Patient focus updates - 13 December 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.

BBC Health: Getting it right for dementia patients. Feature on good dementia care - how colour-coded bays, soft floors and extra training is helping.

British Lung Foundation (BLF): Patient guides. The British Lung Foundation and NHS Improvement have produced four guides explaining what patients, family and carers can expect for their care. The guides cover: Assessment and diagnosis of COPD; Managing flare-ups of COPD; Pulmonary rehabilitation and Home oxygen services.

Carers UK: Sandwich caring families under pressure. Sandwich caring or 'dual caring' is when parents are combining looking after young children with caring for older or disabled loved ones. This report looks at a specific category of sandwich carers, namely those ‘who combine looking after a dependent child under the age of 18 with caring for an adult’. The research showed that four in ten (42 per cent) sandwich carers were struggling to cope as their careers, family finances and relationships suffered.

Centre for Economic Performance, London School for Economics: Free to Choose? Reform and Demand Response in the English National Health Service. This paper considers whether the emphasis on choice in the NHS reforms will increase demand for hospital services. It uses a new model to estimate the potential effects looking particularly at clinical quality and waiting times for surgical procedures. It found that demand faced by hospitals increased post-reform, giving hospitals potentially large incentives to improve their quality of care. It also found that hospitals responded strongly to the enhanced incentives due to increased demand. Findings suggest that greater choice can enhance quality, leading to significant reductions in mortality and an increase in patient welfare.

DH: Personal health budgets to be rolled out. The roll out of personal health budgets has been announced by Care and Support Minister Norman Lamb. Personal health budgets, which are an amount of money given to someone, to help them design a package of care support from clinicians and others, have been piloted at 20 in-depth sites for the last three years. The evaluation of the pilot programme found that people's quality of life had improved.
DH: Personal health budgets pilot – final evaluation report.
RCN: RCN expresses concern about personal health budgets. A system which may put pressure on patients to 'top-up' their care needs careful consideration, the Royal College of Nursing has said, as the Government announced the roll out of personal health budgets in England.

DH: NHS providers to bid for funding to improve birthing environments. NHS providers can bid for £25 million of capital funding in 2012-13 for the NHS to improve the birthing environment in the maternity units that need it most, so both mothers and fathers, and the staff who work in the units, can benefit from a more pleasant and appropriate environment.

DH: Cancer survivors give their views in pilot survey. The first pilot survey of cancer survivors ‘The Quality of Life of Cancer Survivors in England’ is published alongside the second annual report on improving cancer outcomes. "As well as improving survival rates, we need to respond to the challenge of supporting more people to live well, beyond cancer ... Many cancer survivors speak of feelings of isolation and abandonment. They also need support with the effects of treatment, such as incontinence, which can have a profound impact on their quality of life."
DH: Second annual report on improving cancer outcomes.  

DH: Looking ahead to the Be Clear on Cancer campaigns for 2013. The department is running regional and local pilot Be Clear on Cancer campaigns in January 2013 to improve public awareness of cancer symptoms. The campaign is set to encourage those people with symptoms to see their GP earlier and uses TV, radio, public events, press and poster advertising.

Guardian Healthcare Network: How our hospital trust introduced a person-centred approach to dementia. Rose O'Malley explains how University hospitals Coventry and Warwickshire NHS trust's Forget-Me-Not campaign has made a difference to patients and their relatives.

Health in Wales: Launch of the Strategy for use of Welsh Language in Health and Social Services. A new strategy that will strengthen Welsh language services to meet the care needs of Welsh speakers, their families and carers has been launched with the aim of improving the quality of care and people’s experience of Welsh language care among front line services.

Healthcare Improvement Scotland: PROMs (Patient Recorded Outcome Measures) user guide. This guide is meant for anyone looking at using PROMs, wanting to learn more about the measures or reflecting on their current PROMs practice. It contains a number of links and resources about PROMs, creating more accessible information, asking a carer to complete PROMs for patients, and approaching people with suspected low literacy.

Healthcare Improvement Scotland: PROMs patient information leaflet. Patient reported outcome measures (PROMs) are questionnaires patients complete on their health and quality of life. The information collected from PROMs can help to monitor patient progress, help professionals and patients discuss health issues with each other and/or help to improve the quality of health services. This Easy Read leaflet will support clinicians to explain the purpose of PROMs to patients or clients.

Improving Access to Psychological Therapies (IAPT): IAPT three-year report: the first million patients. The report describes the areas in which the IAPT programme has delivered measurable success and benefits. Lessons from the early stages of the programme are being used to provide guidance for less well-performing services. 

Joseph Rowntree Foundation (JRF): Improving decision-making in the care and support of older people. The report looks at how risk and trust affect decision-making in the care of older people.

JRF: Risk, trust and relationships in an ageing society. This review considers the role of individual motivation and cognition in dealing with some of the challenges, choices and tensions confronted in daily life in relation to the issues of risk and trust. It asks what would help make people more confident to make better decisions about caring for and supporting each other and examines how society's capacity to support an ageing society could be strengthened.

NHS Commissioning Board: A Narrative for person-centred, coordinated (‘integrated’) care. The NHS CB has commissioned National Voices, the national coalition of health and social care charities and its members, to develop a Narrative for integrated care from the perspective of the patient and service user. They have done so in partnership with the Local Government Association supported by the Department of Health and Monitor. The purpose is to help ensure a shared understanding of what good person-centred, co-ordinated (‘integrated’) care looks like for an individual, using language that everyone can identify with. Send comments and responses to the narrative by 28 February 2013.

NHS Kidney Care: New films put spotlight on carers. NHS Kidney Care is showing a series of short films to celebrate Carers Rights Day. The films give an insight into what it’s like to care for someone with a long term condition. The five films are the result of an ethnographic study NHS Kidney Care commissioned from Ipsos MORI, in order to highlight the issues people face when caring for a loved one who has a serious illness. The films were launched at a roundtable discussion at the King’s Fund in London, which brought together carers, patient representatives and healthcare professionals to explore how carers can be better supported.

Office for National Statistics (ONS): National Bereavement Survey (VOICES) by PCT cluster 2011. Key findings include: Quality of Care, Dignity and Respect shown by staff, Patient Care and Support, and Patient Preferences and Support of Families and Carers were all regularly rated in the top 20 per cent, in the South West region; The London region received the poorest ratings across all domains, being regularly in the lowest 20 per cent.
RCN: Community nurses can improve end of life care.

Parkinson’s UK: Public awareness campaign. The first ever public awareness campaign has been launched with adverts appearing on billboards and in newspapers across the UK. To coincide with this Parkinson’s UK have revealed the results of a poll which “has uncovered some troubling attitudes towards those living with the condition.”

Public Health Wales: HIV – new campaign for Wales to launch on World Aids Day. A new campaign to remind people that HIV infection is still a health risk was launched in Wales on World Aids Day (1 December 2012). 

Social Care Institute for Excellence (SCIE): Reablement videos on Social Care TV. Two new films have been launched on Social Care TV, which show how short, intensive support at home or in dedicated units, can help people learn (or re-learn) skills for everyday tasks.