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Dying matters: how a difficult topic brought a community together

December 2016

Heath Big Local are working with local hospices to enable people to live well in later life and to help them know how and when to seek support at end of life.

Most people have experienced the loss of a loved one, and when someone close to you is approaching the final months of their life, nothing matters more than their comfort, safety and the knowledge that they are being looked after with compassion and sensitivity. Yet, despite its profound importance to all of us, the topic of end-of life care is rarely talked about. Because of this, needs may go unnoticed and people may be unaware of help that is available.

Not so in Heath Big Local. Here – owing to a chance suggestion – the Big Local partnership discovered that there was a strong demand for local advice and support around end of life care. And despite the natural reluctance to bring death into a conversation, there is now a lively, cheerful and busy community of volunteers supporting local residents through difficult times and operating out of a newly renovated building with the help of more than 25 local organisations.

The Holly Road Supportive Care Centre is a bright example of what can be achieved when a community collaborates with local health agencies, and they all get behind an ambitious shared goal.

Holly Road serves as an information point for advice and signposting, as well as offering space for clinics, complementary therapies, bereavement care and clinical appointments
 

The power of face to face consultation

Heath is a neighbourhood of Uttoxeter, where the demographic includes, but is not dominated by, people in their later years. So it was a surprise to many on the Big Local partnership when one resident spoke up for palliative care to be included on the shortlist of projects that would go out to the community for consultation. It turned out that they had tapped a nerve.

“Everything else on the list, people knew what they were – things like improving green spaces. But with palliative care, everyone had to ask, ‘what’s that one?’” said Penny Krupski, who was among the Big Local team knocking on doors and inviting residents to discuss their priorities. “Because of that, they started talking about their own experiences, and conversations started that wouldn’t have happened otherwise.”

Penny’s reflection now is that the Big Local partnership could easily have missed this emotional and sometimes taboo topic if they had not conducted face-to-face and private conversations with people in their own homes.

Huge, unspoken need

Counting the consultation responses, Heath Big Local discovered that 90% of those surveyed picked the palliative care hub as their first choice for Big Local spend. With such strong support, the partnership had a clear mandate to pursue this as their priority for action.

The vision of a palliative care hub was born. It would provide services for people approaching the final months of their own lives, and for many people who had ageing relatives or friends, who were caring for people with terminal illnesses, or who were experienced grief. There was a strong recognition that people of all ages are affected by death and dying, and the right kind of support, located in the heart of Uttoxeter, could be transformative.

The hub is a welcoming space for the whole community
 

Finding a space and building new allies

Looking now at the warm and welcoming building that Heath Big Local has renovated, staffed and populated with a multitude of activities and groups of busy cheerful volunteers, it’s hard to remember that just a year ago it was an empty cottage unsuitable for habitation. Owned by a local charity, The Hermitage Charitable Trust, who deliver residential care, the costs of refurbishment had placed the cottage out of use. Engaging them, and establishing a friendly relationship with local St Giles and Katharine House Hospices were the keys to success.

“We knew that the community in Uttoxeter couldn’t easily access the end-of-life services in Derby and Stoke, and were potentially missing out on the care and support they needed,” said Sarah Riches of St Giles Hospice.

“As a local health provider we were also looking for a way to work with the community, but until Big Local called us up, we weren’t sure how we could make this happen.”

“That call was the start of a collaboration that really helps us deliver our local care and support for those affected by end of life by working with residents.”

A warm and welcoming mood

What happened next happened quickly, reports Zdzislaw Krupski, Chair of Heath Big Local. “We agreed that Big Local would put up the money to convert the cottage into a centre where everyone could come and feel welcome, with a really positive, vibrant atmosphere. We also decided to fund a staff post to run the centre for 2 years, but we needed help with finding the right support services. We knew that we didn’t want anything depressing or gloomy.”

 An architect was appointed and the building conversion happened quickly and with no major hitches. The Holly Road Supportive Care Centre opened in September 2015, and in the first 12 months of operation has welcomed around 850 visitors and connected to more than 25 organisations that provide services to Uttoxeter’s population of all ages.

Those services now include complementary therapies for patients and carers, counselling appointments to hospice patients, bereavement and dementia help points, social knitting groups that make twiddle muffs for dementia patients, befriending services for lonely or socially isolated older people and shared memory sessions connected to the Museum of Uttoxeter Life.

Twiddle muffs for people living with dementia, crafted by the local knitting group that meets in the hospice
 
People from Big Local areas across the country visiting the Holly Road hospice to share learning
 

Heath Big Local is justly proud of its achievement and it has cut a path that other Big Local partnerships may adapt or follow. With many health agencies responding to national policies that favour community collaboration, there could well be new opportunities at the end of the phone.

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