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Call for accessible information on end-of-life care; Services for people with multiple long-term conditions; Social prescribing evaluation resources

Your weekly round up of the latest news, studies and views for professionals working in health information (11 September 2024).

Call for accessible information on end-of-life care

A report by Compassion in Dying says people need clear and accessible information to help them consider their priorities and understand treatment decisions as they approach the end of their lives. The report, based on calls to an end-of-life helpline, says many people have to "fight" a medical system that tries to extend life without considering what is right for each person. It identifies four key themes:

  • Talking about dying is not enough to ensure people’s wishes are followed.
  • Opportunities to help people consider, discuss and record their preferences are missed.
  • The healthcare system can be dismissive of people’s attempts to make decisions.
  • People cannot make informed decisions without realistic and straightforward information.

Some people are not told they are dying even when they ask. Others are told critical information about their treatment options or prognosis in euphemisms or with terminology they do not understand. The report makes a series of recommendations to improve transparency and increase informed decision making. They include a public health campaign on advance care planning.

Read the full report via the Compassion in Dying website here.

Service innovations for people with multiple long-term conditions

A summary report exploring service provision for people with multiple long-term conditions says the health system is mainly organised around single conditions. Research calls and studies also usually focus on single conditions and associated services despite the fact that it is common to live with multiple long-term conditions. Living with multiple conditions is the norm for people over the age of 50 using health and care services. Authors highlight the need to build opportunities for engaged, informed individuals and improved self-management. 

Read the full report via the NIHR website here.

Social prescribing evaluation resources

The National Academy for Social Prescribing has published guidance and tools to help with evaluating social prescribing projects. The document is primarily designed for voluntary, community faith and social enterprise sector organisations. At the end there is a section containing more specialised or complex resources. These may be of interest to commissioners, professional evaluators, academics or those who are looking for a deeper understanding of theoretical, strategic or systems-level perspectives on evaluation.

Access the resources via the National Academy for Social Prescribing website here.

Lessons from the healthcare response to the Grenfell Tower fire

The King's Fund has published a report exploring the lessons that can be learned from the healthcare response to the Grenfell Tower fire. The report documents the experiences of people from the community and those responsible for commissioning and providing health care services in the area after the fire. It shows how the community fought to bring their voice to the response, the importance of listening to those voices and what this meant for how services were provided and commissioned. The authors argue Grenfell was not a unique event and many of the lessons learned can be applied across the healthcare sector.

Read the full report via The King's Fund website here.

Groundswell publishes new sepsis and tuberculosis guides

Groundswell has published new guides to sepsis and tuberculosis. The guides were created in line with needs identified by the Homeless Health Peer Advocacy team which works directly with people experiencing homelessness and those supporting them. They were co-produced with health practitioners and people who have experience of homelessness.

Access the new guides, along with all of Groundswell's information resources, here.

Ovarian cancer quality standard update

PIF member NICE is consulting on a new draft quality standard on ovarian cancer. The draft would replace the existing quality standard which was published in 2012. The consultation closes at 5pm on Wednesday, 18 September.

View the consultation documents and comment via the NICE website here.

New chair of Health and Social Care Committee

Layla Moran has been elected unopposed as chair of the Health and Social Care Committee. The cross-party committee is responsible for scrutinising the work of the Department of Health and Social Care and its associated public bodies.

Read more via the UK Parliament website here.

New Public Health Bill for Northern Ireland

The Department of Health is running a consultation on a new Public Health Bill to replace the current Public Health Act (Northern Ireland) 1967. The consultation closes on 27 September.

Take part in the consultation via the Department of Health website here.

Understanding Patient Data Evaluation survey

Understanding Patient Data (UPD) has partnered with Apteligen to carry out an evaluation of its activities and impact since 2016. This survey should only take a few minutes. Responses will be used to inform UPD's future work and to produce a publicly available report.

Take part via Surveymonkey here.

Self Management Week events schedule

Registration is now open for Self Management Week 2024 which runs from 23 to 26 September. Events will take place online and at venues in Scotland.

See the full agenda via the ALLIANCE website here.

See also