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NCPC’s Director of Policy Simon Chapman looks back on his career so far

Author: Leila Hawkins
27 June 2017

Simon Chapman, the Director of Policy and External Affairs at the National Council for Palliative Care (NCPC) and Dying Matters, is leaving the charity this week. In this interview he reflects on his career and his greatest achievements.

Why did you join NCPC? 

I was a barrister in private practice and wanted to work in the voluntary sector.  I had an interest in end of life care, so at the end of 2002 Working for a Charity organised a 20-day placement for me with what was then called the National Council for Hospice and Specialist Palliative Care Services (which became NCPC in 2004).  Following that Eve Richardson (the then Chief Executive) asked me to stay on so I did that part time as a consultant, working with other charities as well, and joined full time in 2009. 

How did you move into policy?

As a barrister I had an interest in law and public affairs. Also being a parliamentary candidate in the 2001 general election had made me realise that what I really enjoyed doing was working with people towards a common cause. Being a barrister is pretty adversarial, and I found I was much better at collaboration and campaigning. 

The work I started doing at NCPC was about strategy, ethics, new projects and income generation. Quite a mixed bag. The first big project I did was the business plan for a new palliative and end of life care policy unit.  At that stage palliative care was very much a cancer-focused model. We started working with people like Jim Beattie, a cardiologist who became one of our trustees, and he said this was a human rights issue, the people he cared for had exactly the same needs as people with cancer but were not getting access to specialist palliative care.  From the mid-noughties onwards our policy unit, led first by Erica Young and then Lucy Sutton before I took over in 2009, really started to make the case for palliative care for all.

The next one was the 2005 general election. I thought it would be a good idea to have a palliative care manifesto, so we put the first one together and campaigned ahead of the election. We secured a fantastic pledge from the incoming Labour government to double the investment in adult palliative care. That led to the national End of Life Care Strategy in 2008, which was the first strategy of its kind in 60 years of the NHS, and importantly was given some significant funding. That unleashed a huge amount of energy and focus on improving palliative and end of life care across the country, led by Sir Mike Richards, then the National Clinical Director for Cancer and End of Life Care, with support from lots of people including Claire Henry. 

At the same time we were working on the Mental Capacity Act. I was heavily involved in the pre-legislative process, shaping and informing it, working with our Ethics Committee and  Dr. Teresa Tate.  As part of our country’s human rights legislation, the Act provides the framework to empower people so they can take control over the care they have, supporting advance care planning. I wrote the first sector-specific guidance on the MCA, and we have just published an updated edition.

What challenges have you faced? 

Palliative and end of life care were not seen as core business by the NHS, but over the last 15 years that has changed. In 2015 the government made a national commitment to explicitly include it in all major NHS programmes. We still need to make sure that happens, and you can never take it for granted. However, it is much more mainstream than it was 15 years ago.

How has NCPC changed since you joined? 

It was a pretty small organisation when I first came to it, with only about 10 people in the team.  It has never had a team of more than about 20. Often people have been surprised by how small we were because of the impact we had.

One of the first things I did on arriving was write a paper saying it had to change its name. When that happened, our focus was no longer just about promoting specialist services, it became open to everybody including care homes, GPs, commissioners, and members of the public who wanted to campaign for change. 

As a result of the End of Life Care Strategy we were asked to set up Dying Matters. We started doing that in 2009, and that really enabled NCPC to become a much more public-facing organisation and to campaign and advocate for people's experience of end of life care, and for society to be better informed and much more confident about discussing dying, death and bereavement. One of the things we are proud of is our opinion poll last year, that said in the last five years half the country has become more confident talking about these issues. 

From being largely cancer-focused and not a core issue for the NHS, how has the palliative care sector changed? 

When I first joined, palliative care was seen as a bit niche. I remember a TV documentary where a young consultant said we were basically seen as a bunch of tree huggers by our colleagues. But over the last 15 years there has been a lot more emphasis on evidence and academic rigour. There is still a long way to go in relation to that, but it has transformed. 

At the same time that comes with a bit of risk. The power of palliative care came from being countercultural. When Cicely Saunders started the modern hospice movement, she wanted to challenge the way the NHS and the statutory sector were working in end of life care. The danger if you lose some of that countercultural spirit is that some of the most important things about palliative care will be lost as well. Dying, death and bereavement affect all of our lives, and while sometimes there is a strong medical component there is not always, and the problem is that it can still largely be seen as a predominantly medical event.

The new phase for Dying Matters focuses not just on having conversations but about practical support, which we launched with this year's awareness week and the theme "What Can You Do". This is really important for the future. The response from our members was incredibly positive – we had the biggest and most active year yet.

Which are your highlights in terms of what you have achieved at NCPC? 

It is quite tricky thinking about that over 15 years.  I think the name change was the first big thing. Then setting up the policy unit, the palliative care manifesto, and the work around the Mental Capacity Act and advance care planning. Getting end of life care into the Prime Minister’s Dementia Challenge, after it had initially been left out, was very important. Eve and I had to go into Downing Street to make that happen. The growth of joint working in policy and public affairs, which led to the Choice review and the National Commitment.

It has been a real privilege as well to lead Dying Matters and focus it onto public health palliative care and community development. There is much greater strength of collaboration in the sector now than there was when I first came, and NCPC was set up at the request of the government to bring a very fragmented sector together. I think we have achieved that. 

What have you enjoyed the most? 

The collaboration and partnership with really creative, determined people who are absolutely committed to making sure that people in this country have the best possible quality and experience of care and support with dying, death and bereavement. The NCPC team have been wonderful to work with, as well as colleagues in other organisations who have worked with us and given their time and expertise very generously. Most of all working with people with lived experience who share their stories, and work with us to effect change.  

What do you plan to do next?  

I’m going  to take a bit of a breather, and then I want to work with people to make radical change happen. This is urgently needed not just in palliative and end of life care (as Hospice UK is talking about) but across the whole health and social care system. Genuinely radical change which is both sustainable and transformational, to use current buzzwords, is only going to come if we do co-production and partnerships properly.

At the moment I see those words used rather hollowly, but authentic co-production and partnership, working with people and communities as equals, takes time, effort and energy. We need new relationships between the system and organisations and the people and communities we are all supposed to be serving. I am looking forward to working with organisations who want to do more than embrace this, and actually make it the foundation of their way of working. 

For more information visit NCPC

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Comments | 1

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Maddie Blackburn

It has been a huge pleasure working with you over the years. All the best for the future. You will be hugely missed within the sector

07/07/2017 21:52:32


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