This week June 15 – 21 we are celebrating Learning Disability Awareness Week. The theme of the week is the importance of friendships during lockdown. Although we can’t have events to come together, Oxford Health NHS Foundation Trust’s Learning Disability services are persevering to keep people informed, engaged and safe.

The service has compiled over 400 COVID-19 Hospital Passports for people with learning disability. The passports include brief summaries of medical conditions, medicines, dietary requirements, eating and drinking difficulties, and communication preferences and were sent to OUH to be appended to patient records.

Hospital Passport is also known as COVID-19 Grab and Go Guide and you can see it here.

The service has also identified patients at very high risk and checked with them and their GP what arrangements are in place, should they contract COVID-19, and what their wishes would be. The service continues to make weekly, or more frequent, welfare checks.

Easy read information for all

Ever since the pandemic started evolving, patient experience lead Rachel Miller has been creating and collating easy read information on Coronavirus. The material ranges from all official government and NHS guidance to how to make a face mask from a sock.

Everything is published on the trust website and is free to use. Rachel keeps updating the collection promptly as guidance changes which means that people with learning disability and people who work with them have easy access to reliable information, all in one place.

“We really wanted to make sure that GPs, service users and our partner organisations have this information readily at hand and wouldn’t need to create everything themselves,” Rachel says.

Feedback from My Life My Choice self-advocacy organisation was: “Just saw the Oxford Health Easy Read information related to COVID-19. Amazing to see such a comprehensive list of resources – well done to you and the team.  Thank you!”

Planning for summer activities

Rachel has continued fortnightly patient involvement meetings with patients at Evenlode medium secure unit in Littlemore.

“Our meetings are now of course via video conferencing. In order to be able to keep their distance from each other, our participants have to sit in the garden, but it’s worked out all right,” says Rachel. The group has had quite an enjoyable task, too: plan how to spend their NHS Charities Together grant.

“We received £300 from Oxford Health Charity to fund activities for the unit and wanted everyone to have a say on what we ought to spend the money on,” Rachel says. She and the patients co-produced an easy read ‘shopping list’ where everyone can tick the options they’d most like and suggest something new if their wish is missing. The choice ranges from board games to garden plants and a giant bubble wand.

Rachel and the group are also co-producing other easy read material such as service information leaflets, a ward rule book updated with Covid information, and a pictorial summer menu for the ward.

“Before Coronavirus patients and staff at Evenlode used to take turns in preparing lunch for the ward but now they need to order from the restaurant se we needed an accessible menu,” Rachel explains.

National book project

Rachel Miller says the people she is working with – both at the wards and in the community – are faring well but beginning to feel, frankly, bored with the pandemic – just like everyone else.

“People are missing social contact and going out and about. Some of the people I work with missing work, the things they did in our Leading Together group and in their own advocacy work,” Rachel says.

Luckily there is a national project that is collecting stories and experiences from people with learning disability on how they have been coping with COVID-19. Members of Cardiff University, Foundation for People with Learning Disabilities, London South Bank University and Oxleas NHS Foundation Trust have been brought together by Peter Cronin, self-advocate and member of the Lewisham People’s Parliament to produce a book about the Coronavirus crisis, and Rachel is involving people from Oxfordshire in that.

Activities from Mencap

Discover activities you can get involved in with ideas from Mencap, from making a friendship flag to signing up to befriending.

Mencap campaign for Learning Disability Week 2020

Images in story by Photosymbols.