A new lived experience network will be supported by the ALLIANCE to influence changes in Long Covid care in Scotland.

The ALLIANCE, in partnership with Asthma + Lung UK and Chest Heart & Stroke Scotland, has established a network for people affected by Long Covid to gain views from a wide range of people to inform service delivery in Scotland.

The network forms part of the Scottish Government’s Long Term Effects of COVID-19 Strategic Framework and is directly feeding into the Clinical/Subject Matter Expert Group, the Service Planning Group and the Steering Group within the Framework.

The network, supported by the ALLIANCE, will bring together people affected by Long Covid to inform the design, development and implementation of Long Covid services at local and national level across Scotland.

The network launched a survey in September 2022 to collect information about individual’s experiences of Long Covid in Scotland, and what their priorities for service design and provision in Scotland.

You can read the insight report produced from the information shared within the survey here.

If you would like further information about the network, or have any questions, please get in touch at longcovid@alliance-scotland.org.uk or phone 0141 404 0231 and ask for Olivia Friend-Spencer.

To join the network, complete the below network joining form and if you are comfortable to do so, the equality monitoring form and email them to longcovid@alliance-scotland.org.uk

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The Academy, Self Management and Scotland Reducing Gambling Harm Programme are working together to explore the topic of stigma.

The ALLIANCE’s Health and Social Care Academy, Self Management Team and the Scotland Reducing Gambling Harm Programme have all encountered the topic of stigma within their various workstreams. Organisations and people with lived experience have told us that stigma can act as a barrier to people accessing the treatment and support they need, as well as making people feel isolated in their experiences and exacerbating already difficult experiences and circumstances.

Across these programmes, stigma has been raised in relation to a huge variety of areas such as mental health, weight, poverty, gambling harm, addiction, homelessness, suicide and physical health conditions.

Recognising the prevalence of stigma across our areas of work, these programmes have linked together to explore this topic in greater detail, including people’s experiences, key learning, current work being done to tackle stigma and practical tools, tips and resources for this.

The ‘Reducing Stigma, Emphasising Humanity’ involved a series of three events to bring together policy, practice and people with lived experience to explore the societal barriers people face because of stigma. Events have focused on key themes including the links between stigma and trauma, poverty and anti-stigma campaigns through the lens of lived experience.

As part of this series several emerging themes have been identified, these include the following:

  • Media, campaigns and public discourse
  • Lived Experience and Co-production in tackling stigma
  • Stigma on an interpersonal level
  • Challenging the culture of stigma

 Key speakers from past events have included representatives from See Me, Scottish Women’s Convention, Poverty Alliance and people with lived experience.

As part of the ALLIANCE Digital Gathering 2022, the third and most recent Reducing Stigma, Emphasising Humanity session focused on exploring anti-stigma campaigns through the lens of lived experience. The session was chaired by Nick Jedrzejewski from See Me who acknowledged that to run a successful campaign, it is crucial that the message is owned by people with lived experience, and that the message looks past people’s diagnoses and sees them as people.

The session also included lived experience speakers Dawn Getliffe and Ly Kerr who shared their own experiences and areas of work they take part in to help reduce stigma. Dawn, who is a volunteer with See Me, shared her project ‘Pass the Parcel’ (this link will take you away from our website) this link will take you away from The Alliance website which aimed to get people talking about their mental health in response to COVID-19. This project resonated with many delegates who attended the session, and many have been thinking about how they can use Pass the Parcel across many different areas of work to help tackle stigma.

Ly shared some of her experiences over the years of experiencing prejudice from healthcare professionals who refused to take her seriously due to her weight. To hear more about Ly’s experiences, please read her ALLIANCE opinion piece.

In addition to the events, individuals also told their experiences through opinion pieces, with the aim to raise awareness and initiate actions on how stigmatisation could and should be tackled. Find these writings below.

The stigma team will be publishing a report in the coming months which will summarise the work of the reducing stigma, emphasising humanity series, and outline calls to action to take forward in the future. More details to follow!

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Introduction to the National Collaborative's Change Team are their role in this work.

The Change Team are a group of people who have been recruited to co-design an Action Plan for the National Collaborative.

This Action Plan will include a Charter of Rights for people affected by problem substance use, as well as an Implementation Framework, and Monitoring and Evaluation Framework.

It consists of 15 people, including people affected by substance use (rights holders), duty bearers and rights defenders.


Ariane Beaver

Jed Brady

Biba Brand

Kimberley Byron

Margaret Halbert

Thomas Hobbs

Allan Houston

Ailsa McCrae

Susan McGregor

Claire Muirhead

Kevin Neary

Louise Stewart

Jason Wallace

Derek Watt

Claire Longmuir

The Change Team meet every 4 – 6 weeks. Minutes from Change Team meetings are available at the bottom of the page.

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Join, share and learn with others in Scotland working to raise the profile and improve understanding of self management.

Ensuring that the seldom heard voices of lived experience are utilised to shape and inform the development and delivery of Digital Health.

Engagement in Europe

Discover our range of programmes that involve and promote people with lived experience.

Find out about our lived experience networks that bring together people from a range of backgrounds and communities for a shared purpose.

The ALLIANCE is looking for people to share their experiences to improve future Audiology services provided across Scotland.

If you would prefer to share your experiences by email or letter please do so. We realise that this may be preferrable to completing a survey or joining a focus group. You can do this by emailing engagement@alliance-scotland.org.uk or by post to:

Audiology Review Engagement,
The Health and Social Care Alliance,
Venlaw Building,
349 Bath Street,
G2 4AA

If you would like to share your experiences in any other way, please get in touch.