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Innovative service helps people stay home at end of their life

04 April 2014

More Bedfordshire patients with a life-limiting illness are able to die at home thanks to an innovative partnership between charity Sue Ryder, Bedfordshire Clinical Commissioning Group (CCG) and local health and care services.

The Bedfordshire Partnership for Excellence in Palliative Care Support (PEPS), provides co-ordinated 24-hour palliative care support for patients, carers and health and social care professionals and reduce hospital admissions for those on the PEPS register is added to ambulance service systems.

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.

She said: “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.”

In the first two months of this year, paramedics from the East of England Ambulance Service Trust (EEAST) were called to the homes of 27 patients on the register. They then contacted the PEPS service and consequently 21 patients (78%) remained at home, avoiding A&E attendance and admission.

Deborah Cakmak, system re-design manager for urgent and integrated care at Bedfordshire CCG, 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.”

Launched in December 2011, 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.

Judith Jackson, Sue Ryder’s PEPS manager, said: “We’re really pleased with how the service is developing and 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.”

As well as a 24-hour co-ordination call centre based at Sue Ryder’s 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.

Statistics show that 69% of patients on the Bedfordshire PEPS register who died between March 2013 and February 2014 died at home. This is a 26.6% increase compared to national statistics from 2012, which show that just 42.4% of all deaths occur at a person’s home address.

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.

People wanting to use Bedfordshire PEPS will need to be registered with a Bedfordshire GP. An initial referral to the scheme will be made by the patient’s GP or another health or social care professional. Once set up on the scheme, the patient and their family or carer will be advised how to access and use the PEPS Coordination Centre. For more information, visit www.sueryder.org/PEPS.

Notes to editors

Bedfordshire PEPS comprises the following organisations:

Sue Ryder-St John’s Hospice, Bedfordshire CCG, South Essex Partnership University NHS Foundation Trust, Keech Hospice Care, Willen Hospice, Garden House Hospice, Florence Nightingale Hospice, Bedford Day Care Hospice, Bedford Borough Council, Central Bedfordshire Council, East of England Ambulance Trust, Cambridgeshire Community Services; Bedford Hospital NHS Trust; Luton and Dunstable Hospital NHS Foundation Trust and Marie Curie

Bedfordshire CCG is a GP-led commissioning group that purchases secondary and community health services for the people of Bedfordshire.

Founded in 1953, Sue Ryder is a national charity providing health and social care in local communities. It provides advice, education and a range of person-centred services to people living with long-term and end of life care needs, and their families and loved ones. It does this in 7 hospices, 6 residential care centres, community-based services and people's homes. For more information visit www.sueryder.org

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