The Patient Experience Library


Featured Reports

Tuesday December 6th 2022

Backlogs and ethnicity

Nuffield trust (237545)

The starting point for this report is the "huge backlog in routine hospital care (known as the ‘elective backlog’), with more than 7 million patients in England waiting to begin hospital treatment".

The authors go on to note that the NHS has a legal duty to "have regard" to reducing health inequalities, and that it has specifically committed to taking account of inequalities in how it addresses the elective backlog.

The report analyses hospital data from March 2019 to February 2022 and finds that while the number of operations and procedures fell during the Covis crisis, "the falls in activity were not uniform across the different ethnic groups".

The "Asian group" saw the largest overall fall in the first year of the pandemic (a fall of 49% for all procedures compared with 44% for the White and Black groups). There was a less consistent pattern for the "Black group", who had larger rate falls than the "White group" for cardiac and cataract procedures, but otherwise saw similar changes to the White group.

The most deprived groups in the population also experienced larger rate falls overall, and this matters because "There is a strong link between health need and deprivation, which has a disproportionate impact upon people from ethnic minorities".

The report offers considerable further detail, but says that more analysis is needed to better understand the variations. In particular, "Inconsistent, incorrect and incomplete coding of ethnicity in health records means that our understanding of this complex picture is limited".

Limitations include restricted ability to look at particular ethnic groups within the broad categories examined in the research. "Understanding how this variation maps across subgroups experiencing deprivation, like Bangladeshi and Pakistani people, would be illuminating".

"More broadly", says the report, "the lack of data also limits progress in understanding how to reduce health inequalities across health care - something the NHS has a legal obligation to do". One important consequence is that "Quite simply, patchy data means that the NHS is flying blind in its attempts to meet this legal, and moral, obligation".

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Tuesday November 28th 2023

Journaling experience

Springer - Intensive Care Medicine (241058)

In patient experience work, it is common to hear talk of people who are "hard to reach".

Sometimes the phrase is seen as a convenient excuse for not trying hard enough. But some people really are hard to reach because of severe illness, or mental incapacity.

In this article, David (an intensive care patient), tells how the practice of diary-keeping enabled family members and staff to understand what he was experiencing as he emerged from six weeks of coma, ventilation and proximity to death.

As he recovered, David found himself disorientated and prone to vivid nightmares and hallucinations. At times he was overwhelmed by anxiety and paranoia. Through all of this, his partner Rose's diary, along with his own scrawled questions and notes, helped them both to make sense of their fear and bewilderment.

Rose also documented clinical updates, making her own record of procedures, treatments and clinical signs, along with notes on David's reactions and progress.

The resulting booklet, says David, "helped me to appreciate the outstanding care both I and my family had received in those weeks". It also enabled him to "create some sort of timeline and extract the true memories from my fragmented and delusional recall".

Since leaving hospital, the diary remains a valuable resource, helping David to live with the continuing consequences of his illness. "The power in these entries lies in their ability to help me understand how dire my prognosis was. When I get frustrated with my life situation and residual health issues, finding myself struggling to move forward, I can look back to these early days and see how far I have travelled in my recovery journey."

David comments that "Reading and reflecting on my diary has often grounded me, helped ease my anxiety and prevented me from slipping further into the grip of depression, proving in my case, the ongoing mental health benefits of the diary".

David finishes with a request for health professionals: "In a world where intensive care is provided at huge expense, an ‘ICU diary’ costs a small amount of time, the price of paper and a pen and a moderate amount of teamwork. I hope I have demonstrated that the cost to benefit ratio for your patient is undoubtedly in its favour".

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Tuesday November 21st 2023

A struggle every day

Patient Experience Library (241715)

"A struggle every day' is how one respondent to a Healthwatch survey on hygiene poverty described her experience of homelessness.

That short phrase no doubt encompasses a multitude of other experiences. Healthcare policymakers and providers need to hear those experiences if they are to improve services for homeless people, in line with NHS England guidance.

This begs a question: where is the evidence on the healthcare experiences of people who are homeless or insecurely housed?

Is it easily accessible, or scattered across multiple websites and hidden behind journal paywalls? Is it comprehensive, or are there gaps? Is new research being steered towards the accumulation of new knowledge, or is there duplication and waste?

To begin answering these questions, we looked through two and a half years’ worth of studies and reports. We found extensive duplication - particularly on the question of homeless people’s access to health services. And we found areas such as hygiene poverty where the evidence was, to say the least, thin.

This latest report in our evidence mapping series looks at the implications for national NHS bodies and for research funders, and suggests ways to get better value and better learning. And if you want to explore the evidence base for yourself, you can skip straight to our interactive map to see what it looks like.

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Tuesday November 14th 2023

Slaying dragons

Journal of Patient Safety (240995)

Patient safety seems to be a permanent feature of news headlines these days.

Large scale harm in maternity services has been revealed at Shrewsbury and Telford, and at East Kent. There is an ongoing investigation at Nottingham. There have been deaths of babies at the hands of Lucy Letby. And then there are individual examples, such as the avoidable death from sepsis of Martha Mills.

So what is going wrong with patient safety? How can there be so many calamitous outcomes across so many services and locations?

This commentary from America offers food for thought.

The author argues that in patient safety work, the emphasis should be on "slaying dragons" - eliminating or at least mitigating risks to patients. Instead, he says, "current practice focuses almost exclusively on investigating dragons - tracking reports on the number and type of dragons that appear, how many villagers they eat and where, whether they live in caves or forests, and so on".

Healthcare workers, he says, "invest untold time and effort in incident reporting, incident investigation (eg root cause analysis and its various subcomponents), and the occasional prospective risk assessment". But "We cannot investigate a dragon to death. No more can we risk assess our way to safer care".

He is equally critical of "the ritualistic invocation of plan-do-study-act (PDSA) cycles" on the basis that "the successful use of PDSA in healthcare is vanishingly rare".

Three remedies are offered. The first is structured risk control tools, specifically designed for patient safety improvement.

Secondly, "we need to expand the ranks of dragon slayers. Clinicians cannot go it alone - and should not have to".

Thirdly, the task of slaying dragons means "moving beyond analysis and grappling with the messy work of systems change".

"The patient safety movement", says the author, is "settled into the comfort of an obsolete standard of practice". There is a complacency in which "ongoing patient harm has been treated as 'inevitable' and 'the cost of doing business' despite studies showing that it is possible to do better".

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Tuesday November 7th 2023

A better experience for patients

Patient Experience Library (241521)

'We need to provide a genuinely better experience for patients.' So says NHS England’s delivery plan for recovering urgent and emergency care services, published in January 2023.

It says that urgent and emergency care will 'embed what works for patients', that services will 'reflect the needs of different groups of people', and that there will be 'proactive steps to tackle known inequalities, particularly for groups who are disproportionate users of UEC services'.

These are good ambitions. But they raise important questions.

How can we know what works for patients? Do we actually understand the needs of different groups of people? And while tackling 'known inequalities' must be a good thing, are there unknown inequalities that we might be missing?

The NHS prides itself on being evidence-based, so to find the answers to these questions, we need to draw on evidence of patient experience in urgent and emergency care. But what does the evidence base look like? Is it robust and comprehensive, or are there gaps needing to be filled?

This latest report in our evidence mapping series describes our attempt to find out. We examine the evidence base to see who is doing the research, who they are talking to, and what topics they are covering.

We make suggestions for how research funders and national NHS bodies could steer the research to get better value and better learning. And if you want to explore the evidence base for yourself, you can skip straight to our interactive map to see what it looks like.

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Tuesday October 31st 2023

Storytelling as the foundation of learning

Elsevier - Journal of Medical Imaging and Radiation Sciences (240869)

"As with most education, storytelling is often the foundation of learning", says Naomi Shiner, the author of this paper.

Shiner's story is that of a parent navigating the NHS with a child with Down Syndrome. Her educational goal is to "enlighten healthcare professionals about life with Down syndrome".

Her first experience was the 18-week routine scan, at which the very much non-routine appearance of a second sonographer signalled a concern. Shiner quickly found herself ushered to "a beige, empty room, with nothing to do but wait for people to arrive and receive more information".

The next step was an MRI scan of the baby's head, which revealed a shortened corpus callosum. What, wondered the parents, might that mean for her future? There seemed to be no clear answers. If no-one could answer my questions, wonders Shiner, why had they bothered with the MRI?

A rollercoaster of mixed experiences followed. After the birth, one staff member loudly announced that baby Nina might have Down Syndrome. "The sudden silence that fell across the ward", says Shiner, "was deafening".

After a check for possible heart defects, "a neonatal consultant entered our side room holding rolled up leaflets in his left hand. With no words spoken, at that point I already knew we had an issue".

Throughout her early motherhood experience (which included at one point, being suspected of harming her baby) Shiner detected "a noticeable difference in terms of compassion, information giving, time at appointments for discussion and importantly the opportunity to be involved in decision making".

One staff member, the dietitian, "provided the gold standard experience, even being there during emergency admissions and communicating our needs across hospital trusts".

Shiner concludes that "For Nina and I, there is no one solitary experience, each appointment and interaction whether positive or negative bleeds into the next. These engagements at times, can be emotionally and cognitively exhausting for us both".

She asks healthcare professionals to learn more about the modern lives of individuals with Down syndrome, and reminds them that parents have "the determination to fight for our children...please do not make us".

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Tuesday October 24th 2023

Who gets heard on Covid?

Patient Experience Library (241093)

"Every story matters", says the Covid Inquiry. It goes on to say that "The pandemic affected every single person in the UK", and that "Every one of our experiences is unique".

Personal experiences are, indeed, unique. But sometimes large numbers of people can have similar experiences - of lockdown, say, or anxieties about vaccines, or of being banned from visiting a relative in a care home.

From common experiences, we can learn lessons. Those can help to improve policy and practice - both now, and in preparing for the next pandemic.

In early 2020, the Patient Experience Library started collecting and cataloguing published research on people's experiences of Covid-19. Now, as we head towards three years from the declaration of the first UK lockdown, we find ourselves in possession of a unique archive.

We have combed through the evidence base to try to understand whose experiences were recorded, and which aspects of life under Covid have been documented.

We found a research landscape in which some topics have been covered extensively while others remain virtually untouched. Equally, some communities come through loud and clear while others are almost voiceless.

We look at the implications for national NHS bodies and for research funders, and suggest ways to get better value and better learning. And if you want to explore the evidence base for yourself, you can skip straight to our interactive map to see what it looks like.

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Tuesday October 17th 2023

Child protection

Academy of Medical Royal Colleges (AoMRC) (240827)

This report shows that child and adolescent health is not, for the most part, a matter for hospitals. Their wellbeing relates much more closely to "the environment and social circumstances in which children grow up".

The facts are stark:
- Obesity affects 23% of Year 6 children in 2021/22 in England. 80% of obese young people remain obese as adults.
- In 2022, 29% of five year olds in England had tooth decay.
- Vaccination coverage has decreased in 13 out of 14 of the routine childhood vaccination programmes. The UK lost its WHO measles free status in 2018.
- 86% of UK cities exceed recommended limits for airborne particulate matter. The effects of air pollution have a greater impact on children and young people.
- Rates of poor mental health for children and young people are rising. Suicide is the leading cause of death in children and young people.

It can be hard for children to make their voices heard: conventional NHS mechanisms such as Friends and Family Test or national surveys tend to be hospital-based and can often be unavailable to, or inappropriate for, under 18s.

Reports like this are therefore important in their advocacy for this very large and very vulnerable proportion of the population.

The report makes a series of recommendations - on food regulation, dentistry, vaccinations, air quality and more. And it makes the point that "prevention is better than cure, but we must also recognise that prevention in childhood is better than prevention in adulthood".

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Tuesday October 10th 2023

Mostly about the people

Patient Experience Library (240958)

Digital healthcare is not just about clever technology. It is also about people and as with other aspects of healthcare, it needs to be patient-centred.

The 2016 Wachter Review, "Making IT Work" put it this way; "digitising effectively is not simply about the technology, it is mostly about the people". Its first recommendation was "Carry Out a Thoughtful Long-Term National Engagement Strategy".

That long-term engagement strategy never happened, so research into patient experience of digital healthcare has been piecemeal and sporadic. We wondered if it might be possible to map the evidence base - to find out which parts of the community have been invited to share their views, and to see what specific topics have been explored.

We found extensive duplication: nearly half of the evidence base is about service access and experience. We were left wondering why so many researchers had gone over the same ground so many times.

On healthcare data sharing, we found only 6 reports - less than 3% of the total. That was a surprise, given well-known public anxieties about the confidentiality and online security of their health records.

Equally, artificial intelligence in healthcare has been big news recently. But we found only 3 reports dealing with public experiences and views on health-related AI.

Our report offers further analysis, and an interactive online visualisation enables users to see for themselves what the evidence base looks like.

We hope that both the report and the visualisation will be explored by national bodies - in particular the National Institute for Health Research, NHS England and the Department for Health and Social Care. They could all help to put an end to the free-for-all in research on people's experiences of digital healthcare.

And, seven years after Wachter, they could, perhaps, "Carry Out a Thoughtful Long-Term National Engagement Strategy".

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Tuesday October 3rd 2023

Voice matters

Patient Experience Library (240896)

The importance of staff and patient voice has been starkly revealed in recent weeks - first by the sentencing of Lucy Letby, and then by Merope Mills’ call for a new Martha’s rule after the avoidable death of her daughter. In both cases, concerns were raised - and ignored.

The incidents remind us that listening to feedback is not some sort of optional extra. Sometimes it is a matter of life and death.

It is also a matter of justice. On page 3 of the latest edition of our quarterly magazine, we hear from Kath Sansom, a campaigner on the harms caused by pelvic mesh. Efforts by Kath and many others has now resulted in a government consultation on disclosure of industry payments to the healthcare sector. We join Kath in urging readers to have their say.

Patient voice is also an important component of 'epistemic justice': the question of what counts as valid evidence in healthcare. All too often, scientific knowledge is given top billing, while lived experience is dismissed as 'anecdotal evidence'.

On page 4 of the magazine, Nicole Thomas describes the genuine difficulties faced by researchers when trying to hear from patients, and how the Patient Experience Library has helped her to overcome some of the barriers.

As always, we also bring you the latest and best patient experience research, packaged in handy summaries for busy people. And we’re always keen to hear from our readers, so if you know of a standout report that we should be featuring, or if you want to submit a comment piece, get in touch!

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Tuesday September 26th 2023

Toolkits mountain

Patient Experience Library (240843)

Patient and public involvement (PPI) is, these days, a given in healthcare policy and practice. Providers, commissioners, policymakers and researchers all state the importance of hearing from service users about what matters to them.

This "involvement imperative" has given rise to a plethora of guidance notes, checklists, frameworks and toolkits, all purporting to show what good practice in PPI looks like. So we decided to carry out a mapping exercise, to see how much guidance there is, and to see if we could make sense of it all.

It turns out there is a mountain of the stuff. We found 536 toolkits - a vast landscape of well-meaning advice.

In a ten-year period between 2012 and 2022, PPI toolkits were being published at an average of one every two weeks. In the five years between 2016 and 2020, they were coming out at the rate of one a week.

There is extensive duplication. Over 100 toolkits offer general guidance on patient and public involvement. Another 100 or so offer guidance on involvement in research.

At the same time, there are big gaps. We found just 4 toolkits with a specific focus on engagement with Black and minority ethnic groups, 4 for LGBT patients and service users, and 4 for people with physical disabilities. For people with learning disabilities there was just one.

We might not have mapped the entire mountain. (Indeed, since we completed our analysis, a further 22 PPI toolkits have been published.) But we have seen enough of it to know that there is a serious lack of co-ordination and prioritisation.

Our report tells the full story of how we scaled the toolkits mountain, and what we saw from the top. You can also visit an interactive online visualisation, helping users to see for themselves what the toolkits are, and what topics they cover.

We hope that both the report and the visualisation will be explored by national bodies - in particular the National Institute for Health Research, NHS England's Health Inequalities Team and NHSE Library and Knowledge Services. They could, perhaps, help to end inequalities in healthcare by ending the inequalities in the guidance on involvement.

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Tuesday September 19th 2023

Patient Experience in England

Patient Experience Library (240759)

As the autumn begins, it is time once again to bring you our annual overview of research into people’s experiences in healthcare.

We summarise a swathe of national patient surveys, and then take a themed look at our top picks from wider evidence gathering - both via academic research and from community-based organisations.

In a health and social care system buckling under multiple pressures, it will come as no surprise to find that patients, too, are struggling.

Satisfaction with GP services is down to its lowest level for six years. In Urgent and Emergency care, survey results are worse than in all previous surveys back to 2016. The British Social Attitudes Survey found that overall satisfaction with the NHS is at the lowest level since the survey began in 1983.

On the plus side, there remains widespread public support for the founding principles of the NHS. In the British Social Attitudes Survey, 93% agreed that the NHS should be free of charge when you need it, and 82% said the NHS should primarily be funded through taxes.

Wider research covers topics such as waiting list challenges, patient safety and digital healthcare. But in a sign of the times, we also have a section on engagement and misinformation. Public attitudes these days are shaped as much by 'fake news' as by reliable information sources - and as the research indicates, professional attitudes can also succumb.

Our final section covers financial matters, including the fact that the local Healthwatch network now receives less funding than its predecessor (the Local Involvement Network) did over ten years ago. Healthwatch, in the wake of the Mid Staffordshire disaster, was meant to strengthen patient voice. Financially, however, it has been weakened.

In a healthcare system beset with difficulties, that does not seem like good policy.

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Tuesday September 12th 2023

Whispers on the wind

Department of Health and Social Care (240077)

This rapid review is a response to concerns about information to support patient safety in mental health inpatient care. In particular, it sought to understand how data and evidence was collected, and then used to identify and mitigate risks.

The good news is that "There was a consensus that hearing from patients, carers and staff was essential". However, that consensus was frustrated by practical and organisational barriers.

The review found that routes to give feedback were not clear or were difficult or time-consuming to use. Patients, carers and staff felt that their feedback was not listened to or acted on. They also sometimes felt unable to raise concerns for fear of the repercussions to themselves and others.

There were further problems with data quality. The review found that for data to be effective in providing early alerts on patient safety, it had to be available in as close to real time as possible. However, it "often has a time lag of weeks or months before it reaches frontline teams and local leaders".

One particularly worrying finding was that "At all levels, staff could recall almost no feedback from reports from national or regional data sets... that was useful to help them do their jobs".

The review saw good practice as well - for example, where providers had experts by experience on their boards and in their leadership meetings. Some used apps to allow patients, carers and staff the opportunity to give quick, real time feedback, and some had "high quality dashboards that gathered and triangulated data". Alongside all of this were "outstanding examples of action-orientated daily reviews in ward safety huddles".

A key learning point is "the importance of ‘soft’ intelligence - as one leader put it, 'whispers on the wind' - and the need for leaders to act on information from all sources, rather than relying on one dashboard or data set". And beyond that is the fact that "data on its own is not enough - it has to lead to action".

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Tuesday September 5th 2023

First, speak no harm

Scottish Government (240015)

In July 2020, Baroness Cumberlege published First Do No Harm, the review of medicines and medical devices, including pelvic mesh. Three years on, the pain continues.

This Scottish review of case records relating to transvaginal mesh details some of the pain. Women affected by it talk of physical pain, sometimes acute, sometimes chronic, in hips, groin, legs and back. They talk of the mental toll of anxiety and insomnia. And they talk of the emotional anguish of feeling a loss of trust in healthcare professionals, and a loss of their own identities - the sense that they have become a different, and diminished, person.

One section of the report discusses communication and clarity of language. It says that "The importance of communication which is accurate, transparent and understood is the foundation of good clinical care", but then goes on to describe ways in which that foundation was undermined by misleading communication.

The two key mesh devices differ in how they are surgically placed, with variation in procedures and risk. But the differences were not always made clear. Sometimes polypropylene mesh was described as "tape", giving women the impression of something that "didn't sound too bad". They were not informed of the size of the device, and not always told that the device would be permanent. None of the women involved in the Case Record Review had been shown an example of the device.

Many women were told that mesh surgery was a "gold standard" treatment. Why? Because, says the report, "the early information that was given to patients [was] largely informed and written by the industry... [and] was described using only positive language. This was because there appears to be no requirement for the information to be explicit regarding disclosure of potential risks".

The review is clear that a "consequence of a failure to clearly communicate is the impact that this will have on the patient-clinician relationship. Trust may be diminished or eroded altogether". It goes on to say that "we cannot underestimate the lasting impact of the erosion of trust or the patient’s willingness to engage in the future with healthcare".

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Wednesday August 30th 2023

Advance care planning: what patients think.

BMC - Palliative Care (240462)

This paper starts with the observation that advance care planning (ACP) helps people with serious illnesses or deteriorating health to think ahead and plan for what might happen. However "uptake remains low internationally". To find out why, the researchers explored public perceptions of ACP.

The study team carried out a rapid scoping review, and grouped their findings into four domains, as follows:

- Knowledge and engagement. Public knowledge of ACP is low. The literature indicates that patients and public have often never heard of ACP, and would not know how to find out about it. Even with good knowledge, engagement with ACP may be poor. The paper states that "Familiarity with ACP concepts did not necessarily translate into active participation in ACP".
- Fear, mistrust and avoidance. Some patients feared they would be ‘tempting fate’ if they became more open to ACP conversations. Many studies described ACP as being too emotional or distressing for patients and families to engage with. Other studies revealed patients' fears that their expressed preferences and wishes would not be carried out irrespective of having a documented ACP.
- Misconceptions and misinformation. Some patients seem to confuse advance care planning with end of life care. And end of life care itself is seen as care in the last days or hours before death. Accordingly, patients can see attempts to discuss ACP as coming too soon.
- Public expectations of healthcare practitioners. Patients can hold an expectation that it is up to healthcare staff to initiate conversations about ACP. This could lead patients not to raise the topic themselves.

The authors note that "Current debates around future directions for ACP... concentrate on professional and policy perspectives". But, they say, "Although ACP research includes patient and public perceptions, more attention needs to be paid to them in future ACP developments".

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Tuesday August 22nd 2023

Still waiting for parity of esteem

House of Commons Public Accounts Committee (PAC) (240370)

This report from the House of Commons Public Accounts Committee acknowledges that NHS England (NHSE) has made progress in improving and expanding mental health services. But, it says, this was "from a low base".

Only around one in three people with a mental health need have access to mental health services. Around 1.2 million people are on the waiting list for community mental health services. Rising demand continues to outstrip service provision.

The Committee makes the point that "Many stakeholders have welcomed the introduction of new access targets and waiting times standards". But, it says, "the standards only cover a minority of people who are referred to mental health services and, despite defining further standards more than a year ago, there are still no plans to roll these out".

In the meantime, data for NHS mental health services (described by the report as "vital for managing performance, developing new services and addressing inequalities") lags behind that available for physical health services. Furthermore, "many service providers [are] still not submitting data as required".

The data gap includes patient experience. "Of 29 integrated care boards surveyed by the NAO [National Audit Office], only four said they had all or most of the data they needed to assess patient and user experiences, and none of them felt this in relation to patient outcomes".

The Committee reminds us that "In 2011, the government set out its goal of achieving 'parity of esteem' between mental and physical health services". But it did so "without setting out what achieving it meant in practical terms".

It recalls that in 2019, the Committee highlighted the need for the government to define 'parity of esteem' clearly, including setting out the criteria it will use to measure progress. But, it says, "The government...has still not done so".

Other groups too, according to the report, want to know what parity of esteem actually means. "Many stakeholders told us that a clear definition, objectives and roadmap are important to understand progress towards this end goal". It says that NHSE would also welcome a definition, but "the Department’s current position is not to specify one".

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Tuesday August 15th 2023

Unheard voices of staff

National Guardian Freedom to Speak Up (240456)

It is well known that there are close alignments between staff experience and patient experience in the NHS. So as health services struggle under multiple pressures, the voices of staff, as well as patients, need to be loud and clear.

This report on the latest survey of Freedom to Speak Up Guardians reinforces the point. "Speaking up is a gift", it says. But it warns that "The benefits of Freedom to Speak Up can only be realised if leaders and board members are inquisitive about what is presented to them and are keen to embrace the learning".

Unfortunately, a readiness to listen and learn is not always apparent.

Two thirds (66%) of survey respondents saw "fear of detriment" as having a noticeable or very strong impact as a barrier to workers speaking up. Barriers included professional hierarchies and seniority. Added to this, one third (34%) of respondents thought that "attitudes towards protected characteristics" (such as gender, ethnicity or sexual orientation) could also affect workers' ability to speak up.

A further dampening effect comes from "futility" - the concern that nothing will be done. Here, two-thirds of respondents (67%) saw futility as a 'noticeable' or 'very strong' barrier to workers in their organisation speaking up. Disturbingly, this represents an eight percentage point increase over the previous survey (58% in 2021).

The report notes that the survey findings are in line with the most recent NHS Staff Survey, which identified "a deterioration in the confidence to speak up by healthcare workers". It also, ominously, states that "Many organisations still do not have a Freedom to Speak Up Guardian registered with and trained by the National Guardian’s Office".

The National Guardian's assessment is blunt: "This decline in perceptions concerns me, as it should all leaders, whether they are providers, regulators, or government". And, she says, "I fear that in this atmosphere of huge challenge for the sector, we are not always hearing what matters, and what can help us improve - the voices of our people".

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Tuesday August 8th 2023

Broken trust

Parliamentary and Health Service Ombudsman (240050)

"There is no shortage of programmes, policies, new initiatives and roles to try to reduce instances of avoidable harm", says this report from the Parliamentary and Health Service Ombudsman. But, it says, "there is a disconnect between the increasing levels of activity... and the level of progress we see on the frontline".

The report states that the statistics on patient harm "remain stark". It refers to the estimated 11,000 avoidable deaths every year in the NHS, and the "thousands more" patients seriously harmed. Behind these numbers are "the stories of individuals and their families and friends, whose lives have been shattered as a result of avoidable harm".

The PHSO recognises that healthcare staff, too, are affected by harmful organisational cultures: "nearly 40% reported they did not feel safe to speak up about anything that concerns them in their organisation. More worrying still, less than half of staff felt confident their organisation would address their concern".

The report makes a number of recommendations, one of which is "creating a system that is coherent and easier to navigate". This is based on the observation that "Political leaders have created a confusing landscape of organisations", including the Healthcare Safety Investigation Branch (HSIB), the Patient Safety Commissioner, PHSO, NHS England, NHS Resolution and "at least a dozen different health and care regulators". There are, says the report, "significant overlaps in functions, which create uncertainty about who is responsible for what".

But the biggest threat to patient safety, according to the PHSO, is "a system at breaking point". The Ombudsman recognises that "the NHS itself can only go so far in improving patient safety". It also needs "concerted and sustained action from Government... getting past politics to put patient safety at the very top of the agenda".

"The NHS cannot wait any longer", says the report, "Nor can the people who use it or work in it".

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Tuesday August 1st 2023

Life with Long Covid

NHS England - Ipsos (240309)

The crisis phase of the Covid-19 pandemic might be over. But the long tail persists - not least for the up to 2 million people experiencing Long Covid.

This study, commissioned by NHS England's Insight and Feedback Team, looked at enablers and barriers to care for Long Covid, and examined public attitudes towards the condition.

Lack of awareness is a particular problem. While people are generally aware that Long Covid exists, they are much less clear about what it actually is. Turning to advocacy and support groups may give mixed results: "advocates reported very low or non-existent awareness of Long COVID services, making it difficult for them to signpost people to services".

The pathway to Long Covid services relies on GPs. But, says the report, "patient access to appointments are well-known challenges...this produces a perceived bottleneck however and places GPs in a ‘gatekeeping’ role, which impacts on how equitable and accessible Long COVID services are perceived to be".

One consequence is that people "tended to find the referral process complex and time consuming, particularly in cases where they felt they had to chase or drive progress".

Another consequence is that patents are self-managing their symptoms outside the support structures of the NHS. The report notes that "People had experimented with lifestyle changes... either because they had given up hope of finding a cure, or while they waited for treatments". And while peer support groups and online forums provide an important source of fellowship and learning, the report warns that "misinformation is rife".

People who can get to a Long Covid clinic are positive about the experience. "They described feeling a mixture of gratitude and relief... particularly that their condition had a name and that others were also experiencing similar ongoing symptoms".

The report makes various recommendations - on advice and information, on outreach to vulnerable groups, and on good practice in clinics. It also recommends partnership between the NHS and non-NHS groups, including community organisations and peer support networks.

For a nation learning to "live with Covid", this report is a worthwhile read.

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Tuesday July 25th 2023

Women's burden of care

Journal of the American Medical Association (239922)

"The COVID-19 pandemic created a crisis of care" says this paper, "with millions of people now more reliant on unpaid caregiving". It goes on to say that "The burden of unpaid care needs continues to disproportionately fall on women, with devastating effects on health, well-being, and labor force participation".

The analysis is from the US, but contains much that will be familiar to UK readers. The authors make the point that "deep-rooted norms result in family caregiving still being widely perceived as so-called women’s work... Accordingly, US women provide 2.2 times more unpaid family caregiving on a time-per-day basis relative to men".

Unpaid care is also becoming more complicated: "More than half of all caregivers perform medical tasks typically done by health care workers [and] are also expected to help navigate complicated health care and social service systems, understand and track complex health information, and serve as surrogate care coordinators, advocates, and decision-makers".

At least some of this is driven by healthcare reforms, which are decentralising care away from inpatient settings toward the home and community. This is "based on the implicit assumption that family caregivers - the majority of whom are women - will provide this increasingly complex care at home without additional support".

The paper states that caregiving can be personally rewarding. But it also notes harmful consequences: depression, anxiety, and social isolation; impaired physical health; decreased preventive and self-care behaviours; greater acute care use; and even increased mortality. At least some of this arises from the fact that "60% of caregivers are juggling unpaid caregiving with paid job responsibilities".

The authors see a pressing need for reforms to policies that largely exclude family caregivers from receiving direct services or financial and other support, limiting them instead to the person directly receiving care. "This", they say, "is detrimental to both patient and caregiver health".

The paper concludes that "The COVID-19 pandemic has spotlighted the critical role of unpaid family caregiving [and] how women disproportionately assume these responsibilities". "Challenging this gendered dimension of family life", it says, "is essential to better supporting caregivers".

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Tuesday July 18th 2023

Glaring gaps in mental health

Environment, Food and Rural Affairs Select Committee (239716)

In 2011, the coalition government published "No Health Without Mental Health". Described as a cross-government strategy, it had a central ambition: "establish parity of esteem between services for people with mental and physical health problems".

Twelve years later, this report from the House of Commons Environment, Food and Rural Affairs Committee is clear that, in rural areas at least, "parity of esteem" is still a very long way off.

The starting point is that the picture of rural mental health across England is "complicated and incomplete due to gaps in health data, the suppression of demand by over-centralised services, and the under-reporting of rural deprivation which is inextricably linked to poor mental well-being".

The Committee points out that "access to nature and the countryside is consistently identified as beneficial for people’s mental health". But "the isolation inherent in rural living represents a significant challenge to the mental health of adults, children, and young people living in rural areas".

A key aspect of isolation is that "NHS mental health services are often not fairly accessible for rural communities, with services largely centred in towns and cities creating barriers to access, compounded by the limitations and weaknesses of rural public transport and digital connectivity".

Inadequate services and opportunities for young people is another feature: "Far too much avoidable demand ends up at the door of Child and Adolescent Mental Health Services (CAMHS) in rural areas because of a fundamental lack of social infrastructure and youth services".

The report notes that "The Government’s flagship levelling up agenda includes over-arching reference to the 'rural proofing' of policy". It says that "The fundamental need to provide equitable access to effective services for mental health and well-being must be part of this picture".

The Committee does not suggest that there is a mental health crisis in rural England. But, it says, "there are more than enough glaring gaps, and obvious red flags, to warrant urgent and meaningful action... rather than having to wait for an inevitable crisis to create a political imperative and free the necessary resource".

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Tuesday July 11th 2023

Invisible no more

BMJ (240141)

This paper starts with a frank statement: "Covid-19 brought radical shifts in healthcare policies and practice, including the abandonment of families as partners in care".

Can such a statement be justified? Yes, say the authors, who all have experience of informal or unpaid caring. Their home countries of England, Canada and Australia all saw the swift imposition of strict visiting bans during the crisis phase of the pandemic. In England, the practice of blanket bans on visiting in hospital and care homes was subsequently condemned by the House of Lords.

The bans were introduced as part of well-intended infection control measures. But they had unintended consequences, including poorer patient experience and a greater burden on overstretched staff. The burden was not just physical: "Service providers experienced the moral anguish of turning families away and maintaining forced separation between people who were in clear distress".

The authors argue that the exclusion of family carers flies in the face of evidence that they bolster patient health and healthcare systems. In all three countries, the financial value of informal care runs into billions of dollars or pounds every year. Additionally, patients with supportive families are more likely to adhere to treatment plans, have better communication with their clinicians, and have better clinical outcomes and quality of life.

While visiting bans have eased, wider exclusion continues. "Debates within health systems about 'living with Covid-19' focus on matters such as workforce, delivery models, and funding, but not on the role of families". To counter this, "government policies should formally recognise families as care givers, including paying for their labour, offering universal respite funding and services, and providing care giver benefits".

The authors conclude that "Valuing family care giving will finally make unpaid care giving visible, enable families to improve patient care and outcomes, support health systems, and better prepare systems for future healthcare crises".

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Tuesday July 4th 2023

Partners in learning

Patient Experience Library (240117)

The idea of patients as "partners in care" has been gaining ground for a while. With a growth in long term conditions, and with more and more people "self-managing" their health and wellbeing, it makes sense for clinicians and patients to work closely together.

So when it comes to patient experience work, should we think of patients and service users as "partners in learning"?

In the summer edition of our quarterly magazine, Maddie describes the experience of being disbelieved when she tried to share her own knowledge of her own condition. She calls for "trustful conversations" through co-production, where power dynamics between professionals and patients are actively examined, and people work together as one team, with everyone’s knowledge valuable and valued.

Our second contributor, Karl Roberts, picks up the theme of learning with patients. He describes an approach developed by the NHS Leadership Academy's Patient Faculty, in which patient partners and staff "plan together, train together and work together". As the Leadership Academy merges with NHS England, Karl makes the case for the Patient Faculty's legacy to be remembered and built on, and for the NHS to learn "with" patients, as much as "from" them.

As always, we also bring you the latest and best patient experience research, packaged in handy summaries for busy people. And we’re always keen to hear from our readers, so if you know of a standout report that we should be featuring, or if you want to submit a comment piece, get in touch!

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Tuesday June 27th 2023

The hidden realities of personal budgets

British Journal of Social Work (239621)

"For us and many disabled people", say the authors of this paper, "personal budgets are a tool for liberation". But, they say, "this comes at a cost to the individual in terms of practical and emotional labour".

Liberation comes in the form of "self-determination over our lives". Personal budgets can give disabled people freedom from institutionalised care, as well as freedom to buy services and support to suit their own priorities. But within these freedoms are "hidden realities".

The authors reflect on how words like ‘fight’ and ‘battle’ are associated with the process of gaining a budget and maintaining the support they need. They have had to educate themselves about rights, laws and policies, in order to advocate for themselves. Even so, their advocacy is from a position of "being seen as inferior because we do not hold a professional status". It is also on top of the task of managing the disabling conditions that they are trying to get support for in the first place.

After winning a personal budget, the work continues. Recruiting a personal assistant involves advertising and interviewing, along with the difficulty of selling a job that is underpaid, and undervalued by society.

Then there is the task of managing the support: producing staff rotas, recording leave, maintaining timesheets, seeking training, managing employees, and submitting spending proof to the council.

"The relentlessness of this work", they say, "can and does cause burnout". Indeed, some disabled people have abandoned self-directed support in spite of the increased quality of life a personal budget provided.

The authors call for the voices and experiences of disabled people to be heard in order to inform the approaches of commissioners, social workers, policy makers and other individual employers. "Person-centred support is rightly celebrated for the choice and control it affords disabled people but managing this should not come at a cost to our health and well-being and more support needs to be in place."

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Tuesday June 20th 2023

Fair care for diabetes

Diabetes UK (239577)

There are, says this report, "stark inequalities in diabetes care and management, which ultimately lead to worse health outcomes for those in the most deprived areas".

People from South Asian, Black African, and Black Caribbean backgrounds, for example, are two to four times more likely to develop type 2 diabetes, frequently at a younger age and lower BMI than White Europeans.

Deprivation is also key factor in diabetes inequality, with 24% of people diagnosed with type 2 diabetes living in the most deprived areas, compared to 15% in the least deprived.

A further factor is geographical variations. In some parts of England, health services have restored their diabetes care to above pre-pandemic levels. But the majority have not, with the lowest performing areas seeing only 1 in 10 people with diabetes get all of their checks.

The consequences can be serious - including amputation, stroke, heart attack and heart failure. There are emotional costs too - not just from lack of access to health services, but also from issues such as the increased cost of living and difficulties maintaining healthy diets.

The report makes a series of recommendations - both for government and for Integrated Care Boards. It concludes that "With the right care and support, people living with diabetes can lead healthy, productive lives". And, it says, "NHS England and ICBs could shift the focus of healthcare to empowering people with long-term conditions to stay well, rather than treating the devastating and complex consequences down the line".

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Tuesday June 13th 2023

Hearing from bereaved families

Inquest (239529)

In 2021, the Justice Select Committee called for major reform of the inquest system, and stated that much more needs to be done to put bereaved families at the heart of the process.

This report from a Family Consultation Day shows why. It looks at the experiences of people whose relatives died under the care of mental health services. It says that "Too many families told us they felt marginalised from before their loved one died, right up until the inquest hearing and after".

Key findings from the Family Consultation Day included:
- Inadequate communication. One example was that after a death, care providers were already looking to protect their own reputations and positions. This was described as lacking respect for those that had died and for grieving families.
- Poor information and support. There was a lack of advice on bereavement support, what to expect of investigations and inquests, and the coroner’s role. Some did not know they could request a post-mortem.
- Opaque investigations. Families described flaws in the independence, impartiality and quality of investigations. Many families remain angry, suspicious and distressed at the ways care providers conducted investigations. Once inquests got underway, families felt "utterly unprepared for what was to come". The onus fell on them to work out their rights to legal representation, and to find the money to pay for it. Some found inquests taking place in venues that were hard to travel to. Some found the process itself unnecessarily adversarial. Some found themselves having to deal with the press and media.

When asked what needs to change, the families' comments echoed those of so many others who have experienced harm in healthcare: "If one thing united the group it was the desire to ensure others were not placed in the same position as them in the years to come".

There are many recommendations in the report, all coming from the families who took part in the Consultation Day. And all stem from the sense that "Ultimately, families are faced with a completely alien system that has inconsistent levels of information, empathy, openness and sensitivity".

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Tuesday June 6th 2023

Who's excluded?

BMJ (239097)

Discussions about digital healthcare tend to focus on the technology: the platforms through which patients can book appointments, the apps that help them with physical and emotional wellbeing, or the increasing role of AI in helping clinicians to make sense of big data.

But digital healthcare is not just about fancy tech and clever software. It's also about how patients organise and mobilise online. This article, by BMJ editor and cancer patient Tessa Richards, is a case in point.

It describes a webinar flagged by Richards' cancer Facebook group. She admits approaching it with a degree of cynicism, anticipating an "experts talk at patients" experience. Instead, she found a conference organised and moderated by patients, where the debate was assertive, informed and supportive.

In a reversal of the standard "patients included" approach to big healthcare jamborees, this conference featured professionals who were included not by right, but because they had been hand picked and invited by the patients.

This is part of a growing trend. Patients these days are not waiting to be invited to engage. They are doing things for themselves, in online communities. Other examples are the Melanoma Patient Network of Europe, featured in this edition of our quarterly magazine (page 4), and the Light Collective, shown here (page 4).

There is a lot of talk in digital healthcare about digital exclusion. Usually the assumption is that the people at risk of exclusion are the patients. Rarely, if ever, do health professionals consider their own risk of exclusion from online debates and initiatives being run by patients.

When patients organise online, they can travel light and move fast, in ways that large healthcare institutions can't. Health professionals need to keep up - or risk being left out.

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Wednesday May 31st 2023

How restrictive practices affect women

Wiley - Journal of Psychiatric and Mental Health Nursing (239091)

The Mental Health Act allows a person to be detained in hospital in order to protect their safety or the safety of others. Alongside this are restrictive practices, ranging from restraint, seclusion and rapid tranquilisation to more subtle practices such as locked doors or restricted mobile phone access.

There is a difficult balance: restrictive practices are in place to promote safety but they can also limit a person's freedom, rights and daily activities.

The starting point for this study was that although the potentially damaging effect of restrictive practices is likely to be experienced by both men and women, it is possible that restrictive practices are harder for women. That is because restrictions in inpatient settings could mirror the lack of power and control that women hold in society as well as abusive life experiences they might have experienced. Further, women accessing mental health services are more likely than men to have suffered abuse both in childhood and as adults, and female inpatients are significantly more likely to have a history of sexual abuse than male inpatients.

From semi-structured interviews, an overarching theme of powerlessness emerged. Within that were four sub-themes:
- Restrictions perceived as punitive. Women felt that threats of restrictive practices were used to ensure they followed the rules. Loss of privileges were seen as ways for staff to keep control.
- Not being heard. One example was ward rounds where women felt unable to contribute to decisions that were made about restrictions. Some women described having to speak aggressively, or protest in an attempt to be heard.
- Impact of restrictions on relationships. Restrictions on visitors or mobile phone access affected the ability to form and maintain relationships. Some women felt 'awkward and ashamed' in front of their friends and families because of the restrictions placed upon them.
- Safety and support. Women felt that some rules needed to be in place to keep the ward calm and settled. Rules providing structure and routine were seen as good for patients' mental health. However, as their mental health improved, they perceived restrictions as more punitive.

The authors emphasise the importance of reflecting on how gender might influence treatment; of being aware of women's different experiences of trauma; and of wider social and political issues resulting in the oppression of women.

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Tuesday May 23rd 2023

An unusual step

Infected Blood Inquiry (239078)

Sir Brian Langstaff, Chair of the Infected Blood Inquiry, describes this interim report as "an unusual step".

It is unusual because even before the Inquiry has completed its work and presented its findings, it is recommending a compensation scheme for people harmed by infected blood.

The scandal has been described as "the worst treatment disaster in the history of the NHS". People with haemophilia were particularly affected but so were many others, given transfusions for a range of conditions and circumstances.

One woman was infected in utero with HIV after her mother had a transfusion. Her sisters died, aged five and three, then her father, then her mother.

Around 380 children with bleeding disorders were infected with HIV and more than half have now died.

Other people were infected with Hepatitis C or Hepatitis B. The latter aggravates both Hep C and HIV, making the effects of those diseases worse. As well as losing their health, many lost their jobs. Family members have turned into carers.

Successive Secretaries of State - Andy Burnham, Jeremy Hunt, Matt Hancock - acknowledge the harm caused not just by the treatment, but by a persistent failure of response at the government level, which has compounded the harm.

Sir Brian has this to say: "People infected and affected have over decades sought recognition that wrongs had been done to them, and had been rejected". He goes on, "Once it is accepted, as it has been, that compensation should be paid, then it should plainly be paid as soon as possible. Many who should benefit from compensation are now on borrowed time. They know too many who have already died".

"I cannot in conscience", he says, "contribute to that further harm...This is why I am taking the unusual step of issuing one set of recommendations in advance of all others".

His recommendation? "It is time to put this right... a compensation scheme should be set up now and it should begin work this year".

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Tuesday May 16th 2023

Technology-enabled lives

TEC Action Alliance (239031)

"Technology is central to our everyday lives" says this challenge paper from the TEC Action Alliance. But "all too often we separate it out for special treatment when it comes to supporting our care or health needs, as opposed to viewing it as a core tool which can help us live the lives we want to lead".

The focus of the report is technology-enabled care, or TEC for short. There are various examples of how it works in practice, including the case of "George" (a fictional persona) who has cancer. TEC can help George with pre-admissions screening, virtual appointments and remote monitoring. It can help him to manage multiple medications, and to manage his direct payments. Importantly for person-centred and holistic care, it can also help him to stay connected with family and friends who are central to his wellbeing and recovery.

The report also offers real-life case studies, as well as survey findings on public attitudes to TEC. But it notes that debates on digital healthcare are often about "digitising social care, health and housing: re-engineering systems and processes".

We don't hear so much about "technology-enabled lives, where the ambitions and aspirations of the individual come first, made possible by digital". The debate is "over-focused on the needs of the NHS", with less attention paid to the benefits to social care systems and even less on the benefits to people and their communities.

"To change this mindset", say the authors, "we must amplify the voice of people with lived experience so that we deploy technology to support what they want rather than what suits the system".

Their conclusion is that "It should go without saying that a better understanding of the needs and aspirations of people means that products and services can be developed that are more successful in meeting their needs".

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Wednesday May 10th 2023

Self-rationing healthcare

Prescription Charges Coalition (PCC) (238991)

To understand patient experience, we sometimes have to go beyond the basic "how was it for you?" approach of things like the Friends and Family Test.

Long term conditions are a case in point. NHS strategies from the Long Term plan downwards say that with a growth in long term conditions, we need to encourage "self-management", with people looking after themselves in their own homes and communities. But how well do we understand people's experiences of self-management?

This report looks at one important aspect: prescription charges. It starts with some useful facts:
- England is the only UK country where prescription charges still exist, having been abolished in Wales, Northern Ireland and Scotland.
- Charges have risen almost every year since 1979.
- Most of the income to the NHS from prescription charges comes from working-age people with long term conditions.
- Aside from the addition of cancer in 2009, the list of exempt conditions has not changed since 1968, even though there are new conditions like HIV, and some, like cystic fibrosis, which people can now live with for much longer.

Some people can get help with the costs - but only if they know help is available. In this survey, 83% of respondents had not heard of the NHS Low Income Scheme, and 38% only found out about the Prescription Prepayment Certificate more than a year after their diagnosis with a long term condition.

30% of respondents reported missing, or taking a lower dose of their medication, and 64% said they would be more likely to take medicine as prescribed if prescriptions were free.

The authors conclude that "charging working-age people with long term conditions for prescriptions is leading to self-rationing of medications". And they say that "This, in turn, is leading to increased pressure on the NHS and poorer health outcomes".

Access to medication is a vital part of self-management, and self-management is a key thrust of NHS strategies. So it is hard to argue with the report's finding that "the prescription charge exemption system needs urgent reform".

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Wednesday May 3rd 2023

A familiar pattern

Niche Health and Social Care Consulting (238923)

Last week's Featured Report was a paper which asked whether the NHS - ten years after Mid Staffordshire and the Francis Inquiry - is safer and more open.

This week, sadly, we feature a report which shows just how much work remains to be done.

The report sets out the findings of an investigation into safety and quality issues in Child and Adolescent Mental Health Services (CAMHS) at the Tees, Esk and Wear Valleys NHS Foundation Trust. Issues included multiple instances of inappropriate restraint and, worst of all, the deaths of three young women.

The events occurred in a care environment in which there was "insufficient attention and importance being applied to risk". Family members and carers said they "could not safely raise concerns", and "felt actively judged and undermined by staff". There was "a fundamental and consistent failure to inform parents about incidents involving their children under Duty of Candour".

There is a great deal more in this report, and it all fits with a pattern that, after Mid Staffs, Morecambe Bay, Gosport, East Kent and others, has become all too familiar.

Elements of the pattern include the fact that the key unit - West Lane Hospital - was geographically isolated, and a closed culture developed. There was a constant turnover of staff, and tension between different staff teams. Risk registers were poorly maintained. Actions, when required, lacked urgency. Staff training was inadequate. Local observation rules were applied, inconsistent with established Trust-wide policy.

Over and above all of this was a complacent governance. The Board was "overly accepting of verbal reassurance in relation to quality and safety" and displayed "insufficient curiosity". Reporting was "disjointed" and the Board Assurance Framework was "detached from the reality of the organisation".

The investigators state that "It is clear from our research that patients and their families (and some staff) were ignored and that their concerns and complaints are now found to be, on the whole, justified". This, too, is the kind of statement that we have seen too many times before.

The message for Boards and senior NHS managers is clear: dismissive attitudes towards patient experience lie at the heart of harm. Two years ago, our Inadmissible Evidence report called for an end to this double standard in evidence-based practice. Sadly, there is still no end in sight.

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Tuesday April 25th 2023

Listening. Learning. Leading.

BMJ Editorials (238850)

Ten years have now passed since the publication of the Francis Inquiry's findings on avoidable harm at the Mid Staffordshire NHS Foundation Trust.

The government's response, says this paper, "promised wide ranging interventions and legal and regulatory reforms". The question posed by the authors is "What is the legacy for the safety of patients in England?".

There has undoubtedly been action. The duty of candour has been introduced, along with Freedom to Speak Up Guardians. There have been changes to Care Quality Commission inspections, and the Healthcare Safety Investigation Branch has been set up.

In spite of all this, "Recurrent organisational catastrophes remain a disheartening reality". Oddly, the paper does not name any. But the roll call includes maternity services at Morecambe Bay, Shrewsbury & Telford and East Kent. The authors might also be thinking of medicines and medical devices - notably Primodos, Sodium Valproate and pelvic mesh. Perhaps they are also considering individual actors such as breast surgeon Ian Paterson, whose criminal activities went largely unchallenged by his employers.

The authors point to a common thread: "Failure to listen to the voices of patients and carers is a recurrent theme... and one that the system seems incapable of heeding".

There are three simple recommendations:
Listening. "Psychological safety - a sense among staff and patients that it is safe to speak up without fear of retaliation or being undermined - is critical."
Learning. "Collating, and acting on intelligence, quantitative and qualitative."
Leadership. "Making patients 'the first and foremost consideration' [with] an uncompromising focus on addressing cultural and behavioural problems."

With the ink still fresh on the East Kent report, and as we brace ourselves for the Ockenden report on Nottingham, these points need to be taken seriously.

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Sunday April 16th 2023

Strong support for the NHS

The Health Foundation (238784)

The nurses' and junior doctors' strikes continue to rumble on, with Pat Cullen of the RCN warning of strikes until Christmas, and the government looking to tough it out.

So we know the positions of the key players - but what do patients and public think?

This paper from the Health Foundation finds, unsurprisingly, that "people are deeply concerned about the state of the NHS". Only a third think the NHS is providing a good service nationally, down from previous polling in 2022 and 2021.

63% think the general standard of care has deteriorated in the last 12 months, and only 9% expect standards to improve.

Across the nations of the UK, just 10% think their own national government has the right policies for the NHS.

In spite of all this, public support for the founding principles of the NHS remains, according to the Health Foundation, "rock solid". 90% want access free at the point of delivery, 89% want a comprehensive service and 84% want the NHS funded through taxation. "Each of these principles", says the report, "commands majority support right across the party-political spectrum".

Asked about priorities, 39% wanted to see more staff in the NHS, 35% wanted shorter waiting times for routine tests and operations,and 31% wanted shorter waits in A&E.

The authors state that "While both main parties have so far preferred to talk about reforming the health service rather than tax rises or spending increases, 82% of the public think the NHS needs an increase in funding, including 63% of Conservative voters". They warn that "With just 8% of people in England convinced the UK government has the right approach to the NHS, our latest survey should ring alarm bells for the Sunak government".

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Wednesday April 12th 2023

Prison healthcare and families

Pact (238612)

"Individuals in our criminal justice system represent some of the most vulnerable people in our communities", says this report. It adds that "contrary to prison providing an opportunity to address health inequalities, evidence suggests that it often has a significant detrimental impact on health and wellbeing".

Families can help - not just through supportive relationships but also by alerting prison officers to matters such as "mental health, drug use (prescription and illicit), propensity to violence and risk to self". Indeed, NHS England states that "families are important to recovery and carers often hold information that allows services to work more effectively".

This study, based on interviews with families supporting patients in custody, offers useful insight, starting with the fact that most had witnessed "a significant decline in their loved ones’ mental and physical health during their custodial sentence". However, their ability to intervene was hampered by a lack of recognition for their role as carers, advocates, sources of information and vital support.

The report suggests a need to engage families at all stages in the criminal justice system, including arrest and police custody, during the judicial process, at reception into prison and during prison transfer, and at the point of release and during resettlement.

Through all of this, families themselves need to remain resilient. This can be hard when they "face the dual impact of losing a loved one to imprisonment as well as the anxiety associated with a loved one’s poor health". Their needs include provision of accurate information about prison life and how to support a loved one in custody; information and guidance about how to support their loved ones’ health and wellbeing needs; and family-friendly, non-judgemental support.

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Tuesday April 4th 2023

People and politics in healthcare

Patient Experience Library (239051)

Is healthcare personal or political? The answer, of course, is that it is both, and the contributors to the latest edition of our quarterly magazine unpick both strands.

Charlotte Augst, until recently the CEO of the National Voices coalition of health and care charities, argues that an NHS creaking from years of underinvestment needs a 'laser sharp focus on the experience of people using services'.

NHS strategists, she says, like to talk about ICBs, place-based strategies and provider collaboratives. But these mean nothing to people stuck in ambulance queues, or on waiting lists, or in GP call handling systems. Augst makes the point that patients are also voters, and NHS leaders need to offer pragmatic solutions to stave off political as well as personal discontent.

Andrea Downing is founder of the Light Collective, which campaigns for the rights of patients in the digital health sphere. She looks at the advertising and marketing tactics used by digital medicine companies to extract health information from users. Who sees what data, and how are specific patient populations targeted? And to what extent do those companies comply with their own privacy policies?

The answers should be of concern to legislators and regulators, as well as to patients.

As always, we also bring you the latest and best patient experience research, packaged in handy summaries for busy people. And we’re always keen to hear from our readers, so if you know of a standout report that we should be featuring, or if you want to submit a comment piece, get in touch!

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Tuesday March 28th 2023

Openness in healthcare

Journal of Health Services Research and Policy (238580)

"Openness, transparency and candour are recognised as ethical responsibilities of health care organisations", says this paper, and yet "delivering on these commitments in health care systems has often proved challenging".

The authors point to Mid-Staffordshire as a prompt for extensive policy interventions to promote openness. But they go on to say that subsequent scandals "have continued to identify pathological organisational behaviours and norms, including marked deficits in openness".

The paper identifies four necessary conditions for change:

- Authentic integration into organisational mission. Organisations that had made greater progress framed openness as part of mainstream business, not an optional bolt-on. Freedom to Speak Up Guardians were given significant investment to ensure that they had sufficient time to deliver the role. Interventions such as behavioural standards frameworks were actively promoted "to ensure that they were more than rarely visited webpages or documents to gather dust".
- Functional and effective administrative systems. These included tight oversight of disclosure and investigation processes, rapid dissemination of learning and implementation of recommendations, and integration of different sources of organisational intelligence about concerns and risks.
- Flexibility and sensitivity in implementation. "Coldly efficient systems" for investigation of concerns could be seen seen by staff, patients and families as unhelpful and even upsetting. There is a need to "soften systems by giving them a human touch" via judgement, flexibility, discretion, and the occasional workaround.
- Continuous inquiry, learning and improvement. This involved "protracted and dogged efforts to improve, sometimes using formal improvement approaches, sometimes more ad hoc". The approach to implementation was open-ended and extended beyond discrete, time-limited improvement projects.

Against these, the paper lists four persistent challenges, including:

- Reliance on goodwill, for example from underfunded Freedom to Speak Up Guardians.
- A lack of care for staff, patients and families - for example, if they sense that raising concerns could be risky.
- Reliance on values, which can be ineffective against staff who remain resistant to greater openness.
- The continued marginality of patients and families. Here, the paper makes the point that "openness policies... focus primarily on organisations and staff. We found that patients and families were mainly bit-part players in enacting the policies".

This last point is important. The authors comment that "Disappointing, and perhaps surprising given their prominence in unearthing problems at Stafford Hospital and elsewhere... the principal mechanisms through which patients and family members can raise concerns about quality and safety remain largely the same as they were in the 2000s".

So there is much in this paper that individual providers could learn from. And we must hope that national bodies are also paying attention.

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Tuesday March 21st 2023

Safe relationships, safe care

Elsevier - Social Science and Medicine (238574)

Patient safety has been identified as a key pillar of high quality healthcare, alongside patient experience and clinical effectiveness. According to this study, patients can play an active role - not least as "vigilant monitors": asking questions, raising concerns and double-checking things like medication timings and doses.

There is a problem, however: patients can be reluctant to raise safety concerns if it means challenging staff - over infection risks from poor handwashing, for example. Key to this is vulnerability: patients are dependent on, and place their trust in, healthcare staff. Fear of damaging their relationship with staff has been identified as a significant barrier to patients' involvement.

When patients are admitted urgently to hospital, vulnerability is increased. There is a loss of integrity and dignity, and, at worst, a profound fear of the unknown, or of dying. In these situations, patients seek reassurance that the hospital is a place of safety, and that they can entrust themselves to the care of the staff. Signs of safety are both contextual (impressions of order, cleanliness and sufficient staffing) and relational (the perceived competence and responsiveness of staff).

One implication, say the authors, is the importance of relational work for patients as a way of keeping themselves safe. To demonstrate that they are 'good patients', they avoid being too demanding, comply with instructions, and display gratitude to staff for the care that they receive.

For patients, then, safety is about vulnerability to harm from both their health status, and from their dependence on the healthcare organisation and the professionals within it. They conduct risk work by seeking reassurance and undertaking relational work - but this can conflict with their additional need for vigilance, and double-checking aspects of their care.

"The difficulty for patients", says the paper, "is that both options may increase their vulnerability, one from harm if trust is misplaced and another from potential damage to relationships from challenging healthcare professional expertise".

The authors suggest that we need to rethink the idea of the 'good patient' - recognising and valuing vigilance alongside compliance. "Both patients and healthcare professionals", they say, "need to recognise how their interactions co-produce safety at the point of care. Seeing safety as co-produced by patients and professionals... might allow risk work to take place without disrupting relationships".

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Tuesday March 14th 2023

Taking patient engagement onstage

Wiley - Sociology of Health and Illness (238436)

Traditionally, patient feedback is channelled through mechanisms such as the Friends and Family Test, or patient surveys. Either way, it is healthcare staff who decide how and where the feedback is presented and reported.

Online platforms such as Care Opinion bring patient feedback into the limelight. They challenge providers to play out their responses in real time and in front of a live public audience.

This study uses the analogy of performance to unpick the ways in which providers deal with online feedback. In this analysis, healthcare staff are "actors" who work "backstage" on script development and rehearsals for handling feedback, before going "frontstage" to display their public response.

Three NHS Trusts were studied in the context of their handling of feedback via Care Opinion: a non-responding organisation (site A), a generic responding organisation (site B) and an organisation that provided transparent, conversational responses (site C). Comparisons included the following:
- Audience interaction. Site A had 2,120 patient narratives via Care Opinion during the study period, and at the start, had a response rate of 0%. Site C had 6,500 patient narratives in the same period, and by the end had posted over 7,500 staff responses which had been read more than 1,787,900 times.
- Script. Standardised scripts were used at site B, to post generic responses. Conversely, site C staff were guided by "stage directions", crafted to encourage conversational responding, and giving "actors" freedom to improvise.
- Spotlight. Site C aimed to ensure that all patient experience information was made publicly available. Site A staff were keen to remain in the shadows where possible, turning a blind eye to what was perceived as the "booing online crowds". Site B were intrigued to peer onstage and understand how the audience were receiving their services while taking comfort in handling responses offline and behind the scenes.
- Cast list. Site C had a team of over 890 staff able to monitor and respond to online patient feedback, in comparison to a maximum of two at sites A and B.

The paper addresses the fears felt by some organisations about having their interactions with patients out in public view where "the whole world and their dog can see". But it counters with some powerful quotes from Site C staff:

"If you’re not hearing negative feedback, it’s because it’s being said elsewhere."

"It’s one of the strongest forms of governance... You can think, 'Well I’ve heard this from the staff and I’m hearing this from the patients. What is this all really telling me?".

"Two years, and nothing really happened. But when the story was placed on Care Opinion we were able to resolve it in 6 weeks."

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Tuesday March 7th 2023

Follow the money

Healthwatch England (238772)

"We will put patients at the heart of the NHS."

Back in 2010, this was the bold promise of the newly elected coalition government, set out in its paper "Equity and Excellence: Liberating the NHS".

The paper was published as the Francis Inquiry was shocking the nation with revelations of large scale harm at the Mid Staffordshire Trust. That inquiry was highly critical of the Local Involvement Network (LINk) - the government-funded patient voice body which should have spoken up for patients but had manifestly failed to do so.

The government's response was to abolish the England-wide LINk network and replace it with a more effective version. "Liberating the NHS" said "We will strengthen the collective voice of patients and the public... through a powerful new consumer champion, HealthWatch England".

The government recognised that the weakness of the LINks was in part due to inadequate funding, at just £27 million per year for the entire national network. So when Healthwatch was established in 2012/13, it was given a considerably increased allocation of £40.5 million.

But the network had hardly got started before the funding began to be cut. It has been whittled down in each and every year of the Healthwatch network's existence and, according to Healthwatch England's latest "state of funding" report, now stands at £25.4 million.

Far from strengthening patient voice in England, the government has reduced its financial strength to below that of the LINKs, over a decade ago.

In this context, the promises to learn from the Mid Staffordshire disaster seem empty. So too does the promise to put patients at the heart of the NHS.

There is, however, one key lesson. To really understand the government's intentions in respect of patient voice, follow the money.

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Tuesday February 28th 2023

Mutual healing and patient safety

BMJ Open (238124)

"It is well known that healthcare workers make decisions that affect patients’ lives while under pressure to do better, faster and with fewer resources", says this research paper from Canada. It continues: "These circumstances can lead to medical errors, often because of a system failure, and occasionally due to human error".

The authors recognise that for patients, caregivers and family, the consequences of medical error can be profound, encompassing physical, emotional and psychological harm. And they note that healthcare workers too, can feel guilt, shame and distress.

Organisations such as Patients for Patient Safety Canada believe that healing can be possible if healthcare workers and patients are able to meet, work together and explore harmful events and the feelings associated with them. However, "Research in this area is scant".

In this context, the researchers asked "How might purposeful conversations between patients and HCWs promote mutual healing and wellness after the disclosure of a medical error?". They carried out a literature review backed up with semistructured interviews to draw out relevant insights.

One finding was that in the aftermath of harm, patients and healthcare workers have considerable common ground. "Both want to tell their stories - and to listen and be heard... both desire to learn from the experience and make sure it does not happen again".

But there are also clear barriers: healthcare workers may be afraid of legal action, or of a psychologically unsafe culture within their organisation. Patients, for their part, can feel a sense of betrayal and mistrust, or can fear that re-opening discussion of the error might retraumatise them.

The key to unlocking a healing dialogue, say the authors, is to bring the common ground and common barriers into the open. This can help all parties to understand "how, why and under what circumstances these purposeful conversations could be most valuable and effective". The goal, ultimately, is to "breach barriers and foster the desired outcomes of apology, understanding and learning from the experience, ultimately improving the quality and safety of healthcare".

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Tuesday February 21st 2023

A national imperative for care

House of Lords Adult Social Care Committee (238024)

This House of Lords report on adult social care opens with a stark fact: around 10 million of us are affected by the adult social care system in England at any one time. In spite of this, "adult social care continues to be largely out of sight and off the public agenda", and our understanding of adult social care "is partial and often flawed".

The report, by the Adult Social Care Committee, says that "Drawing on adult social care should not be seen as a disaster" but it is also clear that the state of adult care is verging on disastrous. It says that:
- The last ten years have seen a 29% real-terms reduction in local government spending power, and an estimated 12% drop in spending per person on adult social care.
- An estimated 44% of working age adults who were caring 35 hours or more a week live in poverty.
- The average person now has a 50% chance of becoming an unpaid carer by the time they reach 50.

The report covers the testimonies of unpaid carers - the people who have to "step up to provide care and support when the system is failing". It describes the exhaustion of people living with the assumption that social care happens first and foremost in the family circle. An assumption which means the work of unpaid carers is "largely invisible, unrecognised and unsupported".

The Committee calls for adult social care to become a national imperative with an appropriate and long-term funding settlement. It says that people who draw on care should have the same choice and control over their lives as other people. Thirdly, it wants an end to the assumption that families will automatically provide care and support for each other because no other choice is open to them.

The report notes that:
- The government's social care funding reforms were supposed to be introduced in 2023 but have now been delayed to 2025.
- There is a government commitment to a comprehensive workforce plan for the NHS, but silence on the need for an adult social care workforce plan.
- The Chancellor's autumn 2022 statement "does nothing to raise confidence that disabled adults and older people will be able to get the care and support they need to live good lives, or that the often forgotten unpaid carers who support them will be better off".

The Committee finds that "Without a fundamental rethinking of how we understand, approach and design social care... we will keep failing disabled adults, older people, unpaid carers, and ourselves".

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Tuesday February 14th 2023

Vaccine compliance and defiance

Wiley - Health Expectations (237984)

In June 2021, with both the pandemic and the vaccination roll out in full swing, we featured a study of vaccine hesitancy in Bradford.

Misinformation was a key factor - but the study participants were not naïve victims of conspiracy theories. They had good reasons to be confused by information coming from multiple sources, anxious about rapid development of a new vaccine, and mistrustful of government.

Eighteen months further on, the authors have published a follow-up.

11 of the twelve original participants had had at least two COVID‐19 vaccines, and most were intending to get their booster. In spite of this, they still harboured doubts.

A common concern was safety: "most were keen to make clear that they did not believe any ‘conspiracy’ stories about the vaccines, yet common tropes about the vaccines' safety, such as them changing your DNA or causing infertility, were part of their narratives".

Confusion continued to arise from discussion and rumour among friends and online groups, and some felt overwhelmed by conflicting accounts. The paper states that "Making sense of the deluge of information about COVID‐19 since March 2020 appeared to have had an emotional and mental toll, which led to people purposefully choosing to disengage". It goes on to say that "this disengagement had led to people being less informed about what the current official guidance on vaccines was".

Mistrust had not been helped by the conduct of people in positions of responsibility: "at the time of the interviews, there had been several reports about those in the Government not abiding by lockdown rules". One participant also believed that the Government had allowed private companies to "monetise the pandemic".

The authors say that their findings "illustrate the continuum of vaccine hesitancy and acceptance and recognize that those who have chosen to have the vaccine may still have doubts and concerns". This, they say, is important because "it means that we cannot take their current vaccine acceptance for granted".

Encouragingly, the study found that while trust in the national government was low, the participants' most trusted health source was the local council. Positive discussion about COVID‐19 vaccines with family and friends was also persuasive.

The authors conclude that "Although the misinformation machine is global, continuing to foster and develop strong and trusting relationships locally can help erode some of its impacts... This further underlines the importance of health messaging that leverages personal relationships and positive emotions".

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Tuesday February 7th 2023

Donations and disclosure

International Journal of Health Policy and Management (237950)

Understanding financial relationships between patient groups and pharmaceutical companies is, according to this Canadian study, necessary for understanding the position that patient groups take when the interests of companies are involved.

In one example from Canada, 87% of patient groups making submissions to an official drug review declared conflicts of interest. The groups also supported funding in over 90% of their submissions to the review.

Correlation is not causation. But the example highlights the need for transparency.

Unfortunately, transparency is somewhat lacking. The paper states that "Innovative Medicines Canada (IMC), the lobby group representing brand-name manufacturers, has included a voluntary guideline for its membership stating that they should disclose... a list of all stakeholders to which they provide direct funding'. But it goes on to say that "there are no penalties for not disclosing and no evaluation has been undertaken to determine if companies are voluntarily complying with this provision".

Patient groups, for their part, tend to be registered charities, and therefore file annual financial reports. But "those publicly available reports do not contain information about individual donations".

The study searched the websites of IMC members and patient groups. It found that "only a quarter of IMC members... reported making donations to patient groups on their websites and frequently only the names of the patient groups were given and the value of the donation and its purpose were omitted". In spite of this, "There were no reports on the IMC website about companies failing to comply with the guideline".

Almost one-third of patient groups did not report receiving donations from companies that claimed that they donated. Patient groups also infrequently reported the year the donations were made, and no patient group reported the exact value of the donation. Only 4 groups reported the purpose of the donations.

The results are, according to the author, "broadly in line with studies in other countries". For example, "The percent of the membership of the Association of the British Pharmaceutical Industry that reported making donations to patient groups varied from 45% to 66% depending on the year". Indeed, "Based on the experience in the United Kingdom, voluntary reporting of industry donations on the websites of charity regulators results in significant under-reporting".

The author argues for mandatory reporting by patient groups, possibly as a requirement for retention of their charitable status. And, he says, "Providing more information about donations will increase the accountability of both companies and patient groups and heighten transparency about their activities".

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Tuesday January 31st 2023

The lazy language of lifestyles

Wiley - Health promotion Journal of Australia (237926)

One of our previous Featured Reports looked at the ways in which health inequalities are understood and addressed in NHS policy documents. It found a widespread use of value judgements applied to local populations - revealed through discussion of lifestyle and behaviour being major determinants of health.

This editorial addresses similar problems in Australian healthcare policy. It states that "the influence of one's ‘lifestyle’ in the prevention of chronic disease... continues to permeate national and jurisdictional public health policies, and the professional and public discourse". This is in spite of the fact that "it is the social, cultural and commercial forces that have the strongest influence on a population's health".

The authors contend that the lazy language of lifestyles "perpetuates the myth that improving the public's health is a personal responsibility". But, they say, the myth is not just based on lazy thinking. "In some cases... this is explicit - a deliberate 'pollution of health discourse', driven by commercial industries with vested interests, or by those with particular ideological standpoints."

Taking obesity as an example, the paper sees it as "implausible that the dramatic rise in the prevalence of overweight and obesity across most high-income countries... has been due to a sudden, concurrent, generational shift in everyone's personal responsibility". And yet, "this narrative continues to pervade, leading to weight stigma among those experiencing overweight and obesity and preserving the belief that improving knowledge and redressing a supposed lack of individual motivation is the obvious solution".

The effect of an overemphasis on individual lifestyle can be "a diversion of attention away from those upstream primary preventive actions that are likely to be most effective at bringing about equitable, sustained improvements in health".

"Language matters", say the authors, and we need to avoid "the ‘zombie hypothesis’ that one's health is simply down to one's choices". They argue that we need to reframe the narrative, "challenging the dominant public discourse on personal responsibility; preferencing evidence that addresses the social, ecological, cultural and commercial determinants of health".

"Avoiding the lazy language of lifestyles", they say, "would be a good start".

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Tuesday January 24th 2023

Government foot-dragging on harm to women

House of Commons, Health and Social Care Committee (238470)

In July 2020, Baroness Cumberlege published her First Do No Harm report on avoidable harm arising from medicines and medical devices - specifically, Primodos, Sodium Valproate and pelvic mesh. The harms were well known because the many thousands of women affected had been speaking up for years, even decades. But no-one had wanted to hear them.

This report from the House of Commons Health and Social Care Committee comes two and a half years after the Cumberlege Review, and documents an evidence session to consider the government's response. The members heard "heart-breaking accounts of how the health system had failed to provide proper guidance, care and support, even when it was known that harm was occurring".

The Committee's assessment of the government response includes the following:
- "Without records of which patient has undergone which procedure, or been prescribed which drug, the health system will continue to... fly blind."
- "Although the retrospective audit of mesh implants is an encouraging first step, it will be unlikely to reflect... all of the adverse effects women have experienced due to the nature of data used in the audit."
- "We were encouraged to hear that the Government is going ahead with pilots of a register of clinicians’ interests, but we are disappointed by the speed at which the Government is acting on this recommendation."
- "Although the Government has also given itself the powers to set up a register of industry payments to clinicians, no decision has been made yet about how to implement it, and officials were not able to share a plan of when the register would be active."
- "Although the vision for what the role of Patient Safety Commissioner will achieve is publicised by the Department, no statement of specific assignments or areas of responsibility, have been published yet."

There is more besides, but it is clear that the government response is, at best, sluggish. Worse still, it seems detached from the needs - and knowledge - of the tens of thousands of women who continue to live with mesh-induced injuries, and in the case of valproate, birth defects and developmental issues for their children.

The Committee states that "We... urge the Department to reflect on the experience of some of the stakeholders with lived experience in this instance, and to consider how to improve engagement with them in the future".

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Tuesday January 17th 2023

Access to records? Not yet.

BMJ (238195)

Back in 2019, the NHS Long Term Plan called on health services to deliver more person-centred care. Part of the follow-through was that all GP patients would have "online access to their full record, including the ability to add their own information, as the default position from April 2020".

This paper looks at what has happened since then.

According to the authors, NHS England planned to provide citizen access to general practice records in December 2021. But the launch was put back to April 2022, and then further deferred to November 2022. Then, just two days before the November deadline, the BMA called for a total rethink of the programme.

"It remains unclear", says the paper, "when default access will be available for everyone".

In the absence of default access, patients still have a legal right to apply for access to their own health information. But "those who request it often face barriers or are given only limited data". Similarly, information on things like consultations and test results is technically accessible through the NHS app. But "most patients have not been 'enabled' to see it, and many are unaware that this is possible".

The paper makes the point that "Incomplete and uneven access to personal health information makes little sense to patients and their carers. Lack of timely access adds to their healthcare burdens".

The authors conclude that " With access to care in the UK among the worst in Europe, patients have little choice but to be more self-reliant". They argue that "Ready online access to their full health record would help them and also reduce demand on the health system. The commitment to provide it", they say, "should be realised".

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Tuesday January 10th 2023

Engaging engagement

Patient Experience Library (238333)

People in healthcare talk a lot about engagement with patients and public.

Sometimes they call it 'involvement' or 'participation'. Other terms are 'co-production', 'co-creation' and 'co-design'. What does it all mean? The answer seems to be that nobody is quite sure.

Back in 2018, NIHR Involve described a lack of consensus around the concept of co-production. In the same year, an academic paper spoke of 'a lack of a common language' for patient and public involvement (PPI) and said that 'the term PPI is not universal in its application or definition'. More recently, the Social Care Institute for Excellence has said that "There is no single formula for co-production".

If anyone does know about co-production, however, it is Gill Phillips, who has huge experience in bringing patients and professionals together in common cause. Her prescription for good engagement? Make it engaging! In the latest edition of our quarterly magazine, she offers some great tips for what that looks like in practice.

Of course engagement is not always about 'professionals' seeking to involve 'service users'. Patients are perfectly capable of acting for themselves - through peer support, education, shared experience and more. Our other contributor, Liza Morton, describes her journey from congenital heart disease in infancy to a career as a psychologist and advocate for psychologically informed medicine. And she explains how engagement with both hearts and minds is essential for healing.

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Monday December 19th 2022

Data-driven inequality

Ada Lovelace Institute (237668)

"Data saves lives" says the Department for Health and Social Care, in a document advocating better use of data for purposes including "tackling unequal outcomes and access".

The Ada Lovelace Institute agrees that data-driven systems can provide better health and wellbeing outcomes but warns in this report that they also risk exacerbating existing inequalities in health. In particular, "Data-driven systems can both alleviate and entrench inequalities - but the latter may be more likely when people’s needs are sidelined in service of an overreliance on data".

The report aims to describe the "complex interplay between data and inequalities" by looking at the pipelines of data that power health technologies. Its premise is that the ‘smooth’ data pipeline is a "hypothetical ideal that does not reflect the complexity and imperfection of reality". In real life, it says, data pipelines are knotted, with complexities and flaws including the following:
- Inequalities can be poorly understood, described and measured.
- There can be tension between local and national priorities for design and delivery of data-driven systems.
- Datasets can be of variable quality, or incomplete, or out of date.
- Data curation involves a tension between making data digestible for busy professionals, and making it nuanced and meaningful.
- Data is a proxy for truth and reality - some people's lived experience might be different from the numbers.
- Data that is devoid of local and historical context can lead to misinterpretation and poorly targeted interventions.

The report makes the important point that " data-driven systems are more than just the technology: they also include the people who develop, design and use these technologies - engineers, product teams, clinicians, hospital administration staff and others". Those people risk building in inequality while designing data systems, or compounding inequality via their interpretation of the data produced by those systems.

Accordingly, there is a need for system designers and users to take a people-centred approach - always considering the context in which data is collected, used and understood, and considering who is involved in decisions.

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Monday December 12th 2022

Open access training for patient experience

Patient experience work is not easy. Not least because evidence on people's experience of care comes from so many different sources: patient surveys, local Healthwatch reports, academic research, online feedback and more. How are patient experience staff and patient reps meant to keep track of it all - and to start making sense of it?

Matters are not helped by the fact that there is no standard training for patient experience staff, and no professional development pathway. The Parliamentary and Health Service Ombudsman's "Making Complaints Count" report has made the point that complaints managers, for example, 'often receive limited access to training and are asked to address serious and complex issues with little assistance'.

So we have been working with the NHS Leadership Academy to start tackling the training deficit in patient experience work.

An online course is now available via the Academy's website, covering:
- Who does what in patient experience evidence gathering.
- Key concepts in patient experience work.
- Why patient experience matters.
- Challenges of hearing from patients.
- How to find different types of patient experience evidence.
- How to start making sense of patient experience evidence.

The course is free, and learners can log in at times that suit them, with the ability to pause part way and carry on at another time if they want.

It is designed to be helpful for people who are new to patient experience work, as well as for people who are familiar with the basics but need to consolidate their knowledge.

As well as people in PALS teams, complaints, local Healthwatch etc, the course could be helpful for patient reps on engagement committees - and for any nursing directorate staff or Trust Board members who need a good grounding in patient experience work.

To find the course, simply go to, select your region and create an account (free), or log in if you are already a user of the Leadership Academy website.

After that, look for "Patient Experience" in "Leadership Modules" and get started!

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