The COVID-19 pandemic had had a profound and disproportionate impact on third sector health and social care organisations, disabled people, people living with long term conditions, unpaid carers, and other marginalised groups.

Since March 2020, the ALLIANCE has engaged with members and partners to understand the impact that the pandemic has had on their lives. We regularly respond to consultation responses, submit briefings, and engage with the Scottish Government and Scottish Parliament to ensure that the voices of lived experience are included in decision making.

Recovery from COVID-19 presents an opportunity to learn from the issues and challenges that have been illuminated in the health and social care sector. The ALLIANCE is working to use that learning to positively influence policy and practice moving forward.

To find out more about our work on COVID-19 and Long Covid, contact Rob Gowans, Policy and Public Affairs Manager at rob.gowans@alliance-scotland.org.uk

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In February 2023, the ALLIANCE published a commissioned research report, authored by branch social research, titled ‘The Opportunity is Now’.

The research combines an overarching literature review and analysis of eleven elite interviews across four selected case study areas:

• What next for human rights policy and health and social care in Scotland?
• Learning from the ‘pandemic experience’
• Human rights in healthcare education
• Reflection and aspirations for Scotland’s National Action Plan for Human Rights

It aims to capture some of the issues, barriers, aspirations, innovations and experiences of the health and social care sector in Scotland.

The report seeks to begin to unpack the questions and emerging issues which surround health, social care and human rights – what the sector has been through, where it is now, and where it is going.

Read the full report.

Watch a short video of the third case study on human rights in healthcare education via our YouTube channel.

Listen to an ALLIANCE Live podcast discussing the report findings and its recommendations.

Read our ‘Opportunity is Now’ opinion pieces.

Read a follow-up report analysing a 30 minute live research session with participants who attended the launch event of ‘The Opportunity is Now‘.

Any questions?

If you have any questions you can contact Lucy Mulvagh, Director of Policy, Research and Impact at lucy.mulvagh@alliance-scotland.org.uk

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In June 2022, the ALLIANCE and CHSS published a new research project, carried out by Dr Emma Miller, into people’s experiences accessing social support for Long Covid in Scotland.

The project aimed to build understanding of the life circumstances of people with Long Covid in Scotland, as well as their experiences of accessing social support.

In January 2022, the ALLIANCE and CHSS published a call for participants to participate in the research. The research draws on the experiences of 32 people, shared through 22 individual interviews and three focus groups. Each participant has been given a pseudonym in the report, and easily identifiable details removed.

The completed report makes recommendations for development of support based on people’s lived experience, and is available here.

Any questions

If you have any questions you can contact Rob Gowans, Policy and Public Affairs Manager at rob.gowans@alliance-scotland.org.uk or Gillian McElroy, Senior Policy Officer at gillian.mcelroy@alliance-scotland.org.uk.

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My Path, My Life, My Right to Live Well brings together an analysis of the views of people living with chronic pain across Scotland.

Chronic pain is considered to refer to pain persisting for more than 12 weeks despite medication or treatment. It often occurs alongside, or as part of long term conditions, such as arthritis and fibromyalgia.

In 2021, the Scottish Government asked the ALLIANCE to conduct a survey that would be used to inform their ongoing work on chronic pain policy, including the national consultation on the draft Framework for Chronic Pain Service Delivery.

Over a three week period ending on 17 September 2021, the ALLIANCE heard about the experiences of 462 people via an online survey. This report captures what we heard from those who responded.

Read the full report.

Any questions?

If you have any questions, you can email chronicpain@alliance-scotland.org.uk

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Self-directed Support is Scotland’s approach to social care. Self-directed Support enables disabled people, people living with long term conditions, and unpaid carers to manage and choose the support they require. By having choice and control of their own support, people can be empowered to live in a way that suits them.

We aim to increase the access to and availability of Self-directed Support, underpinned by the human rights principles of equality, non-discrimination, participation, and inclusion. We believe that where Self-directed Support is fully implemented, disabled people, people living with long term conditions, and unpaid carers can live more independently and determine their own future.

The ALLIANCE works to monitor and develop the implementation of Self-directed Support, and particularly people’s experiences accessing social care. Our work includes a range of reports from My Support My Choice: People’s Experiences of Self-directed Support and Social Care in Scotland, contributions to the Independent Review of Adult Social Care, and involvement with the National Care Service.

If you have any questions about this programme, or want to discuss future work in this area, please email Rob Gowans at rob.gowans@alliance-scotland.org.uk .

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Between 30 September and 11 November 2020 we delivered a range of national conversation style events to capture insight from organisations and people who access social care services, to help shape and inform the  Independent Review of Adult Social Care in Scotland.

For each of our engagement sessions we produced a short synopsis of the meeting and the key points raised.

Themed Events and Reports 

1. Carers/ Unpaid Carers
2. Learning Disabilities
3. Mental Health
4. Lived Experience- Learning Disability
5. Neurological Conditions
6. Sensory Impairment
7.  Transitions
8. Scottish Dementia Working Group
9. Ageing and Frailty
10. Housing
11. Lived Experience- Mental Health
12. Seldom Heard Voices
13. National Dementia Carers Action Network
14.  Open Call Engagement Event

The Review report (this link will take you away from our website) was published on Wed 03 February 2021. The ALLIANCE hosted a post launch engagement event with Derek Feeley on Thursday 04 February 2021- the discussions, feedback and questions raised during this engagement event are covered within our Post Launch Engagement Session Report.

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The ALLIANCE has completed engagement work with members and people across Scotland to inform the Advisory Panel of the Independent Review of Adult Social Care.

From 30 Sept – 11 November 2020 we captured insight from partners, organisations and people who access social care services, using this person centred focus to help shape and inform the independent review.

The ALLIANCE designed the People at the Centre (Social Care Review) Engagement Programme, which:

• Listened to the voices of people and organisations across Scotland on the needs, rights and preferences of people who use services, their families and their carers.
• Designed and delivered an inclusive and diverse programme of engagement and communication activity that ensured people were supported to participate and their voices were heard.
• Captured learning and feedback on current experiences from people, unpaid carers and third sector organisations – particularly focused around identified care groups.

We delivered this programme of activity in three ways:

1. We delivered a series of digital engagement events with groups of organisations representing the interests of people who receive, or commission for themselves, social care and support. 
2. There was an ‘open call’ and online survey (which is now closed) for individuals, families and carers to comment on their experiences of accessing social care and support and what they would like to change or improve. 
3. There was a facilitation pack for organisations to use for local or targeted events during the consultation period to access the views of individuals, clients, service users and carers.

The ALLIANCE submitted its Independent Review of Adult Social Care in Scotland Engagement Report to the Social Care Advisory Panel, sharing the views and learning of individuals and organisations across Scotland.

Derek Feeley, with the support of the Advisory Panel published the Review report on Wednesday 03 February 2021. To read the Review report, visit the Scottish Government website (this link will take you away from our website).

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The ALLIANCE reflects the voices of our members in a number of ways. We:

• organise lived experience engagement processes, including through surveys and events,
• feed into public consultations from the Scottish Government and other relevant bodies,
• respond to short-notice stakeholder engagement queries or consultations,
• collaborate with other organisations on areas of shared interest,
• and produce reports on topical issues relating to health and social care.

Our work covers a wide range of policy areas including primary care, self-directed support, human rights, the proposed National Care Service, mental health, social security, and the cost of living crisis. You can find our more about our policy activity via the links within this section.

The policy team includes:

• Allan Faulds
• Billi Allen-Mandeville
• Lucy Mulvagh
• Rob Gowans

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Established in 2021, the Action Group for Advancing Human Rights in Health and Social Care is a multi-stakeholder forum, comprised of rights holders, duty bearers and civil society organisations from across the Scottish health and social care landscape. The group includes members from the third sector, the public sector, academia, and people with lived experience.

Purpose

The aim of the Action Group for Advancing Human Rights in Health and Social Care is to bring together rights holders and duty bearers to give focus to human rights development in health and social care.

The Action Group for Advancing Human Rights in Health and Social Care will:

• share information and best practice on human rights in health and social care
• raise awareness and advocate for human rights based approaches to be understood and made real
• promote and develop new human rights initiatives.

Background

The founding members of this group were members of the Health and Social Care Action Group formed under Scotland’s first National Action Plan (SNAP1). Members expressed an interest to transform into an equalities and human rights group, focused on health and social care.

Contacts

For more information about the group, please contact:

Lucy Mulvagh, Director of Policy, Research and Impact at lucy.mulvagh@alliance-scotland.org.uk

Allan Faulds, Senior Policy Officer at allan.faulds@alliance.scotland.org.uk

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