Peggy’s journey
Peggy Fray campaigned tirelessly on behalf of her sister Kathleen who had Down’s syndrome and later developed dementia. Rosemary Trustam attended this conference on dementia and learning disabilities in memory of Peggy Fray.
Quote: Betty, who is in her 80s and in a wheelchair, has staff who help her keep important friendships by reminding her about key dates so she can send cards and presents.
The conference was organised by Sue Sharples, now retired as Chief Executive of Ormerod Trust, to celebrate the life of Peggy Fray (1923 – 2014).
It brought together speakers in the forefront of practice and practice-led research, all there because of their connection with Peggy.
Peggy Fray was dedicated to her sister, Kathleen who had Down’s syndrome, born when Peggy was 4 years old. She took over her care following their parents’ deaths, helped her learn to read, write, knit, dance, communicate and make friends, showing what was possible in an era where there was no welfare state, when her sister was deemed ineducable and her mum told it would be best to put her in an institution. Following a flu virus in the late 1980s, Kathleen lost much of this progress and Peggy struggling to get help, couldn’t cope and had to let Kathleen go into an NHS resource. However, visiting her daily and representing her on critical decisions, she learnt about the challenges of navigating the system.
Following Kathleen’s death, though aged 74 and with her own health problems, Peggy campaigned tirelessly for a better world for people with learning disabilities, engaging everyone from the politicians to ordinary people. She became a trustee of the British Institute for Learning Disabilities (BILD), the Down’s Syndrome Association and Ormerod Trust, contributed to the Palliative Care network, as a representative on an international conference in Cape Town in 2008. She wrote a moving book about Kathleen still available from BILD (1).
Speakers all acknowledged Peggy’s amazing persistence and influence which showed the importance of family members asking awkward questions and doing things services can’t.
Professor Tony Holland ,CBE, said Peggy questioned the high dementia risk in people with Down’s syndrome. He described the history of research and the identification of markers indicating the need for very early intervention.
Other speakers emphasised the importance of knowing the person and distinguishing their learning disability from dementia. There are pockets of good practice and variable practices, with some projects showing the way to more consistent support and care.
Julian Hallett of the Down’s Syndrome Association warned of the dangers of not seeing past the condition to the developing dementia and loss of skills – but also of attributing changes to dementia when they are not. We should thus consider the effect of life events – particularly bereavement, depression (not necessarily an indication of the early stage of dementia) and the impact of vision and hearing losses which are also features of ageing. The person and their family carer can end up in older life in reciprocal caring relationships with a parent with dementia or other ageing illnesses.
The importance of our unique identity, developed through our relationships reflected back to us, was emphasised by Noelle Blackman, Respond’s Chief Executive. Noelle had met Peggy 18 years ago through her involvement in the GOLD group (Growing Older with Learning Disabilities (2)) set up in 1998 with people with learning disabilities and older carers to research ageing and learning disabilities. Despite only three years funding, David Thompson, Sarah Wright and Noelle, the facilitators, found a way to keep meeting.
Were she to develop dementia and become more confused, Noelle said what she would want from her friends and relatives would be her memories, important times, records, contact with the family, as only people who know you well will help keep you going.
Services have been poor at maintaining people’s histories and friendships. When people moved out of hospitals they lost their connections. It’s still happening. Betty, who is in her 80s and in a wheelchair, has staff who help her keep important friendships by reminding her about key dates so she can send cards and presents.
Another group member Edna, a wonderful artist producing paintings and pottery, was living independently in her own flat and going to creative classes. Following a fall she never quite recovered her independence, left the college and day centre and became depressed. She was moved five times because of health issues and each time she lost possessions – her painting, implements, family photos, even her own clothes. She started not functioning as a person. Eventually she was placed in a good service and the GOLD group visited her at important times like birthdays and Christmas. They helped make her room more personal with paintings she had given to friends and photos and took her to visit her sister. Knowing she loved a bath, they made sure someone got her up to have regular ones. David oversaw her care and a regular carer takes her out several times a week shopping and to a local cafe. The staff spend more time getting to know her and her quality of care has hugely improved.
Often friends and families and a person with learning disabilities are not told when a relative has dementia. Michael often arrived angry about what his dad had done – he didn’t know his dad was developing dementia. He lost touch with them but they tracked him down and he returned to the group and stayed.
How do we have conversations? (See resource Jenny’s diary (3)) Her clip showed how John became upset thinking staff were forcing him to eat when he was developing dementia and having some difficulty swallowing.
Good care of older people seems too often to depend on individuals and local relationships. The Scottish Building Bridges Project developed an integrated Care Pathway(4) endorsed in the Scottish Government Learning Disability Strategy Keys to Life. Funded for three years it built on an initial scoping exercise in 2011 by the Prince & Princess of Wales Hospice. The project was led by Allison O’Donnell a community learning disability nurse, with Liz Smith, a hospice practice development facilitator. It aimed to develop the best ways to support the palliative care of people with learning disabilities. Learning disability nurses were frustrated that people with learning disabilities with terminal illnesses or dementia were not getting the right care and support. The project covered the whole of Glasgow – six local authorities and eight learning disability teams with 5,300 people with learning disabilities.
Allison’s experience of the difficulties working across professional boundaries motivated her to improve partnership working between learning disabilities services and palliative care at local and strategic levels. Perhaps the most important outcome is the real joint working embedded in systems, and mutual respect developed.
They piloted their care pathway with 27 individuals – 37% of whom had dementia – and found HEF outcomes (5) showed improvements in person-centred-ness, holistic approaches, improved support, communication, choice and access.
(6) As well as the integrated care pathway and almost 500 hours of direct joint training delivery to palliative care and learning disability staff, their project outcomes included representation on key strategic bodies. (7). The ‘key practitioner role’ to coordinate care with older and ill people with learning disabilities who have no memory to communicate was felt vital for their care and that of the family.
Networks to improve all aspects of care and treatment – physical, psychological, psycho-social – should be built, said Linda McEnhill, Head of Supportive Care at St Joseph’s Hospice. It’s not about keeping people alive at all costs; it’s to ‘add life to days, not days to life’, she said, stressing the importance of the person’s identity and support to the family.
Sue Hird and Bill Nightingale described dementia pathways, a memory assessment service and various community initiatives such as memory boxes in libraries, dementia friendly communities and champions, Dementia Cafes, a Forget Me Not passport document, and their Dementia Action Alliance public awareness campaign.
The Lancashire Care foundation Trust wrote up vignettes based on real situations and over two years developed a training product which was tested and refined with life carers and support staff. Following the withdrawal by Lancashire County Council from pump priming the training, the project group found Aftathought (8), a training company dedicated to capturing experiences into training materials and where they can, working with people to share these experiences. Their drama taster eloquently showed how people aren’t listened to and how behaviour is mis-read as challenging behaviour or taken personally by staff and how assumptions arise. One phrase that struck me was, “What’s the point of giving him something new to do – he’ll just forget”. The first part of ‘Find Me’ training uses drama to help people connect hearts and minds before it goes on to deepen knowledge.
Tony Brindle-Wills’ presentation showed how singing can help people connect and come out from social isolation. He runs a 150 totally inclusive community choir and had the conference singing (9)
Messages are that good support needs more complex information, often not there. Peggy was an avid collector and sharer of information and her album is being taken to the Langdon Down museum (10) and her smaller one to the University of Cumbria.
The conference ended with the presentation of the Peggy Fray memorial award 2015, celebrating innovation and inspiration in the lives of people with learning disability and dementia, jointly awarded to the Warwick Road team at the Ormerod Trust and Sue Bardsley a Community Nurse, nominated by Rosalind Dodd and her sister Christine, both sisters of men with Down’s syndrome and dementia.
References
(1) http://www.bild.org.uk/our-services/books/peoples-life-stories/caring-for-kathleen/
(2) http://www.bild.org.uk/information/ageingwell/voice/
(3) http://www.uws.ac.uk/jennysdiary/
(4) http://www.ldpcproject.co.uk/palliative-care-pathway/
(5) http://www.ndti.org.uk/publications/other-publications/the-health-equality-framework-and-commissioning-guide1/
(6)http://www.ldpcproject.co.uk – contact Allison.O’Donnell@ppwh.org.uk
(7) Building Bridges Project outcomes http://www.ehospice.com/uk/ArticleView/tabid/10697/ArticleId/14629/language/en-GB/View.aspx
(8) http://www.aftathought.co.uk/find-me-specialised-dementia-training/
(9) https://www.youtube.com/watch?v=Olg3MU9QFWc
(10) http://langdondownmuseum.org.uk/
Useful resources
Dr Karen Dodd Surrey and Borders NHS Trust – guidance (www.bps.org.uk/system/files/Public%20files/rep77_dementia_and_id.pdf )
DSA resources and help http://www.downs-syndrome.org.uk
DVD – http://www.downs-syndrome.org.uk/shop/dvds/downs-syndrome-and-dementia-forget-me-not/
Fighting for Andrew £15.00 DSA, 2008 http://www.downs-syndrome.org.uk/shop/dvds/downs-syndrome-and-dementia-fighting-for-andrew/
