The difficult conversation- talking about palliative care

There are just over two weeks left for people in Norfolk to have their say about palliative care provision in the county. Healthwatch Norfolk, the consumer champion for health and social care, has been looking into the services that look after us and our loved ones at the end of life.

This is sometimes viewed as a difficult subject that people don’t want to talk about but Healthwatch Norfolk has already received over 1200 responses to its survey and there has been a clear indication that people have welcomed the opportunity to have their say anonymously, but knowing that their voice will be heard by those who make decisions about health and social care.

The survey can be taken online at Healthwatch Palliative Care Survey or you can call the Healthwatch Norfolk office on 0808 168 9669. People have until the end of January to complete the survey.

We have had a fantastic response to this survey already and we would like to take this opportunity to thank everybody who has taken part.

Alex Stewart, Chief Executive of Healthwatch Norfolk, commented:
“This project will help professionals and commissioners understand more about people’s attitudes to end-of-life care. It is one of those areas where the experiences and opinions of the public can make the most difference – all our views our equally valid as this is something we will all have to deal with at some point.”

The Healthwatch Norfolk survey comes at a time when the National Institute for Health and Care Excellence (NICE) has recently issues new guidelines for the NHS to help it to improve end-of-life care.
Once the survey has been completed and people’s responses analysed, Healthwatch Norfolk will make recommendations to commissioners and providers of care services in Norfolk as well as with those educate health and care professionals. Quite simply, the more people who take part in the survey the more powerful those recommendations will be.

Maggie Tween, who is Cancer and End of life Care Programme Manager for NHS Great Yarmouth and Waveney CCG, said: 
“Talking about death and dying doesn’t make it happen any sooner, but it can help you to receive the care you wish for. Understanding what the barriers are to this conversation, can help people to do this more easily. Please take five minutes of your time, to take part in the survey and help us understand what those barriers may be.”

Further information:

  • More information about palliative or end-of-life care can be found on the the Be Ready For It website  – www.bereadyforit.org.uk
  • The NICE guidelines on end-of-life care can be found at https://www.nice.org.uk/news/article/new-guidelines-to-improve-care-for-people-at-the-end-of-life
  • Each year, around 8,000 people in the Norfolk and Waveney area die. Research in Norfolk for the Health Overview and Scrutiny Committee among members of the general public in Norfolk showed that over 80% of people said their preferred place of death was in their home care setting.
  • Presently, only 50% of people in Norfolk and Waveney die in their normal place of residence.
  • Norfolk has an ageing population and it is estimated that one in four of us will suffer from some form of dementia. This makes it even more important to start a conversation about the sort of end-of-life care someone wants while they have the capacity to do so.
  • The UEA and Norfolk and Suffolk Palliative Care Academy (2013) also showed that 63% of staff asked, had had no training in palliative care (including advance care planning).
  • If people express their preferences before they die, they are much more likely to have these preferences met. This can be written down in an “advance care plan” and shared with family and care providers (e.g. your GP). In Norfolk this documentation is called the Thinking Ahead Yellow Folder.