Patient focus updates - 8 November 2012

New policy, guidance and initiatives from across the UK that focus on the patient perspective and experience. For more information about this theme see Quality and Safety e-Bulletin: Patient focus.

Some of the resources linked to are in PDF format - see how to access PDF files.

Better Health: Overcoming barriers to registering as an organ donor among minority ethnic groups. This paper explores the reasons for the lower rates of organ donor registration among black and minority ethnic groups by reviewing relevant UK literature and drawing on findings from a community study of the Donation, Ethnicity and Transplantation (DonaTE) Programme. The community study comprised of 22 focus groups drawn from Nigerian, Caribbean, Indian, Pakistani and Bangladeshi communities in London (stratified by ethnicity, faith, age category and in the case of South Asian groups, by gender) to investigate differences in attitudes and beliefs both within and between ethnic groups. 

Change Foundation: The Change Foundation launches Panorama. Panorama is a panel of Ontario residents exchanging views, experiences and advice to improve health care. The panelists come from all parts of the province, and all walks of life; they range in age from 24 to 83, and reflect a wide range of ethnic and socio-economic backgrounds. But all 32 share one thing: they all have long-term health conditions or care for someone who does, and they have extensive experience navigating the bits and pieces of Ontario’s healthcare system.

DH: Public perceptions of the NHS. The results of this study conducted by Ipsos Mori in May 2012 and focussing on the NHS in particular, form an overall picture of the NHS as perceived by the public. It complements other major surveys commissioned by DH but is unique in the fact that it focuses on the general public, rather than patients only.

DH: ‘Keep Warm Keep Well’ leaflet gives advice on staying healthy in cold weather. This leaflet is intended for the public, especially the over 60s, low-income families and people with a disability or a long-term health condition. It gives advice on staying well in cold weather and the financial help that is available, covering issues such as healthy lifestyle, flu jabs and heating.

Guardian: Is it ever OK to decide that a person is so old they are beyond repair? “We're in trouble when we start viewing people in the same way we do cars and choose to stop replacing faulty body parts.”

Guardian Social Care Network: Why SCIE has launched the Find Me Good Care website. “The Social Care Institute for Excellence has created an online service to help people make decisions about their care. What was the thinking behind it?”

Health in Wales: 10,000 people in Wales trained as Mental Health First Aiders. 10,000 people across Wales have been trained to spot the symptoms of mental health problems, and taught how to approach someone with a problem to offer support. The course teaches people about mental health problems and gives them the skills they need to help people in crisis. It covers common mental health issues including alcohol, drugs and depression, crisis first aid for suicidal behaviour, first aid for anxiety and panic attacks, and other issues such as self-harm.

Implementation Science: Factors influencing the implementation of a lifestyle counseling program in patients with venous leg ulcers: a multiple case study. "Implementation of lifestyle interventions in patient care is a major challenge. Understanding factors that influence implementation is a first step in programs to enhance uptake of these interventions. A lifestyle-counseling intervention, Lively Legs, delivered by trained nurses, can effectively improve the lifestyle in patients with venous leg ulcers. The aim of this study was to identify factors that hindered or facilitated implementation of this intervention in outpatient dermatology clinics and in home care." This study was undertaken in the Netherlands.

INVOLVE: Evidence Bibliography 4 published. This publication contains references on public involvement in NHS, public health and social care research. It includes all of the references in the online invoNET library up until September 2012, including the references from Bibliography 3 (published October 2010).

Joseph Rowntree Foundation (JRF): A stronger collective voice for people with dementia. This study looked at whether groups can provide a stronger collective voice for people with dementia. “The Dementia Engagement & Empowerment Project (DEEP) was a one-year investigation aiming to highlight groups and projects involving people with dementia. The report offers specific ways forward for organisations wishing to engage with people with dementia.”

King’s Fund: Improving GP services in England: exploring the association between quality of care and the experience of patients. Two key elements of the quality of health care provided by GPs are the Quality and Outcomes Framework (QOF), and the GP Patient Survey. Using data for more than 8,000 general practices in England, this paper examines the association between patients’ perceptions about the non-clinical aspects of care and practice performance on measures of clinical quality.
King’s Fund blog: Do GP practices that offer high-quality clinical care also offer a good experience for their patients?

King’s Fund projects: Enhancing the Healing Environment: EHE and dementia care: completed projects. NHS trusts who are working on a range of projects across the dementia care pathway and seeking to make acute general hospital environments less alienating for people with cognitive problems.

National End of Life Care Programme: Learning from people’s experience of last days of life. Recent media coverage has highlighted a number of examples where people have reported that care in the last days of life has not been of high quality. Several national organisations, co-ordinated by the National End of Life Care Programme, are to initiate projects to learn from people’s experiences so that improvements can continue to be made.

Public Health Wales: Love your lungs campaign launched. For two weeks in November, from Monday 12 November to Sunday 25 November 2012, people across Wales will have the opportunity to visit their local chemist to take a simple test of their respiratory health and how they can improve it. Wales has a high incidence of lung disease. 

PublicNet: Public perceptions of the NHS: Tracker spring 2012 report. The survey is the latest in a series conducted by the Ipsos MORI Social Research Institute for the Department of Health between Spring 2000 and Spring 2012. It aims to explore public perceptions of the NHS and to track how perceptions have changed over time. This report shows a decline in satisfaction with the current situation and concern about the future.

RCN Policy and International Department: Factsheet: Friends and Family Test ( PDF 105KB). Short briefing on the introduction of the Friends and Family test which will require all providers of NHS funded acute services for inpatients and patients discharged from A&E to ask patients whether they would recommend the service.

Royal College of Paediatrics and Child Health (RCPCH) and Picker Institute Europe: Patient Reported Experience Measure (PREM) for urgent and emergency care. These tools have been developed to measure the experience of paediatric patients 0-16 years in all urgent and emergency care settings including GP practices, out-of-hours centres, A&E departments and the ambulance service. The survey was developed with input from paediatric patients, ensuring that their views were captured early in the design process. It aims to help emergency departments, GP surgeries, walk-in or urgent care centres and the ambulance service to identify areas that are important to paediatric patients, as well as areas for improvement.

Social Care Institute for Excellence (SCIE): Social Work Education Participation videos on Social Care TV. These eight new films, which are essential viewing for all students and social work educators, show the benefits of participation and the issues involved. The films detail the requirements for universities teaching the social work degree to involve service user and carers in their courses. They also set out the benefits that result from students working with service users and carers, with users and carers describing how this leads to improved practice and students explaining the value of learning about the realities of people’s lives. 

SIGN: Patient newsletter October 2012. The SIGN Patient Network is a ‘virtual’ group of patients, carers, members of the public and patient involvement staff from within NHS Scotland.

SIGN: Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders. A new Autism Spectrum Disorders parent booklet in Bengali translation has been published.

SIGN: SIGN Patient News Autumn 2012 update. The Autumn 2012 Patient News update from the Scottish Intercollegiate Guidelines Network (SIGN). 

United Response: Our Future Campaigns Panel report. Our Future is the second report led by United Response’s Campaigns Panel, which is a group of people with learning disabilities and their relatives who want to speak out on issues which matter to them. This report sets out the Campaign Panel's ideas about the White Paper and Draft Care and Support Bill - what they think is good and what still needs to change. "Overall, the Campaigns Panel felt that the reforms are positive and will help to fix some of the biggest problems with the current system", but there is concern about the funding.
Press release: Our Future – people with learning disabilities speak out on Government plans for social care in new report

Welsh Government: Consultation on future of CHCs. In April 2012, the Minister for Health and Social Services, Lesley Griffiths, invited the Welsh Institute for Health and Social Care to undertake a review of the functions, role and operations of Community Health Council. The Welsh Government now seek responses to the proposals they make for the future development of CHCs following this review.  The consultation closes on 16 January 2013.