Patient focus updates - 25 October 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.

Children’s Society and the Afiya Trust: Engage toolkit: a resource for practitioners. The toolkit website, funded by the Department of Health, brings together information, resources and links to help develop and implement best policy and practice for services to support black and minority ethnic young carers and their families.  
News: The Engage Toolkit is live.
Afiya Trust: Engage toolkit for black and minority ethnic (BME) family carers.

DH: Resources available for Self Care Week 2012. Resources are now available for Self Care Week 2012, to help NHS, social care and voluntary sector organisations run local initiatives. This year, Self Care Week will run from 12-18 November. It is an annual national awareness week that focuses on embedding support for self care across communities, families and generations. This year’s theme is ‘Self Care for Life – growing older healthily’, which builds on the European Active and Healthy Ageing initiative on improving the health knowledge of patients and the public as they get older.

Find Me Good Care. Developed by the Social care Institute for Excellence, Find Me Good Care has been officially launched as “a comprehensive source of adult social care information and advice”.  
News: Public mystified by care system: SCIE launches service to help people find appropriate support. SCIE’s survey research found that the majority of British people don't know what options are available to them and two thirds have no idea how much care provision costs.

Groundswell Partnership: Working together for change: citizen-led change in public services. This paper describes the working together for change process in detail and places an emphasis on generating solutions, developing robust plans to make them happen and identifying and measuring outcomes. The step by step method has been designed for use by local authorities, social care providers and individual services and can be used to improve commissioning and service provision.

Health Foundation: Shared decision making resource centre. This resource centre offers a 'one stop' portal for shared decision making. It provides an overview of the key elements involved in implementing shared decision making and some advice on navigating these, based on learning from the UK and linked to international research.

Health in Wales: New network to improve diagnosis and support for adults with autism. A network has been launched to help adults with autism to access an early diagnosis and receive support tailored to their needs. Since the launch of the Autistic Spectrum Disorder action plan in 2008, regional and national networks have been set up to share best practice and each local authority now has an ASD lead, steering group and local action plan.

Institute for Healthcare Improvement (IHI): Patient-centered leadership: more than a score. An article from Healthcare Executive looks at what this means. "There is much more than a semantic difference between being patient-centered and being focused on patient experience. When leaders focus on patient experience or satisfaction scores simply to avoid reimbursement penalties or reductions, they send the wrong message to their teams and fail to build the kind of robust culture that is key to sustainable, long-term change at the front lines of care" [you will need to register and sign in to read the full article]. 

Journal of Medical Internet Research (JMIR): Patients’ ratings of family physician practices on the Internet: Usage and associations With conventional measures of quality in the English National Health Service. “The frequency of patients rating their family physicians on the Internet is variable in England, but the ratings are generally positive and are moderately associated with other measures of patient experience and weakly associated with clinical quality. Although potentially flawed, patient ratings on the Internet may provide an opportunity for organizational learning and, as it becomes more common, another lens to look at the quality of primary care.”

National End of Life Care Programme (NEoLCP): Commissioning person centred end of life care: a toolkit for health and social care professionals. This guide identifies the main elements involved in commissioning end of life care services, explains the commissioning cycle in practical terms and offers a four-stage approach across all sectors. It provides a wide range of links to tools and sources of support for both commissioners and providers of services. It also showcases good practice and seeks to indicate what a well-commissioned end of life care service looks like.

NEoLCP: Advance Care Planning: it all ADSE up. NEoLCP toolkit. The toolkit provides practical information on resources available to support the Advance Care Planning (ACP) process. ADSE stands for Ask, Document, Share and Evaluate. The toolkit enables care providers to empower individuals to discuss and plan the care that they would prefer to receive at the end of their lives, including where they would like to die and is closely aligned with other NEoLCP materials, including Planning for your future care: a guide. 

National Institute for Health Research (NIHR) Health Services Delivery Research Programme: Capturing families’ experiences of adult critical care. A new study funded by the NIHR Health Services and Delivery Research (HS&DR) Programme will capture families’ experiences of adult critical care services. The research team will record families’ experiences of critical care and the quality of care provided to their loved ones, to create a benchmark for future comparison.

National Pharmacy Association: Ask Your Pharmacist Week 2012. The week is 5 - 12 November and the focus will be on engaging men to take a more active interest in their medicines and drawing attention to the pharmacy-based services available to them. "Evaluation of last years AYP week showed a marked increase in awareness". The percentage of people recognising that a local pharmacy is more than a place to pick up medicines rose from 25 per cent to 73 per cent.  

NHS Confederation: Joint personal budgets: a new solution to the problem of integrated care? This Briefing introduces joint personal budgets for health and social care. It gives the context behind their development, explains how they might work and lists some of the issues that need to be considered before they could be used at scale. 
News. Personal health budgets should complement existing social care arrangements.

Scottish Intercollegiate Guidelines Network (SIGN): Managing bacterial urinary tract infections in adults. Booklet for patients and carers explaining the recommendations of the clinical guideline which was updated in July 2012 (SIGN 88).  

Social Care Institute for Excellence (SCIE) Report 61: Co-production and participation: Older people with high support needs. "The group of older people with high support needs is becoming increasingly diverse with increasing representation of people from black and minority ethnic communities, people from lesbian, gay, bisexual and transgender communities and groups such as people with learning disabilities living longer". This report summarises the research literature on the participation and co-production of older people with high support needs. Benefits and barriers are identified and practice examples are listed.

Voluntary Organisations Disability Group (VODG): Advocacy: a voice for our future. This report stresses that the aims of advocacy mirror those of Caring for Our Future, the social care white paper published in July 2012. This includes enabling people to access and use information to make good choices about care and helping them be in control of their own budget for support.