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Making an outstanding contribution to end of life care for people with learning disabilities

Author: Jason Davidson and Dr Irene Tuffrey-Wijne
24 June 2016
  • Jean Willson OBE, winner of the 2014 Linda McEnhill Award, and Irene Tuffrey-Wijne present the award to the 2015 winners

As nominations open for The Linda McEnhill Award 2016, we find out more about last year’s winner and how the award fits into the work of the Palliative Care for People with Learning Disabilities (PCPLD) Network to share best practice.

The PCPLD Network recognises and shares best practice through the annual Linda McEnhill Award, given to individuals or teams who have made an outstanding contribution to end of life care of people with learning disabilities.

It is striking that examples of best practice almost always involve collaboration between all the different services involved, with an emphasis on inclusion, listening carefully to the patient’s own needs, concerns and wishes, and providing support for the family.

The 2015 winners are a wonderful example of this.

St Anne’s Community Services in Huddersfield, winners of the 2015 Linda McEnhill Award

Oxfield Court Nursing Home is part of St Anne’s Community Services and supports 24 people with learning disabilities living in four bungalows.

Following some bad and sad experiences of poorly managed deaths, the home manager teamed up with the hospice next-door for support and training.

This was the beginning of a collaboration between learning disability and palliative care services, leading to a wide range of important initiatives.

There were mutual training sessions, so the hospice could learn about communication and the home could learn about symptom management and recognising the end of life. The nursing home gained GSF accreditation. A non-verbal pain tool was developed.

They were then given some funding by the clinical commissioning group to develop their work further, and a project team was created, which worked on producing a training package.

Impressively, all learning disability services contracted through Kirklees CCG now have mandatory end of life care training; they have to work through the training package as part of their contract.

As a result of all this work, the team has noted real improvement to the end of life care of the six clients who have died since these developments started.

Staff feel more confident, and have more open and honest conversations with people with learning disabilities and their families. They have held sessions for families on end of life care. Death and dying has moved from being a taboo subject to one that is openly talked about and planned for.

The effectiveness of this work is highlighted by the outstanding care provided to two people with learning disabilities who died within the care of St Anne’s Community Services, at Heatherstones Nursing Home and 8 Oxfield Court, who both won a Highly Commended Award this year. Not only was the care given with warmth and dedication, but it was also well planned and well supported, both by other agencies and by the home managers.

The Linda McEnhill Award is now in its 9th year. Nominations are open until 31 August 2016. Anyone can nominate or be nominated.

There have been a wide range of winners of the past years, ranging from comprehensive service developments in hospices and/or learning disability services, to the development of bereavement support materials, to the care given by a single team or a family to one person with learning disabilities at the end of life.

Annual conference

The winners of The Linda McEnhill Award are announced each year at our annual conference.

This major conference is always a hugely inspiring event. This year the PCPLD Network conference is being held on 4 November in Leeds. There will be presentations on the latest research, developments and innovations.

Jason Davidson is supportive care services manager at Marie Curie Hospice, Hampstead, and chair of the PCPLD Network. Dr Irene Tuffrey-Wijne is associate professor in intellectual disability and palliative care, Kingston University & St George’s University of London, and chair of the Linda McEnhill Award judging panel.

You can find out more about the PCPLD Network, its conference and The Linda McEnhill Award on the PCPLD Network website.

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