Duchenne Muscular Dystrophy is a complex and progressive condition. As a family you will have many medical, education and social care assessments. You will be faced with choices about school, Further Education, adaptations to your home, mobility equipment, clinical trials and more. It can all become overwhelming and at times its easy to forget exactly what you and your family really need right now to help you or your young person to have the best possible quality of life and opportunities for the future.

You need a Plan - A RoadMap for Life. Remember no two young people with Duchenne are the same.

At Duchenne UK we have teamed up with Decipha a non profit Community Interest Company and Janet Hoskin and Nick Catlin to provide special educational needs support and advice on starting and developing your own personal Education Health and Care Plan. These are now replacing Special Needs statements in England but provide a very useful framework for other countries in the UK.

The Plan from 0-25yrs years must:

  • start with a discussion with the young person or adult about their dreams, aspirations and their achievements. What skills do I need develop to get to where I want to go? Its a good idea to ask the young person or adult to give a presentation or use a Wiki that is “All about Me”
  • include assessments for special educational needs, employment, medical and health needs, social care and independent living by professionals. Identify the skills that the young person or adult needs to develop to get to where he wants to go. What support or personal/social care does the young person or adult need? How and where will the best medical care be delivered?
  • identify the costs of provision that needs to made and who will deliver and evaluate agreed outcomes
  • be reviewed and outcomes updated at least once a year

If you need to get started, review a Plan or need specialist educational assessments then please email [email protected] and we will pass your details to Decipha.

They will contact you by phone and email to discuss how they can support you and your family. Duchenne UK is providing this service  FREE of charge to young people, adults and their families who are living with Duchenne.

Here is the press release update about our £80,000 grant to Decipha to support young people living with DMD and their families:

DUK’s investment in the groundbreaking work of the group Decipha has directly helped 117 families since 2017. People with DMD are at high risk of developing learning and behavioural difficulties. They face numerous medical, education and social care assessments. Decipha exists to navigate this complex arena providing a “RoadMap for Life” –helping families work with schools and educational facilities to develop the correct Education Health and Care Plan to unlock funding and support and to offer advise on mobility issues.

Decipha, is a non profit community interest company run by Nick Catlin and Janet Hoskin. It has received £80,000 from Duchenne UK so far and the charity is committed to continuing its partnership with the group -- to ensure that all families who need support can get it.

Nick Catlin, Special Needs Advisory Teacher and Director of Decipha, said:

 

“The start of your Education Health and Care (EHC) Plan at school is the chance for you to express your hopes, dreams and aspirations for your son living with Duchenne. It is so important to think about planning for the future by working with your son and school or college to identify the skills and qualifications he will need to succeed. If your son is falling behind his peers it is crucial to get an EHC Plan in place as soon as possible to get the support and interventions in place to help him catch up, gain confidence and build self-esteem.

 

The RoadMap for Life programme, funded by Duchenne UK, has been instrumental in supporting many families living with Duchenne Muscular Dystrophy to plan for a successful future”

 

Kate Tinkler's son Mitchell has Duchenne muscular dystrophy. She recently received support from Decipha, she said:

 

“It was invaluable to have the support of Nick and Decipha when 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. Their expertise and knowledge of Duchenne helped guide discussions around educational and health care needs specific to Mitchell.

 

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 and accepted”

 

You can read more about Kate’s experience with Decipha on our website: https://www.duchenneuk.org/decipha-patient-and-parent-stories

Charlotte Wakeling, mother of Felix, has also received support from Decipha. She said:

 

"My son Felix is starting school in September and like most parents, I’m feeling apprehensive, but with Duchenne there are even more worries to consider. I was in touch with Duchenne UK's cofounder Alex about my concerns, and she immediately put me in touch with Nick Catlin at Decipha. 

 

Contacting Nick was the best thing I could have done, what an inspirational man! Talking to him really alleviated my worries about Felix starting school and gave me practical advice about the EHC Plan process. Nick was not only able to give advice from a professional point of view, but as a parent too, which I think is so very valuable. Nick is very easy to talk to and has said to contact him at any time, if we need additional advice or even just a chat. This is good to know, and I will be most certainly using Decipha for Felix in the future. I highly recommend any DMD families to seek Nick and Decipha's free support"

 

To get in touch with Decipha visit www.decipha.org or email [email protected]

We have given out hundreds of FREE copies of Janet Hoskin book: ‘A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents’ to the Duchenne community. This is a really useful resource which brings together chapters by a range of experts in DMD aimed at supporting young people and their families as they move through school and college. Families can email [email protected] to order a copy.

We would like to thank Saul for sharing his knowledge of coding. Please read "Top tips from Saul Catlin for young people living with Duchenne"