Take action to improve end of life care

Following a national conference which shared the opportunities for people to shape their own end of life care, Suzanne Jones, Programme Lead for Personal Health Budgets in the End of Life Pathway team explains what we can do to take action this year.

It’s not very often that you hear people talking about their hopes for dying.

Perhaps this statement in itself seems odd, that people might have hopes for dying. But if you take a moment to think about what you would want your death to be like, chances are you’ll have a pretty clear idea of the ‘ideal’ death.

For most of us, talking about death feels awkward, and hard. But we have a great opportunity now, across the NHS, to have those conversations about people’s hopes for the end of their life.

The way we will be able to do this is framed by six clear commitments from the Government to improve end of life care, published last summer in response to the Review of Choice in End of Life Care.

Whether you’re a carer, patient, health and social care professional or commissioner, you have a clear mandate to take action to improve end of life care, and that begins with a conversation about what ‘good’ looks like.

The six commitments stress that people should be given the opportunity and support to:

  1. have honest conversations
  2. make informed choices about their care
  3. develop and document a personalised care plan
  4. share that plan with their care professionals
  5. involve, to the extent they wish, their families, carers and those important to them
  6. know who to contact if they need help and advice at any time.

In the work I’ve been doing since last April, I’ve been lucky to meet a great many professionals whose ambition, innovation, commitment and dedication to improving people’s experiences of end of life care, in line with the six commitments, has led to positive action and real change for local people.

Supported by the national team at NHS England, five areas across the country have been enabling people to access a personal health budget, which has meant that people and their families are supported to make informed decisions about how to spend the last days, weeks and months of their life.

Those of you familiar with personal health budgets and personal budgets in social care will need no reminder of how transformative they can be. This is about empowerment and valuing the contribution and input that people should make to their healthcare plans and decisions. For every personal health budget there is a personalised care and support plan, a plan that is discussed and agreed with the NHS and professionals, and which is designed to meet someone’s health outcomes.

In one area I’ve worked with, 83 percent of people were able to die in their preferred place of death. In another, of the 34 people who have so far had a personal health budget, not one of them chose to have a package of care that looked anything like the local traditional care arrangement.

The best progress I’ve seen is where these new ways of working are supported by and have buy-in from senior management, and where professionals have had delegated responsibility for taking decisions, thereby removing unnecessary blocks in the system.

The personal health budgets in the end of life care programme are extremely exciting and innovative, so I’m delighted we’ve had confirmation from James Sanderson, Director of Personalisation and Choice that this work is set continue for another year into 2017/18.

This programme links closely with the work being led by the patient choice team at NHS England, who are working to raise public awareness of the end of life care commitment, as well as do targeted work with local communities to ensure that the commitment is meaningful for different people and in a range of settings.

There’s lots of activity this year to get involved in around improving end of life care.

You can join the Twitter campaign taking place this week #KnowAboutMe, led by Dying Matters and the National Council for Palliative Care, to encourage people to share their wishes for end of life care.

Last week, NHS England ran a week long Twitter campaign focussing on the six end of life commitments. You can catch up and carry on the conversation by searching on Twitter for #EoLCommitment.

Dying Matters week is the 8-14 May, which this year is asking what you can do to encourage people to be more active in thinking and planning for end of life. Read more about it on the Dying Matters website.

We’ll also be publishing a report from our first year of work on the opportunities for personal health budgets to improve end of life, so keep an eye on our personal health budget webpages and Twitter for the latest news.

If you haven’t already read it, have a look as well at the Ambitions for palliative and end of life care framework, a document supported by 27 separate organisations, which set out what good looks like in end of life care from the perspective of an individual.

You can also find out more about the project, and the five areas trialling personal health budgets for end of life care by emailing me:

Suzanne Jones

Suzanne Jones is NHS England’s Project Lead for Personal Health Budgets in the End of Life Pathway. Suzanne began working in the NHS in 1975 as a student physiotherapist, and spent the first 23 years of her career working clinically, both in the NHS and in the private sector. Following the creation of PCTs, Suzanne became a clinical member of North Devon PCT’s Professional Executive Committee, and a year later Head of Physiotherapy. In 2005, Suzanne moved into commissioning, with a portfolio covering older people and Continuing Healthcare. From 2009-2014, Suzanne led Oxfordshire’s work to successfully pilot personal health budgets and prior to moving to NHS England, Suzanne was Programme Director for Community Integrated Localities in Oxfordshire. Outside work Suzanne has enjoyed several volunteer roles, most notably as a volunteer at the London Olympics and as Chair of a local parish council.