Improving equality of treatment

by Scott Sinclair
Policy and Public Affairs Manager

Scott Sinclair, Policy and Public Affairs Manager

GPs will play a vital role in ensuring that terminally ill patients get the care they need at end of life in their preferred place of choice. And this will be increasingly important under the new NHS Mandate.

When the Department of Health published the draft version of its mandate earlier this year, care for dying and terminally ill people was completely missing. This really concerned charities and others involved in caring for these people, because the Mandate sets out the priorities to which Clinical Commissioning Groups (CCGs) should align their commissioning activity.

The Palliative Care Funding Review, published in 2011, estimated that of the 355,000 annual deaths in England with a palliative care need, 92,000 people are not getting any palliative care. Without the NHS Mandate setting the expectation that care for terminally ill and dying people should be a priority for CCGs, there was real worry that this number could grow larger. Campaigners, MPs and providers came together to call for the Mandate to take account of terminally ill and dying people and a somewhat embarrassed Government agreed.

What this event shows is that when it has come to setting the priority areas for the new structures of the NHS, care of the dying tends to be overlooked. This is despite of the fact that we all die and many people need access to high quality palliative care.

It’s difficult to say why this is the case. Perhaps it is because health and social care policy at both the local and national level, is focused on preventing people from getting ill or supporting them to get better. So policy makers and commissioners have a difficult time taking into account the needs of people who won’t get better, but who are no less deserving of care and support.

At Marie Curie Cancer Care, we think it is not just about getting end of life care onto the agenda of CCGs. It’s also about how services join up to deliver person-centred care. GPs have a huge role to play in this, particularly around talking to terminally ill patients and their carers about their preferences for care and place of death.

We do know that sometimes GPs struggle to have these conversations. The recent National Survey of the Bereaved showed a large degree of variation across the country – from 41 per cent to 64 per cent –  for carers of people who were terminally ill being able to discuss their fears and concerns as much as they want. The survey also found that only 44 per cent of people who were terminally ill expressed a preference about where they wanted to die.

We think that GPs have a key role to play in driving up this preference and helping patients and families talk about their preferences for care. Once people are able to talk about death and dying in a frank way and express their preferences, it is much easier for services to be co-ordinated according to their needs.

We are enthusiastic about the potential of the new Health & Wellbeing Boards. They are designed to take a view across health and social care and drive integration between the two. This should mean put care of terminally ill and dying people squarely on their agenda.

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The recent Nuffield Trust report on Understanding patterns of health and social care at the end of life showed that people in the last 12 months of their lives were significantly more likely to use a social care service than similar individuals in the general population. 27.8 per cent of people in the last year of their lives were using some form of local-authority funded social care. Many more are likely to have been funding their own social care. And while more people used hospital services in the last year of life – 89.6 per cent as opposed to 27.8 per cent – social care is more expensive. The average local authority social care cost per person is £12, 559 compared to £7,415 per hospital user.

So, social care services are a crucial part of the care that terminally ill and dying people receive. What we frequently find is that problems occur where there is little or no communication between health and social care services.  For example, we know that patients at the end of life often find themselves stuck in hospital because the appropriate social care that would enable them to be at home is not available. We also know that people in care homes are hospitalised unnecessarily – often dying in hospital where they do not want to be – because care home staff don’t have access to the proper palliative care expertise.

This is precisely where the structural changes to the NHS present an excellent opportunity to really improve the care that people who are terminally ill and their families and carers receive. GPs have a crucial role to play in this, because they are in a position to see the patient’s whole care needs, whether they are health or social care needs.

In this capacity, GPs can really help Health & Wellbeing Boards to drive communication between health and social care providers. This could start to reduce emergency hospital admissions for people at the end of life, help them get home from hospital, and improve overall access to both palliative and social care services.

This post first appeared on the website on Tuesday December 12, 2012.