News

This page will be updated with information relating to palliative and end of life care for people with a learning disability. Please send us any news items you would like us to include here.

You can find details of our conferences (both past and future) here.

February 2017 Newsletter

AGM 2016 Minutes

PCPLD Network December 2016 Newsletter

PCPLD NETWORK – The Future

August 2016 Newsletter

PCPLD Network August 2016 Newsletter

June 2016 Newsletter:

PCPLD Network June 2016 Newsletter

April 2016 Newsletter:

PCPLD Network April 2016 Newsletter


Older News:

February 2016:

New national Emergency Care and Treatment Plan consultation

The public consultation for the new national Emergency Care and Treatment Plan started recently. The UK-wide ECTP will go some way to addressing the issues of premature deaths and poor decision-making that many have highlighted for over a decade.

The public consultation is a key stage in the process towards implementation later this year and having feedback from people with a learning disability and their carers is important.  If you would like to respond to the consultation, please go to the ECTP consultation website which is available on https://www.resus.org.uk/consultations/emergency-care-and-treatment-plan/.

The following key statement from the website may be helpful:

The Emergency Care and Treatment Plan records a personal summary of decisions about what types of care and treatment an individual would or would not want to receive, and about what types of care and treatment would or would not be of potential benefit to them if their health deteriorates and they are unable to make choices at the time.

It aims to ensure that each individual receives the best possible treatment for their specific situation in any setting (e.g. their home, nursing home, hospital, hospice, or during an ambulance journey). 


Opportunity to apply for a PhD scholarship in palliative care for people with learning disabilities.  Fore more information please follow this link: http://www.findaphd.com/search/ProgrammeDetails.aspx?PGID=2617

If you are interested in applying and would like to discuss ideas for a possible study protocol, please contact Irene at I.Tuffrey-Wijne@sgul.kingston.ac.uk


European Association for Palliative Care White Paper now available online, click here to read.


New Chairperson for PCPLD Network – Jason Davidson, London area coordinator has taken over as Chair of the network.

Current Steering Group Members are:

Irene Tuffrey-Wijne (Associate Professor in Nursing; Palliative Care/Learning Disability Nurse, London)

Peter Allum (Learning Disability Representative, London)

Jason Davidson (London Area Coordinator; Palliative Care Social Worker, St Joseph’s Hospice, London)

Louise Jenkins (Hertfordshire Area Coordinator; Health Liaison Team Lead Nurse, Learning Disabilities, Hertfordshire)

Dorry McLaughlin (NorthernIreland Area Coordinator; Lecturer in Palliative Care and Chronic Illness, Belfast)

Allison O’Donnell (Scotland Area Coordinator; Practice Development Coordinator, Palliative Care, Glasgow)

Annie Stewart (Associate Specialist in Palliative Medicine, Plymouth)

Jean Willson OBE (Carer Representative, London)

Gillian McGhee (Key Community Supports, Glasgow)

Amanda McKie (Yorkshire Area Coordinator, Matron – Complex Needs Care Coordinator)

Margaret (Peggy) Fray Obituary

It is with great sadness that we learned of the death of Peggy Fray on 24th April 2014 at the age of ninety. Born in 1923, she was the older sister to Kathleen – who arrived just one week before her fourth birthday and was born with Down’s syndrome.

In June 1943, at just 20 years old, Peggy joined the Women’s Royal Air Force as a Wireless Operator and was eventually trained in Morse Code. Her fiancé served and was killed in action serving as a pilot in the RAF. She attended the Guildford Secretarial College and in the 1940’s and 50’s, she was Secretary to the Trust Officer in the Lloyds Executor and Trustee Department at Threadneedle Street in London.

Peggy cared for her sister for 40 years until she sadly passed away in 1997, but this gave Peggy the motivation to support everyone with a learning disability. She was an advocate of Personal Health Action Plans and for people with Down’s syndrome to have regular sensitively administered assessments. Peggy also wrote a book entitled ‘Caring for Kathleen’, published in 1999, on Down’s syndrome and dementia.

Before joining The Ormerod Group in 2004, Peggy had vast experience of working within organisations that supported people with learning disabilities across the world. She was a Specialist Advisor on Family Matters to the Chief Executive on the Council for the British Institute of Learning Disabilities. Peggy was also a carer representative on the Steering Group of the Palliative Care of People with Learning Disabilities Network.

Close to her heart, she was elected as a Trustee onto the Executive Committee of the Down’s Syndrome Association and was a member of the Lancashire Alzheimer’s Research and Interest Group at Lytham Hospital. Peggy regularly attended the bi-monthly Trustee meetings until the end of 2013 when her health began to decline. She was an elegant and endearing lady who kept her sense of humour and fun and she always had ‘a good tale to tell’. Peggy has left the Trustees and staff who knew her with many fond memories and her contribution to the Ormerod Trustee Group was highly valued and will live on. Opened in 2012, by Peggy herself, The Peggy Fray Dementia Unit will continue to uphold her memory and legacy at the Ormerod for future service users and staff.

Linda McEnhill award winners

Names of the 2015 winners have now been announced, please click the link for more information. You will be invited to nominate for the 2016 award in Spring/Summer 2014.

European Insights Article

Click here to read an article about the PCPLD Network published in European Insights.