Patient care & support

Back to School Webinar with Decipha

26th August 2020

On 25th of August we held the Back to school webinar with Nick Catlin and Janet Hoskin from Decipha about how to prepare for returning to school.

Watch the recording of the webinar here:

Please get in touch if you need Decipha’s help: If you need to get started, review a plan or need specialist educational assessments then please get in touch with Decipha by emailing: [email protected] or visit www.decipha.org.

The following checklist was created by Nick Catlin at Decipha to support families in the DMD community returning to school (this is also an appendix on the Risk Assessment document):

All young people with DMD have a right to full time Education. A School or College must make ‘reasonable adjustments’ to make sure disabled students are not discriminated against.

Students will have an Education Health and Care Plan that has fully assessed his Special Educational Needs (Section B) and provided support and agreed interventions (Section F) to help meet those needs. The COVID-19 pandemic has led to months of lockdown, loss of education and isolation from friends and extended family.

1. Contact your headteacher or Principal. Every school or College will have undertaken a risk assessment. Has the process also included risk assessments for individual pupils identified as at greater risk?

2. As part of your son’s EHC Plan have you agreed an individual risk assessment? Does this now include risks associated with COVID -19? eg Neuromuscular consultant assessment of risk due to medication that might lower immune response? Risks of respiratory infections?

3. What protective measures do the school have in place?
– minimising contact with pupils or staff who may become unwell
– cleaning hands
– catching coughs and sneezes
– enhanced school cleaning
– social contact/distancing
– wearing masks and gloves (PPE)
– test and trace
– managing an outbreak
– containing an outbreak

4. What social distancing measure are in place?
– form or year groups, bubbles
– classrooms
– around the school and at break times
– how will your son work 1:1 with TA’s, LSA’s to support learning and behaviour?
– arriving and leaving school
– transport to school

5. School operations
– school transport and public transport
– attendance – Is your son asked to attend 100%?
– educational visits
– school uniform
– extra curricular activities

6. Educational Provision
– how will your son catch up?
– will you need to review his EHC Plan?
– do you need further assessments (Section B) from teachers, Education Psychologists, OT Physio speech therapy, CAMHS
– is he lagging behind his peers in literacy, numeracy, other subjects?
– has his mental health or behaviour been affected by being isolated at home?
– are there any new interventions or provision needed (Section F)?
– do you need up to date Health (Neuromuscular Consultant, Physio, OT) assessment?
– do you need up to date Social care assessment (Social Worker)
– will all his education be in school or will the school offer blended learning (In school and online). Are these programmes meeting his needs?




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:

For more information visit www.duchenneuk.org

Published on 24 August 2020

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