Lord Howard welcomed delegates to a conference “designed to help” hospices overcome the challenges they face and ensure the sector’s future is as “glorious” as its past and present.
Howard also introduced Hospice UK’s new chief executive, Tracey Bleakley, who will join the charity in January.
After providing an overview of her career to date, and her drive to work in the charity sector, Bleakley explained that she wanted to attend Hospice UK’s conference so that she could begin to get to know those involved in hospice care and the work they do. Bleakley, who is from Bolton and lives in Bedfordshire, also said that she was keen to get “out and about”, visiting member hospices in her new role.
Death, dying and the Daily Mail
The first plenary of the day was given by Dr Margaret McCartney, a Glasgow GP and well-known author and journalist.
McCartney explored public perceptions of the end of life – specifically those choices patients may have to make about their care – and how these are often influenced by the media.
She provided a number of examples – such as how medical dramas on TV lead people to believe that CPR is more successful than it is in real life, or how fundraising posters for cancer charities, with their use of battle analogies, often mean that people feel they must keep fighting to get better, to live as long as possible.
And then there are the Daily Mail’s sensational stories which make the public suspicious of doctors’ and nurses’ intentions, such as the recent stories around advance care planning or people “dying of thirst”.
There is an obvious need to challenge the messages put out by the media, but to also address people’s real fears around death and dying, as well as palliative care – the very of mention of which can still scare people.
McCartney also highlighted something the Daily Mail should be up in arms over – the current inequity in access to palliative care that still exists.
Highlighting the increasing number of older people living with frailty, and how we will all be living longer with multimorbidity, McCartney called for a focus on ensuring that palliative care is “good enough” for everyone, rather than on providing excellent care for the few.
She also talked about the importance of “hands-on” care and taking time to talk to patients – often a luxury for a GP (and other professionals) –
to help dispel myths and find out what is important to them. Equally important was talking honestly about treatment options – whether chemotherapy or CPR – and being clear about the likely outcomes of these, as well as helping them not to feel guilty about their choices.
McCartney called for more “humancare” – more social care, and support for informal carers who are often under so much strain looking after relatives at home that it impacts on their own health.
She also commented that she did not want to see home deaths go the same way of home births – where people feel guilty if they are not able to make it happen.
Creativity and leaving your comfort zone
Just before lunch, Hospice UK’s national director of care Dr Ros Taylor took a moment to highlight the diversity of processionals attending the conference and encouraged people to go to a session outside of their “comfort zone” as it is the best way of finding inspiration and new ideas.
Taylor also introduced Bob Heath, who has been responsible for curating the creative strand of the conference. Inspired by this, I took the opportunity at lunchtime to visit the sunny balcony here at the ACC, overlooking the dock, to make a small contribution to the mosaic being created there.
The creative strand continued after lunch, as poems or songs written by patients about their experiences were shown before various sessions got underway.
A radical approach to community nursing
The theme from the first plenary of the importance of taking time to be with and talk to patients was also in focus during the second plenary of the day.
Jos de Blok, founder and chief executive of Buurtzorg, and Nynke Hoogland, one of the nurses who works for the “neighbourhood nursing” company, explained how the new way of working and providing care has been taking the Netherlands (and the rest of the world) by storm.
The company has grown since being founded in 2005 to now employ 9,700 nurses, working in 850 independent teams, each in neighbourhoods of around 5,000–10,000 people.
These nurses are supported by 45 ‘back-office’ staff who take care of the necessary bureaucracy, so that the nurses can focus on providing care.
The audience seemed fascinated (and confused) by the fact that a company of such a size works – and works so well – without any managers.
They described the innovative way in which the company operates, with small teams of self-managing nurses providing care at home for those with palliative care and other needs.
The care the nurses provide is not dictated by a list of tasks or requirements specified by an outside assessor. The nurses themselves carry out assessments of what their patients need and want and then do whatever they need to do to make this happen.
The nursing teams work with other local networks, formal and informal, to help ensure the patients’ needs are met. This includes working with other healthcare professionals, such as GPs, occupational therapists, physical therapists, as well as volunteers.
There is a focus on empowering staff and patients and supporting patients to be independent and in control. Nurses are also trained to focus on solutions, rather than analysing problems.
The nurses employed by the company are highly educated – and teams have an education budget to spend as they need – and they are trusted to know best how to care for and support their patients.
This way of working leads to happier, more satisfied staff, as well as more satisfied patients.
Not only does the company save money by reducing overheads, but by focusing on what is needed (and not ‘over caring’) as well as prevention, which helps lead to shorter periods of care.
As a not-for-profit organisation, the company puts any profits it makes into innovations – which are, obviously, also nurse-led. Two examples of projects de Blok mentioned included a radio programme and an annual walker race – highlighting how the nurses focus on what patients can do, not what they can no longer do.
de Blok was a nurse himself before starting up the company, and his son is now also following in his footsteps. He explained how he wants nursing to be an attractive career so that young people want to take on the role.
The day ended with a celebration of some of the innovative work and inspiring people from UK hospices with the presentation of the Hospice UK Awards.
Presentations from the first day of the conference can be downloaded from the Hospice UK website and you can also follow the action using the hash tag #HUKconf15.