Government guidance

The government has updated their guidance for clinically extremely vulnerable (CEV) people following the introduction of the new three-tiered local COVID alert level system. You can read the full guidance here, but at all local COVID alert levels (medium, high and very high) the advice is:

• Children should continue to go to school, unless they have been advised not to by a GP or clinician

• Everyone is advised to work home where possible

• ‘Formal shielding’ will only be reintroduced in the very worst affected local areas, and the government will write to you if you are advised to shield

Duchenne UK is concerned that this new government guidance does not do enough to set out what assistance is available for families if they have to shield, and that there is a risk of a second lockdown but without any of the care and support available during the first lockdown.

If you are advised to shield and require support you can get in touch with NHS Volunteer Responders or your local authority. The government’s guidance states that you may be eligible for extra care and support from your local authority, but does not outline what this provision is – and promises further information in the ‘formal shielding’ letter. In practice there is likely to be discrepancies in the level of support between councils. However, under a new law which comes into force from 22 October schools must provide remote learning for children who cannot attend school due to COVID.

The use of letters to communicate shielding caused much confusion during the first lockdown, and Duchenne UK is worried that inconsistencies and lack of clarity will cause confusion again. If you are unsure or do not know if you are CEV and on the shielded patients list (SPL), please contact your GP or clinician. They can offer you advice and add people to the SPL if necessary. More info on how the SPL works can be found here.

North Star – Back to School FAQ

6th November update: We have been given this update from North Star clinicians to address the concerns of the community following the new COVID-19 lockdown and confusion regarding advice for extremely vulnerable: https://www.duchenneuk.org/news/updated-schoolcollege-guidance

Separately, the Leeds neuromuscular multidisciplinary team including Dr Anne-Marie Childs, consultant paediatric neurologist, Sue Manning, specialist care advisor and Chris Edwards, respiratory consultant have summarised guidance on back to school in a FAQ document, which has been reviewed and supported by North Star Clinical Network clinicians. You can find it here.

In the clinician’s opinion it appears that children and young people with an underlying neuromuscular condition do not have a particularly increased risk of developing a severe Covid 19 infection, and that with appropriate hygiene measures it is safe for children to return to school.

Duchenne UK's CEO, Emily Crossley, said:

Many families with DMD are facing the prospect of shielding again - without the support they had during the first wave of COVID-19, but with just as much confusion.

Once again it feels as though vulnerable people are an afterthought. Guidance for CEV people should have been built into the local COVID alert level system from the start, and vulnerable people should be told what support they have a right to access - not made to wait for a letter which may or may not arrive.

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