Developments in support for people with Long Covid since we heard from local people

We caught up with those working in health and care to develop support for Long Covid to find out how things have changed or improved.

What we did

Last year local people shared their experiences with us about Long Covid. To read more about what they told us and what we found out, you can view more here

We then shared our findings with the Merton and Wandsworth Post Covid Integrated Steering Group (M&WISG) who were looking to organise how services can support people with Long Covid. We shared and discussed our findings with other Healthwatch in South West London to formulate the common themes we were finding across the area so that South West London CCG can also plan services across the area. We also presented findings to people working in the NHS and local authorities across London at a summit and regular London focused meetings. In June 2022 we asked what these groups had been doing to improve and develop services which addressed the topics raised by the experiences of Long Covid highlighted in our report.

Key Changes

• Further research and awareness raising workshops, particularly with people who do not identify as White British.
M&WISG have continued to collect patient stories.

M&WISG are considering developing Long Covid information for people from 'Black, Asian and Minority Ethnic' communities.

M&WISG are working on further ways to reach communities, especially those who do not identify as White-British.

Wandsworth Public Health are conducting an equity audit to ensure services are accessible and understand the impact of Long Covid.

• Peer led support groups

M&WISG discussed the possibility of peer support. There had been an example of this approach in Tower Hamlets, which used non medical workshops, self-management techniques and advice.

• Developing information/raising awareness
M&WISG have developed a flyer and are hoping to post these to key locations.

M&WISG will ensure that information is circulated to GP surgeries and the public.

Wandsworth Public Health will support ongoing development of a directory of services.

Wandsworth Public Health will liaise with Primary Care Networks of GPs and other networks of GPs to promote services available.

Wandsworth Public Health will support and encourage links with voluntary sector groups to knowledge about Long Covid.

• Mental health/wellbeing signposting and tailored support

Those who attend the The Post Covid Assessment Service (PCAS) are supported with psychological support. The M&WISG and PCAS have been working with local and national talking therapy services.

M&WISG discussed developing skills for staff working with Long Covid patients and the need to use a leaflet similar to that for long term conditions. There is a website about mental health support available.

• Widenning support available so that it is more holistic e.g. employer support and financial support.

Wandsworth Public Health will enhance social prescribing, which offers non-medical support for people, such as help with returning to work or benefits.

• Integrated and co-ordinated support, screening and referrals, in the community, Including support without diagnosis.

The PCAS in Wandsworth does not need people to have had a Covid or Long Covid diagnosis to access the service.

The numbers of people who are referred to access the service has rapidly increased and manuals for clinical staff have been provided to help them support people with Long Covid. 

Wandsworth Public Health are working with the organisation providing the PCAS service (CLCH) to review referral, discharge and demographic data. They are considering referrals from routes other than GPs or hospitals.

• Broader services supporting those who are not acute or supporting with only select symptoms need to be aware of Long Covid and its impact on people’s lives. This includes support with daily living, either through social care or raise awareness of other support needed if not eligible e.g. carer support.

A new South West London Long Term Conditions group will be including Long Covid in their work.

• Diagnosis procedure/criteria should not depend on Covid-19 diagnosis.

 

Findings from the Healthwatch reports are shaping our thinking
— Mike Procter, Director of Transformation, Wandsworth and Merton, SWL CCG (NHS)
Public Health have used the insight from the Healthwatch Wandsworth report when analysing services
— Sarah Rushton, Lead Transformation Manager – Long Term Conditions and Carers, Merton & Wandsworth, SWL CCG (NHS)

Informing National Developments

Healthwatch England used our report as part of their evidence review on Long Covid. They used this information in a number of ways.

  • To confirm that the themes we found in our wider data  and use any key statistics to back up their conclusions, including quotes that illustrated specific findings about dismissive GPs and issues with referrals and statistics from our report that illustrate the holistic impact of Long Covid.
  • Everything Healthwatch Wandsworth sent over informed the thinking behind the Healthwatch England national report and the final conclusions.
  • Healthwatch England shared the report with colleagues at NHS England (who requested the evidence review) in order to inform the development of their new Long Covid plan. The report was also shared with National Voices and the European Commission of Human Rights.
  • The work on Long Covid has had a great impact in conversations with policy makers about findings and suggestions for where they should focus their efforts to improve ongoing care for Long Covid.
  • Healthwatch England have had a number of publications based on this work:

    Two advice pieces off the back of this work, to reduce confusion about the symptoms of Long Covid and signpost to support.

     https://www.healthwatch.co.uk/advice-and-information/2022-05-23/support-and-treatment-long-covid

     https://www.healthwatch.co.uk/advice-and-information/2022-05-23/what-long-covid

     Based on the research we made a number of recommendations which were published in the HSJ (although you need a membership to read this): 

     https://www.hsj.co.uk/patient-safety/to-tackle-long-covid-enhance-support-to-gps/7032538.article

Without the research, quotes and statistics shared by local Healthwatch, including Healthwatch Wandsworth, we would not have had such a robust sample from which to draw our conclusions or share the findings with as many people as we did. It’s a strong piece of work and we wouldn’t have been able to put it together without the input of Healthwatch Wandworth'
— Lily Groom, member of the research team, Healthwatch England

What's next?

We will continue to find out about how the voice of people who experience Long Covid can shape the support available for Long Covid.

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