experience worse for mentally ill (35)

For the fourth time this year, a national patient experience survey has shown that people with mental health conditions have a poorer than usual experience as patients.

The Care Quality Commission's Children and Young People's Survey has found that patients with a mental health condition, and their parents and carers, reported significantly worse experience for matters including information and communication, transition and continuity, respect for patient-centred values, involvement of family and friends, and awareness of medical history.

The Children and Young People's Survey follows on from the Adult Inpatient Survey and Emergency Dept Survey, which both revealed poorer experiences of care for people with mental illness. A fourth study - the Community Mental Health Survey - reported little sign of improvement for "substantial concerns" raised a year ago, and stated that services "have even declined slightly in key areas".

The latest findings make a nonsense of Prime Minister Theresa May's claim that mental illness is a "hidden injustice". Unjust it might be. But hidden it certainly is not. Four national surveys in a row have shown that people with mental health conditions - children as well as adults - have consistently poorer experiences of care right across the board. The evidence could not be clearer.

The CQC has done an excellent job in bringing this issue to light. It is time now for politicians and providers to act.

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Tuesday November 28th 2017

Making Sense of Patient Experience

Making Sense of Patient Experience  (34)

Two years after its publication, it is worth revisiting "Making Sense and Making Use of Patient Experience Data".

The report sheds light on the hard realities of patient experience work at the front line. It makes the point that patient experience staff work in small teams with limited resources.

Particular challenges include gathering an ever-increasing amount of data, keeping up with reporting requirements and ad-hoc requests, and having the time and capability to analyse data and generate insights.

One patient experience lead put it like this, "It's a nightmare to see what's going on. Trying to triangulate between 12 different data sources coming from different angles, presented differently.. " Another was somewhat more succinct: "It's mad. We need to rationalise what we ask".

The result, according to the report's authors, is that: "Staff and patient experience teams are sometimes so busy gathering data and compiling reports, that less time is available to do something with the data - efforts to improve services are in danger of being squeezed out".

Two years on from the report's publication, patient experience evidence is still published in too many different places and in too many different formats. But we have made a start on rationalising it.

We have collated and catalogued all the UK patient experience literature, so that it is now searchable. Our Knowledge Maps series has also had a good response, with people commenting on the value of having lots of key data all in one place. But we see a need to go further.

We are starting to envisage a way of simplifying the task of "gathering data and compiling reports". Discussions with staff in Trusts and CCGs indicate a clear need, and are also indicating some possible solutions. So we're limbering up for some more breakthroughs in the year ahead.

Watch this space to see how we're getting on - or better still, drop us a line if you want to contribute ideas or get involved: info@patientlibrary.net

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Tuesday November 21st 2017

CQC shines light on "hidden injustice"

A year ago, when the 2016 survey of patient experience in community mental health services was published, the Care Quality Commission said that "substantial concerns remain about the quality of care some people using community mental health services receive. There has been no notable improvement in survey results in the last year".

They suggested that there was "scope for further improvements in a number of areas including: involvement in care, crisis care, care planning and reviews".

Worryingly, the 2017 survey results, just published, show little sign of improvement. In fact, the CQC's own headline is that "patients' experiences of these services across England have not improved and have even declined slightly in key areas".

The survey shows that:
- 26% of respondents said that they did not feel they got the help they needed from crisis care, compared to 21% in 2014.
- 25% of respondents reported they had not seen workers from their mental health services often enough to meet their needs in the last year - up from 21% in 2014.
- 68% of respondents felt listened to by their healthcare or social workers - down from 73% in 2014.

Especially troubling is "a marked trend that the longer a person is in contact with mental health services, the worse the experience reported".

Nearly a year ago, Prime Minister Theresa May described mental illness as a "hidden injustice". Various statements since then have been taken by some as encouraging signs that government - at the highest level - takes mental illness seriously, and that parity of esteem with physical health services is on its way.

But feedback from patients is clearly and consistently telling a different story. And those injustices are not hidden. They're right there in the CQC's evidence.

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Tuesday November 14th 2017

Patient Experience in Trusts - the new map

For too long, the data on patient experience in NHS Trusts has been too hard to find.

A large volume of evidence emerges from surveys and feedback mechanisms. But it is published across multiple websites, and hundreds of individual web pages. Health professionals can struggle to find what they need. Members of the public (the source of all the data) may not even know where to begin.

In a major breakthrough for patient experience reporting, we have brought all the key Trust data together into one simple to use map. This is a huge increase in the accessibility of patient experience data. It strengthens Trusts' transparency and public accountability. And it helps the NHS on its journey towards providing information digitally and seamlessly.

The map is part of our continuing mission to bring patient experience into the light.

The map will make life easier for policymakers, commissioners and providers. It also makes the information far more accessible to members of the public, who fund and use NHS services, and who give time and goodwill to make their experiences known.

We'd like to say a big thank you to all the people from Trusts and CCGs (you know who you are!) who helped us with the concept and design, and then tested various versions.

The "Patient Experience in Trusts" map is available on the Patient Experience Library website, along with other Knowledge Maps that help to make important sources of evidence more visible.

View the map

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Tuesday November 7th 2017

Patient experience: Lessons from Hillsborough

Patient experience:  Lessons from Hillsborough (31)

It was good to see NHS England hosting two "Learning from Deaths" events last week - one for bereaved families and one for health professionals.

The events were part of efforts to ensure that the recommendations contained in the CQC's "Learning, candour and accountability" report are implemented in a clear and structured way.

By a remarkable coincidence, last week also saw the publication of a report by Bishop James Jones, which aims to "ensure the pain and suffering of the Hillsborough families is not repeated".

Entitled "The Patronising Disposition of Unaccountable Power", the report reveals striking parallels between the experiences of the Hillsborough families and of people who have sought justice following avoidable deaths within health and care services.

The Bishop remarks that "The [Hillsborough] families know that there are others who have found that when in all innocence and with a good conscience they have asked questions of those in authority on behalf of those they love the institution has closed ranks, refused to disclose information, used public money to defend its interests and acted in a way that was both intimidating and oppressive".

Institutional reactions of this kind have been documented in the Francis report on Mid Staffs, the Kirkup report on Morecambe Bay and the Mazars report on Southern Health.

NHS staff do a fantastic job under immensely difficult conditions. Day after day, they care for people, cure sickness and save lives. On the rare occasions when things go wrong, a poorly handled institutional response can let down staff, as well as patients.

The Bishop observes that a lack of honesty does not come from individuals - it is institutionally embedded. It is "a cultural condition... an instinctive prioritisation of the reputation of an organisation over the citizen's right to expect people to be held to account".

The report urges the Prime Minister and Home Secretary to "ensure that those responsible for our national institutions listen to what the experiences of the Hillsborough families say about how they should conduct themselves when faced by families bereaved by public tragedy".

Mid Staffs, Morecambe Bay and Southern Health are public tragedies where too many avoidable deaths were followed up by inadequate investigations and dismissive treatment of bereaved families. Shrewsbury and Telford is likely to fall into the same category.

We hope that those responsible for the NHS Learning from Deaths programme will take careful note of the contents of this report.

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Tuesday October 31st 2017

CQC vs Twitter: which is better?

CQC vs Twitter:  which is better? (30)

The likelihood of patient feedback being dismissed as merely "anecdotal" is, thankfully, diminishing. Healthcare professionals know that patients can offer useful insights into quality and effectiveness - picking up issues that they themselves might miss.

Now a new study lends added weight to the idea that patient feedback is not just an optional extra, but a key part of performance and risk management within the NHS.

"Wisdom of patients" describes a project carried out by specialists in risk analysis and behavioural science. They took large volumes of patient feedback on Trusts and hospitals, from sources including Twitter, Facebook and Care Opinion. They then applied classifications and sentiment analysis to produce a "collective judgement score", or CJS. Finally, they compared the CJS with CQC inspection ratings for the services in question.

They found that on average, patient feedback ahead of a CQC inspection is better for hospitals that subsequently get a higher CQC rating. The better the patient feedback in the 90 days prior to a CQC inspection, the greater the likelihood of a more positive overall rating.

Interestingly, some 'Inadequate' hospitals scored a high collective judgement score (from the social media feedback), as did some 'Requires improvement' hospitals. So it would appear that patients are better collective judges of organisations performing well than they are of organisations performing poorly.

In spite of this, the researchers state that "while the collated patient feedback cannot perfectly identify poorly performing organisations, it can identify those organisations that are most likely to be performing poorly. Indeed, not a single organisation with a [low] CJS was rated 'Good' or 'Outstanding'.

So is patient feedback via social media a better guide to service quality than a CQC inspection? Probably not - or at least, not yet. The authors of this paper are clear that "there is still a lot to be learnt about the use of aggregated patient feedback. It is possible that the predictive power ...could be improved".

Even so, there is already "a positive association between the collective judgement score and subsequent inspection outcomes". And the paper concludes that "The near real-time, automated collection and aggregation of multiple sources of patient feedback should be used to help prioritise inspections".

Be warned - if you're not a statistician, this paper may not be an easy read. But if you persevere, you may find yourself thinking twice about how you use your social media feedback.

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Tuesday October 24th 2017

A&E - what do patients think?

A&E - what do patients think? (29)

We hear a lot about the pressures that A&E services are under, including many reports that patients misuse the service by turning up there as a first, rather than last, resort.

The CQC's 2016 Emergency Department survey (released last week) shed interesting light on this issue. 42% of respondents did not go to A&E as their first port of call - they used alternatives such as GPs, or the 111 and 999 numbers. But three-quarters ended up in A&E anyway because they were referred there by those other services.

There may well be misuse of A&E by some people. But it may not be as widespread as some sources would have us believe.

Many patients - once there - have a very favourable experience of the service. There are high levels of confidence in clinicians, and a significant majority feel listened to and respected (78%). Even more (82%) had enough privacy while being examined or treated.

On the downside, fewer than half of those who were distressed felt that staff "definitely" reassured them. And nearly half (45%) reported being discharged without any account being taken of their family or home situation. This ties in with various Healthwatch reports (local and national) about problems with leaving hospital.

A further correlation is for people experiencing mental ill health. Their experience of A&E is poorer than for other patients, tying in with findings from the 2016 acute inpatient survey.

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Tuesday October 17th 2017

Patient experience as a lever for funding... and for evidence based commissioning, and more!

Patient experience as a lever for funding... and for evidence based commissioning, and more!  (28)

The autumn 2017 edition of Patient Experience is out now, with news, views and research updates on patient experience and patient/public involvement in healthcare.

The journal features comment from a former Head of Fundraising at a major hospital charity, who explains how patient experience can be used to focus funding on the "additional extras" that can do so much to improve people's hospital visits.

Further comment comes from a senior researcher who looks at evidence-based commissioning, and considers how "knowledge mobilisation" can help commissioners put academic writings to practical use.

We have all our usual reviews of the latest patient experience studies and surveys - helping you to keep track of the resources that can guide your policy and practice. And we offer pointers to training and conference events - some supporting professional development, and some open to patient representatives as well.

We hope you'll enjoy this edition of Patient Experience and if you have ideas for other great content we should be featuring - let us know! info@patientlibrary.net

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Tuesday October 10th 2017

What does spiritual care look like?

What does spiritual care look like? (27)

"36% of British adults would not define themselves as 'religious'. Yet research is unveiling that spiritual beliefs offer ...health and psycho-social benefits [including] improved coping styles, social support, protection against mental illness, and physiologically, an improved immune system".

So says this report from Healthwatch Suffolk, which looks at how spiritual needs are answered in care home settings.

The project was triggered - at least in part - by one of the Care Quality Commission's five key inspection questions: 'Are they (the service provider) responsive to people's needs?' The CQC recognises that to be responsive, providers must give consideration to every individual's religion and beliefs.

Through visits to care homes, and discussions with residents and staff, a multi-faith project team explored aspects of good spiritual care, which can encompass all beliefs, whether strictly religious or not.

The report notes that "When having to face mortality questions can arise. Such as, what is important in life? And what isn't important in life? This can happen to anyone having a big life change or illness, whether terminal or not. None of us are as prepared for that as we may think we are, we can all have an awakening of spirituality at that time".

We may think of health and care services as having a culture that is primarily science-based, and having systems and procedures that aim, above all, to guide clinical practice. But any service that aims to be "person-centred" should consider people's spiritual wellbeing alongside their physical and mental health.

This - perhaps more than we realise - can be an essential part of the quality of patient experience.

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Tuesday October 3rd 2017

Harm to healing - partnership with patients

Harm to healing - partnership with patients (26)

As NHS England limbers up for its "Learning from deaths" guidance development day, we thought it might be worth digging out "Harm to Healing", a 2011 report from the Canadian Patient Safety Institute.

This valuable report looks at the engagement and partnering of patients and/or their families who have been harmed in healthcare, and considers psychological aspects of recovery.

The authors find that "patients/families who have been harmed in healthcare grieve in a way that is similar to, but distinct from other forms of loss" (our underline). Importantly, they state that "Healthcare providers and leaders in healthcare organizations may also go through a grieving process similar to what patients/families experience".

They describe a "second harm", experienced by patients/family when "the healthcare organization does not provide information with a reasonable explanation about the original harm in an open, timely and respectful manner". This matters, given the CQC's recent statement (in "Learning, Candour and Accountability") that "we have heard from families who had to go to great lengths themselves to get answers..., who had their experiences denied and their motives questioned".

The report makes it clear that the process of engaging patients and relatives in investigation and remedial work is far from straightforward. "Patients/families engaged too early in their recovery journey may unintentionally suffer further harm". Health professionals need to understand that "there is a difference between eagerness [to be involved] and readiness ... eagerness can overwhelm the readiness".

We welcome the work currently being undertaken on "learning from deaths", but hope that it will not limit itself to simply reviewing systems and procedures. The NHS, as a healing organisation, also needs to look after the emotional wellbeing of patients, relatives and staff who are dealing with trauma and grief.

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Tuesday September 26th 2017

How not to learn from mistakes

How not to learn from mistakes (25)

"Avoidable errors within maternity can have devastating consequences for the child, family and carers and contributed significantly to the £1.7 billion cost for clinical negligence in 2016/17. Possibly the most devastating and undoubtedly the most expensive, are claims for avoidable cerebral palsy".

This opener to "Five years of cerebral palsy claims" sets the scene for the national goal of "reducing the rate of stillbirths, neonatal and maternal deaths and brain injuries that occur during, or soon after, birth by 50% by 2030".

That goal is accompanied by an ambition for the NHS to become the "world's largest learning organisation".

We wholeheartedly support both goals. But to become the "world's largest learning organisation", the NHS will have to address a major flaw in its learning culture.

Consider this quote from "Five years of cerebral palsy claims": "[There is] evidence of poor quality serious incident investigations at a local level - The patient and family were only involved in 40% of investigations".

Does that sound familiar? It should do, because it has been said many times before. Here are some examples:

In 2015, the Mazars review of unexpected deaths at the Southern Health NHS Foundation Trust described "an ad hoc and inadequate approach to involving families and carers in investigations".

In June 2016, the RCOG "Each Baby Counts" report revealed that "in a quarter of instances [of death or brain injury] parents were not made aware that a local review was taking place. Just under half the time, parents were made aware ...but were not invited to contribute".

In July 2016, the PHSO's "Learning from Mistakes" report into the death of three year old Sam Morrish said "local NHS investigation processes were not fit for purpose... and they excluded the family".

In December 2016, the CQC's "Learning, Candour and Accountability" report said "we have heard from families who had to go to great lengths themselves to get answers..., who had their experiences denied and their motives questioned".

It is clear that a key reason for the failure of the NHS to learn from mistakes is the failure to hear from patients, carers and families.

"Five years of cerebral palsy claims" is a welcome addition to the evidence on patient experience. But we earnestly hope that it is not simply added to a growing pile of reports that have all said similar things.

In "Learning, Accountability and Candour", the CQC said, "We owe it to [bereaved families] to stop talking about learning lessons, to move beyond writing action plans, and to actually make change happen". Let us hope that the NHS - as it moves towards becoming the world's largest learning organisation - gains a better understanding of patient experience as a vital learning resource. And that alongside evidence of patient experience, evidence of actual change soon starts to emerge.

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Tuesday September 19th 2017

Patients, professionals, power and culture

Patients, professionals, power and culture (24)

Last week, we looked at "hostage bargaining syndrome" - the propensity of vulnerable patients to deal with powerful and expert clinicians as if negotiating for their health from a position of fear and confusion.

This week's featured report looks at the position of health professionals, and considers how they react to more assertive patients - the ones who are (or are perceived to be) complaining.

Interviews with 41 staff in eight different NHS settings explored how they made sense of complaints and of patients' (including families') motives for complaining.

The authors found that complaints were seen as a breach in fundamental relationships involving patients' trust or recognition of professionals' work efforts. Complaints were most often regarded as coming from patients who were inexpert, distressed or advantage-seeking. Accordingly, care professionals positioned themselves as informed decision-makers, empathic listeners or service gate-keepers.

Troublingly, the authors note that it was rare for interviewees to describe complaints raised by patients as grounds for improving the quality of care.

Taken together, both last week's and this week's featured reports indicate that there is much more to "patient voice" than surveys and "engagement activities". Patients feeling vulnerable and powerless may be too frightened to say anything much. Those who do speak up may be seen by health professionals as troublesome.

Understanding patient experience is not just about feedback systems and action plans. It is also about power relationships and organisational culture.

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Tuesday September 12th 2017

Patient? Or hostage?

Patient?  Or hostage? (23)

There is much talk in the NHS these days of "person-centred care", and of patients and clinicians being "partners in care". The aim is to move on from the old "doctor knows best" attitude, and to encourage "empowered patients" to participate in decision-making.

Of course, culture change is often easier said than done, and this paper from America's Mayo Clinic describes how some patients can succumb to "hostage bargaining syndrome" (HBS), whereby they behave as if negotiating for their health from a position of fear and confusion.

The paper observes that medical care has recently become more focused on serving patients as consumers. But most commercial services are "want" services, while medical care is a "need" service that consumers-turned-patients often dread and may delay receiving.

Patients are often reluctant to assert their interests in the presence of clinicians, whom they see as experts. The higher the stakes of a health decision, the more entrenched the socially sanctioned roles of patient and clinician can become. HBS is especially seen when serious illness unfolds over the course of multiple, complex, emotionally laden interactions with clinicians. Cancer care and intensive care, for example, are characterised by a high degree of dependence and powerlessness for patients.

HBS can manifest as understating a concern, asking for less than what is desired or needed, or even remaining silent against one's better judgment. When HBS persists and escalates, a patient may succumb to learned helplessness, making his or her authentic involvement in shared decision making almost impossible.

The authors conclude that clinicians often have the power to arrest and reverse HBS by appreciating, paradoxically, how patients' perceptions of their power as experts play a central role in the care they provide.

This is a thought-provoking document that is well worth a read.

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Tuesday August 29th 2017

Patient Experience in England

Patient Experience in England (22)

NHS strategies state that an understanding of patient experience is central to development of "person-centred" services. But our latest publication reveals that NHS staff are bombarded by eighteen separate reporting mechanisms on patient experience. Data arrives in different formats and at different times, and some of it is of questionable quality.

The report, "Patient Experience in England", cuts through the muddle, explaining how patient experience evidence is gathered and disseminated. It shows what has been learnt about patient experience in England over the last year. And importantly, it looks at whether health service providers are acting on the learning.

Good news from the last year includes generally positive experiences for cancer patients, and a sense among hospital inpatients that confidence and trust in clinical staff has gone up. However, other findings strike a warning note:

- There are "significant declines" in key areas of person-centred care.
- "Substantial concerns" remain about the quality of care some people using community mental health services receive.
- In maternity services, some women were left alone at a time that worried them during early labour, and of those who raised concerns, not all felt that their concerns were taken seriously.

The report goes on to list recent research studies that have shown an "evidence-practice gap", with Trusts, CCGs and GPs all having difficulty in translating patient experience evidence into better service delivery.

Part of the problem is that patient experience leads lack parity with clinicians in terms of their professional development and support. If they are to lead Trusts and CCGs in understanding patient experience, they need better access to the literature. We are providing a solution in the form of the Patient Experience Library, and are calling on NHS England to work with us to open up access to the Library as widely as possible.

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Tuesday August 22nd 2017

Improving patient experience in primary care

Improving patient experience in primary care (21)

A few weeks ago, we reported on the 2017 GP Patient Survey results. Our comments briefly touched on this observation, from "Improving patient experience in primary care": "...surveys are a valuable resource for monitoring national trends in quality of care [but] may be insufficient in themselves to fully capture patient feedback, and in practice GPs rarely used the results of surveys for quality improvement."

We're returning to "Improving patient experience..." to recommend a read of the report. Be warned - at some 450 pages, it's a long read. There is, however, an excellent summary offering some thought provoking findings, including these:

- Patients are reluctant to be critical when completing feedback questionnaires. Reasons included the need to maintain a relationship with the GP, gratitude for NHS care, and power asymmetries. Patients find questionnaires to be limited tools for feeding back concerns about consultations.

- Ethnic origins of patients have a bearing on patient experience. Low scores given by Pakistani patients in surveys such as the GP Patient Survey reflect care that is genuinely worse, and possibly much worse, than that experienced by their white British counterparts.

- GPs are positive about the concept of patient feedback, but struggle to engage with [it] and make changes under current approaches to measurement.

- Within practices, and in out-of-hours settings, staff neither believed nor trusted patient surveys. Concerns were expressed about their validity and reliability, and the likely representativeness of respondents.

The authors conclude that there is "a huge gap" between the measurement of patient experience, and the actions being taken as a result. Importantly, they state that "the major question for the future is how we are going to take the wealth of data on patient experience and make experiences better, rather than simply better understood".

It is impossible, in this short review, to do justice to such a wide-ranging and in-depth study. We recommend a read of the report.

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Tuesday August 15th 2017

Self-management: More harm than good?

Self-management:  More harm than good? (20)

With increasing demand for health services, propelled by an ageing population, and long-term conditions such as diabetes, it is no surprise to see NHS strategies placing more and more emphasis on "self-management". Often this is couched in the language of "shared-decision-making" and patient empowerment" - on the face of it, desirable goals.

This short and snappy presentation, however, raises important questions about patients' ability to manage elements of their own care. It considers social and cultural determinants of health, and makes the point that "A background of historical oppression or social inequity will not make the [process] a collaboration but may reinforce pre-existing negative determinants of health".

The extent to which self-management burdens the patient, rather than empowering him/her also depends on the balance between care needs and the patient's own ability to fulfil them. "Patients with few demands but low capacity may experience burden whereas those with many demands but high capacity may not".

The presentation comes from Canada's "Measuring Patient Centred-Care Forum" and to some extent reflects the Canadian context. But the overall message is relevant to UK audiences as well: self-management may be an important part of NHS strategy, but we should not take its apparent benefits for granted.

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Tuesday August 8th 2017

We can't be patient-centred if we don't know what it means

We can't be patient-centred if we don't know what it means (19)

The NHS wants to be patient-centred. We know this because the phrases "patient-centred" and "person-centred" appear repeatedly in NHS vision statements, mission statements and strategies.

But what does "person-centred care" actually mean? Unfortunately no-one seems to know.

There are various definitions floating around, but no agreement on which one is best. So we have an NHS that is setting a course towards something that hasn't been clearly defined.

That's like setting sail for America when you don't really know where America is. With lots of luck and a fair wind, you might just get there. But it's more likely that you'll go round in circles getting ever more confused.

A recent editorial piece from the Journal of Clinical Nursing makes some powerful points about why this matters.

Firstly, in the absence of clarity and rigour, there is a tendency to simplify. A favourite idea is that "person-centredness is working with what matters to the patient; it is about acknowledging the values, choices and preferences of patients, and it is about a certain type of nurse-patient relationship - always a compassionate one!" But this kind of over-simplification misses the point that "facilitating choices and... sustaining a compassionate relationship are probably the most challenging aspects of nursing".

Another concern is that practitioners "generally experience working in contexts and cultures that are inherently unsupportive of person-centredness, meaning they cannot embody or practice in person-centred ways". This view will be familiar to anyone who has read the research indicating that in order to look after the patients, you have to look after the staff.

The authors go on to consider measurement of person-centredness. "A fundamental principle of any systematic evaluation is clarity of definition... Given that we observe few clear definitions in use, then how can organisations evaluate person-centredness?"

The conclusion is that "publishing incomplete and poorly considered definitions of person-centredness promotes the view that person-centredness is less complex than it is and that it is easier to implement than it is. This can lead to unnecessary burden or even guilt for many in our profession as to why we are not achieving it better than we do or even a collective false consciousness that we have already achieved it and should be moving on to the next fad or miracle improvement/innovation".

This succinct and well-argued article nails an issue that lies at the (confused) heart of current NHS thinking.

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Tuesday August 1st 2017

Publishing patient experience data does not make it transparent

Publishing patient experience data does not make it transparent (18)

"transparency - the free, uninhibited flow of information that is open to the scrutiny of others-has been far more positive than many had anticipated, and the harms of transparency have been far fewer than many had feared. Yet important obstacles to transparency remain..."

A useful report from the American Lucian Leape Institute looks at various kinds of transparency - for example among clinicians (peer review) and between healthcare organisations (collaborative approaches). But the recommendations that most interested us were those focusing on transparency of both clinicians and organisations with the public.

Two recommendations in particular jumped out:

- "Provide patients with reliable information in a form that is useful to them."
- "Present data from the perspective and needs of patients and families."

Here in England, we spend huge amounts of time and money gathering and analysing patient feedback. The results are published - but not always in ways that aid transparency.

National patient surveys produce complex statistical data, disseminated via multiple spreadsheets. Qualitative evidence from other sources is written up in reports that use complex language across dozens of pages. Even professionals find it hard to understand some of this stuff, never mind the general public.

Worse still, the published data - both quantitative and qualitative - is scattered across hundreds of different websites. Before you can read the data, you first have to find it - and that in itself is a tough challenge. We know, because we spend every day of the week tracking down material for the Patient Experience Library.

We are determined to bring patient experience into the light. An important first step has been the creation of the Library - the first ever comprehensive database of patient experience evidence. We have started to build on that with Knowledge Maps and Insight Reports that make the evidence more visible and understandable. We have further developments in the pipeline that will continue to bridge the gap between clinicians and healthcare organisations, and the general public.

Transparency, in respect of patient experience, does not mean simply gathering and publishing data. It means "providing patients with reliable information in a form that is useful to them". We are committed to doing exactly that.

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Tuesday July 25th 2017

Safe staffing in maternity services

In March 2015, the Kirkup inquiry into unnecessary deaths in the maternity unit at the Morecambe Bay NHS Trust published its findings. In an uncomfortable echo of the Francis Inquiry into deaths at the Mid Staffordshire NHS Trust, Kirkup found that failure to hear from patients was an underlying cause of repeated errors. "The treatment of complainants... exemplified the problems commonly reported, including defensive 'closed' responses, delayed replies, and provision of information that complainants did not find to be accurate".

In April 2017 the Secretary of State for Health ordered an investigation into deaths in the maternity unit at the Shrewsbury and Telford Hospital NHS Trust. It seems likely that staff attitude and communication will be examined.

In this context, we welcome a consultation by NHS Improvement and the National Quality Board on safe staffing in maternity services.

Our response will make the point that safe staffing is not just about staff/patient ratios, shift patterns and skills and proficiency. All of these matter - but so does patient voice.

The consultation document refers to "Patient, carer and staff feedback" and lists seven different sources of patient feedback. It states that areas of concern highlighted by women and families must be carefully scrutinised. It does not, however, say who should carry out the scrutiny, or how.

Staff in maternity services work in busy environments that are physically and emotionally demanding. It is not reasonable to expect them to plough through multiple sources of patient feedback, trying to make sense of them. We have already made the point that patient feedback systems are cluttered, confused and hard to understand.

Ideally, maternity staff would turn to patient experience leads for help. Other evidence shows that hospital staff find it hard to act on patient feedback, and need "organisational readiness" - back-up from other parts of the system - to be able to use feedback to increase safety and drive improvement.

But patient experience leads are not always well supported, and lack parity with their clinical colleagues. NHS clinicians work in a culture that consciously develops their expertise. So they have access to comprehensive professional databases to guide their practice and professional development. Patient experience leads have a similar need for access to knowledge. And yet they are expected to resort to Google. That's not sensible, and it's not safe.

Safe practice depends on hearing the patent voice. And safe staffing depends on teamwork. Maternity staff cannot be experts in everything - they need help from "the team beyond the ward". That wider team includes patient experience leads. And they - like maternity staff - need to be better supported.

The consultation on safe, sustainable and productive staffing in maternity services is here.

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Monday July 17th 2017

How reliable are filmed patient stories?

How reliable are filmed patient stories? (16)

Are filmed patient stories a good thing? There seem to be more and more of them about, so they must be popular.

Perhaps that is because film-making is so much easier nowadays than it used to be. Filmed testimony can also be more compelling than a written report. And let's face it - in today's busy world, anyone who has a choice between a two-minute film clip and a twenty page report might well settle back and reach for the popcorn.

Our Featured Report this week, however, sounds a note of caution. The authors note that:

- It can be assumed that patient testimony is particularly raw and honest. But narrative theorists see stories not so much as truth, but as the crafting of truth to propel and reshape meaning. Patients sometimes have agendas of their own.

- Some people are better able to articulate complex care experiences, or have greater "on screen" charisma than others. They can become more influential "stars" than other participants in patient films.

- The "talking head" format can appear to offer a direct and unmediated window into the experiences of patients. But the editing process necessarily fits talking heads within a structured narrative, directing thoughts in some ways, and limiting others.

The authors conclude that "there is something inherently fragile, or fluid, about patient narrative as a form of valid knowledge". Challenges include those listed above. But at the same time, patient film work can counter the "dumbing effects of questionnaires" and the "blindness to patients [caused by] heat maps and endless data collection".

This paper will offer plenty of food for thought for anyone involved in committing patient experience to film.

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Tuesday July 11th 2017

GP Patient Survey results - should we be worried?

"...surveys are a valuable resource for monitoring national trends in quality of care [but] may be insufficient in themselves to fully capture patient feedback, and in practice GPs rarely used the results of surveys for quality improvement."

This observation, from "Improving patient experience in primary care" is worth considering alongside the results of the 2017 GP Patient Survey, newly published by NHS England.

The survey provides information on patients' overall experience of primary care services and their overall experience of accessing these services. The key findings contain plenty of good news - for example, that 85% of patients rate their overall experience of their GP surgery as good, and that 87% say the receptionists at their GP surgery are helpful.

The downside is that for every single key finding under "overall experience" and "access to in-hours services", patient experience has decreased since 2016. Sometimes it's not by much - 0.3% for "convenience of appointment" for example. Other decreases, however, are larger, and NHS England makes the point that "Given the size of the survey, even small changes in percentages are likely to be statistically significant".

Should we be worried? Well, yes - on two counts. Firstly because Sustainability and Transformation Plans, with their mantra of "care closer to home" will rely on primary care services to help keep the pressure off acute services. Any reduction in patient experience of primary care must be worrying for STP leaders.

The second cause for concern is that, as stated by the National Institute for Health Research, "While the GP Patient Survey data for any given practice is used as part of its CQC inspection record, there is no standard requirement for practices to review that data or act upon them. As a result there are wide variations in the use of the data and the value that can be derived from them".

So we know two things about the 2017 GP Patient Survey results. One is that there are statistically significant declines in patient experience since 2016. The other is that GPs don't have to do anything about it. That's not to say they won't. But at the whole system level, we have an NHS that seems content to gather patient experience data, while acknowledging that "there are wide variations in the use of the data and the value that can be derived from them".

All STP's make reference to "improved patient experience" as an outcome from the "whole system" transformations they propose. The GP Patient Survey indicates room for improvement within primary care - the absolute front line of public engagement with the health system. How will STP partnerships respond? We shall see...

Get the 2017 GP Patient Survey results here

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Monday July 10th 2017

Patient voice is our canary in the coalmine. Let's make sure we can hear it.

We are all patients in the NHS. We know, from personal experience, what the difference is between good and bad patient experience.

So why, when the NHS as a whole tries to understand patient experience, does it make such a dog's dinner of it?

The NHS collects a mountain of evidence on patient experience, from sources including the NHS Friends and Family Test, Care Quality Commission patient surveys, the GP patient survey, local Healthwatch reports, and online feedback tools like NHS Choices star ratings. On top of that it piles further information from local questionnaire surveys, focus groups and public meetings. And on top of that are all the compliments and complaints that come directly from patients.

All these datasets present different information in different ways, so it is very difficult to collate them, or make meaningful comparisons. In addition, the quality of some of the data is questionable.

The NHS has plenty of data on patient experience. It's just that no-one can make sense of it all.

Plenty of studies have made exactly this point. A 2015 report entitled "Making Sense and Making Use of Patient Experience Data" had this quote from a patient experience lead: "We are data rich, but we don't bring it all together (national surveys scores and comments). It's a nightmare to see what's going on. Trying to triangulate between 12 different data sources coming from different angles, presented differently..."

Another report - the 2016 Carter Review - said "...hospitals and commissioners were often looking at different datasets and from different perspectives with inevitable disagreements."

Companies in the commercial world use customer experience as a driver for service improvement. They understand the value of feedback from the general public, and make sure that collection and analysis is clear and purposeful. It is hard to imagine a big corporate allowing its outlets to muddle through heaps of customer experience data gathered from dozens of incoherent sources.

Patient experience - like customer experience in the commercial world - can be understood. But understanding it depends on having a consistent analysis of evidence drawn from reliable sources.

We need to sort through our mountain of evidence on patient experience. We need to pick out a few reliable sources that have proven value in guiding policy and practice. Then we need to stick with them. If some sources are not very good, we need to be very brave, and say so. Then we need to stop using them.

In the NHS, the patient voice is the canary in the coalmine - the early warning system that can alert us to potential problems. We need to hear our canary. But we don't need to hear canaries, chaffinches, woodpigeons, crows - the whole darn woodland. Why not? Because that's just noise.

A 2015 report, "Beyond Metrics?" described the proliferation of patient voice measures as "adding more to the noise without amplifying the signal". And the problem with noise is that people can't make sense of it. So they stop listening - they screen it out.

In the coalmine you know that if you can hear the canary, you're safe. If you can't hear it, you know there's a risk - and then you can act. If you're not even listening, you don't know where you are. And then you're really in trouble, because you don't know what to do.

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Tuesday July 4th 2017

Beware zombies and unicorns

Beware zombies and unicorns (13)

"Lack of clarity on what PPI is (or might be) has given rise to a poorly monitored, complex field of activity..."

This statement is the opener to a paper described by its own authors as a "provocation". Their concern is that the investment of time and resources in much patient and public involvement (PPI) is taking a form of "busywork" - i.e. a time-consuming technocratic distraction.

They remark that Ironically, the notion of the usefully participating, evidence-engaged patient or citizen has become ubiquitous at the same time as ignorance and "bullshit" have been successfully harnessed as resources in "post-truth" politics".

The paper reviews the development of patient and public involvement in health research, and observes that "there is a lack of consensus about what effective PPI in research processes might look like and... little conclusive evidence about the best (or worst) ways to invoke PPI in research design, research practice, or research commissioning".

An underlying problem is that "Different models of PPI carry distinctive and sometimes contradictory assumptions about the types of public to be involved, the knowledge those publics might bring to bear, and their degree of involvement in decision-making processes."

Furthermore, people who step forward as patient/public representatives have varying motives for doing so. Some are "predominantly concerned with promoting and defending their own interests and values against other participants" while others "view themselves as interdependent members of a social collective and [are] oriented towards collective ends and the common good".

The authors conclude that "formal PPI can be seen as a ghastly composite of a zombie policy that continually pops up, offering (but never providing) a solution to purported deficits in democratic engagement, despite being useless in the last policy round, and a unicorn policy, a mythical beast, prevalent, and much discussed but never discovered in replicable form in any health-care system. This zombie/unicorn hybrid creates PPI as a form of busywork in which the politics of social movements are entirely displaced by technocratic discourses of managerialism".

If you're involved in PPI, don't be offended by this last paragraph! The paper may be, as the authors describe it, "a provocation", but it is well-founded, well argued, and raises important issues that deserve serious consideration.

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Monday June 26th 2017

Why it's hard to act on patient feedback

Why it's hard to act on patient feedback (12)

"Patients are increasingly being asked for feedback about their healthcare experiences. However, healthcare staff often find it difficult to act on this feedback in order to make improvements to services."

So says a recently published study based on work with staff in three separate NHS Trusts.

The authors note that a growing international body of evidence suggests that patient experience, safety and clinical effectiveness are inextricably linked. But in spite of the wealth of feedback now available to healthcare services, there is little evidence that this has led to improvement in the quality of healthcare. "Simply providing hospitals with patient feedback does not automatically have a positive effect on quality standards".

Why is it that hospital staff find it difficult to translate patient experience into service improvement? The study points to three factors:

Normative legitimacy: To what extent are staff receptive to patient feedback? Is good patient experience seen as essential to safety and clinical effectiveness, or as a "nice but not necessary" add-on to clinical priorities?

Structural legitimacy: To what extent are staff teams (on a ward, say) empowered to identify and act on service improvement opportunities prompted by patient feedback?

Organisational readiness: Where staff teams need support for improvements from other parts of the hospital or the wider Trust, how ready are those other staff teams to pitch in and help?

The authors conclude that:

  • Without the moral imperative to listen to the patient voice, improvement rarely takes place.
  • Staff must have sufficient autonomy, ownership and resource in relation to a problem in order to enact change.
  • Insufficient organisational readiness usually blocks action planning.

This is a must-read paper, full of analysis and insight that will strike a powerful chord with anyone who has worked at the front line of NHS patient feedback and quality improvement.

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Thursday June 22nd 2017

When patients go unheard, people die.

"It is vital that the lessons, now plain to see, are learnt and acted upon, not least by other Trusts, which must not believe that 'it could not happen here'. If those lessons are not acted upon, we are destined sooner or later to add again to the roll of names.
The Report of the Morecambe Bay Investigation [into avoidable deaths]. Dr Bill Kirkup CBE, March 2015

"I had a meeting with a trust member and the analogy he used was that they were a bit like British Airways and it was like losing baggage. I really couldn't believe what the person was saying to me. It was harrowing.
Parent of a patient who died in the care of the Southern Health Trust. December 2015

We know why patient experience matters. It's because when patients go unheard, people die.

The best known example is the disaster at the Mid Staffordshire NHS Foundation Trust, where a series of unnecessary deaths led to the landmark Francis Inquiry. In his report, Sir Robert Francis was unequivocal about the reason for what he described as "appalling suffering" in the Stafford hospital. He said that it "was primarily caused by a serious failure on the part of a provider Trust Board. It did not listen sufficiently to its patients."

We think of Mid Staffs as a particularly low point in the history of the NHS. But it is not the only one.

Two years after Francis, the Kirkup inquiry revealed unnecessary deaths of mothers and babies in a maternity unit run by the Morecambe Bay NHS Trust. The inquiry report said that patients and relatives had encountered "defensive 'closed' responses, delayed replies, and provision of information that complainants did not find to be accurate."

Soon after that, the Mazars review into unexpected deaths at the Southern Health NHS Foundation Trust described "an ad hoc and inadequate approach to involving families and carers in investigations".

Different places, different providers, different services. But all joined by a common thread: a failure to value patient voice.

There is more. A review of unexpected deaths in a maternity unit run by the Pennine Acute Hospitals Trust said that "Staff attitude has been a feature of a significant number of incidents". A Parliamentary and Health Service Ombudsman report into the death of a three year old child in Devon said that "local NHS investigation processes were not fit for purpose and they excluded the family".

People sometimes think that "patient experience" means dealing with grumbles about appointments, car parking and hospital food. Or compiling Family and Friends Test reports, and wondering whether anyone will actually read them.

The nitty-gritty of patient experience may seem trivial. But the patient voice is the canary in the coalmine. It is an early warning system that can help managers to spot that all may not be well at the front line.

A patient-centred NHS will take every piece of patient feedback seriously. Because when patients go unheard, people die.


The Care Quality Commission is asking for people's views on "How can we assess how well providers review, investigate and learn from deaths?" The consultation is open until the 14th July 2017. Details here.

The Patient Experience Library's submission to the consultation can be seen here.

Thoughts? e-mail us: info@patientlibrary.net

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Tuesday June 20th 2017

The state of patient experience - 2017

The state of patient experience - 2017 (10)

There are important differences between the American and British health systems. But that doesn't mean we can't learn from our US colleagues.

The Beryl Institute's "State of Patient Experience 2017" report is based on a survey of 1,644 healthcare organisations, both within and outside the US. It has some interesting findings that could be relevant to how patient experience work is carried out in the UK. Consider these points :

  • Patient experience was seen as the top organisational priority, but employee engagement/satisfaction was second. There seems to be an understanding that happy staff equals happy patients.
  • In US hospitals, investment in patient experience staff is growing year on year.
  • In US hospitals, the leadership's desire for improved patient experience is just as much a driver for action as government-mandated measures. The top two supporting factors are "strong visible support from the top" and "formal PX structure or role". "Highly engaged staff" are seen as a further key factor in achieving positive patient experience.
The overarching message seems to be that leadership, investment, a formal PX role and engaged employees are key drivers for better patient experience. It's what might be described as a "whole system" approach.

As Sustainability and Transformation Partnerships start to pick up their momentum after the general election lull, those leading STP's would do well to bear the American learning in mind.

Almost all STP's mention "improved patient experience" as a desired outcome. Achieving that requires a systematic approach, with focused leadership, plus investment. In the detail underpinning STP planning, that needs to be stated.

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Tuesday June 13th 2017

Patient/public involvement: Should money come into it?

Patient/public involvement:  Should money come into it? (1)

Patient/public involvement: Should money come into it?

Across the UK health and care sector, many thousands of people are involved as patient/public representatives. As committee members, research participants, focus group contributors and survey respondents, they offer huge amounts of time and "expertise by experience" - nearly always as volunteers.

If patient and public input to the sector's learning and development has a value, should the value be recognised? Should our volunteer contributors become paid contributors?

Canada's Change Foundation has considered the issue. They recognise that payment for patient and public involvement (PPI) could undermine the ethos of volunteerism, or could engender a sense that opinions are being bought, rather than freely sought.

But they also consider the downside of volunteerism. This includes the possibility that expecting people to participate without payment could mean that low income patients are excluded from deliberation and debate. This matters in the context of health inequalities, where the most vulnerable in society are already relatively voiceless.

The authors state that they are "neither for nor against paying. Our concern is to work within the principles of fair, equitable and barrier-free public engagement". So they decide the payment issue on a case-by-case basis.

To help them do so, they have developed an easy-to-use decision tool. This sets the question of payments for PPI against parameters that guide decision makers towards a rational outcome.

By using the tool, you may or may not end up paying PPI participants. But at least you'll be able to explain how you have come to your decision

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Tuesday June 6th 2017

Earth to Simon Stevens: Invest in patient experience

Earth to Simon Stevens:  Invest in patient experience (2)

People involved in patient experience work can sometimes feel overwhelmed by the quantity and variety of reporting. There is a constant flow of feedback and reports from the CQC, Healthwatch, Friends and Family Test, Care Opinion, NHS Choices and more. Methods and approaches can change over time, making it hard to get a baseline for patient experience, or a sense of whether things are getting better or worse.

The Adult Inpatient Survey is a refreshing constant in the reporting landscape. The 2016 survey, just published, is the 14th of its kind, and so is able to offer insights into inpatient experience over the long term. The good news is that traditional patient bugbears - communication, cleanliness and hospital food - all show signs of improvement. Confidence and trust in clinical staff has also, encouragingly, gone up.

The spanner in the works comes from what the Picker Institute (which co-ordinated the survey) describes as "significant declines in key areas of person centred care".

Fewer patients feel involved in decisions about their care and treatment. Fewer report positive experiences of leaving hospital. And fewer believe they are getting enough help to recover and manage their condition. All this will come as a blow to an NHS that wants to help patients to be more active in self-managing their conditions.

Picker comments that "the results highlight a risk that improvements of the past could be lost if trusts and policy makers fail to keep the provision of high quality person centred care a top priority". We agree.

Publication of the report highlights two issues that are vital to a well-functioning NHS. The first is transparency. Publication of findings like these - consistently, and over many years - help us all to see what works, and what doesn't, from the patient's point of view.

The second is the value of patient experience work. Small investments in rigorous survey work can reveal insights (such as a possible threat to patients' ability to self-manage) that could cost the NHS very large sums of money.

The report has a clear message to Dept of Health policymakers: there are significant declines in key areas of person centred care. It also has a clear subtext: patient experience work offers valuable insight. And that is worth investing in.

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Tuesday May 30th 2017

STP's versus public opinion - a divergence of views

STP's versus public opinion - a divergence of views (3)

NHS England's Five Year Forward View promises a "radical transformation of patient experience". But this report from the Health Foundation indicates that the general public expect their experience to get worse, not better.

According to polling by Ipsos Mori, 44% of people think the general standard of NHS care has worsened over the past year. And almost half (48%) think it will get worse over the next year.

Some people might argue that polling results of this kind are not worth having - that they are based on people's ill-informed opinions rather than rational and objective analysis of the state of care.

Our view is that public opinion is always worth having. We all use NHS services, and so do our nearest and dearest. We all have a pretty good idea of how good those services are. Top commercial brands know about the value of public opinion - however subjective it may be. They listen very carefully to what people think of their services.

Of course, corporates cross-check customer feedback against rational and objective evidence - for example, sales figures and financial returns. And this is where the NHS comes unstuck.

The Five Year Forward View is to be implemented through 44 Sustainability and Transformation Partnerships. Their published plans all mention improved patient experience. But few, if any, have set baselines for current levels of patient experience, or set targets for how and when patient experience will be improved.

The general public are pessimistic about improvements in care and patient experience. STP's are optimistic. It looks worryingly as though planners and strategists are out of touch with public opinion.

Sustainability and Transformation Partnerships need to put forward measures that show the general public that the promised "radical transformation of patient experience" is on its way. The alternative is to accept that, perhaps, the public may be right.

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Tuesday May 23rd 2017

Patient and public involvement: Breaking organisational boundaries

Patient and public involvement:  Breaking organisational boundaries (4)

"People tend not to care about organisational boundaries, but about how services can work better for them and their families." So says Helen Hirst, CEO of a group of Yorkshire CCGs, in NHS England's statutory guidance on public participation in commissioning.

She's right. But the same should apply to health professionals located within NHS organisations.

If we can only see as far as our own organisational boundaries, we'll never understand properly how services can work better for patients and communities. We need to see what has been tried elsewhere, and to learn from other organisations' successes - and failures.

The problem for patient engagement leads is that the learning is hard to track down. There is a wealth of knowledge on patient and public involvement, but it is scattered across hundreds of different websites - from Healthwatch, through various NHS bodies, to national charities and think tanks.

We have brought it all together in the Patient Experience Library because we don't think it's right that while clinicians have access to professional knowledge databases as a matter of course, PPI leads have to resort to Google.

We're delighted that the library is mentioned in NHS England's statutory guidance, and we're talking to the Dept of Health and others about how we can open up the library to NHS trusts and CCGs.

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Tuesday May 16th 2017

Participation does not come naturally

Participation does not come naturally (5)

Participation should be natural, says Rob Webster, Lead CEO for the West Yorks and Harrogate STP. His comment is the opener to NHS England's statutory guidance on patient and public participation in commissioning health and care.

We agree - sort of.

Participation should indeed be a natural part of NHS commissioning. But that doesn't mean that it comes naturally. In fact, it usually comes with lots of toil, sweat, and - sometimes - a few tears.

Patient and public participation is not easy. And that's why this excellent guide from NHS England is so welcome. At 32 pages, it is comprehensive. But it is broken down into clear sections, with lots of hyperlinks to take readers to further guidance and resources if they want.

The sections cover matters such as the policy and strategy context, participation frameworks and principles, and ten "key actions" for CCGs on how to embed involvement in their work.

We were delighted to see the Patient Experience Library mentioned as a useful resource, and there are plenty of other helpful pointers in the guidance as well.

Rob Webster is right - participation in NHS commissioning should be natural. This guide is an important help for people who are trying to make it so.

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Tuesday May 2nd 2017

This is why insight matters

This is why insight matters (6)

After Mid Staffs and the Francis Inquiry, you might think that lessons had been learned about treating statistics and performance indicators with caution. Francis was clear that "appalling suffering" and avoidable death at the Stafford Hospital occurred because the Board and management of the Trust spent too long looking at figures and not enough time listening to patients.

In spite of that, the view persists among some health professionals that quantitative data is "hard" data, and that patient stories are simply "anecdotal".

It is not unusual for patient voice champions such as Healthwatch to be challenged on the value of their report findings. A common question is about sample size and statistical validity. Sometimes, challenges of this kind are fair. Mostly, they completely miss the point.

This report, from Healthwatch Essex, takes key statements from a group of carers and turns them into poetry. The sample size was small. But the insights are profound.

There is nothing in this report that lends itself to "hard" statistical analysis. But if you want to know what it feels like to have to agonise over putting a loved one into a care home, read this report. It says more about patient and carer experience than a table of numbers ever could.

That is why insight matters.

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Monday April 24th 2017

This is what compassion looks like

This is what compassion looks like (7)

Every week, the Patient Experience Library trawls hundreds of websites, searching out new publications to add to the UK's collective evidence on patient experience.

We read thousands of reports every year. Most are good, some are excellent. This one, from Healthwatch Essex, is astonishing.

The work is based on a series of interviews with people who have had to arrange residential care for a loved one.

The interviews were transcribed and thematically analysed so as to draw out poems from people's experiences.

The result is powerful and moving testimony, describing the love, pain, guilt, sadness and loss that people feel when having to "put someone in a home".

There is much talk in health and care services about "person-centred care". Some of it can be convoluted, focusing on definitions and procedures. This report (perhaps we should call it an anthology) shows what caring for someone really means, and takes us deep into the experiences of people trying to do their best for loved ones who are moving beyond their reach.

A wonderful piece of work, displaying an innovative approach, and true compassion.

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Tuesday April 18th 2017

(Still not) Learning from Mistakes

The Shrewsbury and Telford Hospitals (SaTH) NHS Trust has been in the news recently, following a series of avoidable deaths of babies.

Four years ago, the final report of the Francis Inquiry into the Mid Staffs disaster said this, "The suffering of the patients and those close to them ... requires a fully effective response and not merely expressions of regret, apology and promises of remedial action. They have already been at the receiving end of too many unfulfilled assurances".

Compare that statement with this, from one of the mothers whose baby died in the care of SaTH: "To hear that this (mistake) has happened before - it's just another blow. I've had an apology from the hospital, and assurances that this won't happen again. But other families have had those assurances and those apologies and if those were followed up, in the way that they said that they would, then I would have my daughter".

It would appear that Sir Robert Francis's warning about "unfulfilled assurances" has not been heeded.

In March 2015, the report of an investigation into avoidable deaths of mothers and babies at the Morecambe Bay NHS Foundation Trust said "It is vital that the lessons, now plain to see, are learnt and acted upon, not least by other Trusts, which must not believe that "it could not happen here". If those lessons are not acted upon, we are destined sooner or later to add again to the roll of names".

In June 2016, the Royal College of Obstetricians and Gynaecologists (RCOG) "Each Baby Counts" report looked at intrapartum and neo-natal deaths. It said "Many national reports have highlighted the fact that the same mistakes are made repeatedly, which suggests that our risk management processes may not be mitigating risk as we hope".

In July 2016, the PHSO's "Learning from Mistakes" report into the death of a three year old child said "local NHS investigation processes were not fit for purpose, they were not sufficiently independent, inquisitive, open or transparent, properly focused on learning, or able to span organisational and hierarchical barriers, and they excluded the family and junior staff in the process".

At Mid Staffs, Morecambe Bay and Shrewsbury and Telford, avoidable deaths occurred for different reasons. But a common thread running all the way through was a failure to hear from patients, and, in some cases, outright denial that patients had valid cause for concern.

A second thread was the failure to learn from mistakes. This includes a failure to treat patient feedback as a fundamental part of risk management. PALS teams and patient experience leads should be seen as an early warning system - the "canary in the coalmine" that can help NHS Trusts to spot that all may not be well on the wards.

We welcome Jeremy Hunt's call for an inquiry into the Shrewsbury and Telford deaths. But we worry that it will simply add to a growing pile of inquiry reports that all draw similar conclusions.

The NHS needs to start learning from its mistakes - particularly in respect of learning to listen to patients. Repeated "unfulfilled assurances" are a disaster, as are repeated "filed and forgotten" inquiry reports.

We have created the Patient Experience Library so that vital learning does not get dissipated and lost. We will be writing - once again - to Jeremy Hunt and Simon Stevens to call for more support for PALS teams and patient experience leads.

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Tuesday April 11th 2017

Investing in patient experience: House of Lords weighs in

Investing in patient experience: House of Lords weighs in (9)

If you only have time to read one report this week - or even this month - read this one.

The House of Lords Select Committee's report on the Long-term Sustainability of the NHS is a breath of cross-party sanity, recognising issues and concerns that people in the NHS and care services have been talking about for years.

Among many forceful statements, we picked out this one: "We are concerned by the absence of any comprehensive national long-term strategy to secure the appropriately skilled, well-trained and committed workforce that the health and care system will need over the next 10-15 years."

"Workforce development" does not just mean clinicians. Fundamental to a patient-centred NHS are skilled, well-trained and committed patient experience leads. They can spearhead NHS England's goal of care that is "person-centred, coordinated, and tailored to the needs and preferences of the individual, their carer and family".

Last July, the PHSO's "Learning from Mistakes" report called for more support for PALS teams. We have done the same in Patient Experience Library reports including "What Price Patient Voice" and "Flying Blind?"

We are now looking at assembling these, and other evidence sources, to produce an investment case for PALS teams and patient experience leads. We'd like to know what you think. Please get in touch.

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