People with learning disabilities – COVID-19 Support and Action Group
Wednesday 23rd March 2022
Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675
1. Present
Andrew Simone Chris
Guest: James Sanderson
Apologies:
Gary Peter Jenny Sarah
2. Guest speaker: James Sanderson
Kieran
Olcay
Kweku Phil
Ray Sam Vicky Joanne
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Andrew welcomed James and explained why the group was set up and when. Everyone introduced themselves. James said it was a huge privilege to be here. |
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We started by asking if people know about Personalised Care? 2 people said they did. We then asked if people understood what Shared Decision Making in Health was. 2 people said they did. James: I’m National Director for Personalised Care for NHS, end of life care, wheelchair services, Chair of national academy for social prescribing and in the past CEO of the Independent Living Fund. Personalised care is about giving people choice and control over the way care is planned and delivered. Giving people the skills to live lives well. It is all about treating people as individuals and seeing the person behind the illness Been rolling this out over last 2 and a half years. 2.8 million people are currently |
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benefitting with an estimated increase to 4 million over next couple of yrs. Social prescribing is about connecting to community groups and being able to access care that’s more meaningful This can be challenging for people with learning disabilities. Joanne: asked about LGBT groups and trans groups. James said it was important to reflect cultural identity, religion etc and making services that are tailored to the individual. A one size fits all approach doesn’t work People with learning disabilities and shared decision making; we want to train clinicians to have better conversations with people. 40% of people don’t understand the information they are given. We have techniques called Talk Back. We want people to be fully informed. |
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We need to get this right for people with learning disabilities too. Ray: Last year I had a biopsy I had letters that weren’t in easy read. I felt I was treated like a bit of an idiot. How can people in hospital communicate better with us? Joanne: I know a lot of people in ATU’s and they’re also getting left out...they can’t access services because they’re in an ATU Vicky: 6 or 7 weeks ago I fell and broke my knee cap. The consultant offered a plaster caste which I didn’t want so I stayed in a splint. Last week he said its healed. This is a good example of personalised treatment and a shared decision... t worked for me James: It comes down to training.... to being respectful and valuing people’s diversity and giving options and making sure options are very clear ATU’s it’s a real challenge and |
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we need to support ppl to live in communities and reduce number of people in ATU’s We have a long way to go with the personalised care agenda We need to call it out and say when personalised care isn’t being provided as it’s the government agenda Simone: What’s your relationship with the Transforming Care Programme? Kweku: NHS staff do not always treat you with disrespect. I got messed about a lot and they blamed me. James: Re Transforming Care Programme, there are 15,000 people and multiple programmes and it’s a programme that’s very important to bring personalised care in. I’ll talk to colleagues further about your points. Kweku’s point about having a long way to go, it’s awful to hear about your experience...we have to accept we need to bend the |
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way we deliver care to suit the people receiving that care if not we fail as a service. We’re all beautiful people with different skills, experience, brains, bodies and we need to understand this James was asked if he would be up for working with us on your priority areas in the future James: of course |
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Reflections on the session: |
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Some people felt James really listened and gave clear answers. Others felt he seemed a bit removed from the frontline and didn’t answer the question fully. It was suggested that next time he comes we have 2-3 questions. |
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Sharing news:
Olcay has started slimming world again and lost half a
pound
Ray went on an anti-racist march
Sam has been busy sorting out lots of things
Joanne has been busy with the new SeeAbility launch in Lancashire and has 20 opticians signed up. Also working with Pathways to get more women with learning disabilities to go for breast screening in Greater Manchester. Now having a week’s holiday.
Kieran missed his regular set of injections due to Covid. They should be every 3-4 months but hasn’t had them for over 2 years. GP has booked them for next Tuesday so he’s pleased about that.
Andrew has been busy with the Empower Manager interviews and the Nepal sessions. Also gardening and catching up with some movies.
Simone joined the protect with Disability Action Network (DAN) who presented a list of demands for better health and social care. She suggested inviting Alexis Quin from DAN.
Phil asked if anyone would like to speak to the Law Society on 7th July 10am, about why accessible information is important.
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Andrew suggested inviting Rosie and Sophie to the group to talk about it before then.
Kieran said he would be interested.
Ray asked if anyone had seen the ‘When Alan met Barbara’ film. He said it was brilliant. https://www.bbc.co.uk/iplayer/episodes/m0015p4q/then -barbara-met-alan
Next meeting:
Wednesday 30th March 2022 12:30pm - 2:30pm
https://us06web.zoom.us/j/97471173675
Chris’s Art Work
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