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Interview with: Erb's Palsy Group
9 May 2014
Mistreatment.com today welcomes the Erb's Palsy Group for an in depth interview about its creation, objectives, Brachial Plexus Paralysis and birth injury at large and its often devastating impact.
We spoke to Karen Hillyer, Chairman at Erb's Palsy Group and extend our gratitude to her for taking the time to conduct this detailed interview with us.
Since its creation the Erb’s Palsy Group has already achieved a significant amount in progressing awareness about Erb’s Palsy, rehabilitative measures for both parents and children and in providing a safe port of call for advice, guidance and support. What more needs to be accomplished in spreading awareness about this neurological condition and what are your organisations goals for 2014 and beyond?
Whilst we have achieved a lot in terms of raising awareness of the disability, there remains huge amount of poor information about the treatment regimens available for children and the optimum timescales for the referral of children to a specialist centre for assessment and treatment. Our goal is to make all local and district hospitals aware of the importance of early referral for treatment. This is a mammoth task and whilst we have pockets of good practice in this regard, in most places in the UK parents are often given little or no advice on how to care for their baby and how to perform the essential physiotherapy that each baby needs to maximise it’s recovery. We are currently working on a new fact sheet to be given to parent of new babies within the first few days of life offering information on how to care for the baby, dress it, bathe it and position it for sleeping. It will also contain information on how to position the baby to breast feed it comfortably without causing discomfort to the baby’s arm.
Our aim is that this sheet should be available in all maternity units to be passed onto parents, and we hope to see Maternity units engage with us and provide these leaflets when necessary. However we are aware that this is a huge undertaking and may well be a long term goal !
We are also working on a resource booklet for teens and young adults with the condition – in our experience these youngsters have been somewhat neglected in terms of information and treatment options, and we would like to try and rectify this. Our booklet will contain helpful information about when and how to seek treatment, practical information about learning to drive, and information about how to deal with matters of personal care. This booklet is almost finished and we hope to have it available by the end of 2014.
Currently we are awaiting delivery of a booklet which deals with the legalities of Disability Discrimination in work and educational places – many of our group members report that their choice of subjects at GSCE level has been somewhat limited by their teachers who feel that “ the demands of the curriculum will be too much for your level of function “ and whilst we appreciate that this may be rooted in truth, we firmly feel that young people should be encouraged to pursue subjects which they want to and that it is for the school to ensure that access to the full curriculum is available despite their disability. We are hopeful that by producing a booklet which clearly outlines the legal requirements of such establishments our members can then use is as a tool to ensure their requests are considered fully and properly and a suitable compromise can be made for all parties.
It is clear to us as an organisation, that there is still a lot of work to be done surrounding the understanding of the nature of this disability and it’s impact on the person and we shall continue our mission to inform!
Erb's palsy usually heals by itself with the help of physiotherapy, but when this is a more serious injury then neonatal or pediatric neurosurgery is needed-of those who call to you for advice, do enquirers range across this spectrum described or fall predominately into one of the above camps?
Prior to the inception of the internet, the vast majority of enquirers would fall into the camp of those children whose injury was more serious. We believe that this is because those whose children made a good initial recovery did not feel the need to undertake the difficult search to find information. It was therefore only babies with residual difficulties and poor recovery whose parents eventually felt the need to seek further information. However since the internet has become such a source of information we find that enquirers come from both camps – those who undertake an internet search immediately and contact us and those who prefer to wait and see. We have a good mix of recovered babies and those with permanent disability in our organisation.
So as to make Erb’s Palsy more avoidable in future incidences, what more do you feel needs to be undertaken with regards to better training of medical staff?
For the most part, Erb’s Palsy ( Brachial Plexus Injury) is an avoidable condition. It usually arises from an obstetric emergency called Shoulder Dystocia, where the baby’s shoulders become stuck in the mothers pelvis.
Training Clinicians in the correct manoeuvres to overcome the shoulder dystocia successfully, without causing permanent injury to the baby is a MAJOR part of the work our organisation undertakes. We have contributed funds towards the development of a life like mannequin for training in obstetric emergencies – which is now available for all NHS trusts to purchase for their training drills.
Each year we run a training event accredited by the Royal College of Midwives, with leading professionals delivering the Gold Standard of hands on training with the mannequin. To date we have trained over 1000 midwives in these techniques and this will remain a major part of our organisational activities for the foreseeable future. If we could roll our training out and make it standard practice in EVERY maternity unit in the Uk and make is mandatory for ALL Obstetric staff to attend we firmly believe that we could lower the incidence rate of permanent injury to the baby significantly.
We will be working in partnership with Professor Tim Draycott and his team from PROMPT maternity training towards this goal – but we do have a long way to go.
Range-of-motion exercises established by an occupational therapist help keep the muscles and joints flexible for patients with Erb's palsy-yet do you feel further change can be implemented in the area of rehabilitative care so as to help children move forward with mobility in their lives?
At a recent symposium of the Narakas Society (a group of the top Brachial Plexus Specialists in the World) there were several presentations which outlined the development of Yoga as an additional method of exercising the arm, we would also like to see the inclusion of Hydrotherapy as standard in the treatment of children with the condition.
However the greatest chance that most children have for rehabilitation is early intervention from a physiotherapist and a specialist surgeon, to ensure that no children “slip through the net” and miss the small window of opportunity for a primary nerve surgery. It has been established that active elbow flexion against gravity by 12 weeks is the most accurate indicator of whether or not a child needs surgery - which then needs to be performed quite quickly, preferably before the baby is about 9 months of age – for those children with a more severe injury, this is by far the best guarantee of function and mobility for their future.
Other than this we would very much like to see an end to the common practice of children being discharged by Physiotherapists and Occupational Therapists by the time they are 2 or 3 years of age. This condition is notoriously unstable and a child who may seem to make good progress at 2 years, can quickly lose function and mobility and need surgery by the time they are 5 or 6 years old. Some of these secondary surgeries could potentially be avoided if therapists were involved in the routine care of the child and could spot muscle contractures when they begin and advise care givers and parents advice on how to overcome the contracture with therapy.
We appreciate that the financial constraints on the NHS are such that this level of input is unlikely, however perhaps an annual review of the child would be beneficial to all parties.
Thank you very much Karen for taking the time to speak with us and raising awareness about Erb's Palsy and birth injury.
Both Mistreatment.com and the Erb's Palsy Group can provide you or a loved one about advice about the condition, rehabilitative measures, guidance, support and what to do if avoidable errors occurred which unfortunately resulted in a Brachial Plexus Injury.