At 4.40pm yesterday I stood up in front of Earl Howe, continence industry and room full of Health select committee bods, dropped my skirt to reveal me wearing one of my son Jon's nappies! I delivered my whole speech like that - and had drinks afterwards and beautifully cut cakes and sandwiches! They were a tad gobsmacked there on the terrace pavilion! "Good Lord" said Earl Howe as he sped off to the Lords to do a drugs speech at 5pm.
Coping with a severely autistic, doubly incontinent 14 year old son is the most important thing in the world to me, fighting for nappies, having a supply limited -dignity goes out of the window- not funny - but who cares, this isn't a topic many will engage in, yet it directly affects thousands up and down the country - and there is to be little or no future investment in continence services. We HAVE to change that - and I will do whatever it takes to let people know what I live with.
My speech was hard hitting - but they heard it all before - I doubt they'll forget being told by someone wearing one of the products!
This champagne tea event was the launch of the All Party Parliamentary Group for Continence Care, APPG report "Cost-Effective Commissioning for Continence Care (see photo of me delivering, attached), hosted by Rosie Cooper MP next to me in the picture. The organisers were at an absolute loss to decide what photo to put on the front cover of the document, so they used hands. All the brochure printing in the world won't soup up the mess I have to deal with, there really ought to be a more efficient way of spending a small continence budget, other than brochures when patients are crying out for products - however, I am informed, this is the way it's done!
No-one knows what to do about this subject, the topic is so sensitive yet very important to those affected. It most certainly needs upping on the political agenda - problem is how to get that across.One of the country's top continence professionals who helped on my nappy legal case, despite having an OBE for her work, has lost her post due to cuts.
So many there in that room were behind me (so to speak!!!)
Carers 'on the outside' are at breaking point. The House of Commons Health Select Committee have to ask - what would drive a mum to do this? The story of my jaunt to London is going into my local paper tomorrow with this pic.
Alli Edwards is with www.cryshame.org and a tireless advocate for her son. You might recall this post she wrote titled, The Unvarnished Truth About Autism."