Just a short one today you’ll be glad to hear as I have an early start tomorrow as I’ll be out and about raising awareness of Tourette’s syndrome and much needed funds for our local support group in the West Midlands and the fantastic folk who (wo)man the helpline in the TA office.
I’ll start by telling you this is a kind of continuation of yesterday’s blog post; I’m back the theme of the good old NHS. We love yah NHS!!! Did I tell you that? This time I need a bit of interaction from your good selves. The Neurological Alliance are collecting some info about people with a whole range of neurological conditions and how the healthcare services we receive can be improved. In order for us – yes that includes me as in my role of voluntary policy officer am a member of the “policy group” which is a team of individuals from a range of charities that represent people with other neurological conditions. As well as raising general public awareness of neurological conditions our aim is to improve the healthcare we receive and in order to do that we need information from YOU about what you experiences are. So please take a few minutes to complete this survey so the experiences of us ticcers (old and young) can be taken into account.
I wish I could be as positive regarding TA's wonderful work as other people seem to be. My experience of them is they gave no help during a work situation over a year ago when I was discriminated against. Suzanne Dobson said she would contact me by phone beginning of March regarding another matter and has written subsequent emails since telling me she is busy and promising to call but never does, and the local group finally set up here in Southampton which I thought was going to be great for meeting other adults with TS is full of parents who have children with it. The parent's often turn up without the child and the whole two hours is spent talking about school and the difficulties the children are having. Has TA forgotten that Adults were children once? I'm quite happy to listen to the difficulties parents are having and if I can give practical advice based on my own experiences glad to do so. But having been to two meetings I won't be going the 3rd. A young woman came to the last meeting, she wasn't diagnosed with tourettes but had OCD, she sat patiently listening but I felt sorry for her, she seemed really nice but couldn't get a word in edgeways. I'm disappointed with TA. Other support groups I've been involved in rarely make promises they cannot keep, have an organised approach, use appointment telephone booking systems so they can talk to people who may be in need of assistance and don't favour the few. My experience to date of TA is nothing like that.
The survey is regarding NHS services for people with neurological conditions rather than charities. How the support groups are run is very much up to the person who runs it, I like everybody to be involved and positively encourage parents to bring the kids along to the meetings at KVCC where there is the space for them to run around to take part in activities. The meetings in Birmingham are more geared up for adults, we also meet up for other events.
There's nothing wrong with parents bringing kids along to meetings, however a balance is needed. This subject cropped up once before by another disgruntled Tourette sufferer who stated the same, there were few meetings for adults with TS. As I've only recently got to talk to other people who have it, a few more years without meeting other sufferers isn't going to make a massive difference. I just felt the local meeting was one sided and think it needed mentioning. If something is good I will blaze it's trail, if not I won't. If meeting's in Birmingham are more geared up for adults, then perhaps you as a TA worker could have some valid input to help other Groups in the country achieve the same.
Hello Jane and thank you for your comments on the Southampton group meeting. I will be replying to you in more detail by email directly and / or I can call you if you would prefer. I want to give some information here, so that others who read this can understand the situation too. There have only been two meetings so far in Southampton and I can assure you that we contact everyone on our database in the area and reach out to families and adults alike via local clinics, hospitals, disability charities, schools, publications, TA Forum, Facebook and the TA website. Everyone is welcome along to our meetings, but we have no control over who turns up on the day! It would have been ideal to have several adults at the meetings to balance out the conversations and this does happen in many meetings. This doesnt mean that there won't be more adults at future meetings though! We realise that more is needed for adults with TS and this is something that we are constantly striving for. I organised a Conference in the Midlands in December specifically for adults with TS and we are planning various Roadshows around the Country in the future. Assuring you of my best attention at all times. Julie julie@tourettes-action.org.uk
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