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Thursday, 8 August 2013

NHS Review, Hip Dysplasia and Carers...

Hi guys, I've been busy again!
This time I went with some of my wee Carer Group to visit our NHS annual review and had a chance to ask questions and raise some points!

Well, not being the shy type and still adjusting to the very late diagnosis of baby Jessica's Hip Dysplasia and also the fact Minister for Public Health Michael Matheson, the Chief Executive and Chairman of Ayrshire and Arran NHS were all there, meant I decided to raise the issue.
I kinda had no choice really, it's important and if the information is not getting to families  who need it something is wrong!

I explained, four babies in every thousand are born with Hip Dysplasia, it's nobody's fault, it just happens but the quicker it's found and treated the better for these babies. I also explained, once Jessica was diagnosed, we went over all the health information the NHS gives to new parents and could not find any information there either! I asked them to take forward this point and include even just a paragragh on Hip Dysplasia symptoms, just what to look for would be good!

It's so important! If this condition is found early, there is seldom the need for surgery at all! The baby wears a brace or harness for a few weeks and in most cases it fixes on it's own but if it's missed, these wee ones need extensive and expensive surgeries, physio and rehab to try and rectify things as has happend with baby Jessie.

I'm pleased NHS Ayrshire and Arran are going to follow this up and I'm so glad I had the chance to speak to those who can address this issue properly and quickly too!

The other point I manged to raise was this one...
We had a crisis and needed emergency admissions seven years ago. Things did not work well and as a Carer and disabled person with complex difficulties we were not listened to at all. Coo's massive seizure activity could not be contained in a ward situation and as his care needs were so complex, it just didn't work and we were left feeling so very unsupported and alone! Last year, we needed another admission and we were both listened to and supported to enable, what turned out to be a positive and supported experience this time around! The changes we found then were heart warming and I wanted to share this positive experience and hope things continue improving too!

All-in-all the NHS review of our area had a lot of positives to share, there are things that need work but it was a positive meeting and I came away with a good feeling about how things are going!

If you get the chance to raise your points and question those who can change things, remember...deep breath and just go for it!
(((hugs)))
Maz x

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