Experiences of palliative and end of life care in Sheffield
Download (PDF 2.42 MB)Summary of report content
Healthwatch Sheffield were commissioned by South Yorkshire Integrated Care Board (SY ICB) to help them understand people’s experiences at the end of life – both people needing care, and also their family members and relatives. They undertook a survey and interviews. They spoke to 268 people altogether.
People’s experience of care and support differs across South Yorkshire, with Barnsley coming out highest in satisfaction scores and Rotherham lowest. However, the number of respondents in Barnsley was low compared to the other areas. The report looks at satisfaction with end of life care in a number of settings and services.
Just over a third had an advance end of life care plan compared to over two in five who didn't. Over two thirds of those that had had been asked where they wanted to die. Not everyone was able to die in the place of their choice, often due to medical issues. People described:
- Not knowing whether there was an Advance Care Plan in place
- Advance Care Planning needs to be timely
- People wanted to make informed decisions about whether they want to be resuscitated
- People value information about what to expect
- Family and friends help people communicate their wishes and make sure they are fulfilled
People generally had their basic medical needs met, but often didn't get integrated care. They mentioned problems with:
- Access to the right equipment
- Getting the pain relief they needed
Nearly two thirds felt they could ask for help at any time of day or night, but only half said that their friend or relative received support to live their life the way they wanted to.
Just over two in five felt that services worked well together.
Nearly three quarters felt that staff had respected the dying person's privacy and dignity.
Over seven in ten felt that the dying person had been treated with compassion
Nearly two thirds felt their loved one's wishes had been respected
Less than half felt their loved one had been supported with financial and legal matters.
Just over half of people (56.4%) thought that the person had been given information in a way that worked for them.
Just under two thirds of people (63.1%) felt their friend or relative was told about their end of life diagnosis in an appropriate way.
People's confidence that their loved one was getting the right care and support varied. Low confidence was mainly associated with bad experiences. There was a similar variation when carers were asked about their level of confidence in getting the right support and care as carers. Many carers felt supported by their friends, families and communities. However:
- Supporting people at end of life can take a toll on people’s physical and mental wellbeing
- Bad experiences of end of life care and support can have a significant impact on people’s mental health
- Mixed experiences of the level of support and where it comes from
- Varied family involvement in care planning and decision making
- Lack of the right information at the right time
- Families fill the gaps in care and support left by services
The report concludes with a summary of cross cutting themes, including culturally appropriate care, and people's ideas of how to improve end of life care.