October 2020

At the start of October, the government published a new Direction which comes into force from 22 October. The Direction states that schools will have a legal duty to provide remote education for state-funded, school-age children unable to attend school due to COVID.

This is will be relief for many Duchenne parents, and should ease much of the burden of home-schooling if children much shield. However, this Direction from the Education Secretary does not cover areas such as childcare. You can read the government’s explanatory note on the direction here (PDF).

During the first lockdown the government suspended education, health and care plans (EHCPs) until the end of July. While the Department of Education has not indicated they will suspend EHCPs again, the Education Secretary can do so without parliamentary approval and without delay. However, unless that happens, it remains the duty of the local authority and any health bodies to secure or arrange the delivery of the provisions in EHCPs in the setting that the plan names. Scenarios where this is made more difficult by, for example, shielding, will be considered on a case-by-case basis.

More detail on what remote learning schools should provide can be found here.

NOTES FOR EDITORS

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