London Calling

[catherinem]

Its three days into my challenge of writing a blog post each day for a month to mark Tourette’s syndrome Awareness Month in the USA. But today, I’m asking for some help from UK ticcers and parents/carers of kids with TS. As you may well be aware Cameron has put a temporary halt to his plans to reform the NHS and as part of those plans Cameron and some of the other politicians involved in these plans have been up and down the UK listening to the opinions of healthcare professionals. But what about the patient groups? Well, I’m off to London on Thursday to attend a meeting for patients/service users to voice their opinions on these reforms – this is where you guys come into it, we all know that quite often GP’s knowledge of TS can be a bit patchy and as part of the coalition’s plans GPs will be in charge of the lion’s share of the NHS budget and will be making the decisions about how that money will be spent on you or your child’s care. What I would like to know about is what have your experiences with your GP been like? Where they helpful? Did they refer you to a good TS specialist? What is their knowledge of TS like? I would like some examples of both good GP experiences, and some bad to use as evidence to support my argument on Thursday.

I look forward to hearing your stories, please message me or comment in the box below.

Catherine x

[catj]

Our gp was great, referred Owen to our local camhs centre where he had three appointments 6 months between each one and then they signed him off as they didn't know how to help him and it was obvious to them his ocd was worse than his ts as he didn't tic alot in the 15 minute we were there.

He was referred to a family unit psychlogists, social workers, art therapists etc but the only letter we received said was as we hadn't responded they were taking him off the list, not sure what we were supposed to respond to as never had any info on the place, so we are now alone.

cat x

[anne269 in reply to catj]

sorry to here your story you must keep persisting and contact the calms team again. Explain your situation my sons ocd was worse than his tics at one point but have got better. you know your child better than anyone. dont give up

[anne269]

Hi there i took my child to the GP and explained my concerns about my childs noises and behaviors. I had my son with me but had left him in the waiting area i then asked my son to come in and speak with the doctor in return he asked him a few questions and told me he looked like a perfectly normal 8 year old.

and that was that. I then had to ask the school to get a psychlogists in after one year of meetings and alot of disagrements he agread to refer me to the calms team i waited two years for an appointment and at the first one the therapest told me he suspected my son had ts and ocd. My son was diagnosed one month before his 11th birthday

anne

[catherinem]

Thanks Anne, but I've already been to London, I spoke to Andrew Lansley last Thursday with regards to the NHS reforms and in particular GP's lack of knowledge of TS, read my blog post "Tuck your shirt in".

[anne269]

hi catherinem didnt look at the date sorry just getting the hang of this new to it