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

Wednesday 19th January 2022

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

1. Present

Firielle Kieran Charles Simone Phil

Apologies:

Andrew Ray Geraldine Chris Sarah

Gary

Jenny Samantha Vicky (& Dixy) Geraldine

Kweku

Joanne Peter Olja Russell

2. Introductions

Andrew welcomed everyone to the meeting. Jenny and Joanne asked everyone how they were feeling and if they had any other ideas about what they want the group to do or talk about.

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Samantha: the approach of Doctors when you go to hospital. They don’t want to talk to you. It’s very annoying.

Joanne: the difficulties around having appointments online.

Chris: I sent a letter to the Devon and Cornwall Crime Commissioners about how we are treated like second class citizens. We need to keep raising this.

Charles: I want to tell MPs how we are supported in this group. It’s important for people to know that people who can’t talk must still have the right to join in with the rest of society.

Kieran: make time for Heidi’s court case when it comes time for the appeal. Also, talk realistically about whether we continue to meet by Zoom or come together in person.

Olcay: keeping our medical information confidential.

Simone: raised a big issue with Liberty as I still can’t find a lawyer to work with us on Heidi’s case. Everyone has the right to representation and there seems a refusal to support disabled people.

Vicky: look at self advocacy and young people. Also, coming out of the pandemic

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2. Information share

Learning Disability Network Manager: The NHS England and NHS Improvement Learning Disability and Autism Engagement Team work to help people with a learning disability and their families, carers and supporters to have their say in work happening at NHS England and NHS Improvement.

We are looking for a new person with a learning disability to join our team as a Learning Disability Network Manager. The closing date for applications is Sunday 6 February 2022.

Online application form for Learning Disability Network Manager role - NHS England - Citizen Space

Empower Enterprise: Accessible Information and Communication Service Manager

People First (Self Advocacy) is looking for a new person to join their team as the Service Manager for the Empower Enterprise – accessible information and communication service. This position is for someone who has a learning difficulty, learning disability or autism. All roles are supported and we assist people to apply to Access to Work. th
Deadline for applications: Friday 18
Interviews will be held: Tuesday 1st March 2022 Please contact info@peoplefirstltd.com 020 7274 5484

February 2022

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Patient Association Group update

Joanne and Ray told us about the group and what it’s

doing.

Patient Association Group

Rebels with a cause – Traverse

Chris spoke about the group and the webinar that was held before Christmas. Chris has been working with a researcher and has produced some art work.

Clarity Project

Follow up work has included working to make things more accessible. Rosie and Sophie will be good allies to help find appropriate representation and support.

Inclusion North

The Ministerial Oversight Group has been set up to look at Do Not Resuscitate orders https://forms.office.com/pages/responsepage.aspx?id= GuwRpGqSAU2pbsrvqg3rwRq4FNs2ZA1BgABVQtQX Y1tUNFFOS1hZWDlJVFdTVTBCSkgxQURLOVRKRi4u

The letter: https://inclusionnorth.org/wp- content/uploads/2021/11/MOG-easy-read-letter-final- 2.pdf

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Action:

Philipa to contact Clarity Team about coming to a future meeting about finding legal representation for people with learning difficulties.

Vicky to speak to James Sanderson via Twitter about the group.

Next meeting: Wednesday 26th January 2022 12:30pm – 2:30pm

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

Chris’s Art Work

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