Patient and Parent Support Patient and Parent Stories Decipha: patient and parent stories Duchenne UK is proud to be funding Decipha, an education support programme that is free for families. Decipha was set up by Janet Hoskin and Nick Catlin. The Decipha team work face to face with families and offer a range of assessments and valuable support to help them navigate educational challenges. This might involve training at school or some advice or support over the phone, or a full assessment followed up by detailed reports and recommendations towards Education Health and Care Plans. This is a FREE service to DMD families. Kate Tinkler's son Mitchell has Duchenne muscular dystrophy. She recently received support from Decipha and has written a short blog about her experience. "Mitchell was diagnosed with Duchenne muscular dystrophy three years ago. He was 5 and 1/2 years’ old. He is now 8 and has just started year 4. Whilst his school has been really supportive and responsive to Mitchell’s needs, as parents we were becoming increasingly aware that Mitchell’s physical needs were changing, that he was struggling more with walking around school and was finding it more difficult to keep up with his friends playing football. Additionally, although Mitchell was not falling behind academically, his teachers consistently reported that Mitchell struggled to focus in class, to formulate his thoughts into his written work and found it difficult to sit still. contacted Nick at Decipha for advice around how to help the school understand the more subtle elements of Duchenne as well as helping professionals understand the risks in terms of his physical limitations and the need for comprehensive risk assessment and planning for extra- curricula activities, such as swimming. We felt that it was time to begin the process of formalising Mitchell’s care in school and to initiate the application process for an EHC plan. It was invaluable to have the support of Nick at the meeting in school. Their expertise and knowledge of Duchenne helped guide discussions around educational and health care needs specific to Mitchell. We explored how Mitchell’s need to access daily physiotherapy and weekly hydrotherapy, which was recommended by his physiotherapist, was important to maintain his physical abilities for as long as possible. We also spoke about the need for a full assessment of his difficulties relating to focusing and learning so that this can be fully understood and appropriate support provided to develop his confidence and motivation in this area and to prevent him from falling behind. We thought about the importance of a comprehensive risk assessment specific to Mitchell’s physical limitations and use of his wheelchair in school in order to accommodate issues relating to pacing and minimising the risk of harm to Mitchell. We also thought about the importance of sensitive thought and planning in relation to extra- curricula activities such as sports day, school trips and physical activities such as swimming. The meeting was really positive and school were supportive of our wish to apply for an EHC plan at this stage. It was agreed that further assessment of Mitchell’s needs was appropriate and the educational psychologist acknowledged our concerns around Mitchell’s attention span and impulsivity in the classroom. This will form part of the application to the local education authority to commence the comprehensive needs assessment required for consideration of an EHC plan. Having an external Duchenne- specific presence at the meeting really helped navigate this process and meant that our concerns were taken seriously, were supported and more likely to be understood." Kate and her son Mitchell Decipha was set up by Nick Catlin and Janet Hoskin whose son Saul, has DMD. Nick has written a few words about Decipha and the work they do. “We have the results of the genetic tests. Your son has Duchenne Muscular Dystrophy” Its hard to imagine just how much your life is going to change following those words from your clinician. Perhaps the single most important hope we have for our children is that they will live long and healthy lives. In one short moment all that seems to be taken away with this diagnosis. But before long you have no choice but to roll up your sleeves and get stuck into understanding Duchenne and trying to make sure that your son gets the best possible medical care. Then he will start school and all of a sudden you are faced with more assessments, more professionals and a host of other potential problems to investigate. Duchenne is a complex genetic neuromuscular condition that requires expert multiple agency assessment and support over the lifetime of the young person. The progressive muscle wasting and its impact on the Health of young people is well documented in the internationally agreed Duchenne Family Guide. Duchenne Muscular Dystrophy is the result of the loss of the dystrophin protein in muscle due to an X chromosome genetic mutation and in some cases the loss of isoforms (short bits) of the protein normally found in the brain also seem to affect cognitive function. The thing is your son is also likely to experience the effects of muscle wasting and other impairments in different ways to other boys with Duchenne. However, we do know much more now about the natural history of the condition and high risk neurodevelopmental factors that should give professionals starting points for assessing your son. The problem remains that Duchenne is a rare condition and often Education, Health and Social Service professionals need some guidance on how to assess your sons’ needs and provide good targeted interventions. There are high risks of neurodevelopmental disorders such as ASD, ADHD, OCD and potential problems with hypersensitivity, attention and working memory. Social, Communication and Emotional skills can lag behind peers and there can be specific problems with learning to read, phonics, spelling, writing and number skills. Generally speaking boys with Duchenne have good vocabulary and general knowledge. There can be stages at which young people and their families have significant problems adjusting to living with Duchenne Muscular Dystrophy and this can impact on young people’s mental health and self esteem. Training and support for independent living is crucial. The impact of muscle wasting is apparent from an early age and so the care needs to support the independence of young people and adults must be continually assessed and reevaluated by Education, Health and Social Services agencies. Transition milestones from Nursery, Primary, Secondary, Further Education, Training and Higher Education and into Employment are crucial points to review assessments, outcomes and agree the right placements that have full accessibility. It is always important to seek the views of the young person and their family at every stage to consider aspirations, dreams, hopes and agree skills that need to be developed for the young person to get to where they want to go. You need a Plan. An Education Health and Care Plan. In England there is legislation in place to deliver exactly the sort of holistic plan (0 - 25 years) that young people and adults require to ensure all the right assessments and needs are identified and that the right provision is made through clear, specific and measurable outcomes. It is important for parents, LA officers, Social Workers and SENCO’s in schools to understand the process for agreeing and developing an EHC Plan for Duchenne: A parent or school SENCO can request that a needs assessment is undertaken for an EHC Plan by applying to their Local Authority The Local Authority must follow the timelines set out in legislation. 6 weeks for an initial stop/go and then 14 weeks full assessment of need An assessment must take place about the needs of the child or young person;About what provision may be required to meet such needs;About the outcomes that are intended to be achieved by the child or youngperson receiving that provision; This process can take up to 20 weeks before an Education Health and Care Plan is issued. So is it all worth it? There is no doubt it is an intrusive and time consuming process but once outcomes are agreed you can feel more confident that provision is being made to give all the support your son needs to help him to get to where he wants to go in life. It should ensure that he is getting the best possible medical care and developing all the right skills at the right pace to help to keep him up with his peers as far as possible. In England it means that there has to be a statutory review at least every 12 months, but often more frequently, that gives you the chance to make sure that everything that has been agreed is working well or will be reassessed. The process should empower you and your son and ensure that your voice is always heard and your views taken seriously. At Decipha we can offer support to help you get started or review an EHC Plan. We can offer fellow professionals advice on how best to asses the needs of someone living with Duchenne and provide guidance on best possible interventions. If you would like to make contact then please go to our website: www.decipha.org and fill in the form. Dr Janet Hoskin has edited an excellent book that will be out for sale in December on Amazon: A guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents You can also meet with us at the Patient Information Day organised by Duchenne UK. Nick Catlin Special Needs Advisory Teacher and Director of Decipha. Nick also has a son living with Duchenne.