Cambridge Conference 2008
Developments in the management of hemiplegia: Peterhouse College, Cambridge, 23 October 2008
HemiHelp’s recent conferences have taken us as far afield as Scotland and the Irish Republic, but this time we were much closer to home. Over 80 medical professionals came to Cambridge, many of them from East Anglia and the Midlands, but as usual a few had made a much longer journey – one delegate came from Plymouth, and three all the way from Dublin.
It is always encouraging at conferences to find out about all the expertise in treating hemiplegia that is being developed around the country – of our six speakers three had come up from London and one from Oxford, and two worked at Addenbrooke’s Hospital in Cambridge, including our chair for the day, paediatric neurologist Dr Chris Verity.
Dr Verity started us off with an overview of hemiplegia, illustrated by MRI scans. Interestingly, he made the point that while scans are useful, for example to check premature babies at risk of developing hemiplegia or other types of Cerebral Palsy, he felt they should not be shown to parents as a matter of course, since they can be upsetting and may make the hemiplegia appear worse than it is.
Our next speaker was Professor Brian Neville of University College London Institute of Child Health, co-editor of the book ‘Congenital Hemiplegia’, who talked about the treatment of epilepsy in children with hemiplegia. He stressed the need to monitor whether seizures are affecting a child’s progress at school, since if this is the case surgery may be necessary to prevent further brain damage. He also talked about the importance of post surgery Physiotherapy and monitoring.
These first two talks were probably of most interest to paediatricians, but after coffee Dr Chris Morris, a senior orthotist from the Nuffield Centre in Oxford, gave a presentation aimed at the many physios in the audience. Called ‘Getting it Straight’, it covered everything you ever wanted to know about AFOs, DAFOs, SAFOs and WHOs - splints to the rest of us. After explaining the two aims of splinting – to improve function, and prevent deformity over time, he showed videos of children with hemiplegia before and after splinting, and talked about which splints were best to correct which type of walking problem. He also stressed the need to check the other leg and foot, which the child might be moving badly in compensation. AFOs are not always effective – if there are hip and knee as well as foot problems, surgery is needed as well, although since surgeons prefer not operate on young children AFOs can help put it off for a few years.
Another of Chris’s points was that NHS splints are not necessarily less effective than more expensive commercially produced alternatives, but some Physios I spoke to afterwards commented that he was in the enviable position of having a gait analysis clinic on the spot, facilities for making splints so that they fit perfectly, close team working with other specialists and so on, which most centres don’t have, and for them AFOs from commercial companies were sometimes cheaper and fitted better.
Another approach to treating lower limb problems was discussed by Dr Alison Sansome, a colleague of Chris Verity’s at Addenbrooke’s Hospital. Dr Sansome, an expert in the use of Botulinum Toxin to treat children with hemiplegia, gave a detailed account of her methods, down to the need to provide a chair for dads attending a treatment session, just in case they faint. The children, of whom she treats some 80 a year, take it in their stride. She recommended that doctors give parents HemiHelp and Scope’s literature on Botox at the assessment session, and also stressed the need for the use of the drug to be combined with ongoing physiotherapy.
Dr Jean-Pierre Lin of the Evelina Children’s Hospital in London, in his talk ‘The Magic of Movement’, returned to the need to give parents more information about their child’s hemiplegia, so that they don’t go away saying ‘the doctors don’t know’. Paediatricians may not be able to predict the future in detail, he said, but they usually have a good general idea.
Dr Lin went on to talk about the importance of early intervention to maximise the child’s use of his/her affected side and prevent the neglect that usually develops. The key to this, both at the hospital/CDC and at home, was to make exercising fun. Parents will often ask whether stem cell treatment might help their child, when in fact a young child’s own stem cells can be activated by stimulating play.
Dr Lin’s colleague, consultant Occupational Therapist Dr Dido Green, continued this theme, focussing on some of the ideas being developed at the Evelina to get children to use their affected hand and arm. She mentioned current research on Constraint Induced Therapy (CIT), where the child is forced to use the weaker hand by not being allowed to use the stronger one, but was sure this was not the answer, since most ADL (Activities of Daily Living) in fact require two hands, and given young children’s low boredom threshold it was very difficult to find enough one-handed tasks to keep the CIT going for long enough to be effective.
So at the Evelina the stress is on two-handed activity, and one area being explored is the use of IT. They are working on the development of computer games which will provide both stretching exercise (tennis games, for example) and practice in fine motor movement, and are keen to hear from anyone interested in designing games for children with hemiplegia. They also use virtual reality headsets, and hope eventually to have IT equipment convenient and cheap enough for children to use at home. Meanwhile, however, they have had to resort to magic – literally (hence the name of Dr Lin’s talk). We saw a video where a pair of volunteer magicians taught children tricks involving a lot of hand movement (both hands, of course). The effect on the children can be magic indeed. The magicians are also training Evelina staff, so the conference ended on a high note when Dr Green displayed her new skills.
Quite apart from the quality of the individual talks, I was very encouraged by two themes running through the day, both of them close to HemiHelp’s heart. The first was the importance of the professions working together to ensure the most effective outcome for children. This is already happening much more than in the early days of HemiHelp, but it was clear that it could be further improved, for example where the prescription of orthotics is concerned. The second theme was the need for better communication between professionals and parents. The speakers admitted that parents are often not given enough information about why their child is being offered one treatment or another, and they may end up not only confused but also unwilling to trust the medics. To quote Dr Lin, professionals should empower parents and families, so that they become real partners in their child’s development.
Click on the links below to download copies of the speakers' presentations.
“Hemiplegia – why, when and how?” Dr Chris Verity, Paediatric Neurologist, Addenbrooke’s Hospital, Cambridge
“Management of seizures in children with Hemiplegia” Professor Brian Neville, Chair of Childhood Epilepsy, Neurosciences Unit, UCL Institute of Child Health
"Orthotics and hemiplegia: getting it straight" Chris Morris, Principal Orthotist and Research Fellow, Nuffield Orthopaedic Centre and University of Oxford
“The Magic of Movement” Dr Jean-Pierre Lin, Consultant Paediatric Neurologist, Evelina Children’s Hospital, London
“Providing a botulinum toxin clinic and other local support” Dr Alison Sansome, Consultant in Paediatrics, Addenbrooke’s Hospital, Cambridge
“Emerging Therapies – Use of Virtual Reality to improve upper-limb function” Dr Dido Green, Clinical Expert Occupational Therapist, Evelina Children’s Hospital, London
Paediatricians attending this event claimed up to 4.5 CPD Credits, in accordance with the current RCPCH CPD guidelines.