Introducing SWAN UK Parent Rep for the West Midlands

Hello, I’m Kat and I live in Walsall in the West Midlands with my husband Chris and our two children Holly-Star who is seven and our swan Eliza who is five.

Eliza has a large list of difficulties and complex needs that seem to increase each year. Most prominently she has severe learning difficulties and requires constant care and supervision. Despite this she is a resilient (and stubborn) cheeky girl with a beautiful smile and giggle to boot.

SWAN UK has been a lifeline for our family. We have finally found somewhere that fitted our complex non-diagnosis and knowing we weren’t the only family in the UK who faced this rather daunting future was a huge comfort to us.

I’ve been a member of SWAN UK for around three years and am now Parent Rep for the West Midlands! I was fortunate enough to be a Rep in the Pilot Scheme run by SWAN UK but sadly due to personal health reasons back then I couldn’t continue with the role. I am now keen to spread the word about SWAN UK to help bring some comfort to isolated families by bringing them together in a mutually supportive, understanding and comforting local community. Hopefully by achieving this we can tackle isolation and not only offer support, but give relevant information to families. I also want to spread the word about SWAN UK within the medical sector with professionals such as paediatricians.

When we found out Eliza was a swan (before we knew about SWAN UK) the isolation, confusion and grief was incredibly difficult to bear. Finding local support groups exclusive to certain diagnoses was hard, as although welcomed, we never ‘fitted’ and talking to other carers about our experiences often left us bewildered as they did not experience the same as us. Also, due to major council cuts in our local area I am almost certain this will increase problems for affected families as services, especially within social care, are being ceased. As a result of this, sadly, those without a diagnosis are more often under fire because they are not able to “prove” their child’s difficulties and what little support or services are offered locally aren’t put out to these families.

I want to help affected families that have not yet discovered SWAN UK and show them they are not alone.

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