Terminal Illness: Support — House of Commons, 2016-12-05
Topic: Health
Catherine McKinnell (Labour, Centre-left): It is appropriate that this debate, on an issue that will touch millions of people and their families at some point in their lives, should take place today, given that 5 December has been designated International Volunteer Day by the United Nations since 1985. Its purpose is to "celebrate the power and potential of volunteerism" The UN states that IVD is "an opportunity for volunteers, and volunteer organisations, to raise awareness of, and gain recognition for, the contribution they make to their communities" This year’s IVD theme of #GlobalApplause seeks to give volunteers around the world the recognition they deserve, while also "giving a hand" to potential volunteers by encouraging them to give up some of their time for others Of course, the link between IVD and this debate is that the vast majority of end-of-life palliative care outside hospital is provided by the charitable sector and only partly funded by the NHS. For that reason, people who donate their money to—and, crucially, their time through volunteering with—end-of-life-care charities play an immeasurably important role in ensuring that the majority of us, and our loved ones, will get the right care and support when we are dying. We will need more volunteers as more people die each year and the demand for high-quality palliative and end-of-life care increases, which is something I will return to later I have long been an advocate of the need for good palliative care and support to be available to those who need it, but it is as a result of my recent work locally with the charity Marie Curie that I sought this debate. As I am sure all hon. Members will know, Marie Curie has been providing care and support for people living with terminal illness and their families for the last 65 years. It was able to care for more than 40,000 people across the UK in the last year alone, in large part thanks to the support of more than 10,000 volunteers In October, I had the absolute privilege of meeting my constituent Don Lowther, who has terminal cancer, and Faye Morrison, a 21-year-old student from Gateshead who has befriended Don through Marie Curie’s helper service. This pioneering service, which has been available in the Tyne and Wear area since last year, matches trained volunteers with people living with terminal illnesses, providing them and their loved ones with companionship, emotional support and practical help with the aim of ensuring that their quality of life is the best it can be in its final stages Since last December, Faye has been making regular visits to see Don in his home, and over that time they have developed a close friendship. Faye is able to ensure that Don, who can no longer drive, can still get out of the house to places such as North Shields for fish and chips. Perhaps most importantly, Faye is a non-family member who Don can talk to and share his concerns with. The impact of Faye’s volunteering on Don’s quality of life, and that of his wife’s, is clear to anyone who meets them, but Faye is the first to say that she has—from giving her time and being part of the helper service—gained as much as Don has The Marie Curie helper service also helps to co-ordinate local services, enabling people affected by a terminal illness and their families to understand what is happening, and ensuring that they are supported throughout this challenging journey. In the case of Faye and Don, this has involved signposting Don to the services provided by Marie Curie’s Newcastle hospice, which I also heard more about from Lead Nurse Michelle Scott when I recently visited this facility, which is located in the west end of the city in the constituency of my hon. Friend the Member for Newcastle upon Tyne Central (Chi Onwurah) I saw for myself the newly opened complementary therapy and relaxation area, with its Alnwick garden theme, and the different types of accommodation available to patients and their carers, including for respite care. I learned more about the wide range of medical and nursing care, physiotherapy and occupational therapy available, and about the practical, psychological, emotional and spiritual support provided by the highly experienced hospice team. What I took away most from my visit, however, was the hospice’s absolute dedication to celebrating life and to ensuring that those using its services—whether terminally ill parents with young children or those, such as my constituent Don, who use their day services and activities—receive the best possible support and enjoy the best possible quality of life as their time comes to an end. Don told me he was concerned that once he stepped inside the hospice, he would never leave, but that is just not the case. Thanks to the helper service and Faye, he was signposted to the care and support provided at all stages of terminal illness. That support is not negative about death and dying, but treats them as a part of life. Of course, not all Marie Curie’s nursing care takes place in a hospice setting, because the charity’s nurses also provide overnight care in people’s own homes Marie Curie is certainly not the only charitable organisation providing end-of-life care in the Newcastle area. Other vital organisations include Macmillan Cancer Support, with whom I recently had the pleasure of enjoying coffee and cake at the Lemington Centre and St Cuthbert’s Primary School in Walbottle, as well as St Oswald’s hospice in Gosforth, which has worked to "make the most of time and improve quality of life for everyone in the North East living with an incurable condition, and their families" for the past 30 years Despite the incredible efforts of these charities and the NHS for people who are dying, the risk that they will not get the care that they need to manage their symptoms and to maintain their quality of life until the end of their life is worryingly high. Research undertaken last year by the London School of Economics on behalf of Marie Curie found that a deeply concerning 92,000 people who need palliative care in England each year are not receiving it. That means that one in four people are not getting the good end-of-life care—care for managing pain and other symptoms, alongside psychological, social and spiritual support—that they clearly need. The people who miss out most frequently on this support are those with a terminal illness other than cancer, such as heart failure or chronic pulmonary disease. Indeed, written evidence submitted by the National Council for Palliative Care to the Health Committee’s inquiry into end-of-life care, which was published last year, drew attention to the fact that people with cancer access over 75% of specialist palliative care services, although cancer causes around 30% of all deaths. Concerns about the availability of palliative care for people with non-cancer diagnoses have been raised with me by a constituent living with idiopathic pulmonary fibrosis Others who are likely to miss out are people aged over 85, including those with dementia, despite the fact that dementia is now identified as the leading cause of death in England and Wales. Written evidence submitted by Age UK to the same Health Committee inquiry highlighted that while one third of all deaths are of people aged over 85, only around 15% of the people who gain access to specialist palliative care fall into that age group. Worrying inequalities already exist regarding the quality of end-of-life support available, depending on a person’s illness, age and, as ever, where they happen to live A growing concern is that the existing system, which is already unable to provide care for all who need it, is coming under ever greater pressure as our social care services fast approach breaking point. Marie Curie states that in its own services, it is seeing people waiting weeks in hospitals and hospices for social care packages to be put in place so that they can get home or into a care home to spend their final days in the place of their choosing. Very sadly, that situation means that it is not uncommon for people to die while waiting. This does, of course, have a terrible human impact, not only on the person dying, but on their families, making what is already a hugely traumatic situation immeasurably worse. This state of affairs is also totally cost-inefficient for our NHS, which could be using those hospital beds for people who need acute care The situation I have outlined will come as no surprise to any hon. Member, given that adult social care budgets have been cut by some £4.6 billion, or 31% in real terms, since 2011. They continue to fall in the face of an increasingly elderly population and therefore increasing demand. I have no doubt that the Minister will want to champion the social care council tax precept that the Government have allowed local authorities to raise for this purpose, but I gently remind him that that is anticipated to raise £1.4 million a year in Newcastle, yet the city council faces a social care shortfall of some £15 million.