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Quarter of terminally ill Scots not getting care they need new survey shows

06 February 2018

One in four Scots who have experience of a relative or close friend with a terminal illness said they did not get the care they need according to a new survey launched this week by the charity Marie Curie.

The figure is so high, believes Marie Curie, because services are not always shaped around the needs of the individual. 

People living with a terminal illness often need different care at different stages and from many specialisms within health and social care. 

Marie Curie also reveals that nearly one in three Scots (29%) are not confident that they would receive the high quality care they need if they were diagnosed with a terminal illness.

Also in the YouGov poll of 1,000 Scots, the research shows the top reasons that people feel they would not get the care they’d need. These were:

  • An increase in the number of people having more than one terminal condition (61%) 
  • A lack of health service funding (60%)
  • Higher numbers of terminally ill people meaning the health services finds it harder to cope (58%)
  • Less availability of high quality care at home (55%)

However, the survey results also show that Scots have more confidence in Scottish health and social care than they do in English healthcare - over half (54%) believe that they would get better quality care in Scotland than they would in England.

The Scottish Government’s vision is that everyone who needs palliative care will have access to it by 2021 in addition Marie Curie also want people’s wishes to be included in decisions about their care.

Commenting on the new survey, Susan Lowes, Marie Curie Policy and Public Affairs Manager Scotland, said:

“We continue to hear that terminally ill people don’t get the care they need or it comes too late. If care is not taking into account the person’s needs and their preferences then this could explain why.

“By involving patients and families in the decision that affect end of life care we can improve confidence, improve knowledge of all the options open to them, help avoid unnecessary treatment and reduce emergency emissions.

“That’s why we’ve created a new information resource called You Matter, which tells patients, families and health care professionals how to make person-centred care available to more people. There’s only one chance to get this right because you matter.”

Responding to the survey findings, Eilidh Macdonald, Policy and Advocacy Manager Scotland, at Hospice UK, said::  

“The findings of Marie Curie’s survey highlights the many challenges faced by terminally ill people in Scotland in getting the high quality care they need, at the right time, including care at home.

“The Scottish Government has committed to  ensuring that everyone in need of palliative and end of life care can receive this and also to the doubling of palliative care provision in the community by 2021.

“Hospices are integral to helping increasing choice and quality of care for terminally ill people and enabling the Scottish Government to achieve its vision.

“Almost 80 per cent of the care provided by hospice services in Scotland allows people to remain in their own homes. Hospices have long recognised the positive benefits of providing support that enables people to remain at home with their families, which can include reducing disruptive and stressful hospital admissions at the end of life.”

You Matter was created following an event with Scotland’s Chief Medical Officer Dr Catherine Calderwood in late 2017, to encourage people to think about the care they would want at the end of their life.

It covers the simple steps towards person-centred care such a preparing a Power of Attorney, letting loved ones know personal wishes and planning ahead to record the type of care you want and where you want to receive it.

Marie Curie's new resource is available at mariecurie.org.uk/youmatter

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