Opening proceedings at the well-attended, one-day event (held on 23 July), Harry Cayton, chief executive of the Professional Standards Authority said: “We’re really looking into the future. We’re looking at big questions, like is hospice care a state of mind rather than a service? Is it a building? Is it a way of caring for people?”
Lively discussion soon followed with the group of about 50 offering their thoughts and sometimes very personal experiences with the room.
Mr Cayton continued: “We’re not frightened of criticism; we want you to be as open and as free in your views as you want to be.”
Following two years of intense work by the Commission group, this exercise was the final chapter in the process which will conclude with a report that recommends practice for the future of hospice care.
Attendees, who were sat in groups at circular tables, were encouraged to pair up to discuss how they thought hospice care should look in 15 years time. The pairs then shared their thoughts with the rest of the group, which in turn brought about further debate.
Geoff Richardson was one of the participants. His wife Lizzie died at St Richards hospice 18 months ago and he has mixed views about hospice care. Speaking passionately he said: “The problem is that so many people will come out of a hospice experience full of, ‘You’re wonderful, you’re marvellous, all angelic.’ What I try very hard to do is drill down beyond that: what can we do to make it even better?”
Following his experience, Geoff has become an advocate for achieving excellent hospice care and now heads up a group at St Richards Hospice called ‘Listening into Action’ and also sits on the Hospice Management Committee. He explained how something simple such as replacing a squeaky door to allow carers a good night’s sleep can mean a great deal. “It doesn’t have to be complicated,” he emphasised.
Sitting across the room from Geoff was Sanjay Chadah. He was diagnosed with Multiple Sclerosis in 1995 and despite a significant deterioration in his health, Sanjay is an active member of both the National Council for Palliative Care and the Multiple Sclerosis Society UK.
His message to the commission was clear: “All of me. Please accept and consider all of me. Not just the part of me that’s going to die.”
This strong message was then transformed into a beautiful piece of art produced by Lucie Galand, resident artist for the day. Despite the lively atmosphere amongst the attendees, Lucie maintained a calm presence at the back of the room, creating a collage of coloured paper that displayed the words and thoughts of those taking part.
Some answered in practical, logistical terms; others emotionally. One paper read: “Overcoming fear. Talking about death.”
As conversations died down, the group was introduced to Tony Bonser, who was previously featured on ehospice. Now a passionate advocate for palliative care following the death of his son Neil, Tony and his wife Dorothy consider themselves experts in the palliative care field and want to encourage professionals to listen to service users and ask them what they need.
“Neil’s life was made so much better because one nurse asked Neil, ‘What do you want?’ And Neil said he wanted to go back to his flat. And so the nurse made that happen.” He remembered fondly.
Tony also wants hospices to be an integral part of communities. “We want hospices to be a dynamic part of the community. They don’t serve the community, they are part of the community.”
Following a lunch break to enjoy the sun (and storms) the attendees returned to a room transformed into a large circle. Participants produced a wealth of ideas, which then set the agenda for the afternoon’s session. All of the information and feedback gathered from the group will be used to form the final report, due out in October 2013.
Heather Richardson, clinical lead at Help the Hospices, outlined seven key messages which she believes will form the basis to the recommendations.
The key messages focus on:
- Hospice care is good and it does have a role in the future of end-of-life care.
- Hospices reaching more people.
- Better integrating hospices with other services.
- Improving palliative care in other contexts, such as hospitals and care homes.
- Building a rigorous evidence base in hospice care.
- Considering chronic illnesses as well as those who are at the end of their lives.
- Being proactive in engaging with service users and the public.
Heather continued: “We need to know what people want and need from hospices, and we don’t have a process of engaging at the moment.”
Despite the conclusion of the public-facing discussions this week, the debate will continue on social media sites.