What we need to do next to develop community-based care for terminally ill people

We know that, given the choice, most people would prefer to die in the comfort of their own homes. Good progress has been made on meeting this aspiration – between 2008 and 2012, the number of people dying at home or in a care home has increased from 38% to 44%. But there’s clearly still more to do.

2013 is a key year – we are halfway through the government’s 10-year strategy for end of life care. At the National Council for Palliative Care’s conference today (19 November), I shared some of Marie Curie’s views on what needs to be done over the next five years.

A major challenge is that demographic change is working against us and our efforts to get more people into community care. As the UK population ages, the total number of deaths is expected to increase by 17% by 2030. And many of those older people are likely to have multiple conditions, experience emergency hospital admissions and die in hospital.

Breaking down barriers

We can’t change demographics. But what we can change is the fact that unnecessary barriers still exist, preventing many people getting the care they need at the end of their lives. Barriers exist for many different groups of people including:

  • Non-cancer patients. A recent Scottish study showed that 75% of cancer patients were identified for palliative care, but just 19% of those with organ failure and 20% of those with frailty and/or dementia were identified for palliative care. These figures are startling and we think the picture is probably very similar in England.

We believe that people with organ failure and dementia could benefit from palliative care over a long period of time and should be identified for that care sooner rather than later.

  • Minority ethnic patients. Our review of the research on palliative care for minority ethnic groups in the UK found that they have less access to palliative care, caused by low referral rates, poor access to information, previous bad experiences of care, and poor communication from health and social care professionals.

The minority ethnic population in the UK is relatively young. We will see more and more people from these groups needing palliative care in the future. It’s important that we get services right for them quickly.

  • Older patients. Over 85s make up the largest group of the total number of deaths but, excluding those under 25, make up the smallest proportion of those accessing specialist palliative care services. This number is increasing, but we will need to grapple with this given the nature of demographic change.

As a sector, we need to think carefully about what we can do to remove the barriers that people from these groups and others face when trying to access palliative care in the community.

Social care is vital

We also need to acknowledge how important social care is for people who are terminally ill. Those who have access to social care use less hospital care than their peers. However, local authority funded social care can still be very difficult to access. At Marie Curie we hear constantly from carers how much they struggled to get social care for their loved one and that they often were not aware that social care was available until their situation got really desperate. Tales of people waiting weeks are, sadly, commonplace. While stories of people waiting more than a month are rare, they aren’t as rare as they should be.

Government action needed

So we must keep pushing the government to take action. Free social care needs to happen, and social care access needs to be fast. We are really proud the government conceded on fast-tracking and was explicit that local authorities can use urgent procedures for terminally ill people, but we need to get to a point where this is best practice for local authorities.

The government can also help make sure everyone has 24/7 access to palliative care, that everyone is able to have an advanced care plan, and that non-specialists like homecare workers have essential training in palliative care. The right level of care needs the right funding, so we are encouraging the government to be brave and put more of its money into making the option of community care available to as many terminally ill people as possible.