Spreading The Word #RareNotFabricated

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You will remember from my earlier blog here that I have recently become SWAN UK’s first Volunteer Parent Rep for Wales, covering the Cardiff and surrounding areas.

Well, in October I spoke at the Third Annual Rare Disease Patient Network Meeting, based in Cardiff. The day involved a range of talks from guest speakers ranging from genetic testing, data sharing, the connection between mental health and living with a rare disease, policy changes and both parent and patient experiences. The event went really well, a good mixture of professionals, patients and parents.

I wanted to talk at this event because I feel very passionate about ensuring that not having a diagnosis should not prevent accessing information and support services! I actually found the experience of talking easier than I expected. I purposely didn’t dwell too much on the early years as they were quite difficult times. Instead I focused more on being a good advocate for your child’s needs and how being a part of SWAN UK can be a really good support network when you don’t feel that you ‘fit’ anywhere else. I found it really rewarding to hear such wonderful feedback during the break, and to chat to some new parents who are keen to join our SWAN UK Wales network!

I hope from my talk that the professionals can take on board the anxieties some parents may have, and also include parents fully in all decision making processes to ensure that the correct needs of the child are met and that the relevant support services are put in place. I cannot wait to engage in more public speaking on behalf of SWAN UK! I want to do more talks like this in my role as Parent Rep as it’s really important that professionals work closely with parents (who are often the experts on their child’s needs!) to best support not only the SWAN child, but the family as a whole too.

Without a diagnosis it can be challenging to access the support and information you need. Many families don’t feel that they fit into the wider networks for parents of disabled children, and therefore end up feeling more isolated.

I am really looking forward to developing the undiagnosed network in Cardiff; it’s been a long time coming! I can’t thank SWAN UK enough for the support they offered my family in those early years, where as a parent I felt ignored, belittled and isolated at times.

I’m keen to ensure that SWAN UK families have a voice, and that a label should never restrict access to support services and now I have officially been named as Parent Rep for Wales, it is full steam ahead!

 

To find out more about SWAN UK follow their website https://www.undiagnosed.org.uk/

 Amy Griffiths, Well Being Freedom Services Ltd ©

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