Examples of advocacy & support
Keith and Rose in Liverpool
When Keith was diagnosed with a mild form of A-T in his late 30s, it was a shock to him and his mother (Rose). They then contacted the A-T Society and were relieved to find the help and support that they needed. Kay arranged an appointment at one of our A-T national centres and put in a referral to Social Services, to make sure they were getting the correct benefits and to look at social opportunities for Keith. (As he was very isolated at home). Kay also sorted a referral to the local council for a Disabled Facilities Grant to extend their home for Keith as he could no longer safely use the stairs and needed a downstairs bedroom and bathroom. Kay has been able to help the family through the red tape and bureaucracy and act as an advocate for Keith.
"My son Keith and I consider ourselves very fortunate to have found the A-T Society. Since being in touch we cannot underestimate the help and support provided by Kay, the Family Support Worker. While we get despondent by officialdom, Kay is calm and encouraging and is always prepared to go the extra mile. For all this support my son and I will always be grateful''.
Elizabeth in Corfu with her son Andreas
Elizabeth lives in Corfu with her son Andreas, she had been told her son possibly had A-T but needed a proper diagnosis. Kay was able to help arrange bloods to be taken and sent to Professor Malcolm Taylor, at Birmingham University, to confirm the diagnosis. Kay also arranged an appointment at the children's clinic, A-T specialist centre, Nottingham.
"I stumbled onto the A-T Society website and gave them a call to find out how I could get further tested and what about the here and now? I was flabbergasted at their level of help, support and understanding! What a relief that there are such people and societies out there when you feel destitute. The A-T Society just make life so much more bearable. Thank you very much A-T Society!"
Child with suspected A-T diagnosis
A family contacted Kay as they were having problems in getting a confirmed diagnosis. They had been told by a consultant that their young daughter probably had A-T and they needed a referral to a paediatrician. However this would take many months and the wait would be unbearable. (They have other children and were desperate for them to also be tested).
They contacted another consultant and bloods were taken to test for A-T, however these were then lost on the way to a hospital. As soon as the family contacted Kay she was able to speak immediately to Professor Malcolm Taylor at Birmingham University to see if he could help. Within three weeks, with Kay and Malcolm's intervention, bloods finally arrived at the Birmingham laboratory. Two weeks later Malcolm was able to contact the family's consultant with a confirmed diagnosis of A-T for their daughter and reassurance that the siblings did not have A-T.
The result was that the family obtained their diagnosis very quickly and although very distressing they had the result they were expecting. Kay was also able to arrange an appointment in the next children's clinic at the A-T specialist centre, Nottingham.
Child diagnosed with classic A-T age 8
This family contacted Kay after finally getting a diagnosis of A-T for their daughter, she was originally diagnosed with Cerebral Palsy, but the family could see she was getting worse and knew there was something else wrong, so kept pushing the consultants to do further tests.
"I was alone when i received the letter confirming our daughter had A-T, my husband was away on business and i couldn't get hold of him, I had no idea what A-T was and went straight onto the Internet. Luckily i found the A-T Society website very easily and phoned them. Kay was fantastic and talked to me for over an hour- without the support of the Society that day I really do not know what i would have done!
When we decided to apply for a special educational needs statement for our daughter, Kay spoke directly to my local authority and supplied them with the vital information they needed, which i am sure contributed to our daughter receiving her full statement and therefore the support she needed at School.
Although devastated by the diagnosis , we have found the support of the Society and the Nottingham Clinic Invaluable"