ALLIANCE and Self Management Network Scotland member Caroline Brocklehurst describes her journey since accessing peer support.

Living with incurable disease can sometimes feel like being in a ‘club’ that you never intended to join. However, there is huge strength to be drawn from connections with those with shared experiences in bolstering our resilience and recovery. The connections, hope, identity, and shared learning gained is a crucial but sadly often undervalued piece of the health strategy jigsaw.

We’re fifteen years into the Gaun Yersel strategy in Scotland with the objective to empower individuals living with long term health conditions to progress in their health and life outcomes. But ‘Gaun Yersel’ does not mean ‘go it alone’ and peer support provides a wealth of opportunity. If that opportunity is not meaningfully recognised, embraced and invested in, we’ll miss an invaluable chance to make an effective and sustainable difference in Scotland’s health.

In 2009 I was diagnosed with Crohn’s disease, which is an incurable inflammatory bowel disease and then in 2019 with a correlating incurable spinal disease called ankylosing spondylitis. Like many living with long term conditions, my diseases and the associated conditions, symptoms and treatments have over the years impacted my: health, career, finances, relationships, mental wellbeing, and my family.

Even with clinical and loved ones’ support, living with diseases such as mine has often been a bumpy and lonely journey.

Since accessing peer support in recent years, delivered via a variety of approaches and sources, I’ve tapped into multiple direct benefits, improving my health and life outcomes:

  • My clinic appointments have been more effective with better awareness of the best questions to ask and through learning via peer experiences, better understanding of the support and pathways open to me.
  • I’ve much greater understanding of my conditions – the potential areas of risk, prevention, early intervention and risk management.
  • I’m more aware of and better able to benefit from sources of support and relevant practical self management tools, highlighted via real life experience.
  • I feel so much less alone and more supported through the trust and understanding of peers who ‘just get it’.

Peer support is a complement to, not a substitute for, clinical services or friends and family support. Peer conversations are interactions not interventions and are often less loaded in judgement or expectation, providing safeguarded opportunities to open up about living with conditions and giving space and opportunities to explore your own and others’ shared experiences, knowledge, resources and resiliency.

I’m now developing further my peer leadership skills and experience, to work towards enhancing the quality and accessibility of peer support opportunities in several areas. My peer facilitator roles inform and improve my roles in patient representation in a variety of health projects, improving research and health strategy. Last year I benefitted from the support of the Scottish Recovery Network as a participant in the ‘Making Peer Practical’ best practice peer project development programme, and I’ve now been selected as a peer leader in the leadership development programme, ‘Peer Wave of Change’. I’m excited to ensure that peer support strategies in long term health conditions and Scotland’s Women’s Health Plan, are brought to fruitful benefits.

It is a mistake for any health decision makers to view peer support with tokenism as a ‘nice to have’, not strategically core in health strategies. Or to think that effective peer support ‘just happens’ without investment. To reap the benefits, peer support needs genuine recognition, respect, skills and resources. In order to bring about the intentions of Gaun Yersel in a meaningful way, peer support projects and practitioners are a crucial jigsaw piece of the bigger picture to deliver improvements in health for Scotland.

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