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.
12 December 2022: A Message from the PCPLD Network Chair
I am very sorry to have to inform you that from 28 February 2023, I have made the decision to step down from my duties as Chair and Trustee at PCPLD Network. The decision has been an extremely difficult one for me to make but I will continue to support and champion PCPLD for many years to come.
I’d like to thank the Board of Trustees and Specialist Advisory Group for being the most marvellous and passionate group of people to work alongside and I leave in the knowledge that the charity remains in the safest of hands and the warmest of hearts.
I will remain as Chair during the interim period whilst we appoint to the post. If you are interested in applying, please read the job description below and information on how to apply.
With kind regards,
MOST RECENT NEWS
14 November 2020: Covid deaths and people with learning disabilities: response from the PCPLD Network
New joint guidance from the PCPLD Network and NHS England
The PCPLD Network has worked in partnership with NHS England to produce a guide (published August 2017) titled Delivering high quality end of life care for people with a learning disability. Resources and tips for commissioners, service providers and health and social care staff. You can find it HERE.
PCPLD Network December 2016 Newsletter
PCPLD Network August 2016 Newsletter
PCPLD Network June 2016 Newsletter
PCPLD Network April 2016 Newsletter
MINUTES FROM AGMs
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).
European Association for Palliative Care White Paper now available online, click here to read.
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.