Patient focus updates - 21 February 2013

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.

American Hospital Association: Engaging health care users: a framework for healthy individuals and communities (PDF 1.5MB). The American Hospital Association is exploring the role of hospitals and health care systems in improving the total health of the population and the community they are serving. Fundamental to this is developing interactions with patients. This framework presents a continuum for engaging health care users from information sharing to partnerships and looks at what this might involve and how it can be achieved.

BMC Health Services Research: Community participation in rural health: a scoping review. “Major health inequities between urban and rural populations have resulted in rural health as a reform priority across a number of countries. However, while there is some commonality between rural areas, there is increasing recognition that a one size fits all approach to rural health is ineffective as it fails to align healthcare with local population need. Community participation is proposed as a strategy to engage communities in developing locally responsive healthcare.” The aim of this study was to identify examples, in the international literature, of higher level community participation in rural healthcare.

Care Inspectorate: Making Every Moment Count in Care for Older People. Scotland’s care regulator has launched a new initiative to enhance the quality of life of older people receiving care services. The Care Inspectorate has worked with a team of experts to develop the ‘Make Every Moment Count’ resource, which contains easy to read and simple guidance for everyone supporting older people in a care home or at home. The guide highlights how making the most of every moment can make a real difference to a person’s quality of life in simple but very meaningful ways.

Centre for Mental Health: Centre welcomes historic steps to equality. The Mental Health Discrimination bill is to pass into law. This will put an end to laws which prevent people with mental health problems exercising their rights to play a role in public life. 

Council for Disabled Children: VIPER (Voice. Inclusion. Participation. Empowerment. Research). VIPER is a three-year project funded by the Big Lottery Fund, to research young disabled people's participation in decisions about services. The main synthesis report summarises the findings and key messages from the research activities carried out between 2010 and 2012. A policy briefing, summary of recommendations and other documents related to the project are available to download. Findings indicate that "many disabled young people are still being excluded from participation and decision making opportunities".

DH: Personal health budgets DVD now available to professionals. “Three years on: Stories from the pilot programme”, a DVD of patient and clinician experiences with personal health budgets, is now available to health and social care professionals. Seven patients, in the final year of the personal health budgets pilot programme, share their experiences, what the process is like, what they spend their money on and how they decided on this. The films include the perspectives of their family, carers and health care professionals, as well as a film specifically for health care professionals – interviews with GPs, nurses and a range of practitioners.

DH: Liverpool Care Pathway independent review: Public call for evidence launched. Members of the public are invited to share their experiences of the Liverpool Care Pathway for Dying Patients (LCP), both good and bad, as part of the review being chaired by Senior Rabbi and Crossbench Peer, Baroness Julia Neuberger.

DH: NHS Information service for parents reaches 100,000 signups. More than 100,000 people have already signed up to receive online advice about looking after their baby – and a quarter of these are fathers. By April 2013 the service will cover children up to 18 months of age.

DH: NHS Friends and Family Test publication guidance. Guidance for providers of NHS funded services on calculating and presenting the NHS friends and family test results has been published. The guidance details how scores will be calculated and how national and local publication should be carried out. It aims to support those who are currently implementing the test.

DH: Change4Life alcohol campaign warns of ‘sneaky drinks’. A Change4Life campaign launches today to raise awareness of the health risks associated with drinking regularly over the guidelines. Four weeks of nationwide TV advertising.

DH: Alzheimer’s Society launches Dementia Friends information sessions. Just over 12,000 people have registered their interest in becoming Dementia Friends. Now people across England will also be able to attend information sessions to find out more about what it’s like to live with dementia and then turn that understanding into action in their local community.
Dementia Friends website.

Health Affairs: Engaging patients and their loved ones in the ultimate conversation. The Conversation Project, an American campaign, is encouraging conversations about end-of-life wishes and teaming up with health care providers to transform the way Americans deal with care choices near the end of life. The project has forged a collaboration with IHI, whose "Conversation Ready" initiative aims to help health systems and providers develop the skills to respect and carry out those end-of-life wishes.

Guardian: Francis report: creating patient power is the only way forward. “The NHS needs more patient and user-led organisations, not watered down versions such as HealthWatch, or more red tape.... For all the talk of involvement, what successive governments have actually done is weaken local and national patient and service user organisations”.
ImROC website.

Mental Health Foundation: Service users’ experiences of recovery under the 2008 Care Programme Approach. Published jointly with the NSUN network for mental health, this study was set up to explore how effective service users find the 2008 Care Programme Approach in promoting recovery as they understand it, to put forward their views and recommendations about the recovery role of the Approach and to produce a checklist of good practice for mental health professionals involved in this Approach.

National Institute for Health Research, Clinical Research Network: Involvement4access. A new web resource has just been launched to support patients having a say in health research as a treatment choice in their local NHS hospital or health centre. Involvement4Access aims to encourage initiatives that support patients as ‘Research Ambassadors’ to help improve access to health research in the NHS locally. The new web resource is the first step in creating a ‘community of practice’ to support the patient voice for research in the local NHS. It outlines what Involvement4Access is and what you can do locally, supported by hot tips, examples, and resources. It also invites you to log your plans or initiative online.

NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for South Yorkshire et al: The Voice of dementia. This film shows people with dementia talking about their lives, their diagnosis and the importance of being listened to. It begs the question - why are these people marginalised when it comes to decisions about their lives, and what can we do to change this? The film is an outcome from a larger CLAHRC SY project about exploring how people with dementia could be better involved in service feedback, evaluation and planning.

NHS Commissioning Board (NHS NCB): Patient-led assessments of the care environment (PLACE). Jane Cummings, Chief Nursing Officer for England, has written to NHS leaders introducing the new system for assessing the quality of the hospital environment from April 2013. Patient-led assessments of the care environment (PLACE) is the new system for assessing the quality of the hospital environment, which replaces Patient Environment Action Team (PEAT) inspections from April 2013. PLACE assessments will apply to all hospitals delivering NHS-funded care, including day treatment centres and hospices.

NHS NCB: Have your say on the narrative for person-centred, coordinated care. There is still time to have your say on the narrative for person-centred, coordinated care by the end of the month. Under the Health and Social Care Act 2012, the NHS Commissioning Board (NHS CB) and clinical commissioning groups (CCGs) have a duty to ‘promote’ and ‘encourage’ integration of care. A recurring theme, highlighted by NHS Future Forum, has been the need for a compelling narrative for integrated care so that the public and professionals share a common and meaningful understanding of it. The importance of this has been captured in the new NHS Constitution (currently out for consultation). Send all comments by 28 February 2013.

Picker Institute Europe: Understanding public protection: exploring views on the fitness to practise of health and care professionals (PDF 863.6KB). In September 2012, the Health and Care Professions Council (HCPC) commissioned Picker Institute Europe to explore public and professional views and understandings of public protection. “Key findings of the research shows that there is no consensus on what members of the public might want to be protected from, and no appetite to create an explicit list of actions that would trigger investigation by the regulator. It also found that there was a concern that professionals be honest and trustworthy, both on and off duty”.

Work Foundation, Lancaster University: Working with schizophrenia: Pathways to employment, recovery and inclusion. "Even though most people with schizophrenia are willing and able to work, this group encounters one of the lowest employment rates among all disadvantaged groups. Only 8% of people with schizophrenia are currently in employment.  The report examines the impact of schizophrenia on an individual's ability to enter or remain in the labour market, outlining how such barriers can be addressed by policymakers, employers, healthcare professionals as well as those with the condition and their carers".