Fabian speaks to the Palliative Care Congress in Harrogate 14th Marchg 2014

Palliative Care Congress, Harrogate, Friday 14th March 2014

Parliament and the Hospice Movement

It is a great privilege and a pleasure to be here today at the Tenth Palliative Care Congress in the lovely town of Harrogate, a town I know well having lived in nearby in the neighbouring small village of Leeds for the past thirty five years. I am grateful to the organisers for inviting me and I'm aware that mine is the last speech of the three day meeting so I hope that you have had a really excellent and constructive congress. I will try not to detain you for too much longer.

Most people in Britain have no idea what an "All-Party Parliamentary Group" is and the only time they ever hear about an APPG is when there is some scandal about one in the news, but rarely do the public ever hear about some of the good work done by these informal collections of MPs and Peers.

There are now several hundred different APPGs in Westminster covering almost every subject from Body Image to Bingo, from Fibromyalgia to Flags and Heraldry and country groups from Canada to Croatia and East Timor to Ecuador. Most meet rarely and are attended by few members of either House, but some, notably for example, the Cycling Group or the Justice for Equitable Life Policyholders Group and - just two days ago - the Russia Group, can attract tens if not hundreds of members of both Houses for lively and relevant debate on an issue of the day. These Groups have to be registered with the Parliamentary authorities and must hold and AGM every year with elected Officers and a minimum of ten Government and ten Opposition Party MPs or Peers to qualify as a Group. In addition, any outside secretarial assistance or financing must be properly declared in the name of transparency.

The Hospice and Palliative Care All-Party Parliamentary Group has been established now for many years, at least since well before I was first elected to Parliament in 1997. When Conservative MP and Chair, Marion Roe, invited me to join the Group in 2001 as Vice-Chair - because I had the wonderful St Gemma's Hospice in my Leeds North East constituency - I was delighted to become involved. That's when I first came across the National Council for Palliative Care who were part of the joint secretariat together with Help The Hospices. I soon realised the important role that both organisations played in this particular APPG because, not only was it reasonably well attended by MPs and Peers, but sometimes more than a hundred Palliative Care professionals came too, attracted by the lovely surroundings of the Palace of Westminster as well as the excellent agendas planned by the secretariat.

It's a strange thing to say, perhaps, but I found the meetings - which often discussed end of life issues and care of the dying - to be uplifting and inspiring and I never left the meetings feeling depressed, in spite of the subject matter sometimes being a little depressing.

At the end of the 2001 Parliament, my Conservative colleague, Marion Roe, retired from the House of Commons and I was elected as Chair of the Hospice Group at our first post 2005 election meeting. It was in some ways good timing as my dear Mother had died during the general election campaign itself. She was a fervent supporter of the Hospice Movement and had requested in her will that in lieu of flowers, mourners should donate money to Help the Hospices.

Throughout the 2005 Parliament, thanks to the good work of the two organisations which formed our secretariat, we held many well-attended and excellent meetings. It was sometimes difficult for me as a Labour MP to hear some of the criticisms from Palliative Care professionals of the Labour Government during what was to be its last term in office (until the next election of course) but some serious discussions were held and views formed or changed as a result. We met at least three times a year during that five year Parliament and then in 2010, Labour lost the general election and the Conservative and Liberal Democrat Coalition was formed.

The Coalition Parties both supported the Hospice Movement in their manifestos but the Coalition Government takes a different view of Palliative Care. I thought that it might be of interest to you if I summarised some of the subjects we have discussed in our meetings over the past couple of years and tell you about some of the speakers we have been privileged to hear.

On 14th March 2012 we debated the future of long-term care and support - and the integration of health and social care at the end of life.

On integration at the end of life we heard about the need for seamless movement between health and social care but that patients often face a constant battle to get the services they need.

Sanjay Chadha, a Multiple Sclerosis sufferer, gave the example of the respite care for which he is entitled to four weeks' worth each year - but that each time he asks for it - he has to justify all over again whether he really needs it.

Andrew Dilnot, Chair of the Commission on Funding of Care and Support, provided a characteristically energetic presentation on the Commission's proposals for a cap on individuals' contribution to care costs at £35,000 a proposal which could cost the taxpayer £1.7billion a year.

Tom Hughes-Hallett, then Co-Chair of the Palliative Care Funding Review, followed that discussion and described the social care system as "beautifully designed to frustrate dying people." He called on the Government to implement "the most important recommendation" of his review: the introduction of non-means tested social care for people at the end of life.

At the same meeting, Liz Kendall MP, Shadow Health Minister, reflected that:"at the end of life we see some of the very best and very worst aspects of the social care system." She described the current funding of long-term care as:"one of the biggest challenges we face as a country and society" and restated her commitment, through cross-party talks, to finding a sustainable solution.

John Glen MP, a member of the All-Party group, said that this was a key issue for his Conservative party too, and that a consensus was needed before going into the next election to ensure that the issue was not reduced to the usual political football.

At our meeting on 12th July 2012 we focussed on Dementia and the End of Life

A functioning Dementia and End of Life Care system had to make sure that the last years of dementia patients' lives are not lost years.There was a clear need for a much more and better integrated system.

Paul Burstow MP, then Minister of State for Care Services, stated that free social care at the end of life "should be our ambition", but that the government needs to understand better the funding implications of this worthy ambition. He said that a decision about offering free social care at the end of life should be made on the basis of affordability but made a commitment to improving diagnosis rates, as part of the Dementia Challenge, he said:

"One of the reasons we need an early diagnosis is that it will help us to improve advance care planning. [This] ensures decisions about end of life are made at the point when the person with dementia still has an ability to shape decisions [and can] express their preferences, wishes and feelings about the type of care they receive and the place in which they receive it, and, ultimately, the place in which they die".

As Chair, I drew the meeting to a close with an important reminder that:

"In a time of reform and austerity it is vital that we do not lose sight of the people whose lives are affected by dementia; we need to ensure that they and their families get the care and support that they need right until the very end of their lives. We only get one chance to get it right for them".

Our meeting of 20th March 2013 looked at how to keep end of life care as a national and local priority in the changing health and care landscape.

While the Government's reforms are creating significant change in the health and social care environment, people's needs remain constant and that excellent palliative and end of life care must still be provided, regardless of the current uncertainty and handover in roles and responsibilities.

A new publication was launched at the meeting, produced jointly by the National Council for Palliative Care and Marie Curie Cancer Care, called 10 Questions to ensure good end of life care in your area. This document aimed to help people in their localities scrutinise and challenge MPs, GP Commissioners, Local Councillors and other decision makers regarding end of life care.

The meeting heard from a group of people from West Sussex about what end of life care is like in their area and what they are doing to try to make it a local priority.

Mandy Paine, a regular attender of our meetings who is in a wheelchair and suffers from Congestive Obstructive Pulmonary Disease (COPD), gave a powerful account of the benefits and challenges of accessing end of life care in West Sussex and the importance of local campaigning to help ensure that commissioners and providers deliver excellent care to all. She told me later that after every meeting in the House of Commons she makes a determined effort to ensure that she will be present at the next one. So far, she has confounded some of the clinicians by surviving with the disease for far longer than anyone could have predicted. Mandy is an important constant and welcome contributor to every meeting, and long may that continue.

At the same meeting, Mandie Sunderland, Chief Nurse, and Dawn Chaplin, Clinical Dean for Nursing, from Heart of England NHS Foundation Trust (HEFT) joined us to talk about their three year partnership with the Dying Matters Coalition to develop a programme of compassionate care and support in their Trust.

At our last meeting held on 4th December 2013 we returned to the subject of Dementia by holding a Joint discussion with APPG for Dementia whose Chair is Baroness Sally Greengross. The meeting focused on the need to rise to the Prime Minister's Dementia Challenge and ensure that the last years of life are not lost years for people with dementia and that we move towards a more integrated health and care system, a theme which all the main political parties have now embraced.

We examined whether it is feasible to have the choice of the right to die at home. Both Norman Lamb MP, now the Minster of State for Care and Support and Andy Burnham MP, Labour's Shadow Secretary of State for Health (and previous Secretary of State for Health), addressed the meeting and pledged their support for joining up these important priorities. He said that too many GPs fail to give a timely diagnosis of dementia, because of they believed that nothing could be done for these patients. Andy highlighted the importance of an early diagnosis in offering people the opportunity to plan for their future end of life care and to make plans so that they can live their last years of life well.

He also emphasised the need to create a more integrated health and care system so that people with dementia can have all of their needs met by the same system, right up until the end. He set out his vision for "an NHS that sees the whole person" and does not fragment need into the categories of the physical, social and mental.

That of course naturally leads me on to the current Care Bill being debated in Parliament at the moment, which whilst attempting to address some of the issues which we have raised in our APPG over the years, has also had some very controversial clauses in it which were voted on just this week.

The new Care Bill, though, aims to:

  • Make provision to reform the law relating to care and support for adults and the law relating to support for carers;
  • to make provision for safeguarding adults from abuse or neglect;
  • to make provision for care standards;
  • to establish and make provision for Health Education 
  • to establish and make provision for the Health Research 
  • to make provision for integrating care and support with health services

The Bill is supposed to ensure that the law focuses on the needs of people and will make their care clearer and simpler. Whilst the Opposition tabled a number of amendments to the Bill, all of which were defeated, Labour did not oppose the Third Reading so the Bill now goes to the House of Lords. Here are a number of observations about the Care Bill:

  • Whilst Government reforms are creating significant change in the health and social care landscape, people's needs remain constant.
  • People are living longer with more complex end of life needs.
  • The Government says the current system is confusing and 
does not help people get the care they need, nor does it 
currently provide any meaningful choice.
  • 457,000 people need palliative care every year.
  • 92,000 of these are not currently reached by any of the NHS's 
  • The new NHS Commissioning Board, renamed NHS England, 
starts work on 1st April and will be responsible for End of Life 
Care Strategy.
  • An amendment was introduced by former Health and Care 
Minister Paul Burstow to strengthen provisions that relate to terminally ill patients so that local authorities would be obliged to treat terminally ill patients' care as urgent rather than discretionary. Unfortunately, the Minister, Norman Lamb - Paul Burstow's successor, - stated that he did not think a duty in this area would be appropriate. Sadly, the amendment was withdrawn before it could be voted on.
  • Campaigners are pushing for non-means tested social care for people at the end of life saying that how we treat patients at the end of their lives shows what kind of society we are.
  • A Government review during the course of this year will determine when an offer of choice for all on how to have a decent and dignified death, and where that should be, could possibly be introduced following the review.
  • Pilot projects are underway to develop a system for free end of life care. The Government is committed to this aim, but won't say when it might be implemented.
  • There is a crying need for a consistent approach to End of Life Care across the country.
  • The Care Bill sets out when a Local Authority has the responsibility to meets someone's care and support needs and how it might do so even if it is not obliged to. Local Authorities have a new responsibility to provide a care plan and a legal obligation to review that plan periodically, but will they get the funding necessary to implement the plan?
  • Local Authorities will take on a new function to make sure people in their area receive services that prevent their care needs becoming more serious; they will also need to make sure that patients can get the information they need to make a good choice as well as making sure that there is a good range of providers to choose from. 
Local Authorities will also need to provide information on what is available, who can provide which services, where a patient can find independent financial aid, and how a patient can raise concerns about their care. 

I hope that this afternoon I have given you a picture of how Parliament discusses and deals with Palliative Care and how important the subject is to so many Parliamentarians, as well as to their constituents. MPs receive a great deal of criticism for not working hard enough on behalf of the people they represent nor caring enough about their needs.

Call me biased and partisan here, but that is not my experience as one of them. I have seen so many colleagues, from all political parties and in both Houses of Parliament, devoting a great deal of their time and energy into trying to do their best for constituents who have End of Life Care needs.

Many of you in this room this afternoon may have previously attended one of our All-Party Group meetings but if you haven't, you are warmly invited to come to the next one on Wednesday March 19th at 4pm in the Attlee Suite in Portcullis House,Westminster. Your attendance and contribution will help all of us make better decisions and, I hope, offer better provision in one of the most important areas of life in this country: the care and support for all people at the end of their lives.

Before I finish this afternoon, I must pay tribute to my friend Eve Richardson who retires as Chief Executive of the National Council for Palliative Care at the end of this month. I am sure that I speak for all of us in wishing her a very happy retirement, though knowing Eve as I do, we have not heard the last of her We wish her successor, Clair Henry the very best for her new post.

I also want to thank my old friend and York University contemporary, David Praill, who runs Help the Hospices - I was very impressed when I visited their Headquarters near King's Cross in London last year and like Eve, David has provided me with huge support and help over the years that I have been privileged to chair the All-Party Group.

As Sir Tom Hughes-Hallett reminded us at a recent Westminster Health Forum conference in London: some things have not changed - there is still a one hundred percent chance that we will all die.

It's up to all of us, especially Parliamentarians, to make sure that every death is a good one so that we can all be assured of dying well.