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Health inequalities: Learning disabilities webinar

A summary of what was discussed at our first health inequalities webinar series focussed on how COVID-19 has impacted people with learning disabilities.

On 30 November we held the first in a series of webinars focussed on health inequalities and the impact of COVID-19. This session looked at how people with learning disabilities have been, and continue to be, impacted by the virus.

The event was chaired by Cllr Louise Gittins, leader of Cheshire West and Chester Council, who opened the session by highlighting how for people with a learning disability, the last 18 months saw a traumatic loss of routine, activities and contact with family and carers that was hard to understand and to cope with.

A system wide approach is clearly needed to properly address the severity of health inequalities that people face.

Cllr Louise Gittins

We then heard from Vanessa Cowley, a campaigner and self-advocate from Kent who works closely with East Kent Mencap and sits on Mencap’s Treat Me Well steering group. She told attendees about the tragic loss of her husband to COVID-19 last year and the lack of support she felt she had from government. She called for the Government's inquiry into COVID-19 to investigate why people with learning disabilities’ death rate was higher than the general population.

If people listen to us, there would be more survival rates. We are the ones who live with the conditions.

Vanessa Cowley

Professor Christopher Hatton from Manchester Metropolitan University presented the findings from the UK Research and Innovation (Medical Research Council) COVID-19 project which he had worked on. The project’s findings were based on approximately 500 interviews with adults with learning disabilities and 300 online survey responses from family carers and support workers. The group summarised the responses into six key findings:

1. People are doing their best to keep themselves and others safe – through vaccines and testing and following the rules

• More than 9 out of 10 people have had both doses of the COVID-19 vaccine.

2. People are paying a price for this

• Half of people are worried about leaving the house.

3. Support has not gone back to normal for health and social services

• Of those waiting for a planned medical procedure, at least 4 out of 10 people had been waiting more than 6 months.

• For around 4 out of 10 people, the person or their family are paying for some services out of their own pockets.

4. Lifting of restrictions generally means a more restricted life for some people

• For at least a quarter of people in both cohorts it was not felt to be safe enough for them to go to all the places they used to.

5. The impact of COVID-19 continuing

•Less than 1 in 10 people said their life had gone back to normal

• More than 8 out of 10 people with support staff wanted all their support staff to be COVID-19 vaccinated.

6. For some people, there have been some good things

• Getting online and connecting with people has increased.

Christopher concluded by asking what happens to people still shielding and staying inside and said that many families feel they have been forgotten about and abandoned throughout the pandemic.

They don’t see any way forward. How are services going to re-build trust?

Christopher Hatton

Dan Scorer, Head of Policy and Public Affairs for Mencap highlighted issues that had came up for people with learning disabilities during the pandemic:

  • Closure of key services, such as short breaks and Day Centres
  • Flexibility in use of personal budgets
  • Sustainability of support within the family home as staff went off sick
  • Additional unsupported pressures faced by family members caring 24/7.

He presented on the challenges which remained as we continue to navigate the legacy of COVID-19 and beyond, including the standoff between government and GPs over face to face appointments.

The future independent inquiry into the handling of the pandemic must assess why people with disability died at such a higher rate than the general population.

Dan Scorer

Our last speaker, James Bullion, Executive Director of Adult Social Services at Norfolk County Council, focussed on the work of Association of Directors of Adult Social Services (ADASS). James outlined ADASS’s priorities for the next three years:

  1. Sustainable care markets
  2. Sustainable personalised health and care systems
  3. Social justice and inclusion

He also outlined the ADASS/LGA joint vision:

Supporting and valuing adults with a learning disability and/or autism, and their families/carers, to live safe, well and fulfilled lives in communities.

Attendees were then able to pose questions to the panel. Cllr Gittins kicked off the discussion by asking each of our panellists what one thing councils could do to reduce health inequalities for people with learning disabilities:

  • Vanessa: Listen to people a lot more and understand the situations that learning disabled people are really in and get to know a family, a lot, lot better.’

  • Dan: ‘I would ask that local authorities get behind the training on learning disability and autism which we have been part of with Health Education England and will be launched at next year or early 2023.’

  • Christopher: ‘I would say really effective ramping up of supported employment. We have a large group of people who are wanting to work that I think will be a really cost effective way to improve all sorts of things.'

  • James:Link every single care decision to housing, in doing that give people a housing option with housing rights.’

Discussion which followed covered topics including how we build on the tremendous community spirit that the pandemic generated and how to encourage people with learning disabilities to access specialist dentists.