29 May 2002
Cerebral palsy children could benefit from a pioneering project at a renowned Sussex facility, thanks to a new cash injection from Action Research.
The leading medical research charity, based in Horsham, West Sussex, has awarded a new grant to the tune of almost £150,000 to Chailey Heritage Clinical Services. The new funding means that the total support from the charity to the East Sussex facility so far has exceeded half a million pounds.
The two and a half year study will be using state-of-the-art equipment to help improve children’s posture and prevent unnecessary hip dislocations, and could have lasting impact on improving their quality of life. The tools could potentially reduce deformity, pain, the need for hip surgery, and the disruption this causes to family life.
Research physiotherapist Terry Pountney, who says she’s ‘thrilled’ by the new grant adds: ‘There is no cure for cerebral palsy, but if children are positioned well from an early age and encouraged to play in a way that helps them to improve their posture and muscle control, they can be helped to achieve more things for themselves. The idea is to intervene early, rather than wait until surgery is required.’
Action Research, which is celebrating its 50th Anniversary this year, announced the new funding with a special launch at Chailey Heritage, with a helping hand from newly-promoted Brighton and Hove Albion player Charlie Oatway. He says: ‘As a father of four children, one of whom has a mild form of cerebral palsy I can appreciate the commitment that Action Research has made to this study.
‘The importance that medical research can have in helping to touch lives cannot be underestimated, and parents must take comfort from the fact that this project has a real chance of making a positive impact. Over the years, Action Research has made a massive commitment to cerebral palsy and I wish it all the best in this venture.’
Cerebral palsy is an umbrella term for a group of conditions characterised by disordered movement and posture. It’s the most common cause of physical disability in children, and results from damage to the developing brain prior to, during or soon after birth.
Cerebral palsy can affect one side of the body or both (also known as bilateral cerebral palsy), and the latter affects about two in every 1,000 babies born each year. Approximately a third of these children go on to suffer from hip dislocation of one or both hips.
Terry explains: ‘This can cause huge problems in physical ability, with children not able to walk or lie properly, and it prevents their hip joint from forming normally. It can also result in considerable pain and discomfort, and the added risk of complications like scoliosis (curvature of the spine) setting in, which may demand surgery.’
The important foundation work has already been laid down through a current research grant, which is due to come to a close this Autumn. This three-year study, also supported by Action Research, recruited newly diagnosed infants (under 18 months old) onto a postural management programme which has become known as “the Chailey approach”.
The programme uses equipment which has been specially designed by Chailey Heritage engineers and can be used over a 24-hour period. The aids include such things as a sleeping system to maintain hips in a neutral position during the night, standing supports, special seats and adapted cycles.
Researchers have been assessing the effectiveness of the equipment, which has so far proved extremely positive. Of the 27 children who have reached the first milestone of 30 months of age - when they have their first hip X Ray - 78% have had no hip problems. ‘The predicted outcome is looking favourable’, says Terry.
Importantly, she adds: ‘A study evaluating the views of parents who are involved in the study found that the equipment not only improved posture and positioning but also increased the children’s independence, their feeling of wellbeing, and improved their muscle strength and control.’
The new follow-on grant was selected for further funding following a rigorous assessment. It will be crucial in enabling the researchers to follow the progress of children until at least the age of five years when the true measure of effectiveness and long term impact of postural management on hip dislocation can be made. If the research proves to significantly reduce the overall incidence of hip dislocation in children with bilateral cerebral palsy, it could form evidence-based guidelines for nation-wide treatment.
Action Research is committed to helping people of all ages overcome disease and disability. The charity’s Touching Lives Campaign aims to raise £2.5m in 2002 for vital medical research. Help us reach our target by visiting www.action.org.uk
For further information and interviews, please contact Nicole Duckworth or Vicki Rayment in the Action Research press office on 01403 327403/404 Fax: 01403 210541, or email firstname.lastname@example.org
Fact file: *One in every 400 children is affected by cerebral palsy, and as many as 1,800 babies are diagnosed in the UK each year.
*The brain damage can arise under a number of different circumstances: whilst a baby is developing in the womb – due to infections, lack of oxygen or maternal diabetes; at the time of birth – linked with prematurity or a difficult birth leading to a lack of oxygen; during infancy – following meningitis or head injury.
*Cerebral palsy usually only becomes evident when babies are at least a few months old, when parents notice that they are not developing normally.
*Bilateral cerebral palsy affects about two in every 1,000 children born each year.
*Chailey Heritage Clinical Services help children and young adults with multiple and complex disability who may need a wide and co-ordinated variety of services.
*It is part of South Downs Health NHS Trust and has a purpose-built accommodation and school on the site.
*Roy Nelham, who has been a leading figure in designing and producing the postural aids, is retiring as Director of Rehabilitation Engineering at Chailey Heritage Clinical Services at the end of May. Team member Donna Cowan, a Consultant Clinical Scientist, will be taking over as the lead Director of Rehabilitation Engineering. Also in the team are Alice Goldwyn and Kim Barton.