Opinion  

In the run up to World Hospice and Palliative Care Day on 6 October, a day for celebration of what has been achieved, it is timely to look at what we hope for in the government's much-heralded end-of-life care strategy.

Due to be published this autumn, it will affect all adults in England and has the power to make a lasting difference to how we are cared for at the end of life. Its development is strongly welcomed. But what will it deliver and what will it mean for nurses and others on the front-line caring for people at the end of life?

In August, the charity Help the Hospices published recommendations for what it would like to see. Broadly, these can be summarised as priority, co-ordination and transparency.

First, we believe that commissioning in end-of-life care needs to be improved and that there should be a named lead for palliative care in PCTs. Just as a variety of services are need to meet maternity needs, so too are they needed for those moving towards the end of life. Better commissioning would help to achieve this. As part of this, we believe that there should be mandatory joint commissioning of health and social care. There is no point in having the services of a palliative care consultant if there is no district nurse available and no one to assist individuals with their personal care needs.

Hospices need consistent funding
Hospices, which are mainly independent local charities, have always depended on the generosity of the public to get by. While charitable fundraising will always play a role, it is unacceptable that hospices do not receive full and consistent payment for care delivered on behalf of the NHS. A fairer funding system must address the £150-£200 million subsidy the charitable sector provides for specialist palliative care services, for which the NHS would otherwise have to pay.

There must also be a 24-hour approach to end-of-life care. We need helplines for professionals and the public and round-the-clock availability of district nursing. Patients and their families should be entitled to a named co-ordinator from the point of diagnosis, an advanced care plan and access to individual budgets for social care support, rather than care always being arranged directly by the local authority.

Training is also a key area. Staff in care homes need more support in coping with the needs of the dying, especially for those with additional needs such as dementia. NHS and social care services should work closely with the charitable hospices that already provide education and training.

Continuity of care
We also need to address the role that society in general plays. In particular, society should attach greater value to the job of giving sensitive personal care to people approaching death. Many of these tasks, which would have been carried out by district nursing teams, are now undertaken by social care workers, who are often poorly paid with inadequate training and support. This leads to high staff turnover and a lack of continuity of care - a real issue, particularly for patients whose health is deteriorating.

There are many challenges, but there is much to celebrate. Those of us who have had the privilege to talk to people facing the end of life know just how much good care is valued. As one daughter said about the care her mother received: 'I just felt like everyone was working together for us - the GP, the hospice, the district nurse - all of them pulled together. That's what really impressed me and it made all the difference to how we coped.'

That has got to be worth working for and it's what the strategy needs to support.

Jonathan Ellis is director of public policy and parliamentary affairs at Help the Hospices, the national charity for the hospice movement.

Further information

• World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. www.worldday.info
• Help the Hospices. www.helpthehospices.org.uk

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