Jacquie White: NHS England's national programme for end-of-life care

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  • Posted:Thursday 22 September 2016

Jacquie White, Deputy Director for Long Term Conditions, Older People and End of Life Care at NHS England, discusses the work taking place at NHS England to support the delivery of end-of-life care across the country.

This presentation was recorded at our conference, Innovative approaches to end-of-life care, on 22 September 2016.


Good morning, and thank you very much for inviting me to speak to you this morning, about what we are doing in terms of end of life, but importantly why and how we are also trying to ensure that we support improvements in end of life care across the country. I just wanted to start with some opening thoughts.  William Osler very clearly set out the importance of person centred care, treating the person, not the disease, way back in the 1800s.  Cicely Saunders as I am sure everyone recognises the statement about people, how they die, remains in the memory of those who live on.  And I think these are important statements for us to think about throughout the day when we hear about what is happening, and what we need to be doing to keep making the improvements that we are all after.

But I wanted to give you my story very quickly. This is my gran and me, a few years ago.  And my gran as she got older collected long term conditions.  She started with diabetes, she got cardiovascular disease, she ended up with heart failure, and everyone was very busy trying to treat her.  And she ended up in a care home, she died about twelve months in hospital.  At no point in her journey did anybody talk to her or to us about dying.  Nobody talked to us about preferences, nobody talked to us about choices.  She didn’t want to die in hospital, but she did.  It was a really poor experience for us, but it was also a really poor experience for gran.  So what do we know?  What do the statistics, what does the data tell us, about what is going on, and importantly what nationally we need to think about?

Well we know that long term conditions of multimorbidity is increasing. We know that currently about half a million people each year are in the last twelve months of life.  But we also now know we can diagnose frailty, and we know those with severe frailty are also in the last twelve months of life.  So that figure, that 0.5 million, is going to be increasing.  That gives us a lot of opportunities across health, across care, across families and communities to talk about journeys, to talk about how people want to live well, but importantly how people want to die well as well, and we are not really maximising that yet.  We know that 75% of deaths are from non-cancer conditions, but we also know that only 20% of people without cancer, actually get palliative care when they need it.  So we know there are inequities.

We know that at the moment only 6% of people are actually recording what those preferences are, but when they do, 82% of them actually achieve those preferences, die in the place that they chose to. We know that 25% of hospital beds are occupied by someone who is dying at any one point in time, and we know that about 40% of those people don’t have any medical need to be there.  And we know that good community care will significantly reduce the cost of hospital care, but also can reduce the cost of care in general by 20%, because we can get much more effective, much more efficient, and at the same time deliver much better outcomes.  We know that carers get a pretty poor deal with all of this.  We know that they don’t get support before people die, and they certainly don’t get very much support after people die, and that has an impact on their health, so we have the domino effect.  And in general we know that people don’t really like talking about dying, we know it is seen as a failure, we know it is not just a medical or a health issue, but a much bigger societal issue.

We know that commissioning is really complicated, and funding comes from so many different sources, and we know that we have pretty poor data and metrics. But we also know that there is evidence around systematic approaches to end of life care can really improve things.  Early identification, person centred assessments, great co-ordination, and great care planning can make a real difference to people’s end of life experience.  So how are we going to try and do some of this?  Well there are three important national strategic documents that we think are going to help, and they set out some big changes in terms of drivers and enablers.  They set out the importance of really focusing on a new relationship with patients, and with communities.  They set out the importance of new models of care, really working differently to the improved personalisation, to improve choice, and to prop the integrate services around people.  And they talk about new commissioning and financial arrangements to help make that happen, not hinder.

So we have been working with partners, 27 of them so far, but I think...and Nicola can correct me, I think it keeps increasing, as people realise and want to be part of this collective responsibility. We really believe that this is everybody’s business, and I think you will hear a lot about that today.  But if we don’t all join together and make the differences that we are after, we are only going to impact a little bit, as opposed to a significant amount.

And those partners have been working together to curate a lot of national documents, a lot of evidence, good practice, a lot of themes that have come out over the years about what end of life care really could be, and what it should look like. And that has cumulated in the publication of Ambitions.  A little straw poll, who has heard of the Ambitions document?  Well that is good, good.  And if I asked you to name the six ambitions, who could do that?  Nicola your hand should be up.  Okay right well we will do a pop quiz at the end.  But at least most of you have heard of it.  We think, and I think our 27 partners would agree, this is a really important document, it really sets out the national framework around local action, the things that we think from the evidence will make the difference that we are after.

So the vision for both the Ambitions document and all of our work, is absolutely centred around the national voices statement. The statement that has come from people with experience, the statement from people who really want to make a difference, to see things change for them, and the people who are important to them.  The six ambitions.  People are seen as individuals, we get fair access to care for everyone, we maximise comfort and wellbeing, we co-ordinate care around that person and their family.  We ensure that our staff are supported to care, and we support communities to help each other.  And each of those ambitions is underpinned by a set of foundations that are important actually for great care in general.  So these are the really important underpinning things that we need to get right.  And each of the ambitions has a person centred statement to clarify exactly what we think that ambition means to people, so what we think is the important thing to ensure we are trying to achieve.  And then within each of those ambitions there are building blocks to help people locally think about their own priorities, and to build a plan that means that they can think about where they are at, where they want to go, in terms of those ambitions and what we are after in terms of change, and where some of those quick and longer term actions need to be.

Since the ambitions document was published, as with any good document, we have had another three come through. So we have had the government’s mandate for this year which included an objective around increasing the number of people who are able to die in their preferred place of choice.  So a real clear signal from the government about the importance that they are putting on this.  We have had the CQC review of inequalities setting out some of the areas that we really need to focus on in terms of where those inequities lie.  And we have also had more recently the government’s response to the choice review which has set out six commitments.  Six commitments that focus on honest discussions, informed choices, personalised care planning and the ability to share that plan with the people who are caring for people at end of life.  Involving people who are important, and knowing who to contact at any point to get the care that is needed.

So what are we doing? Well we have set up a cross sector programme board bringing together the Department of Health, other arm’s length bodies such as Health Education England, and Public Health England, and voluntary and statutory organisations, so really representing all of those partners that we have been working with anyway to again reflect the importance we think there is on all of us working together, and taking collective responsibility for achieving this.  We have three work streams with a number of projects sat underneath those that focus on the person and their families, so how do we really maximise the physical and mental wellbeing of people at end of life?  Focusing on providers, and improving the experience of care in any setting.  And focusing and improving commissioning so that actually we stop worrying about individual organisational contracts and outcomes and payment mechanisms and think about how we really support commissioning of co‑ordinated end of life care.

We have a delivery model that includes both nationally the things that we need to do something about, the enablers, the drivers, the things that we need to change in the system. But also regional transformational support, through our managing role and clinical leads in the different areas, to really help local action, to help local change, and to embed things such as the commissioning tools, such as participation in programmes like Transform, and implementation of digital solutions like EPAX.

A number of things just to pull out. We are testing feasibility of care navigator schemes with the National Council for Palliative Care, we are testing what end of life care could look like using personal health budgets.  We are looking at improving end of life care in a particular area of inequality around people in secure and detained settings, and we have launched a community of practice.  We are looking at new community based models both through the vanguards, but also through a social finance programme.  We are looking at a digital delivery plan, so we can really think about how do we support people at end of life using technology better to improve their experience, but also how we improve the use of digital and technological solutions for services.  A variety of other things that are coming up this year including palliative care currencies that will be in the national tariff for 17/18, and a palliative care clinical data set that will be published in the next couple of months.

We are shortly, in the next couple of months, also about to launch a one stop shop for all things end of life, the knowledge hub that will be set around the Ambitions website. So for anybody who wants to know anything about what is going on, for any good examples that we are collating, for anything that all of the other partners are wanting to share, that is going to be the place to go to.  And we will make that very publicly communicated when that goes live.

So just to go back to my start I guess. This is what we really think is important, this is what we are trying to achieve using the national voices statement as our overarching anchor.  And for me that means what we need to do for my family.  For me that means what I want to see from my mum and dad, for their experience of end of life care when they get there, and what I want to experience as their daughter in terms of that end of life care.  Thank you very much.  Lots of links, Twitter, hashtags, please do use them.  And thank you for listening, and look forward to any questions that you might have shortly.


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