Duchenne UK submits evidence to the parliamentary inquiry on the impact of COVID-19 on education and children’s services
17th August 2020
Duchenne UK has submitted evidence to the Education Committee's inquiry into the impact of COVID-19 on education and children’s services.
The Parliamentary inquiry is looking at all the ways COVID-19 affects the education sector and children’s social care system, and will scrutinise how the Department for Education is dealing with the situation. Once the committee has completed their inquiry they will publish a report which the Government must respond to. The committee has extended their deadline for written evidence until 30 September. The committee accepts submissions from individuals, and if you would like to add your views you can find more information in the call for evidence.
We recognise the severe impact COVID-19 has had on DMD families, and listened to the experiences of our members, supporters and partners while compiling our evidence. Key points from our written evidence include:
- The relaxation of the legal duty to meet the provisions agreed in Education, Health and Care Plans (EHCPs) has had a severely detrimental effect on the education, support and quality of life of young people with Duchenne Muscular Dystrophy (DMD). These hard-won statutory rights, including EHCP time limits, must be restored in full as soon as possible, and the Government should amend EHCPs to ensure they don’t need to be suspended in the future.
- The DMD community feel as though they have been an afterthought, with the serious nature of their disease ignored or lost in wider messaging. There has been little guidance other than shielding advice for families of children who are classified as ‘clinically extremely vulnerable’ - both during lockdown and returning to school. Going forward, updates to guidance for the general public should be published in tandem with an update for vulnerable groups, and only after consultation with the vulnerable groups and special consideration for their needs. It is unacceptable to alter generalised guidance yet leave vulnerable groups waiting for additional information.
- Measures to support families who have been shielding at home should be brought in immediately, with a view to make such provisions permanent. This should include access to personal protective equipment, antibody testing, remote learning, access to the National Tutoring Programme and mental health support. Time and again support for families has been reactive, not proactive. Measures should be put in place so there is an automatic package of support for families forced to shield in the future - whether that is due to a new disease or a ‘second wave’ of COVID-19.
You can read Duchenne UK’s written evidence to the Education Committee inquiry: the impact of COVID-19 on education and children’s services in full as a PDF here.
NOTES TO 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.