Innovative service is helping more people stay at home at the end of their lives

Categories: Care.

Between March 2013 and February 2014, 69% of patients on the Bedfordshire Partnership for Excellence in Palliative Care (PEPs) register who died, died at home.

According to national statistics from 2012, just 42.4% of all deaths occur at a person’s home address.

Led by Sue Ryder and NHS Bedfordshire Clinical Commissioning Group, PEPS – which has been featured as a best practice case study in the National End of Life Care programme – works in partnership with 15 organisations, including local providers, district nurses and the ambulance service.

The partnership, which provides coordinated 24-hour palliative care support for patients, carers and health and social care professionals across Bedfordshire, has also helped to reduce hospital admissions for people on the PEPs register, after data from the register was added to ambulance service systems.

In the first seven weeks of 2014, paramedics from the East of England Ambulance Service Trust (EEAST) were called to the homes of 27 patients on the register. As a result of having access to the PEPs data, paramedics contacted the PEPs service when arriving at the address and consequently 21 patients (78%) remained at home, avoiding A&E attendance and probably admission.

Judith Jackson, Sue Ryder’s PEPS manager, said: “We’re really pleased with how the service is developing, with key areas such as supporting more people to die at home and reducing avoidable hospital admissions showing such positive results. 

“We’re also particularly pleased to see an increase in people accessing the service with non-cancer conditions, as we know there are vast inequalities in accessing end of life care depending on your diagnosis.”

First point of contact

Launched in December 2011, Bedfordshire PEPS is a first point of contact for patients, families, carers and health and social care professionals requiring 24-hour advice, care and support for palliative care.

As well as a 24-hour coordination centre based at Sue Ryder – St John’s Hospice in Moggerhanger, which is staffed by nurses with palliative care experience to respond to the caller’s needs, the service offers face-to-face assessments, access to hospice beds, rapid discharge from hospital and access to respite and carer breaks.

Deborah Cakmak, system re-design manager for urgent and integrated care at NHS Bedfordshire, said: “Partnership working has made a difference, reducing unwanted and unnecessary trips to A&E and helping people who want the end of their lives to be at home.”

More than 2,000 patients have been registered on PEPs over the last two years, with 119 referrals received in January 2014, the highest in any month so far. In the last 12 months, where diagnosis was identified, 76% of patients had a cancer diagnosis and 22% had a non-cancer diagnosis, compared to 91% and 9% respectively in the first 12 months of the service.

A lasting positive memory

PEPS patient Adam died peacefully eight months after being diagnosed with cancer of the oesophagus aged 66. His wife Jenny says the care her husband and their family received left a lasting positive memory from the most difficult time in her life:

“When I didn’t know what to do when faced with Adam’s devastating symptoms, I called PEPS, day or night. As soon as they heard my name, they would know who I was, Adam’s illness, his medication, symptoms, prognosis – all the important things, without me having to go through the details each time I called.

“PEPS offer definite, tangible support that gives you peace of mind. They know everything they need to know to be able to help you. And they can give you the practical advice that you really need to know at this impossibly devastating time. They not only answered my desperate questions, they made sure the other people involved in Adam’s care were kept informed, from the Macmillan nurse to the GP.”

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