Skip to main content

People with learning disabilities COVID-19 Support and Action Group

Wednesday 20 July 2022

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

1. Present

Andrew Charles Vicky

Olcay Geraldine Kweku

Russell Sam Sarah

Lorena Simone

Ray Kieran

Philipa

2. Apologies:

Jenny Joanne Gary Firielle

Andrew and Russell welcomed everyone.

Olcay thanked everyone for the Get Well cards the group sent.

Everyone spoke about how they were coping in the heat.

Some people have found it difficult to sleep.

1

Feedback from Kieran and Vicky about the Heidi court case.

Its unlikely there will be a decision until the end of summer.

There was no conclusion at the end of the day and there isnt a date for the day of judgement.

An updated statement from the People First was published. https://peoplefirstltd.com/downright- discrimination/

3. Discussion: Preparation for visitor from National Lottery (Leaders with Lived Experience Programme)

Harriet is joining the group next week. She is a consultant working with the National Lottery. She would like to meet with people who have benefited from the Leaders with Lived Experience grant we received to run this group.

They would like to find out

more about you as leaders.

2

We thought it would be helpful to think about what has been good and what has been difficult.

  •   We were able to learn new ways of communicating online and become more confident using Zoom.

  •   We were able to meet other self advocates around the country who we wouldnt have otherwise met.

  •   Its been a good atmosphere and very supportive the peer support has been really important during Covid-19.

  •   We have been able to practice and learn facilitation skills.

  •   The co-facilitation has worked well and we have had useful Planning Meetings.

  •   Weve had lots of different discussions and debates.

  •   We have written statements about some of the issues we feel really strongly about, like closing ATUs.

  •   We have had guests come and speak about issues, like the Heidi court case and the Abortion Law.

3

We ran the Oi, Out in Front event online.

  •   It was difficult for everyone to get online at first.

  •   Meeting online and from home is sometimes frustrating it would be good to meet in person at times.

  •   Sometimes we feel we dont have enough time to discuss things properly everyone should have their say.

4

  •   The stronger self advocates can sometimes dominate the discussions.

  •   It would be good to have more capacity to follow up on our ideas and agreements and take more action.

  •   Having an annual meet-upwould be good.

4. Future meetings

Name of the group: Although Covid-19 is still with us, weve been talking about a lot of other things. Because of this weve thought about changing the name of the group. There were 2 suggestions:

1. The Sell AdvocatesSupport and Action Group 2. The Self AdvocatesSupport Network

Meetings from September onwards: We thought about meeting less often (monthly or twice a month) and also having an annual in personmeeting in May.

We had a vote and everyone voted for twice a month.

Members of Together All Are Able asked if we could avoid the first Wednesday of the month.

We agreed to keep meetings on a Wednesday.

5

Guests:

27.07.22: The National Lottery consultant from EPIC,

Harriet, will be coming to talk to talk to us about how the

Leaders with Lived Experience grant has helped us

continue to meet and discuss issues that are important

to us. She will attend 12:30pm 1:30pm.

We will also invite Neil Crowther, James Sanderson, Ian

McCrieth and Alexis Quinn back to the group.

Information share

Together All Are Able have had training to become

trainers for eye care from SightAbility.

Kieran said he has had a conversation with Simone

about getting the Disabled PeoplesDirect Action Group

up and running again.

The sixth annual Learning from lives and deaths

People with a learning disability and autistic people (LeDeR) report has been published by King’s College London 14th July, with an easy read version.

NHS England has also published the fourth annual LeDeR Action from Learning report and easy read version, which describes some of the work being undertaken across the country by the NHS to reduce health inequalities and premature mortality amongst people with a learning disability. There is also

a supporting resources document.

6

Next meeting:

Wednesday 27th July 2022 12:30pm - 2:30pm

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

Please note that we will be breaking for summer after our meeting on 27th July until 13th September.

We will meet twice a month, on the second and fourth Wednesday of the month. Below are the dates.

2022 dates

Wednesday Wednesday

Wednesday Wednesday

Wednesday Wednesday

Wednesday

13th September 2022 27th September 2022

12th October 2022 26th October 2022

9th November 2022 23rd November 2022

14th December 2022

We will then review if we want to continue ? meeting twice a month or reduce to
meeting monthly.

7


Comments

Popular posts from this blog

SURVIVOR HISTORY NEWSLETTER

>From Andrew Roberts Secretary Survivors History Group http://studymore.org.uk/ studymore@studymore.org.uk telephone: 020 8 986 5251 home address: 177 Glenarm Road, London, E5 ONB Survivor History Group Summer 2012 Newsletter The July London meeting of the Survivors History Group will be held on Wednesday 25.7.2012 from 1pm to 5pm at Together, 12 Old Street, London. Everybody is welcome and refreshments will be provided. The September meeting has had to be moved from a Wednesday to Thursday 27.9.2012 (subject to approval by this Wednesday's meeting) because of the availability of a room at Together.   -------------------------------------------------------------------- The agenda for the July meeting will be drawn up at the beginning of the meeting, but it will include Peter Campbell's regular report back on the research he is leading on the history of Survivors Speak Out and discussion of material received from other people about Survivors Speak Out.  Rick Hennelly has se...

The DLA and Workfare Scandals.

This ConDem Coalition is exploiting the apparent helplessness of disabled people by taking essential money away from them and forcing vulnerable people, for example, people with mental health difficulties. I remember, when I was a practising social worker, the horror experienced by service users when they received a letter summoning them to undergo a medical examination (25 miles away in Norwich). Some became absolutely terrified at the prospect and the stress of having to get to and face the appointment led to one or two relapses and hospital admissions. Against local authority policy, I always took them to the appointment, went in with them and supported them through the interview acting as advocate. The doctors at these reviews were employed by the Benefits Agency and usually retired from practice. They were also usually empathic with the service user and mostly helped to reduce the terror of the interview. The new 'Workfare' reviews which every DLA claimant will have to und...

inappropriate!!!

I tried to respond to a Patient Citizen Exchange blog by Laura Greene today. I said: Hello Laura. Welcome - and my admiration? for you "single-handedly representing the entire health voluntary sector and 1000+ PCX membership..." My first question has to be: what is the composition of the Strategic Advisory Board? And my second question: what proportion of service users to professionals is there on that Board? There are indeed millions of impatient citizens out there. They are called Service Users (primarily because 'Patient" carries the labels 'One that has things done to her/him'; 'One that is subservient to the "We know what is best for you" approach'; 'One that is at the wrong end of an imbalance of power.' etc). The Americans prefer the term 'consumers', but whatever, we should avoid the term with the negative connotations. I was listening to the 5 Live debate this morning on the Strictly Come Dancing row about whether...