Hospice UK's CEO, Toby Porter, gave this speech at the opening session of the 2022 National Conference.
On behalf of the whole team at Hospice UK, I would like to give you the warmest of welcomes to this year’s National Conference, FINDING A WAY FORWARD.
Thank you for taking time from your busy schedules to be with us for the next three days, it’s wonderful for us and of course for all of you to have such a large gathering of our hospice community. I also like to extend my gratitude and welcome to our sponsors as well.
We’re delighted to bring our annual conference here to Glasgow for the first time, and to have guests and speakers from some of those involved in designing and delivering the new Scottish Government strategy on palliative and end of life care. For those of you getting to grips with the Integrated Care Systems in England, there is a chance to learn from the experience here in Scotland, where integration of health and social care authorities and services has been in place since 2016. Scotland is also currently the focus for one the most controversial issues for our sector and society at large, with a proposed Assisted Dying for Terminally Ill Adults Bill lodged at the Scottish Parliament in September, and due to be voted on next year. You can listen or contribute to discussions on this topic at on our Ethical Conundrums sessions tomorrow morning.
"We welcome delegates from Scotland, England, Wales, and Northern Ireland to this conference. There is much to learn and to share between colleagues from the different nations."
It’s a proud and happy moment for me personally, welcoming you to this conference as Hospice UK’s new CEO. I started my new role two weeks after Liz Truss started hers (so it feels like it’s going really well) I have loved my first few months, getting to know the Hospice UK team and meeting a good few Hospice Chief Execs already. You have all made me feel very welcome, thank you.
The work we do as a hospice sector could not be closer to my heart. As many of you know I was the CEO at Acorns Children’s Hospice for 6 years – during which we faced and overcame some very serious challenges – financial, service and job cuts, almost closing one of our three hospices in our most deprived geography. Then the Covid pandemic and more recently, higher than normal clinical vacancies. So I come into my role with no illusions and first-hand knowledge of the daily challenges you face. Yet, for all of the challenges, working in a hospice still feels like the best job in the world, due the people you meet – your clients and their families, the incredible people who work and volunteer with you, and those whose compassion and generosity literally keep the lights on at your hospices.
"You all do incredible work. Our hope is that Hospice UK can give you something back in these next few days and you return to your workplace energised and inspired from being here."
Ten years ago last month, the Commission into the Future of Hospice Care published their final report. In her foreword, Dame Clare Tickell issued our sector a challenge – “Hospices will need to keep an unrelenting focus on the needs of all those who live with life-shortening illness, their families and their carers and be brave in their response to these needs”.
Well, this is the first conference where we would all presumably agree that the worst of the COVID-19 pandemic for society as a whole is long behind us. So please allow me to congratulate but also to thank you and your teams for your bravery and for that unrelenting focus during those awful times. Despite serious risks to themselves and their loved ones, your teams found ways to support your patients and your communities. As a sector, hospices supported the NHS and the nation. The continued donations to local hospice charities to support the most vulnerable became a powerful expression of the compassion and unity at the heart of our communities and an antidote to fear, polarisation and division.
"While none of us would ever want to experience this again, we have arguably come out of this a stronger and even more respected sector, with a publicly acknowledged mandate to educate and lead the wider health and social care sector on palliative care."
You are experts at good end of life care. Your approach epitomises what every person in the UK should have at the end of their life - true patient choice, support for families and loved ones, excellent clinical and nursing care alongside compassionate bereavement support.
We all believe in the fundamental right to a good death. But it is still the case that 1 in 4 people in the UK are unable to access adequate end-of-life care. The recent passing of the amendment to the Health and Social Care Act promises a country where good end of life care is available for all. Our community played a key role in coming together to advocate for and secure this legislation. Now we need to hold the duty bearers to account for turning this right into a reality.
Our vision at Hospice UK is hospice care for every person in need, so there is so much more we all must do. We must find a way forward, and ensure that hospice care can reach everyone in our country no matter where that is delivered, or by whom. We must all unite behind the goal of changing end of life care for everyone for the better. People need and deserve better in this country.
"Expanding hospice care is no easy task at the best of times, and these are far from that. Instead of the calm and restorative post-pandemic recovery period that we had so wanted for our teams and our organisations, and which they so deserved, hospices and others involved in the planning and delivery of end of life care face a new set of present and very serious challenges."
Firstly, our guiding star and whole ethos of hospice care is a total focus on the patient. But what does that mean at a time when the current state of our wider UK health and social care system is such a huge concern. To quote again from the 2013 Commission report – “as the environment of care threatens to fail too many and too often, hospices will need to unite in their thinking and develop a strong voice individually and collectively”.
I know everyone here will be alarmed as professionals but also as individuals by the evidence of demand so obviously exceeding capacity wherever you choose to look, across our health and care system - in our community services, our hospitals, our care homes and even in our ambulances. What do phrases we value and use such as patient-centred care or the need for an all system approach mean at times like these? What should and what can we try and do as an independent hospice sector respond to try and help?
And, of course, we are not immune from these challenges ourselves.
"The cost of living crisis is affecting everyone in and associated with the hospice sector – the children and adults that use our service, and their loved ones; our staff and volunteers; rising costs and falling donations bring obvious jeopardy to our charity business models."
At Hospice UK, we have listened to our member hospices when you said you wanted us to speak early and forcefully about the potential impact for hospices of the cost of living increases. Working with some of you, we have got some compelling and hard-hitting stories out into the mainstream media over the last few months, including major news items on Channel 5, BBC Breakfast and national newspapers.
We are also working directly with senior civil servants and politicians on how hospices might be supported with their energy costs after the end of the period covered by the current price cap. We will continue to do what we can for you in this space, making sure that people understand what good end of life care should be, what might be at risk, and why proper and predictable statutory funding is so important to the stability of the sector, and of our services.
Workforce is and probably will remain perhaps the most challenging issue of all for the hospice sector over the next few years – you can join sessions focussing on this at this Conference.
We believe strongly that every hospice team has something to contribute through your experiences and ideas about how we continue to attract and retain the people we need to deliver our services, now and in the future. We know our people are concerned about pay, as they struggle themselves with the cost of living crisis. But pay and conditions are just one of the priorities those working and volunteering with hospices are raising – others include a focus on values and behaviours, positive organisational culture, inspirational and responsive leadership, as well as stronger development of clinical career pathways and education networks with a focus on supply, recruitment and retention.
"Our collective call for action, each and every one of us, is to be passionate and enthusiastic public advocates for a career in palliative care in our local communities and nationally, while doing all we can to make our own organisations the best possible place to work."
At this conference, you will get the opportunity to share experiences of working with the new Integrated Care Boards with your fellow professionals and to answer the key questions. What impact is your input and engagement having? Are you able to truly contribute your expertise and technical knowledge to making the whole system work better? As individual hospices, are you forging or seeing the potential for new partnerships and collaborative working? Are you seeing opportunities for new sources of funding? Most importantly, are you optimistic that you are contributing to a process that will genuinely result in better end of life and palliative care services in your region the future?
I hope this conference will encourage you to think about how we can work together. Hospices across the UK are now an integral part of their health and social care system. The door is open for you and your teams to bring your expertise and influence to bear to provide good end of life care for members of your local community who until now you have not been able to reach directly.
A final quote from the Commission’s report 10 years ago – “It is through our place in this wider system that we will find ways to deliver services to populations rather than reaching only those individuals who find their way to us…..our commitment to the idea that everyone gets the care they deserve when illness can no longer be cured, has a significant implication. Every hospice that welcomes this aspiration must also accept the consequent obligation to consider how best to use their resources as part of the system of care that will need to be deployed. To obtain change on the scale required means working in partnerships with each other and with local providers of health and social care”.
So we gather here this week in Glasgow with the worst of the Covid pandemic almost certainly behind us, but the worst of the cost of living and health and social care crisis ahead of us. Of course it feels challenging, but we will find a way forward. Hospice care is a sector, but it is also a calling. Cicely Saunders said that “we can relieve suffering if we put our minds to it”.
Our duty now as a hospice sector is to put our minds towards finding a way forward for hospice and end of life care in the world as we find it, in 2022.
Thank you and enjoy the conference."
Photos: Alan McAteer