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Birmingham Conference 2012

undefinedEach year HemiHelp runs a conference for medical professionals in a different part of Britain, and in November 2012 it was the turn of the Midlands. Here HemiHelp trustee Liz Barnes sums up what came out of the day.

Our chair for the day was Doug Simkiss, Associate Professor of Child Health at the University of Warwick, who had assembled speakers from the region to bring their colleagues up to speed on their specialist areas and projects. It is always so good to discover at these conferences how hemiplegia, which Robert Goodman described 20 years ago as a ‘Cinderella Condition’, is now the subject of specialisation and research all over the country (and of course other countries as well). We may hope that in the future our children will benefit from the new knowledge of the condition and approaches to treatment that emerge.

Consultant physiotherapist Pauline Christmas, for example, told the conference about her PhD study of two kinds of CIMT (constraint induced movement therapy) to help improve the function of the affected arm and hand of pre-school children with hemiplegia. One group of children had intensive therapy with their unaffected hand just held down gently; another group had the unaffected arm put in a plaster cast or a splint for a week or more at a time.

Video footage taken by Pauline showed clear improvement in the movement and function of the children’s hands in both cases, but the study is still at pilot stage, so the results can’t be properly evaluated yet, although one thing that has come out is that despite parents’ worries, putting the ‘good’ arm in plaster doesn’t seem to have any long term effect, either physical or psychological. Pauline is now taking the study to a full scale Randomised Control Trial (RCT), the gold standard for research, which should answer some of the questions that surround this controversial treatment approach.

Dr Katie Banerjee’s talk on the use of Botulinum Toxin (‘Botox’) to treat hemiplegia focussed on the detailed recommendations in the NICE spasticity guideline (as a member of the NICE development group I was generally impressed with how often this was mentioned during the day – professionals are obviously paying attention to its contents).

In particular Katie spoke about how Botox injections could fit into the holistic approach taken by the guideline and its stress on families’ right to information and role in decisions about their child’s treatment (in fact she used the same quotes that I was going to use later!).

Two presentations covered issues connected with hemiplegia that are perhaps less well known. Dr Martin Smith talked about childhood stroke and why it is often diagnosed wrongly or too late for the child to be treated with the clot busting drugs adults receive. This situation was also discussed at our conference in Bristol in 2011, and it is important that specialists are trying to raise their medical colleagues’ awareness of the subject.

The second topic was the range of visual problems that affect children with hemiplegia. The speaker, Dr Lucilla Butler, was however detained at her hospital by an emergency, and I was drafted in to give my talk, ‘Hemiplegia – the parents’ perspective’ earlier than scheduled.

Then, since Lucilla still hadn’t appeared, Doug Simkiss stood in for her, using her PowerPoint (with occasional prompts from his audience on trickier slides), for which bravery he got the longest applause of the day.

But perhaps the most significant presentation of the day for us at HemiHelp was Doug’s own. He spoke about the James Lind Alliance (JLA) , a non-profit making initiative established in 2004. It brings patients, carers and clinicians together to identify and prioritise the top 10 uncertainties, or 'unanswered questions', about a given condition and its treatments, which it then recommends as subjects for research (conditions already covered include asthma and Type-1 diabetes.

The development of the NICE guideline was complicated by the almost complete lack of reliable research into the treatments our children are offered, so we were excited to hear that the JLA’s newest focus would be the health and wellbeing of children and young people affected by neurodisability. HemiHelp has signed up as a partner in this project, and we will support it by surveying our member families about unanswered questions about treatments, therapies & interventions related to hemiplegia. We will then help to rank the priorities to decide on the final top 10 list. We will publicise the survey by email and on the website and Facebook and Twitter, so do take this opportunity to have your voice heard.

Click on the links below to download copies of some of the speakers' presentations:

A priority setting partnership for the future research agenda in childhood disability. Dr Doug Simkiss – Associate Clinical Professor in Child Health, University of Warwick.

A work in progress - Pauline Christmas – Consultant physiotherapist for the management of spasticity in children, Birmingham Community Health Care NHS Trust

The role of Botulinum-Toxin-A in hemiplegia - Dr Katie Banerjee – Consultant Community Paediatrician, Heart of England NHS Foundation Trust

Overview and causation of early management of childhood stroke and hemiplegia - Dr Martin Smith – Consultant Paediatric Neurologist, Birmingham Children's Hospital

The management of hemiplegia: the parents' perspective - Liz Barnes – HemiHelp Trustee and co-author of the Hemiplegia Handbook

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