More support is needed for people with complex needs and their end of life care

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Writing for Dying Matters Awareness Week 2021, Gill Campbell, head of nursing at Turning Point, talks about the importance of palliative care for those with complex needs.

A conversation many of us don’t like to think about, it can be difficult to discuss end of life care with our loved ones. In the last year, coronavirus has put death into the mainstream like never before, beaming onto our television screens every night.

For Dying Matters Awareness Week, the theme this year is ‘In a good place to die’, focussing on the importance of having plans in place and being able to talk openly with close friends and family about our dying wishes.

People we support at Turning Point with a learning disability or autism, mental health or drug and alcohol problems often experience poor end of life care. This can be due to limited healthcare knowledge on the part of their primary carers and a generalised approach to palliative care that doesn’t consider complex needs.

Everyone should have fair access to care and advocacy where needed to support them to have as dignified and peaceful death as possible. As a matter of human rights, each person should be seen as an individual; there is no right or wrong way to die, it’s different for everyone. Health inequalities affect the people we support not only throughout their life, but at the end of their life.

Health and social care providers, like Turning Point, have an important role in ensuring everyone has access to care. Using knowledge accumulated over 50 years in the sector, we can offer support and advice to palliative care clinicians when they’re supporting someone with complex needs. For example, if someone has a history of opioid addiction, then they would need higher doses of morphine to manage pain.

By being registered to the correct GP, someone can ensure they are as close as possible to primary care. As a GP is the primary contact for end of life care, it can pose a problem for someone with complex needs. People with a learning disability are less likely to have access to primary care: in 2017/18, only 55.1% of patients with a learning disability received an annual learning disability health check.

A prevelant issue within the drug and alcohol community is homelessness. Without proper identification, it’s impossible to register with a GP, meaning they would go without primary care access and likely be passed between multiple services.

Read the full blog post here.


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This content was created by Turning Point