Patient care & support

Back to School update from Decipha

Decipha have given us the follow information to share with the community:

It is important that families check with their schools that they have taken measures to make school safe.  

COVID-19 infection rates are rising across the country and there are new lockdown measures being proposed in local areas. Check with your Local Authority and Government websites for Coronavirus updates. There are also significant problems with getting tests, which might affect how your own school is staffed or operates.

On return to School or College we are advising parents to request reviews of EHC Plans as soon as possible. Parents and young people should update their advice for Section A and submit to the review. Describe in detail any concerns that you might have in terms of your child falling behind his peers in learning and/or behaviour due to the lockdown and loss of education.

Do you have any concerns over the young person's Mental Health? It is important to ensure that up to date assessments of SEND are made and written into Section B. Make sure that in Section E and F your Outcomes and Provision are specific and quantifiable. If you need to see an example of how to write a good EHC Plan look at the CDC version and compare it with your own Plan. 

You should agree an individual risk assessment for your child with DMD relating to measures taken for COVID-19 infection risks and a safe return to school.

If you need help, support or advice contact Nick Catlin [email protected]

Duchenne UK is proud to be funding Decipha's Roadmap For Life programme, an education support programme. This is a FREE service to DMD families. 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.

For more advice, please watch our Back To School webinar with Decipha.


What is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?

Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading Duchenne charity in the UK, we connect the best researchers with industry, the NHS and families to challenge every stage of drug development to make the incurable, curable. Together, we will find treatments and cures for this generation of patients with Duchenne.

Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell. 

We need your help, because we need to keep funding promising new research.

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.

For more information visit www.duchenneuk.org

Published on 17 September 2020

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