Patient focus updates - 29 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.

All Health Solutions: Collaborative Health Innovation Network (CHIN). Public Engagement and Knowledge Translation Environmental Scan (PDF 3.3MB). The Canadian Collaborative Health Innovation Network (CHIN) strives to develop effective knowledge translation (KT) and improve links between evidence and decision-making. This new CHIN environmental scan determines best practices related to public engagement and examines Alberta’s current KT landscape for health innovation.

BBC Health: Why are we so unhealthy? Health correspondent Nick Triggle  comments on the “seven established factors that raise the risk of ill-health”. 

BMC Nursing: Postoperative recovery and its association with health-related quality of life among day surgery patients. This study, undertaken in Sweden, aimed to "prospectively describe postoperative recovery and health-related quality of life among different groups of day surgery patients and to explore the association between postoperative recovery and health related quality of life 30 days after discharge."

Cancer Campaigning Group: Patients’ experience of integrated care (PDF 1.2MB). The report, based on a survey of people living with cancer, and their carers, highlights the need for improvements in integrated care for cancer patients. The survey found that one in three respondents thought that they had experienced integrated care but calls for greater assessment of the experience of patients and carers when developing solutions and improvements. Five key areas where patients thought improvements could be made to deliver integrated care are highlighted.
News: New report shows that integration is vital.

DH: Norman Lamb talks about Self Care Week 2012 (12-18 November 2012). Self Care Week is an annual national awareness week that focuses on embedding support for self care across communities, families and generations. In this video, Minister of State for Care and Support Norman Lamb describes the purpose of Self Care Week.

Diabetes UK: Nine out of 10 parents unaware of Type 1 diabetes symptoms. A survey commissioned by Diabetes UK has revealed this lack of awareness which can delay the diagnosis. To address this Diabetes UK have launched a campaign to highlight the “4 Ts” – Toilet, Thirst, Tired and Thinner.  
Do you know the 4 Ts of Type 1 diabetes? 

Guardian Healthcare Network: Series: Will the friends and family test transform the NHS? “The friends and family test is not just another NHS data collection exercise. For the first time, the fundamental purpose of the information collected is to share it with the public in a totally open, transparent way.”  

Healthcare Quality Improvement Partnership (HQIP): HQIP invites you to test its new PPI online learning tool. HQIP invites patients, carers, volunteers as well as clinical audit professionals to test out its new patient and public involvement online learning tool. The tool aims to introduce clinical audit to patients, and others, who want to be involved in clinical audit activity in their local organisation.   
Understanding clinical audit online learning for patients.

Health Foundation blog: Measuring patient involvement is hard, but we must do it. The DH Mandate to the NHS Commissioning Board makes it clear that the NHS “must become dramatically better at involving people in long-term conditions in their own healthcare and empowering them to manage their care and treatment”.   

King’s Fund: Patient experience. Patient experience topic page bringing together related policy and programmes of work by the Kings Fund.

National Cancer Research Institute: Action on access: Widening patient participation in clinical trials (PDF 1.4MB). This report is the outcome of a two-year conversation between cancer patients, carers, clinicians, and researchers. It aims to redress some of the inequalities in research participation and create an NHS environment where every eligible patient is given the opportunity to participate in research.

National Nurse Research Unit (NNRU), King’s College: Staff wellbeing impacts patient experience. New research carried out by the National Nursing Research Unit at King’s College London, based on a three year study, strongly suggests that levels of satisfaction and wellbeing among NHS staff has a direct impact on patients’ experiences of healthcare. The study aimed to determine which particular staff attitudes and behaviours impacted on patient experiences.
National Institute for Health Research (NIHR) Health Services and Delivery Research Programme: Patients experience of care and the influence of staff motivation, affect and well-being. 

Nesta, Innovation Unit: Working towards people powered health: insights from practitioners. "People Powered Health is about creating a healthcare system in which clinicians and patients collaborate to enable people to live better with their conditions". This focuses on the challenges of co-production - in particular the relationship between co-production and workforce culture. A number of experts contribute their ideas on this topic. 

NHS Confederation Mental Health Network: Equally accessible? Making mental health services more accessible for learning disabled or autistic people. This Briefing summarises a study, commissioned by the Mental Health Network and funded by the Department of Health, that highlights some of the innovations made in local mental health services in England. 

NHS Kidney Care: Walking in their shoes – understanding the lives of young adults with long term conditions. This ethnographic study produced in collaboration with Ipsos Mori provides an insight into the experiences of young adults with kidney disease. It complements a national NHS Kidney Care project, in which five project groups from kidney care services across England were commissioned to develop innovative approaches to supporting young adults with kidney disease. 
Supporting young adults with kidney disease national project. 

Nuffield Trust: Choosing the place of care: the effect of patient choice on treatment location in England, 2003-2011. This report examines the effect of patient choice and the independent sector on treatment location in England, specifically the extent to which patients (or their referring doctors) have been choosing a different location of care since 2006. It is the first output from a three-year joint programme of work between the Institute for Fiscal Studies (IFS) and the Nuffield Trust: 'understanding competition and choice in the NHS', which will establish a long-term expertise in the use of competition and market mechanisms in health care both in England and internationally.

Nuffield Trust: The impact of the Marie Curie Nursing Service on place of death and hospital use at the end of life. More than half of all deaths in England and Wales occur in hospital, although studies have shown that the majority of people would prefer to die at home if possible. Towards the end of life, the use of hospital care rises significantly. Studies have suggested that palliative and end of life care can allow more people to die at home, improve quality of life, reduce pain and other symptoms, and lower the demand for unplanned hospital care. This study examines whether the home-based nursing service provided by Marie Curie Cancer Care helps more people to die at home, and reduces hospital use and costs at the end of life.

Parliamentary and Health Service Ombudsman: Listening and learning: the Ombudsman's review of complaint handling by the NHS in England 2011-12. This report includes data showing the number of complaints received by the Ombudsman; the number of complaints resolved through interventions; the number of complaints accepted for formal investigation; and the number of investigated complaints reported on, and the percentage of those complaints which were fully upheld, partly upheld, or not upheld.
News: NHS fails to communicate effectively with patients and families, warns ombudsman. 

Patient’s Association: Stories from the present, lessons for the future (PDF 3.3MB). The Patients Association has published its fourth annual ‘Patient Stories’ report – a series of case studies highlighting shocking experiences of poor care that still scar the NHS. The report catalogues 13 accounts from patients or relatives who have experienced poor care in hospitals and care homes around the country. The report is a snapshot of the many stories of poor care heard by the Patients Association Helpline, and reflects wider shortcomings in the NHS, which require change in both Westminster and on hospital wards.
Press release: Culture of NHS means poor care remains unchallenged and unchanged.
RCN:  Nursing staff must raise concerns. 
BBC Health: Action urged over 'appalling' NHS care.

Social Care Institute for Excellence (SCIE): Personalisation: a rough guide. This is the first of a new type of SCIE interactive resource, enabling users to personalise the content to meet their own needs and interests – “a personalised guide to personalisation”. Users will need to be registered and log-in and will be able to bookmark the sections that they are directly interested in. The resource can be accessed on desktops, laptops, tablets and mobile phones.