HemiHelp Conference for Professionals, London, 6 December 2004
From the very beginning, conferences for both professionals and parents have been an important part of HemiHelp’s work, but for the past year they have taken a central role in our efforts to reach as many families as possible. Through successful conferences in Cardiff, Birmingham and London, we have not only been able to educate some of the professionals who work with our children about hemiplegia and HemiHelp, but have ourselves been able to learn about interesting work, both medically and socially based, going on around the country.
The neurological basis of hemiplegia
One of the main themes of all the conferences has been the neurological basis of hemiplegia – the fact that it is caused by damage to the brain and that this damage doesn’t just affect a child’s limbs. Many people still think of hemiplegia in terms of a limp or a weak arm, and don’t connect it with a child’s odd behaviour or problems with learning to read or do maths. So HemiHelp conferences usually begin with a talk filling in the picture, talking about the developing brain and its attempts at ‘rewiring’, which often leave the child with psychological and/or educational problems.
Speakers Dr Sunny Philip at Birmingham and Dr Frances Gibbons at Cardiff both highlighted recent research using MRI scans which suggests that the timing of the brain damage in congenital hemiplegia is more important for determining its effect than the area of brain affected. The researchers looked at four groups of children, those with:
- Developmental damage in early pregnancy
- Reduced blood supply to part of the brain between 26-34 weeks of pregnancy
- A ‘stroke’ in late pregnancy or around the time of birth
- Premature babies with reduced blood supply or bleeding into the brain
Their findings included:
- left brain damage (ie right hemiplegia) is more common for all groups except 3
- the arm is more affected than the leg in all groups except 2
- severe learning difficulties and epilepsy are most likely to occur in group 3
- the more mature the premature baby when the damage occurs, the worse the hemiplegia.
- in premature babies the opposite side is often also affected and in fact the commonest form of CP is not hemiplegia but diplegia
- in recent years more premature babies with hemiplegia have survived, but the number of children with the other types of hemiplegia is relatively stable
Much of this information is of course of little consolation to parents retrospectively, but it is hoped that further research will allow specialists to predict a child’s future problems from scans, so that therapists can concentrate on those areas. For the moment, however, it is encouraging to learn that growing awareness of hemiplegia has been leading to earlier diagnosis, which in turn means earlier treatment to try to minimise its effects. Therapists are also more likely than before to be working more closely together in teams, looking at all aspects of the child’s development.
Dr Carole Yude: Life in the classroom
Dr Carole Yude spoke about her research for the hemiplegic register, what it ascertained and how these findings impacted on the lives of children in a classroom setting. She covered the peer relationships of children with hemiplegia, integration and what it actually meant to these children and what predictors there may be of peer problems.
Constraint induced therapy
One much-discussed area, according to Hilary Rattue, a senior physiotherapist at St George’s Hospital in Tooting, South London, who spoke at our conference in London in December, is the thorny issue of CIT, constraint induced therapy. In other words, do you encourage your child to use their affected arm by not allowing them to use the other one? This raises the old spectre of left-handed children having their left arm literally tied behind their back so that they would learn to be right-handed, and the psychological damage this often caused, but given that many children with right hemiplegia would naturally have been right handed, and vice-versa, more therapists are trying out the idea in some mild form, with due care for the child’s psychological welfare. In any case, Hilary reminded us, whatever you did in therapy sessions, children would usually revert to minimal use of their affected hand when no one was watching; nevertheless any skills learned might be of use in the long term.
Equality and inclusion in schools
Another major theme, especially at our London conference which was attended by both medical and education professionals, was how best to ensure that people, including children, with disabilities be treated as equal members of society. Jaspal Dhani of Disability Equality in Education began his talk on inclusion in schools by looking at the medical and social models of disability. According to the old, medical, model, the words disability, impairment and handicap all defined people by what they couldn’t do because of their loss of physical function. So a wheelchair user like Jaspal could be refused access to education or work because a building had no lifts, or banned from a cinema because he and his chair would be a ‘fire hazard’. A definition of disability, using this model, was formulated by the World Health Organisation as late as 1980 and is still used in UK government documents. The social model of disability, developed by disabled people themselves, turns all this on its head. Disabled people, it argues, have the same rights to education, work and leisure as anyone else, and are prevented from using these rights not by their disability but by physical and social barriers around them.
Thanks largely to the efforts of disabled people themselves, we now have the Disability Discrimination Act (2002), which goes a long way towards removing at least the physical barriers.
Old attitudes to disability will of course take longer to disappear, but the more visible disabled people are, on the bus and everywhere else, the more equal they will become. And here of course education has an enormous role to play. Some parents of children with hemiplegia, especially those with associated medical problems, still come to the unwilling conclusion that ordinary schools are not catering adequately for their child, but the vast majority of our children are in mainstream, and HemiHelp has always tried to give parents and carers the information to help them receive the best possible support. The second part of Jaspal Dhani’s talk was on the Special Educational Needs and Disability Act (2001), which has been implemented in stages. In 2002 it became illegal for schools and LEAs to discriminate against students with disabilities in any way. The law applies to all schools, whether state or independent, to colleges and universities and to nurseries, and it covers not only the curriculum but everything from school trips to school dinners. It has also been successfully tested by a large number of dissatisfied parents. And as of April 2004 all schools and LEAs must have an access plan detailing how they intend to improve access to education for children with disabilities.
Sport and disability
The Act includes of course access to sports activities - an area of inclusion often perceived as difficult by schools, although disabled students benefit as much from physical activity as anyone else. Local provision of suitable facilities is also very patchy.
At the London conference we were very enthused by a talk by Mark Leach, who works as a sports development manager for Newham, a London borough with an excellent record of provision for people with disabilities. Mark, a former footballer who has hemiplegia himself, was the first disabled person to get an FA coaching certificate, after he persuaded the FA that a coach didn’t need to be able to demonstrate skills in order to teach them. In Newham he manages a sports programme with an emphasis on multi-ability participation, with activities adapted to meet people’s skills. Mark used as an example his own problems with warm-up exercises before football, which he finally solved by using yoga and Pilates stretches, which could be performed whilst lying down. And he reminded us that even people with quite serious impairments can be included in activities such as sailing, which is very effective in improving body posture. In the near future HemiHelp is hoping to produce an information sheet on sports opportunities around the country, and we hope we will find more people as inspiring as Mark.