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 from when we announced our £10,000 grant to Decipha to support young people living with DMD and their families:

Duchenne UK has joined forces with Decipha CIC, an organisation dedicated to providing specialist advice and support to young people and their families with complex education and medical Special Educational Needs. Decipha has worked with many families and schools about the learning and behaviour needs associated with having DMD. 

Children with DMD have a high risk of specific learning and behaviour problems, that if not identified, can lead to young people falling behind their peers at school and in some cases cause social, emotional and communication problems.

Decipha has successfully developed the RoadMap for Life Programme that can help to identify key outcomes required for Education Health and Care Plans for young people living with DMD.

With the funding from Duchenne UK, Decipha will work face to face with families and offer a range of assessments and valuable support. 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.

Decipha was set up by Nick Catlin and Janet Hoskin whose son Saul, has DMD.

Nick Catlin, Director and SEN Advisor at Decipha, said:

"We know from research that there is a high risk of boys with Duchenne having specific learning and behaviour problems. The good news is that boys can improve these lagging skills with the right support and intervention.  We are delighted to work with Duchenne UK to be able to offer an range of options through our RoadMap for Life programme that will help to identify positive outcomes for young people living with Duchenne."

Emily Crossley & Alex Johnson, co-founders of Duchenne UK said:

“Duchenne UK’s primary focus is on funding research. But we are acutely aware of the daily struggles faced by families as they try to navigate schooling and get the best support and care for their sons. We are pleased to be supporting Decipha and that our funding will allow families to access this expertise and advice at no cost to them.”

If you are a family and would like to find out more and Register for the Decipha RoadMap for Life Programme then please visit: http://decipha.org/roadmapforlife 

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"