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Palliative Care Services Reform - England Needs to Heed Its Neighbours

07/07/2015 09:41 BST | Updated 06/07/2016 10:59 BST

In May this year the Scottish Parliament decisively rejected a bill to legalise physician assisted suicide. This decision followed a very thorough committee inquiry by the Parliament's Health and Sport Committee. And now Scotland has announced a comprehensive review of its palliative care services to see what needs to be done to improve care for all who find themselves terminally ill.

During their inquiry members of the committee heard fears and past experiences of inadequate care described to them. They also heard clearly that distress does not have to be endured: with good care and meticulous attention to patients' needs, their last months, weeks and days can be transformed. They heard repeatedly how people can live well and fully despite severe and life- limiting illness. In short, they heard what twenty-first century palliative care can do.

Britain was the birthplace of today's hospice and palliative care. It was just over 50 years ago that the late Cicely Saunders started the modern hospice movement, with her scientific and compassionate approach to relieving distress in the dying. Her description of 'total pain' and her statement that 'the way that a person dies lives on the memory of those left behind' have become central points of reference for hospice and palliative care today.

But 2013 proved a bad year for healthcare overall. The Liverpool Care Pathway, a guideline for doctors treating patients in the last days of life, was withdrawn following a critical report into its use in some places. Poor care in Mid Staffs was exposed by Robert Francis's inquiry and Camilla Cavendish's report highlighted shortcomings in training of healthcare assistants and the disjointed nature of current nursing services. Other reports that year also made strong recommendations with an overall tenor of 'never again'. And then came the latest Ombudsman's report, searingly critical of some aspects of current NHS provision.

Many hospices today remain, to a large extent, charitably funded. This has meant that both adult and children's hospice services tend to be in geographical clusters, often where fundraising is easier. Yet a terminally ill person with complex needs can be anywhere - disease does not respect geography, nor does it respect the clock or the calendar.

Wales, where I lead palliative care services, has a national policy that specialist palliative care must provide seven day services. Without this can, patients at home, and their families, can feel 'stranded' out of hours, not clear whom to call or what to do in a crisis. Without specialist advice available to community doctors and nurses when needed, some patients will inevitably be left far too long before complex symptoms are addressed.

It is unrealistic to expect every doctor or nurse working in the community to have specialist knowledge of modern palliative care, but we need to ensure that every one of them can recognise distress and know how to call for help if they are unable to relieve it. Without that back-up patients will be failed. That is why I have introduced my 'Access to Palliative Care Bill' for England.

England has the chance through my Private Member's Bill to improve care. The Bill would require all commissioners to ensure their patient population has access to seven day specialist palliative care services, that patients and their families have a clear point of contact in a crisis, that there is advice available at all times to front line staff caring for dying patients and that such staff have all received core training in good end of life care.

Patients feel particularly vulnerable out of hours and fear not being listened to. As is often said, "The mark of a civilised society is the way it looks after it's vulnerable".