Disability Awareness Day – celebrating 60 years of medical research
Children’s charity Action Medical Research is celebrating its 60th anniversary this year; marking Disability Awareness Day (15 July) by celebrating significant contributions to helping disabled children.
More than £100 million has been invested by the charity into vital medical research over the past 60 years, which has led to some key scientific breakthroughs and helped thousands of babies and children.
Duncan Guthrie founded the charity in 1952 to help find a cure for polio – killing hundreds of children and leaving thousands disabled in the UK at that time.1 Early research led to the development and rapid adoption of the first oral polio vaccine which dramatically reduced new cases in the UK.
Today, around 800,000 children in Great Britain have a disability of one type or another.2 And the inspiring work started in the 1950s continues for Action Medical Research. Current funding has been awarded for research into conditions such as cerebral palsy, stroke, multiple sclerosis, learning and movement disabilities, attention deficit hyperactivity disorder (ADHD) and many projects aiming to prevent brain damage at birth which can cause disabilities.
Design and technology: liberating and transforming
Thanks to the charity, researchers at the University of Bath have developed an ingenious chair that moves with children with severe disabilities, like cerebral palsy, who have spasms.* The chair is more comfortable and gives the children confidence to sit independently and communicate more easily.
In the 1980s, funding helped researchers at University College London to develop an innovative, flexible seat design to prevent pressure sores in children with severe physical disabilities. The ‘Matrix’ seating system is now used around the world.
In the 1960s the charity supported the development of POSSUM (Patient Operator Selector Mechanisms, in Latin meaning ‘I can’) by funding researchers at Stoke Mandeville. The technology links home appliances and specialist electrical products to a single personal electronic controller. This helps people with severe disabilities with everyday tasks like switching things on and off, answering the telephone and turning the pages of a book. Being able to do these things can have a liberating and transforming impact on individuals.
Supporting communication, easing pain
The 'Paediatric Pain Profile', a unique way for parents and carers to assess pain felt by children who find it difficult to communicate, was also supported. During the late 1990s Action Medical Research funding enabled researchers from the Royal College of Nursing Institute in Oxford and the Institute of Child Health in London to develop and test this tool.
In the UK around 10,000 children with severe motor and learning disabilities are cared for by their parents.3 It is vital that carers know when to intervene with pain relief. The scale contains 20 different pain cues including vocal, changes in posture and in mood and eating patterns (available to download free from www.ppprofile.org.uk).
Still more to do
Although the charity has helped save and change so many children’s lives, there is still much more to learn about what triggers diseases, how to prevent them and how to develop effective new treatments and find the best ways to care for sick babies and children.
- ENDS –
NOTES TO EDITORS:
* Funded by a generous grant from The Henry Smith Charity
1. Case study: Janet (polio)
Duncan Guthrie’s daughter Janet was diagnosed with polio in 1949 at just 20 months old. One of the cruellest aspects of her illness and hospitalisation was that for an entire month her parents were not allowed to visit her at all.
Speaking at the time, he said: “The drooping corners of her mouth and the silent tears on her cheek as the bell and the bustling nurses chivvied visitors from the ward will remain with me forever.”
Janet recovered from her illness and escaped the severely disabling effects of the disease but many thousands weren’t so lucky. Thousands were left completely paralysed or with serious disabilities.
“It was painfully clear that very little was known about polio. When my own personal turmoil had died down I realised the greatest contribution to be made would be in helping the medical profession to develop its knowledge about the disease, and in enabling it to improve both prevention and treatment.”
2. Case study: Riley – Essex (cerebral palsy)
Being able to sit comfortably is something most children – and their parents – take for granted. But for some very severely disabled children, like eight-year-old Riley Runciman, sitting in a standard seat or wheelchair can actually be a frightening and painful experience. Riley suffers from a severe form of cerebral palsy meaning he struggles to control his arm and leg movements and has whole body spasms. Riley is only really comfortable sitting on someone’s lap, so his parents Mandy and Lee are almost constantly taking it in turns to hold Riley.
The couple have tried many different chairs for Riley, but without success. Now an Action Medical Research team is working on a chair that moves with the child during a spasm, emulating the behaviour of a parent or carer. It could finally bring the Runcimans’ search for a seating solution to an end. “This chair could radically change Riley’s life and improve our family life too,” says Lee. “Riley will be able to participate more fully at school, and for us to be able to carry out normal tasks, such as putting out the rubbish or cooking dinner, would make an enormous difference.”
3. Case study: POSSUM
Available on request.
1.National Fund for Research into Crippling Diseases 15th Annual Report, Research Review (1967).
2.Office for disability issues. HM Government. http://odi.dwp.gov.uk/disability-statistics-and-research/disability-fact... (accessed 14.6.12)
3.Dr Anne Hunt, University of Central Lancashire. http://www.uclan.ac.uk/schools/school_of_health/paediatric_pain_profile.php (accessed 14.6.12)
For further information please contact:
Toni Slater, Interim Communications Manager
T: 01403 327478
Follow us on Twitter at @actionmedres
Action Medical Research - the leading UK-wide medical research charity dedicated to helping babies and children - is celebrating 60 years of vital research in 2012. We’ve been funding medical breakthroughs since we began in 1952 and have spent more than £100 million on research that has helped save thousands of children’s lives and changed many more. Today, we continue to find and fund the very best medical research to help stop the suffering of babies and children caused by disease and disability. We want to make a difference in:
•tackling premature birth and treating sick and vulnerable babies
•helping children affected by disability, disabling conditions and infections
•targeting rare diseases that together severely affect many forgotten children
But there is still so much more to do. Make 2012 a special year and help fund more life-changing research for some of the UK’s sickest babies and children.