Tracey Bleakly is a member of the Lancet Commission on the Value of Death and chief executive of Hospice UK. In the blog below she shows what good work hospices are doing but argues that they need revolution not simply evolution to meet the growing demand for end of life care.
And her is a video of Tracey giving a keynote address at the annual conference of hospices.
In the year that Cicely Saunders would have turned 100, the 51st year of the modern hospice movement, and a year where so many hospices celebrated significant birthdays, it feels appropriate to stop for a second and look at where we are and what we have achieved. In the last year, hospices have helped an incredible 208,000 people, supported 49,000 families with bereavement support and cared for 83% of their patients in the community – in their own homes or care homes, where they wish to be.
Our HOLISTIC study which will launch in the spring has found so many examples of hospice and hospital partnerships, improving care and support, joining up services, and helping people achieve the end of life care that they want for themselves and their families. We are continuing to support more people with non-cancer conditions including heart failure, COPD and neurological conditions, and huge efforts have been made to understand how we can develop services for the homeless, people in prisons and travellers.
Everyone involved in hospice and palliative care has one thing in common – they never stop learning and adapting their knowledge to help people. To the 40,000 hospice staff, the 125,000 hospice volunteers, and everyone involved in palliative care, from GP’s to OT’s, hospital staff, district and community nurses, carers, families and friends – you are all incredible and a huge credit to society.
With every institution (and after 50 years the hospice movement is an institution), there are three options for the future. Preservation, evolution and revolution. The first – preservation feels safe, feels responsible. Our communities rely on our hospices, on the buildings, the teams and the services they provide. It’s so important to make sure they are there for future generations. So we try to keep everything the same, not take too many risks, live within our means, cut our cloth a bit more each year and keep the hospice, the amazing community asset safe. But doing what we have always done isn’t the no-change option.
Change is happening around us. Death and dying is dramatically different today than even ten years ago. People are dying over much longer periods, they have multiple conditions with different symptoms, their needs are changing, the numbers are rising. Death is on the increase thanks to population growth (up by 32,000 people a year since 2014), and the need for palliative care is set to increase by 25% by 2040.
.Hospices are no longer individual charities helping a small number of people in the community die well. They are part of integrated healthcare systems, responsible for population based care, and that means everyone who needs palliative care in our communities, whether we help them directly or though partnerships and education. The brutal truth is that preservation means atrophy, irrelevance and decline. This is no longer an option.
This leaves us with evolution and revolution. Evolution is where I would argue most hospices are at today. Most hospices are unrecognisable from even five years ago. Sure – the buildings are still there, but step inside and meet the teams, the services, look at day-care and wellbeing, hospice at home, the patients in the inpatient units – there has been dramatic change. This has allowed us to care for many more conditions, to help people in their own homes and care homes, to get to people earlier to promote independence and quality of life. The innovation and energy I see when I visit hospices up and down the country is incredible and unrelenting.
And yet the dial isn’t moving. We started collecting overall statistics for the hospice movement three years ago. We helped 206,000 people in 2016, 212,000 people in 2017 and 208,000 people in 2018. Our funding is rising slowly, now at more than £1.43Bn. And yet, the number of people we are not reaching who need our help is increasing (to 118,000 people last year), and that doesn’t include the 150,000 people who die of frailty in our hospitals every year. So what’s going on?
In short, hospices are running to stand still because costs are rising far more quickly than income and there is continual pressure on all sources of funding. Whilst hospice turnover increased again this year by £38M to £1.43Bn, this is the seventh year that two-thirds of hospices told us their NHS funding had been cut or frozen. NHS funding is being targeted in new areas such as rapid response, 24×7 services and joint posts at 30% of cost, with hospices struggling to find the balance and fund services that were previously covered by NHS contracts.
In 2017, 45% of hospices running deficit budgets and this is estimated to have risen to 65% in the current financial year. Legacies were down by 9% last year and whilst hospice trading profit remained stable at an average of 24%, we know that conditions on the high street are tough.
Overall hospice costs have increased by 4.4% this year with staff costs rising by 5%. When we consider that our 40,000 hospice staff represent 68% of hospice turnover and that this was before the NHS pay-rises agreed for the next three years (which the government will not match for hospices), it is clear that it isn’t likely to get easier.
In this context, the ingenuity of hospice staff and volunteers in continuing to provide high quality services to so many people is incredible and should be celebrated. It will take continuing evolution for the hospice movement to thrive, and events like the Hospice UK conference are crucial in sharing ideas and new practice.
But we can’t help the rising numbers of people who need us through evolution alone, and this is where revolution comes in. During the 2018 Hospice UK roadshows we used anonymised data from our PopNat tool to set Hospice leaders a challenge. If a standard UK city had no palliative or hospice care to-date, what would we design today and how would we deliver it? Interestingly no-one designed a hospice as we would recognise it today. Everyone was planning community services and partnerships, hubs in highly populated areas of need, use of existing buildings, such as community centres, and where specialist services were needed, beds were shared with existing hospitals and care homes.
It proved the point that knowing what we need for people today (and to an extent in the future) isn’t the hard bit. We can predict how our over 65 and 85 year old populations will rise over five years, and the prognoses for children with life limiting conditions. We know the trends on conditions that people are dying from, we know how many people are living alone, where they are living, how communities are changing. We know there is likely to be continual pressure on funding, we have the NHS ten-year plan, open funding commitments and a 2012 health and social care act that is unlikely to be changed in the coming years.
It isn’t the blue-print that’s hard to define, its how we get there. The reason that change in the hospice sector has been largely evolutionary is that we know we have a contract with the public who give us an incredible £1Bn a year for our existing services for the people they love and for the hospice buildings they paid for, and we still have so much need for the help we currently provide.
How then can we change without taking huge risks, shutting units, closing services, re-routing money. It’s hard to justify and even harder to do. So whilst radical change across the sector is one way of meeting need, it’s not going to happen. We need to accept and promote the legitimacy of marginal change so we don’t destabilise the sector we have all worked so hard to develop. Radical change being ‘decoupled’, being connected but on the outside will be far more comfortable for those who want to engage to do so.
So that’s what we’re going to do – we’re going to de-couple revolution. It needs to happen in parallel with evolution. We need to empower and support some hospice and palliative care leaders to explore new territories, look at joint ventures, new partnerships, radical new ways of funding and delivering services and at the same time, evolving what they already have. Many hospices won’t have the time to get involved. Their need for evolution is all consuming and will take all the time and energy they have. This is completely legitimate and necessary, and will still form the majority of Hospice UK’s work and support.
There will only be small numbers taking up the revolution challenge at first. Many of the new ventures will fail, it’s important that they do otherwise we won’t be taking enough risks and we won’t be able to learn. But the ones who succeed will bring back new ideas and ways of working that will help the rest of the hospice movement evolve at pace, unlock new sources of funding and grow.
Evolution and revolution will be our watch-words from this point forward and you’ll see these themes develop through 2019 and beyond. If you want to be more involved please get in touch, there will be plenty of opportunity. If you are already revolutionising in your own region, please do let us know – we’d love to know more. It’s going to be hard work, but it’s also an incredible opportunity to shape the future. The world is advancing, need and demand is growing. The way we live and the way we die will continue to change. I’m convinced that hospices will become ever more relevant and will help to shape the way society supports people in the last phase of life in the future.
I feel privileged to be involved and could not be more proud of every single person in the sector I represent