The ALLIANCE Lived Experience Partnerships 2021 review

Contributors continued to innovate and develop health and social care through lived experience.

Over the course of 2021, the ALLIANCE were grateful for the contributions of many people with lived experience and partnerships, that helped us to strive for innovation and service development across health and social care. Please find some examples of this work below.

Mesh

Following the delivery of engagement sessions in December 2020 and January 2021 and an online survey, we published our second report on women’s experiences of living with complications from transvaginal mesh. My Path, My Health, My Life features recommendations from women about their desired patient pathway for mesh removal surgery and what the new National Mesh Removal Service at NHS GCC should look like.

 Following the announcement of the proposed Transvaginal Mesh Removal (Cost Reimbursement) (Scotland) Bill (this link will take you away from our website) that would refund women who had undergone private mesh removal surgery, we held two focus groups in July and in October. All women who attended had paid for private mesh removal and provided key insights into what they felt a reimbursement scheme should look like. On both occasions women’s feedback was shared with the Scottish Government to influence the development of the Bill.

As a result of the above work, we were approached by the Scottish Parliament’s Health, Social Care and Sport Committee to support the women we engaged with to submit evidence to the Committee as they scrutinised the Bill. We supported six women to do so at a private session in October.

Chronic Pain

Throughout 2021, we continued meetings of our Chronic Pain Reference group, and held capacity building and support sessions for members who represent the group on the Scottish Government’s National Advisory Committee on Chronic Pain.

In September, we launched a national survey on chronic pain, in partnership with the Scottish Government. We published the results in November within the My Path, My Life, My Right to Live Well report. The report brings together an analysis of people’s views of living with chronic pain and what they look for in services.  We are grateful to the University of the West of Scotland for their work in supporting analysis of the data.

Women’s Health Plan

Following our extensive engagement with women in a number of focus groups early in 2021, the Scottish Government’s Women’s Health Plan (this link will take you away from our website)  was published, which noted the work of the ALLIANCE in bringing the voice of lived experience.

As a result of our continued work to involve lived experience within the implementation of the Women’s Health Plan, we were approached by the Scottish Government to host a Menopause Mythbusting Q&A in December. This session was the first of three, which bring together professional and lived experience experts on menopause to respond to questions and concerns from the audience.

Director Irene Oldfather also recorded an ALLIANCE Live with Minister Maree Todd (this link will take you away from our website)  to highlight the role of the Women’s Health Plan in supporting women’s access to information and services and to destigmatise and demystify women’s health and bodies.

Medicines

In December, the ALLIANCE published a Patient Leaflet for Opioid Prescribing for Chronic Pain. The ALLIANCE worked closely with the Scottish Government to develop the patient friendly leaflet which complements a full clinical guide. The leaflet was coproduced through working in partnership with people with experience of chronic pain in an engagement session in the summer.

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