Patients and their families in Gloucestershire say better information needs to be provided for local people around end of life care, according to the latest findings from the county’s independent health and social care champion.
Healthwatch Gloucestershire’s End of life report: End of life report: Evaluation of non-clinical support – published this month – is based on findings from over 50 responses to a survey of the public’s experiences on accessing information around end of life care in the county.
The report reveals:
- Most of those who responded said that they went to medical professionals when they wanted information and support around end of life care, such as their community team (60%), their GP (57%), hospice team (34%) and practice nurse (31%).
- However, many relied on their friends and family (46%).
- Most people said that they preferred to receive information face to face or via a leaflet/booklet (both 81%). In comparison only 39% preferred to receive it via online or text.
- Individuals would predominantly like to find hard copies of information in healthcare environments such as the GP surgery (90%), hospital waiting areas (81%) and their local pharmacies (74%).
- Some people would like more information on the last stages of life including health changes and post death advice.
- Others felt information on the psychological and emotional support available to them would be helpful.
- Whilst others such as unpaid carers said support for their mental health and emotional wellbeing was one of the most helpful things during the end of life period.
- Some of the participants said that they were given enough information and couldn’t think of an unhelpful or a bad piece of information provided to them.
- Others mentioned that they received conflicting information from some information sources which they found unhelpful.
- Some people found the amount of information they received was overwhelming and difficult to process.
An online survey was created and a series of engagement visits to local hospices, support groups for people with long term conditions, carers groups, Death Café and Lunch Clubs was carried out to find out how people got the information they needed.
One person Healthwatch Gloucestershire spoke to, said: “I would have liked more information on what to do after the death of my mother. What to fill in, who to tell, what happens next… it was so overwhelming at a difficult time. I knew a lot of what my mother wanted, but even so, it was so hard.”
Another commented: “For me personally I am unlikely to read a load of brochures. Some leaflets that cover the stages of grief have been useful, however the most beneficial was the face-to-face help I received.”
The findings from the survey will now go to the End of Life Care Clinical Programme Group – a group of partners including the NHS Gloucestershire Clinical Commissioning Group (CCG) set up to ensure all people and their families at the end of their life receive high quality care.
Healthwatch Gloucestershire has a seat on this board to ensure the voice of local people is heard and considered at a high level.
Julia Butler-Hunt, Healthwatch Gloucestershire’s Manager, explained why Healthwatch carried out this work: “The aims of the project were to understand and explore in more depth what non-clinical support is available locally and nationally and identify gaps in information provision.
“The CCG and partner organisations are trying to improve end of life care within the county to enable individuals and their families to receive high quality end of life care, irrespective of where they die.
“We have only heard from a small proportion of the people who have accessed information on end of life care and we do not claim that these findings are representative of everyone’s experience, only those whose story we have heard. Therefore, the report provides a useful basis on which to build further work. Our report findings include several recommendations which we hope will help to improve people’s experiences in the long term.”
Healthwatch Gloucestershire recommends commissioners and providers should:
- Consider carrying out a review of the information around end of life care currently provided on the website Your Circle.
- Consider improving the information available for those at the end of their life and their carers and families.
- Provide appropriate support and training to health and social care staff, so that they are able to refer and signpost individuals to the right support and information and the right time.
- Ensure that information about end of life care is available in as many formats as possible, including making use of community resources, and local health settings as a way of promoting what information and support is available.