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Giving control over end of life care

After Warrington CCG won the HSJ 2017 Compassionate Patient Care Award for its work to improve end of life care with Personal Health Budgets, NHS England’s Director of Personalised Care celebrates the progress being made around the country to give people the opportunity to shape the support they receive:

I always remember my grandmother telling my mum and aunt that if she died suddenly not to throw away the sultana tin.

Rather than an obsession with fruit preservation it turns out this was her hiding place for a very modest amount of rainy day cash!

Aside from the contents of a pantry, talking about what’s important for people when thinking about their death remains an uncomfortable conversation.  But in order to improve the experience of death for people, their families and friends, we need to begin to shift our culture to one that embraces this important conversation as a normal stage in everyone’s life.

Death is inevitable for all of us, yet we spend much of our lives planning for events that are much less significant, and do what we can to avoid talking about dying.

In the NHS we are committed to helping to make this shift, by giving people more choices around their end of life care and having conversations about death as early as possible.  The opportunity to have a greater say in the type of care we receive at the end of life, who might support us, where we might choose to die, is something that we all want to achieve for ourselves and our loved ones.

In their response to a 2015 independent review of choice in end of life care, the Government defined six choice commitments that aim to end variation in end of life care by 2020. Together with partners across the country, NHS England is working to make these commitments a reality, supporting the Ambitions for palliative and end of life care: a national framework for local action 2015-20. In September 2017, the Government’s One Year On Report summarised the progress being made to date with implementing the commitments.

The report highlighted the progress being made to personalise care, which means that people’s care is tailored around their needs and underpinned by informed, two-way conversations with people and their relatives about what is important to them.

One way of effectively doing this is through personal health budgets. By providing people with increased choice and control, personal health budgets mean that people are able to have more of a say in decisions such as who provides their care, the type of support they have, and where they receive their care.

Since 2016, we’ve been working closely with five areas across the country to trial this new way of working, and the results are looking incredibly promising.

Worthy winners of an HSJ Award just last week, Warrington have reported that they’ve been able to increase the number of people who were able to die in a place of their choosing from just 26 per cent to 83 per cent as a result of introducing personal health budgets. Not only that, but they’re proving cost effective too, with early findings from two areas suggesting personal health budgets can cost around 50% less than conventional services, whilst still providing people with the care that best meets their needs.

We will be continuing to collect data on this over the next few months, to give us the best possible information about the impact of personal health budgets on people’s outcomes as well as on the costs across the health system.

For me then, this work is innovative, cost-effective and most importantly helping people to have a better experience of end of life care, and I’m incredibly excited to see other areas across the country continue to expand their use of personal health budgets both for people nearing the end of their lives and other groups of people, as a way of delivering more personalised care.

I’m also pleased to announce our latest figures for personal health budgets across the range of programmes we are working on, showing that nearly 18,000 people are now benefiting from having a personal health budget, a 65% increase on the same time last year. This is thanks to the tireless work of health and social care professionals across the country, who are increasingly recognising that both people and the system benefit from personalised care.

Whether it’s a conversation about sultana tins, or a bigger conversation about where you want to receive your care, the drive towards achieving a more universal model for personalised care in the NHS is now moving forward at pace.  And as we move into the NHS’s 70th year, the case for a more proactive, personalised and holistic health and social care system is growing.

If we get it right and build on the work we’re seeing here, I’m confident that we will create an NHS that is fit for generations to come.

James Sanderson

James Sanderson is the Director of Personalised Care at NHS England, working within the Strategy and Innovation Directorate to oversee the strategy and delivery for a range of programmes that are helping to empower people to have greater choice and control over their care. This includes the Personal Health Budgets programme, Integrated Personal Commissioning (IPC), Shared Decision Making, Person-Centred Care, Maternity Pioneers and developing and implementing new models of delivering patient choice.

James joined NHS England in November 2015, and was formerly Chief Executive and Accounting Officer for the Independent Living Fund (ILF). The ILF was used to support disabled people across the whole of the UK to live independent lives through the provision of direct payments enabling the purchase of personal assistance support.

After graduating, James embarked on a career in the private sector before joining the ILF in 2002 to undertake a number of senior roles including Operations Director with responsibility for front line service delivery, and Business Development Director with responsibility for performance development, change management and information governance.

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