Caring For The Future: ’20 Beds’
Nowadays, the chances of you knowing someone who has had direct experience of the hospice movement has never been higher. In the UK, at least 120,000 people with terminal and life-limiting conditions are helped by hospices each year. This number increases to around 360,000 people when family members are included. It’s a truism that hospices play an important role not just in making people’s final months or weeks more comfortable but they also play an important role in supporting their patients’ families, especially with bereavement support.
So, that’s me: Master of the patently bloody obvious. What isn’t so obvious is that we all have to get used to and support hospices; not out of any Saturday morning sense of altruism and not because suddenly we turn out to be one of the unfortunate 120,000 or 360,000 mentioned above. We need to be involved because of the demographics. Britain’s older population is set to sharply increase in the next few decades. The number of people aged 85 and over is expected to double in the next 20 years. The number of people aged 100 or over is expected to increase more than eight-fold by 2035 – to more than 100,000. These dry statistics mean ‘us’. You, me and the cat-woman next door.
The demographics effect everyone. The number of young adults living with life-threatening or limiting conditions is also on the increase and there is evidence of growing numbers of young people with highly complex needs moving from children’s services into adult care.
At present, hospices care for people with a wide range of conditions; Cancer, motor neurone disease, cardio-vascular diseases, multiple sclerosis and Parkinson’s disease and many more. Hospices also support people with multiple life-limiting conditions including dementia.
Hospices are not ‘one size fits all’ operations. The majority operate out of hospice inpatient units or people’s own homes. The hospice view is about people’s quality of life in their final days. As a result, hospices are as diverse in their settings as they are in their organization.
On average, adult hospices receive a third of their funding from the government, with the rest coming from fund-raising. However, the level of statutory funding varies widely across the country.
Charitable hospices collectively need to raise £1.9 million per day – amounting to more than £9,000 per hospice each day.
Back to the demographics. Over 125,000 people give their time to volunteer in hospices each year.
The half a million or so people involved in caring, supporting or fund-raising also act as the best ambassadors for the hospice movement and, to a large degree, are the main reason (according to surveys) why more than two-thirds of people regard hospices as places that offer compassionate care and places that offer the highest quality care by bereaved people.
All good news so far. But nearly three quarters surveyed hold the view that demand for hospice care will rocket in coming decades because of a rapidly ageing population. Almost half the people recently surveyed say that they are concerned there won’t be enough hospice care available in future. What is to be done?
It’s true that some people would prefer state-funding. Others want the private sector to get involved. The true path probably lies somewhere in between; the state provides something and, across the country, hundreds or even thousands of original fund-raising ideas are also dreamt up by the management or supporters of hospices.
I was sent a review copy of one of these individual, fund-raising projects by the book people at Hey Everyone. ’20 Beds’ by Andy Richardson is a charity book aimed at raising funds for St Michael’s Hospice, in Hereford.
It’s not just about the money, though, says co-publisher, Rachel Haworth:
‘If more hospices are to become a reality over the next twenty years, we have to start addressing the way that people think about the end-of-life experience and start showing them that supporting the hospice movement is both in their own interests and in the interests of others.’
It’s true that no one ever wowed a dinner party by banging on about death but ’20 Beds’ is not like that at all. There’s a history of the hospice movement in general and St Michael’s in particular but it’s the interviews with the patients, as young as twenty and as old as ninety-five, which shine out as both positive and interesting.
‘We’ll never know for certain, of course’ says author Andy Richardson, ‘…but perhaps it was this positive message which attracted the backing of Princess Alexandra. The launch of the book also coincides with the official opening of the new unit at St Michael’s.’
‘Having sorted out a modus operandi with the management, it was a privilege to interview the patients at St Michael’s. I was impressed at the up-beat and positive nature of the stories I was hearing. Often I was hearing stuff that these people had never spoken of before.’
The hospices would be nothing if it weren’t for the staff, says Richardson:
‘We were all impressed by the time and effort which both staff and patients put in to the ways in which they can make the most of the limited time they have while at St Michael’s. Again, this concentrated exclusively on wanting to help the hospice and improve the experience for patients and families in the future. The staff at St Michael’s were great and gave us access to patients getting their permission to be photographed and interviewed. I think the patients found the process very enjoyable as well. It was therapeutic and cathartic for them to be able to talk about what they’d been through.’
Having said all this, one cannot hide from the fact that death and departure are quintessentially sad matters. Co-publisher, Rachel Haworth, whose own mother was at St Michael’s in her final weeks says:
’20 Beds is a book of life and hope. It was created during a six-month period at St Michael’s. We interviewed patients and ghost-wrote their stories, giving them the chance to speak about their lives, their hopes and their fears. The book is a real tear-jerker but the thing that emerges most of all is the sense of hope. It’s a happy book. It’s a celebratory book. It’s one that kills the myth that hospices are all doom and gloom. They are not. ’20 Beds’ changes the narrative and celebrates the magnificent work of St Michael’s.’
Innovative fund-raising projects like ’20 Beds’ are likely to become the norm rather than the exception. The publishing team who put together this book see a time when they might be repeating the experience for other members of the hospice movement. If you are a betting person like me, you should put money on this and other projects taking up the strain of funding rather than massively increased funds from central government. In addition, I bet that many more people who, hitherto, have only a passing knowledge of what hospices are and what they do will also be involved in establishing and supporting more hospices in the future.
The title will be available at outlets throughout the greater Herefordshire area and online at www.heyeveryone.com as well as from St Michael’s hospice itself. £4 from each book goes directly to patient care.
Everyone needs hope and this book … I love the detail that went into everything. So much thought was put into finding a location, choosing a name, raising funds and everything they wanted to accomplish. This book really is a blueprint for anyone who would like to dream of offering this kind of hope. So many details are discussed and why certain things were so important in the process. Stories of the individuals who benefited from St Michaels’ Hospice are very emotional and personal stories. Stories of hope when they could have been stories of despair. Stories of a future when they could have felt like there was none. This is a really nice story of true lives and how everything and everyone has meaning with no one more meaningful than another.
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