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Capturing experiences and learning from the Covid-19 situation

In 2020, People First was successful in applying for Wave 3 of the London Community Response Fund. This was for six months. The grant money came from Trust for London.

The purpose of the project was to capture experiences and learning from the Covid-19 situation.

We communicated with 10 self-advocacy organisations across London to find out how they were working with their members, and what issues they had experienced during Covid-19.

The main aims of the project were:

  • To ask leaders of self-advocacy organisations how they have been managing over the last 7 months – what has worked well and what hasn’t worked so well
  • To bring leaders of self-advocacy groups together so we can support each other, share ideas and do things together

We then produced a report in February 2021.
You can read a summary of the project report here

Digital Exclusion

As access to services and rights increasingly moved online, marginalised people and their organisations became increasingly excluded. 

HEAR Equality Network worked with their members to connect digitally excluded Londoners to highlight the different barriers to digital inclusion and rights to ‘in real life’ (IRL) alternatives.

HEAR said that "The pandemic has shown how race, disability, poverty, domestic abuse, age, lack of privacy, insecure housing, immigration status and safety online etc., interact to create Digital Exclusion."

In June 2020, People First provided one of the case studies collected to highlight how digital exclusion affects people with learning difficulties.

You can read the full case study here

a calendar showing Year 1 pointing to a calendar showing Year 2 with a Covid virus next to it, representing Long COVID

National Voices: Long COVID project

People First was one of six inequalities-focused organisations who carried out work with different communities at risk of exclusion from Long COVID. 

The National Voices project ran for eight months  (July 2021- March 2022).

The aims of the project were to:

  • Enable a joined up VCSE response to the challenges of Long COVID
  • Provide a voice for those facing exclusion from the health system
  • Influence the work of NHS England and NHS Improvement

We were able to raise awareness about how few people with learning difficulties were diagnosed with Long Covid and the lack of inclusion in existing networks.

We also produced Guidelines for Inclusion for Organisations

Here are some of the things we learnt from our research into Long COVID and people with learning disabilities.

There are two stages to long COVID:

  1. Ongoing symptomatic COVID-19 – symptoms that last 4-12 weeks
  2. Post-COVID-19 syndrome – symptoms that last for more than 12 weeks and can’t be explained by another diagnosis

There was no accessible easy read information for people with learning disabilities about what Long COVID is and its symptoms.

It was very difficult to find people with learning disabilities who knew about Long COVID or had been diagnosed with Long COVID. 

There was no national data about the incidence of Long COVID in people with a learning disability, whether or not the person was admitted to hospital with COVID infection.

Because of the lack of data, there was an assumption from some people we spoke to that people with learning disabilities didn't get Long Covid.

A Public Health England study in 2020, reported that England death rates for people with learning disabilities was up to 6 times higher from coronavirus than the general population.

Many people with learning disabilities admitted to hospital with COVID experienced a level of trauma not least of all because of the threat of DNR notices. 

We called for:

  • Mainstream Long COVID organisations about how they can be more inclusive of people with learning disabilities.
  • Long COVID symptoms to be included in the Annual Health Checks
  • More accessible information about Long COVID
  • More opportunities for people with learning disabilities to have discussions about Long COVID

Download our Final Report

Joint Voices

In January 2021 we joined forces with the family carers group Bringing Us Together to work on a campaign called ‘Joint Voices’.  We co-facilitated six sessions. Our main aims were to:

  • Look at how we work with family carers equally and positively 
  • Plan how we can best campaign on stopping people being admitted to Assessment and Treatment Units and asking the Government why targets are still not being met.

We explored areas of agreement and areas where we had different views and ideas. 

It is a piece of work we would like to revisit in the future and find funding for.

Disability LIB logo

National Voices Project - Dis-Lib

In 2011 the Disability LIB national capacity building project came to an end. This project was funded by the Big Lottery. We worked with over 30 local self-advocacy groups and organisations. This project helped us to continue to support self-advocacy groups and build helpful resources. It also helped us to develop new areas of work such as the `Cuts Impact Action Now` research project, the promotion of our Easy Read services and consultations on policy changes.

People First (Self Advocacy) is registered in England and Wales under charity number 1057354 and company number 03134827 at 336 Brixton Road, London SW9 7AA.
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