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Last Updated: Saturday, 10 December 2005, 06:01 GMT
Call for focus on palliative care
By Jane Dreaper
BBC News radio health correspondent

The idea the "one should die proudly when it is no longer possible to live proudly" was first expressed by the philosopher Nietzsche.

It is a sentiment that the medical idea of palliative care aims to address - by providing dying people with pain relief, and by supporting them and their families.

Nursing home
The report calls for improvements to care of the terminally ill

But a report by the NHS Confederation, which represents NHS managers, paints a picture of palliative care services which are often overstretched, and it says good care must be available for all dying people, and not just those with cancer.

Sarah Lewis is looking at photos of her mother.

"You can see she's extremely emaciated. Her hands are clenched into tight little fists."

Dementia had slowly robbed a gritty woman of her independence.

Sarah Lewis was grateful to be able to get her mother a place in a well-staffed specialist nursing home.

The injustice of her having to have a painful and slow death is always with me
Sarah Lewis

But her mother's death almost a year ago has left her with a sense of injustice.

"We did everything we could to make sure there was no misunderstanding, that we did not want our mother to suffer a long slow death with great discomfort - but unfortunately that is just what transpired.

"It seems to me that the National Health Service hasn't really got to grips with the mundanities of death which may be very painful, very unpleasant and yet not be cancer."

'We are an ageing population'

That view is acknowledged in the NHS Confederation report, which is an attempt to push palliative care up the political agenda, ahead of the government's White Paper on care outside hospital, which is expected in the New Year.

Jo Webber, the confederation's deputy policy director, says that places in the hospice system need to be expanded:

"What we're asking for in the White Paper is for people to really see this as central - after all we are an ageing population so more people are going to be older over the next few years and may need these palliative care services."

Research shows that many more people die in hospitals and care homes than would like to.

The confederation's report says that better services in the community would enable more people to "die well".

Eve Richardson, head of the National Council for Palliative Care, says: "Over half a million people die each year, and we estimate that over half that number deserve and should get good palliative care but sadly they don't.

"This is not on the core curriculum for health and social care professionals - therefore we think it should be."

But good care isn't cheap.

The government' has already announced more than 60m to provide better services for dying people.

And Labour's election manifesto in May promised a doubling of the investment in this area.

'Injustice'

A Department of Health spokesperson said: "The NHS Confederation report confirms much of our thinking and endorses the initiatives which have already been put in place to address issues at the end of life - although much more remains to be done.

"It also reinforces many of the messages which we have heard from the general public during our listening exercise."

The test will be whether this money can help prevent experiences like Sarah Lewis's.

She says: "There isn't a day that passes when I don't remember the death my mother had - nobody could have prevented her having dementia - but the injustice of her having to have a painful and slow death is always with me."



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