Bristol Conference 2011
Developments in the management of hemiplegia: Bristol Cambridge, 18 November 2011
In November HemiHelp continued its regional professional programme with a conference in Bristol that brought together paediatric consultants, physio- and occupational therapists and other medical professionals to hear about developments in the treatment of hemiplegia. It also gave us an ideal launch pad for the newly published Hemiplegia Handbook.
Our chair for the day, Dr Finbar O’Callaghan, a consultant paediatric neurologist at the Bristol Royal Hospital for Children, started us off with a talk on childhood stroke, the leading cause of acquired hemiplegia. Only 20% of children with hemiplegia have the acquired type, and so it attracts less attention (and in any case the effects and treatment are mostly similar to those of congenital hemiplegia). Dr O’Callaghan began by saying that childhood stroke may be as common as childhood cancer, but there is a striking lack of public and medical awareness of it and this affects everything from speed of diagnosis to funding for research. Almost half of children coming to A&E after a stroke are wrongly diagnosed at first, and it is often too late to treat them with the clot-busting drugs routinely given to adults. A recent year long study covering southern England showed that less than half of children recovered fully after a stroke, and that only 1/3 had been given physiotherapy and OT. So educating parents and, especially, front line medical staff is a priority.
Our next speaker began his presentation with a so-called self-portrait, showing a cave man armed with a club – the medical profession’s usual image of a surgeon. Fergal Monsell, also from the Royal Hospital for Children, explained that surgery, despite its sharp tools, is a very blunt instrument, to be used only when less invasive treatments – physio and OT, orthotics and Botox - are not working. It does, however, have its place in treating hemiplegia, and Mr Monsell, after describing various foot and leg operations, touched on the growing use of arm and hand surgery. Until recently this was considered merely cosmetic, to improve a child’s self-image, but now there is increasing recognition that surgery, followed by intensive therapy, can improve function, although not fine motor movement.
Andrew Mallick of Bristol University made the point in his presentation that while one child or young person with hemiplegia may desperately want their wrist ‘fixed’, even if it doesn’t make it work better, for another it may be the least of their concerns. He was talking about another change in thinking and practice, towards a more holistic way of looking at hemiplegia – what in medic-speak is called Qol, in other words quality of life. This is difficult to define and measure but is fortunately becoming more central to children’s treatment, since it focuses on what is important to them and their parents.At a simple level this might mean that rather than prescribing exercises to strengthen a child’s leg, a therapist discusses with the child and family what he or she really wants to be able to do – perhaps ride a bike or kick a ball straight – and works towards that. But it can also mean looking at how to minimise the stress on family life caused by the child’s disability.
After lunch Dr Chris Morris of the Peninsula Medical School of Exeter University, an old friend of HemiHelp, talked about the role of orthotics in treating hemiplegia (Chris has helped HemiHelp revise its orthotics info sheet), and then Anne Gordon of the Evelina Children’s Hospital in London brought together many of the themes of the conference with an overview of the changing aims and practices of treatment, stressing again the need for a holistic and partnership approach that reflects children’s and parents’ own priorities and helps children share in normal childhood activities with their friends and classmates. The presentation included a look at recent research, of which there is not much. Anne Gordon was however able to report on a couple of studies on a question of keen interest to our members: what is more effective to improve children’s hand function - modified constraint therapy (CIMT) or bimanual therapy? The answer is that in intensive trials both have been shown to be equally effective.
The last session of the day was a short introduction, by Liz Barnes, HemiHelp Trustee and parent of child with hemiplegia, and co-author Dr Charlie Fairhurst , to the Hemiplegia Handbook, copies of which had arrived hot from the presses a few days earlier. Charlie outlined his ‘medical’ chapters, while I based my presentation on a survey carried out by HemiHelp in 2010 to find out what members thought of their child’s NHS treatment. I summed up what parents wanted, but were not always getting, in three points: continuity of treatment, communication between medics and families and coordination between different departments. This, judging from the positive feedback I received, seems to have come as news to some professionals. But let’s hope they will take it to heart.
Feedback from professionals who attended the event:
‘Improved understanding about best practice in treatments’
‘Networking opportunities, communicating with other professionals in your field’
‘Increased knowledge about the support available from HemiHelp’
Click on the links below to download copies of the speakers' presentations:
Orthotic management of Hemiplegia:understanding the effect of orthotic intervention. Chris Morris MSC DPhil – Senior Research Fellow in Child Health Peninsula Medical School, University of Exeter
The Hemiplegia Handbook - Liz Barnes – Parent and Trustee, HemiHelp