The Terminally Ill Adults (End of Life) Bill will have its crunch vote and second reading in the House of Commons on Friday, 11 September. A diverse range of people, not just Catholics, have raised their voices in opposition to this Private Members’ Bill that seeks to legalise assisted suicide. Our new Prime Minister, Andy Burnham, has said that now is not the time for this debate and it would be better to sort out the UK’s palliative care and social care crisis. So what are the problems and what needs to be fixed?
Dr Karen Groves MBE qualified as a doctor at a time when the modern hospice and palliative care movement was only just beginning.
“Pain and other symptoms were really poorly managed, not due to lack of compassion or care, but just through a lack of knowledge,” said Dr Groves. “There was a lot of fear among the public and health professionals about the use of morphine, and also of speaking to people about their illness and what to expect in the future. It just wasn’t done in those days.”
To address this and to meet end-of-life care needs in West Lancashire, Formby, and Southport, Dr Groves founded Queenscourt Hospice in Southport in the late 1980s.
“We’ve moved on a lot in nearly 50 years, and now for this area, we’ve got integrated hospice and specialist palliative care services working out of Queenscourt, which is our local hospice, the specialist clinical and educational hub, seeing patients and families in Queenscourt itself, or an equal number in our local hospitals, and twice as many again in our local care homes and their own homes, which is where the vast majority of people really want to be living their lives, and living them to the full, to the end.”
Dr Groves advocates for a ‘continuity of care’ so that integrated services are provided consistently and appropriately for each person across a number of care settings.
“It’s a huge challenge, but it’s taken many years of work to build relationships with all other local services, and those are really important so that everything’s knitted together, and that provides the continuity of care.
“It’s made a big difference to the number of people who are able to stay in their own homes. Some people accuse hospices of providing a gold standard service to the very few, and I would counter that to say that where hospices have the opportunity to develop integrated services across all settings, then actually they can provide a responsive, helpful, reliable, and consistent service in which patients and families have confidence, and they’re much less likely to dial 999 because of fear or not knowing what to do in a situation. It makes a big difference.”
How does a hospice achieve gold standard palliative care and end-of-life care? What are the key ingredients?
“I think there are many,” says Dr Groves. “But a few of the main ones, are: investment in selection, ongoing training, and real support of skilled clinical and non-clinical staff. Plus time and attention to detail for every patient and family – that’s really important. A huge number of committed volunteers without whom the service can’t provide the standard of care that it does. Then the financial support and goodwill of the community of this area – West Lancs, Southport and Formby – who’ve supported the building, the growth, and the development of their services. These services belong to them. There needs to be good working relationships and communication with other services – hospitals, community, care homes – to ensure that no patient is left between services. Finally, on top of all of that, an education service which is there for all professionals, formal and informal carers, and the public, which helps to ensure a good standard of palliative and end-of-life care to be consistent across all settings. There are loads more, but those are the main ones.”
So what are the challenges?
“Finance for all hospices varies, but it has similarities. For Queenscourt, 24% of our funding comes from government sources, mainly via the NHS, but 76% of our £7 million annual running costs has to be raised from local people by a small fundraising team every year through donations, grants, legacies, events, coffee mornings, all the other sorts of things.
“After 40 years of fundraising, this is getting more and more difficult as government funding has not risen with inflation. Increased employer National Insurance contributions and energy and supplies costs have been crippling. Annual average legacy income has reduced from £1.25 million a year to £250,000. Reduced high street footfall has affected retail income from hospice shops, and other very worthy charitable fundraising in the town has had a huge impact. The government has made many tranches of money available over the years, indeed some recently, but this is always restricted to capital costs. They’re one-off tranches – refurbishment, rebuilding, and those sorts of things. It’s not allowed to be used for running costs, which is really what is most needed.”
How do we go about ‘fixing’ palliative and social care as the Prime Minister puts it?
“I mean, Andy Burnham’s wish to fix palliative social care is music to my ears and the ears of all those who are struggling to get the care that they need, where they need it, and when they need it,” says Dr Groves. “Some joined-up thinking, good organisation of services, continuity of care, excellent communication and a flow of sufficient finance to support it would allow those who actually have lots of good ideas [to improve things] to begin to work on it, and those who need the services then to benefit hugely. There’s loads that needs to be done.”
You can listen to the full Catholic News podcast featuring Dr Karen Groves using the player below or by visiting our Catholic News podcast channel.
