Tourettes Action
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How Not to Live Your Live

How Not to Live Your Live

Nothing much has happened today, I’ve been to Coleshill, got there safely without throwing myself off the back of the bike or any other similar mishaps. The journey was quite pleasurable riding along the country roads, guaranteed it’s a more pleasurable experience on a warmer day but at least I wasn’t plagued by the same frightening intrusive thoughts as yesterday. I do sometimes forget I have Tourette’s syndrome and it seemed more natural and a rule of the road type of thing that when I get off and take off my helmet the tics will escape. Luckily bikers and those who fix them (specialist bike tyre company in Coleshill) aren’t phased by much apart from the young shop assistant rearranging a display of cargo nets who nearly jumped out of his skin when out popped a loud “F*** OFF” in certain circumstances Pete’s ability to cope is getting better “She’s got Tourette’s mate” he breezily says. He soon realizes he’s not joking; there is a real life person with Tourette’s in his shop. I can imagine his Facebook status.

But back to the real content of today’s blog post, as a couple of weeks ago I was down in London at a Neurological Alliance meeting I thought I’d share some of my thoughts on the NHS and all things reform.

Now we are 5 days into the new look NHS things from the outside looking in haven’t seemed to change much but I still have the same worries that I did when I first read through the white paper outlining the changes. Some of these changes are still very hazy particularly for those of us who have neurological conditions, the main issue being is WHO is going to pay for the care that we need? Will it be the GP consortia (groups of GPs who will “buy” healthcare) or will it be paid for nationally? I’m not sure that Andrew Lansley knew so what hope would Jeremy Hunt have? Also, still there is no Health Minister who is ultimately accountable. Worried?

Even more worrying is that the services of private practitioners can be bought in, this in my humble opinion can only cost cutting which will ultimately harm patients. Before these reforms were on the cards a couple of other charities that represented people with neurological conditions were looking into the roles of specialist nurses. I know that there is indeed a specialist nurse in Birmingham who helps with the treatment of people with TS and she’s a gem, I would hope that every other TS clinic in the UK have their own specialist nurse that helps with the treatment of people with TS. I saw her almost every month for just over a year for Habit Reversal Training which was a godsend. In addition to seeing her I saw my TS specialist every 6 months, but unfortunately due to the waiting lists that 6 has been tipped upside down and is now 9 months. I have some serious solutions to this problem and some not so serious solutions.

The Not-so-serious solution.

As plants such as the spider plant and strawberry plant create off-shoots which can be propagated thus creating a new plant with the same DNA. I do this quite a lot as I have quite a few strawberry pants in my back garden, you find an off shoot, you pin it down with a hairgrip in a small pot of compost and leave it there, attached, a couple of weeks later you have another strawberry plant. So therefore the plan is similar, as he’s most likely to me right handed you pin his arm into a pot of compost and hopefully it will take root and a few months on another consultant with the same DNA, knowledge and experience of TS will have grown, give it a couple of years and it will be hard to differentiate between the original consultant and the new one and they then can be separated and have their own list of patients, thus cutting down the waiting time for patients.

The Serious Solution.

For other neurological conditions that have specialist nurses, the nurses deal with the monitoring of the patients and would then refer them to the consultant if need be. Things can change a lot for a ticcer in 9 months, I’ve joked that in that period of time I could have a dodgy one-night stand, get pregnant and turn up 9 months later with a little bundle of joy. If that did happen would I be able to been seen quickly so medication could be reviewed? I’m lucky (or some may say unfortunate) that I also get care from my local community mental health team (CMHT) My psychiatrist is a lovely man, I see him about every 3 months. I’m excellent at reading body language and picking things up from other people, sometimes a bit too much! So here is a conversation between my psychiatrist and myself.

Dr ? “Are you still seeing (looks at notes to look for name) in Birmingham?

Me “Yes, I’m not due to see him until September”

Dr ? In his head he’s saying “SEPTEMBER???? Are there really that many people with Tourette’s?” but he actually says “Oh, that’s a long time away. How are your tics?”

Me “They’re ok, not to bad at the moment”

Dr? “That’s good” he’s actually thinking “thank goodness for that.”

I think that if I did tic-wise suddenly get worse and my appointment with my specialist was a long way off they would panic on the inside. He did express concern about my stair tumbling incident.

So my serious solution would be to have appointments with your nurse say every 3 to 6 months or as-soon-as-possible if you suddenly became worse, if there was anything that concerned him or her (as I think there maybe should be another) or you needed medication prescribed they could refer you to the consultant, you’d also get to see the consultant at least once a year, or every 9 months as it’s currently working out to be. Anyway just a thought.

Returning to the NHS reforms, the healthcare that we receive may come from a private company, some may accuse me of being cynical but I can see where this is heading. Services could be uneven, getting the treatment you need would be very much a postcode lottery, and personally I can’t see any good from this. All I’m seeing is a gradual shift towards the health system that they have in the USA, where people have to buy health insurance and those in low paid work, unemployed or those with an existing condition would find it difficult or impossible to get health insurance.

When Nye Bevan formed the NHS, healthcare was to be free at the point of service and available for all. The NHS is the envy of many countries. Like my fellow countryman I believe that healthcare should be available to all regardless of wealth. The thought of having to pay insurance to a private company that answers to it’s share holders that may or may not allow me to have treatment that I or a family member needs from another private company which again is answerable to it’s shareholders frankly scares me.

Whilst I was marooned on the sofa with a dodgy ankle I watched a whole load of “Scrubs” even though it’s a comedy it does sadly and plainly illustrate the problems with the US system, patients faking illness in order to get medication for a family member who is seriously ill yet can’t get insurance, patients been discharged when they are not ready to be because the insurance won’t pay, the list goes on. Here’s a short bit that illustrates what I mean, JD, cute cuddly intern (US equivalent to a house officer) goes to play golf soon after starting his new job with the chief of medicine, Dr Kelso who is more concerned with profits than people and then his mentor Dr Cox turns up.

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