End-of-life records: acting on health information to deliver what people need

Compassion in Dying has published the results of a national survey asking people to share their experiences of electronic end-of-life records. 

Analysis of more than 1,700 responses found five key themes:

  • People experienced considerable anxiety about their wishes and health information not being known or acted upon when it mattered
  • People wanted to be more involved in viewing and editing their end-of-life records
  • People had bad experiences of end-of-life care when their wishes and health information were not known or acted upon by healthcare professionals
  • People had good experiences of end-of-life care when their wishes and health information were known about and respected
  • Recording their wishes was not always enough – many people needed ‘advocates’ to ensure their health information was known about and their wishes acted upon

Read the report in full here.

Study: Using social media for patient and public involvement in health research

A new study aims to explore the process and impact of conducting patient and public involvement and engagement (PPIE) through a closed Facebook group.

The group was established to facilitate feedback on a project using video-recording to examine risk communication in NHS Health Checks between June 2017 and July 2019.

Researchers found using a closed Facebook group to facilitate PPIE offered a flexible approach for both researchers and participants.

It enabled a more inclusive method to PPIE and allowed rapid feedback. 

Challenges included maintaining the group, which was more labour intensive than anticipated, and managing members' expectations. 

Suggestions for best practice include:

  • Clear communication about the purpose of the group
  • Assigning a group co-ordinator to be the main point of contact
  • A research team which can dedicate the time necessary to maintain the group

Read the study in full here.

Health and Care LGBTQ+ Inclusion Framework

The NHS Confederation has published a practical framework providing health and care leaders with the tools to create inclusive environments for LGBTQ+ staff and service users.

The framework is based on six core pillars of action:

  • We have visible leadership and confident staff
  • We have a strong knowledge base
  • We are non-heteronormative and non-cisnormative in everything we do
  • We take responsibility for collecting and reporting data
  • We listen to our service users
  • We proactively seek out partners to co-deliver services

Read the framework in full here.

Study: What do adolescents think about vaccines?

A new review of qualitative studies identifies evidence on adolescents’ understanding of vaccines and experiences with vaccine decision-making.

Researchers say adolescence presents a key opportunity to build vaccine-related health literacy and promote vaccine confidence and uptake. 

However, adolescents' views around vaccines are frequently underrepresented in qualitative literature. 

The review found adolescents are often unsure why a specific vaccine is recommended for them and may have questions and concerns about vaccine safety and effectiveness. 

Importantly, adolescents may perceive vaccine-related information provided in schools or via community healthcare providers as being directed towards their parents or caretakers.

Authors say it is important to acknowledge that adolescents may have different healthcare information needs and concerns than adults. 

They may also have different risk perceptions and be less motivated to seek preventative care.

Read the full study here.

Children and young people develop support tools for other bereft families

Children, young people and families bereaved by suicide have developed a new toolkit to support families like their own.

The toolkit was developed by non-profit organisation Chilypep in partnership with South Yorkshire and Bassetlaw ICS.

It offers advice and resources as well as signposting to where children, young people, families and those who work with them can get further support if needed.

Access the toolkit here.

Bullet points, lists and health literacy

In this Health Literacy Out Loud podcast, Genevieve Walker and Helen Osborne discuss the use of lists in health-literacy friendly materials.

Genevieve talks about how lists can be useful, the confusion they can cause when not done well and shares some top tips for writing useful lists.

Listen to the podcast here.

Online recovery programme to improve symptoms of Long Covid

The European Lung Foundation has published a summary of research outlining how an online programme can improve mental health and the symptoms of breathlessness following COVID-19.

Results found people on the English National Opera (ENO) Breathe programme were more likely to see an improvement in their mental health compared to the people receiving usual care. 

They were also more likely to report improved breathlessness during running. 

There was no difference seen in physical symptoms reported between both groups.

Read the summary here.

Ensuring the NHS meets the needs of trans people

In this article, Richard Murray, chief executive at The King's Fund, takes a look at the evidence around poor access to health services and poor outcomes experienced by trans people.

He asks what more the NHS can do to better meet people’s needs and highlights possible solutions, including co-production with the trans community.

Read the full article here.

Patient involvement in the development, regulation and safe use of medicines

A new report describes the importance of systematically involving patients throughout a medicine’s life – from early development to safe use in everyday healthcare. 

It provides a comprehensive overview of the current knowledge about the benefits of patient involvement and existing initiatives.

The report also gives examples and recommendations, as well as addressing the remaining challenges and practice gaps.

Download the full report here.

Study: Effectiveness of eHealth self-management Interventions

A new study aims to systematically review the evidence for the effectiveness of eHealth self-management in patients with heart failure.

Analysis of randomised controlled trials found eHealth interventions could increase patients’ knowledge of heart failure and improve their quality of life, but there were no statistically significant effects. 

However, eHealth interventions could significantly increase medication adherence and improve self-care behaviours.

Read the findings in full here.

Menopause factsheet published

The Self Care Forum has published a menopause factsheet to mark Menopause Awareness Month.

The resource was produced in partnership with the NHS National Menopause Clinical Reference Group.

It is available for people working in health and social care to use as part of shared consultations to increase awareness of symptoms and how to manage them.

View and download the factsheet here

Bowel cancer screening age lowered to 55 in Wales

Home testing for bowel cancer has been extended to include people aged 55 to 57 in Wales.

The move is part of a phased approach to lowering the screening age to 50 by October 2024.

The newly eligible age group will be contacted gradually over the next 12 months.

Read more about the change here.