|We're tweeting our MP - see how easy it is?|
And then I grew up. And I realised how politics impacted every single aspect of our day to day lives. And then I had Hugh and suddenly party policies on disability and benefits became extremely important to me.
I'd not heard of All Party Parliamentary Groups before. Maybe you have, but if not:
All Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups of MPs and Peers interested in a particular issue. Cross party means they have politicians from all the different political groups involved and so they are a great way to make sure everyone in parliament knows about the issues they cover.
APPGs are not funded by parliament and do not have any power to make laws but these groups can act as pressure groups for specific causes helping to keep the government, the opposition and MPs informed of parliamentary, expert and public opinion.
- Because rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Hugh is five now, but he still can't sit, walk, talk or even eat. At this stage it is perhaps unlikely he ever will.
- Because many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. We already know that Hugh's condition is both life limiting and life threatening, which means we, as parents, have to face the fact that our son will probably never live until adulthood.
- Because the vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. All we can do is simply manage the individual symptoms as they arise.
- Because families like ours frequently experience delays in gaining an accurate diagnosis for their or their loved one’s condition, and can struggle to access appropriate care and support. Without a diagnosis support has been much harder to come by, we have had to fight and beg and reach breaking point before Hugh's needs, severe as they are, have been taken seriously. If you're interested, I've written more about the difficulty in accessing support without a diagnosis here.
So please for Hugh, and for all the children like him and families like ours that are affected by rare, undiagnosed and genetic conditions, please contact your MPs and ask them to join the APPG.
And Jess... if you'd like to meet Hugh and I and discuss how being undiagnosed has impacted our lives, we'd be more than happy to.
|I'm not just rare ... I'm one of a kind #Hughnique|
Want to find out more and use a template letter to contact your MP? Click here: SWAN UK APPG Q&A