A mobile hospice is taking end-of-life care into the community in Essex, writes Vern Pitt
Necessity is often deemed the mother of invention and so it was with the establishment of the UK’s first mobile hospice.
In March 2007, the local primary care trust in Braintree, Essex, from which Farleigh Hospice rented one of its premises, wanted the property back, leaving Farleigh one year to find a new site.
“We were homeless, basically,” says Farleigh’s community services manager, Sharon Nuttall.
However, Farleigh didn’t see it as a problem but as a challenge. The solution was to make the hospice mobile, by operating services from the back of a bus, and the Hospice Outreach Project (Hop) was born last year.
Improve access to care
Its principles were in line with the government’s End of Life Care Strategy. Published in July 2008, it emphasises the need to improve access to care for people with life-limiting conditions and improve the profile of end-of-life care in local communities.
“Because our geographical patch is so huge you can’t do it all from one place,” says Maria Curtis-Gilkes, who works on the Hop as a palliative care nurse. “It can take an hour and a half to go from one side of our patch to the other in a vehicle.”
After just over a year of operation the Hospice Outreach Project has seen more than 630 people, despite operating for just a few hours three days a week. It has done this by focusing on highly visible pitches such as outside supermarkets, and in GP surgeries and community centres.
It provides information, counselling, support and a point of access to other hospice services on a drop-in basis for people with life-limiting conditions, such as cancer, heart problems or lung disease, and their carers.
“What we have found is that across-the-board information about care is patchy,” says Curtis-Gilkes. “The information they might get is out of date or it might be from the internet. It’s important that people can have a reliable source of information.”
It has also emerged that the Hop is servicing another need.
“When we started looking at bereavement in our locality we found there was little support,” says Nuttall. “So obviously people saw the vehicle, heard there were people to talk to and felt it was a good opportunity to gain that support from us.”
To meet this need, from this month Farleigh is trialling open bereavement support groups at community venues when the Hop is outside.
“Some people feel they are the only ones going through these things. It helps them to share time with other people and a support worker and talk through it,” says Nuttall.
Another unexpected benefit of the mobile service is the education of GPs on bereavement, medication and other specialist knowledge on terminal conditions.
Nuttall is sympathetic to the problems GPs face in accessing this information.
“Quite often GPs are busy in surgery and might get half an hour at lunch,” she says. “It can be difficult to get them out of their practices for training but if we take the training to them it’s much more accessible.”
Farleigh has appointed a head of education who will look to expand this role in the Hop’s second year.
The greater visibility of Farleigh Hospice as a result of the Hop has seen GP referrals rise by 15% in the first year.
Jonathan Ellis, director of policy and parliamentary affairs at Help the Hospices, emphasises the importance of services such as the Hop in challenging perceptions of hospice care.
“There’s a perception that hospice care happens in the building in the bed, but this is actually taking services and showing people that this is out there in the community,” he says.
Increasing visibility is also important, given hospices’ dependence on charitable donations, he adds.
This is at a time when hospices’ two main sources of income – donations and PCTs – are coming under pressure as a result of the recession and its impact on public finances.
They have also felt pressure from medical advances which, Curtis-Gilkes says, has required them to expand the remit of the services provided. “There has always been the perception that you come here and you die but, because of the advances in palliative care treatment, people are living longer, so their illnesses become chronic,” she says.
Just as hospices must adapt to the changing conditions of patients, so must Curtis-Gilkes. But whatever the role she is playing there is always one common thread.
“I would say for the majority of people I see there is an element of emotional support, whether it is just an arm around the shoulder or just hearing what they have to say,” she says. And those kind of moments don’t always wait until someone can make it to a service based in a building.
This article is published in the 19 November 2009 edition of Community Care under the headline “Hop on the bus”