People First

People with learning disabilities – COVID-19 Support and Action Group

Wednesday 6th April 2022

Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675

1. Present

Andrew Sam Kweku Phil

Apologies:

Russell Peter

Jenny Simone Darren Sarah

Gary

Kieran Olcay Chris

Ray Charles Geraldine

Andrew: Looking forward to a break over Easter. Jenny: Feeling ok, busy with different things. Sam: Alright and getting over hay fever. Olcay: Have a cold and have had a seizure so feeling like crap.

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Charles: Happy to be here. Really happy with my team. Also, good comments on Facebook. Ray: Not too bad at all. Haven’t been keen to go out because of the weather. We did a webinar with Sam about our work with the SEOEP project. I’ll be taking a couple of weeks off over Easter and for my birthday to enjoy life. Phil: Feeling good and excited to hear that Beverly Lewis House, a refuge for women with learning disabilities, is still running and has had over 200 women have stayed there. It was started by a group of women called Power House. Simone: Ok, but trying to get my boiler fixed. Everything’s breaking down – got a lot to sort in the house. Hoping I’m meeting Sally Phillips Kieran: Feeling good. Been having some laughs, some at my expense!

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Kweku: Feeling really well. Been to a speaking up group called Busy People in Southampton Darren: Fine.

Topic: How lockdown has affected campaigning Covid-19 campaign work Simone listed some of the campaigns during the pandemic: Prioritising people for ‘life saving treatment’ Prioritising people for vaccinations Do not resuscitate (DNR) High death rates for people with learning difficulties Hospital visiting/support from family and friends Most of the campaigns were run by non-disabled people and larger organisations who were able to organise themselves quickly online.

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Some involved going to court, writing letters, surveys, and petitions. People with learning difficulties were not involved in a lot of these or came in at a later stage. Simone spoke about ‘The Every Death Counts’ campaign. Unfortunately the website was not accessible – it was run by 4 non-disabled people. The experience was not easy and they wrote a statement about why they weren’t going to work with Simone. Simone posed some questions: Who is in control of the social media? Who sets up the Crowd Funding campaigns? Who has the media contacts? Who sets up the networks? Whose voices are being heard?

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We need to ask what impact have we had. We have been able to start in- person campaigning like Heidi’s court case. Oi event 30 contributions Chris Burns logo Hybrid event Media coverage Heidi has written about the Abortion Act – UNCRPD evidence Easy Read documents Court of Appeal permission ROFA intervention Simone then spoke about the emotional and personal impact: Life styles and values Sense of being in the world Ideas of independent living and inclusion Being seen or hidden away Ability to change the world from our homes Developing different relationships online

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Ray: Spoke about how he adapted to working from home Simone: She felt people have become more inward looking and not engaging with wider issues. Kweku: If you work from home all the time you do miss out what’s happening in the community. Olcay: Some people have lost their confidence and worried about the numbers rising. Some people are still ending up in hospital. Some people are worried about dying. Kieran: Online if you’re confident with the tech. Some people struggle to get on to Zoom or Teams. Some things just aren’t the same online. Some advocacy is difficult unless you’re face-to-face. Kieran added that it’s about weighing up the risks, which seem to be reducing.

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Simone asked are we really making any change and having any influence? We can learn from other campaigns but it has had a greater impact when in person. Phil spoke about why some high profile people or MPs get involved in campaigns. Sometimes it may benefit or promote another cause that is important to them. Sarah added that campaigns need the right support and resources such as: An issue that is supported by more than a few people Good co-ordination and administration Strong and clear communications and messages A mixture of methods - in-person and online It’s also good to look for partners who share the same concerns or wishes.

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Sam: People with learning disabilities need to have a voice in everything that is done.

Information share

UK Covid-19 Inquiry: consultation on draft terms of reference https://www.gov.uk/government/publications/uk-covid- 19-inquiry-draft-terms-of-reference/uk-covid-19-inquiry- draft-terms-of-reference-html

Government Guidance on testing published 29th March 2022 https://www.gov.uk/government/news/government-sets- out-next-steps-for-living-with-covid

Action

• Email sent to Fionn Crombie (email received from Lynn Murray)

• Still to contact:
  o Alexis Quinn

  o Dennis Queen

• Confirm times for:

  o James Sanderson o Neil Crowther

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Next meeting:

Wednesday 13th April 2022 12:30pm - 2:30pm

https://us06web.zoom.us/j/97471173675

Chris’s Art Work

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