The Patient Experience Library

East of England Secure Data Environment Core Public Advisory Group

The East of England Secure Data Environment (SDE) is a digital platform that allows approved researchers to securely access de-personalised patient data for health research.

Insight, The public's health and social care views

This report provides a summary of the public's experiences from October to December 2024. We received feedback from 149 people via our phone line, website, email and through events.

Poll Results, Cancer Screening 2024

Healthwatch Brighton & Hove - Healthwatch East Sussex - Healthwatch West Sussex, Poll Results: Cancer Screening 2024, December 2024

Transitions - Exploring peoples' experience of being on the gender identity clinic waiting list

Healthwatch Essex, Transitions, Exploring peoples' experience of being on the gender identity clinic waiting list, January 2025

Community Asset Mapping, Chronic Obstructive Pulmonary Disease - Executive Summary

This report is the latest in a series of voluntary and community sector asset mapping reports which have been produced to support the health and social care system since 2019. Each report has been designed to explore how we can better understand our places in North East Essex by accessing situated knowledge from the experiences of community-based groups and leaders and providing recommendations which have the potential to impact upon our collective outcomes

Community Asset Mapping, Chronic Obstructive Pulmonary Disease - Full Report

This report is the latest in a series of voluntary and community sector asset mapping reports which have been produced to support the health and social care system since 2019. Each report has been designed to explore how we can better understand our places in North East Essex by accessing situated knowledge from the experiences of community-based groups and leaders and providing recommendations which have the potential to impact upon our collective outcomes

Young Carers Service - A baseline assessment

A Young Carer is a person under 18 who regularly provides emotional and/or practical support and assistance for a family member who is disabled, has low mental health or is physically unwell or who misuses substances. Young Carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. The tasks undertaken can vary according to the nature of the illness or disability, the level and frequency of need for care and the structure of the family. Some Young Carers may undertake high levels of care, whereas for others it may be frequent low levels of care. Either can impact heavily on a child or young person. Being a young carer can make young people feel good about themselves and proud of the useful skills they learn. However, many young carers don't see themselves as carers and miss out on getting the help and support they often so desperately need and deserve. Young carers take on caring responsibilities not just occasionally but as part of their everyday lives, often over a long period of time, meaning they also often miss out on opportunities that other children have to play, learn and just be young people. The Voices That Influence team are here to help young people understand their family member's condition and learn how to cope. They also help young carers build positive relationships outside of their family. The Young Carers service endeavours to reduce the impact of caring on young people by providing activities, workshops, and other support to balance their caring responsibilities with being a child. The service strives to provide opportunities for Young Carers to learn and have fun to improve their mental and physical well-being.

Beyond self-regulation, Autistic experiences and perceptions of stimming

Stimming, or repetitive self-stimulatory behavior, is commonly seen in autistic people and is believed to help with self-regu- lation. However, the views of autistic people on stimming are not well represented in academic research. Two studies sur- veyed autistic adults (131 in Study 1 and 117 in Study 2) about their identity, experiences, and views on stimming, as well as its purposes. Participants reported that stimming could be both positive and negative, with negativity only arising when it caused self-injury or was stigmatized. Although stimming was often a positive experience, many participants intentionally suppressed it to avoid judgment from others. Most participants felt that stimming played a key role in their friendships and connections with other autistic individuals and that it helped them understand each other's emotions. Study 2 revealed that a strong connection to the autistic community was the most important factor in whether stimming served these social and communicative purposes. Given the potential importance of stimming as social communication within the Autistic commu- nity, interventions to enhance social and communication skills in Autistic individuals should consider ways to incorporate stimming. A better understanding of the important roles stimming plays in Autistic people's lives is beneficial for the well-being of Autistic individuals.

Making expert advice public in a time of emergency, Independent SAGE and the contestation of science during the Covid pandemic in the UK

This article presents a situational analysis of the expert advice offered by Independent SAGE, a group of scientists that formed in May 2020 in the UK to provide advice on the Covid response. Based on interviews with the group's members and partners, we argue that through its interventions Indie SAGE demonstrated an important alternative approach to linking science and politics in a time of emergency. They showed that the only way to ensure that policy and decision-making on Covid-19 was grounded in knowledge was by making expert advice public. Indie SAGE's decision to 'go public' was a response to the political situation in the UK, one in which scientific advice, in particular public health expertise, was being ignored, sidelined and contested as such. We identify four rationales for making expert advice public: openness, calling out, translation, and responsive engagement. We describe associated modes of intervention that Indie SAGE adopted in relation to different critical situations of Covid-19. Distinctive about their advice, we argue, is its prioritization of situational adequacy. Much of it was explicitly oriented towards addressing practical and existential challenges experienced by particular social groups, professions and everyday publics. We argue that this way of making science public in an 'ontological' register acquires critical importance in a political situation like the UK Covid response, which was marked not just by disagreements about science but growing contestation of science as such. In this respect, our study holds a wider lesson for the understanding of the role of evidence in public politics. To advocate for evidence-based governance, as Indie SAGE did, is not necessarily to endorse a post-political vision of government. When science is contested in a time of emergency, making evidence public becomes a key means for responding to the demands of situations. It is not only pragmatic but a critical accomplishment.

Enter and View Report - Umbrella Medical, Hatherton Medical Centre, 1 Hatherton Street, Walsall WS1 1AF