Over the last couple of days my Tourette’s has developed a fascination for mens’ shirts, on Wednesday I was approached by my consultant whilst waiting to see my aromatherapist, complete with curling shirt collars, it took a such great deal of effort to resist the urge to try and un-curl those collars that I really didn’t take in much of what he said. My un-fulfilled mothering instinct kicked in again yesterday when a slightly un-kempt David Cameron wandered from table to table followed by his aide at a NHS reform listening event. Amongst the usual potty-mouthed outbursts that I have, Andrew Lansley (Minister for Health) was brave enough to sit at our table and listen our views plus the usual whistles, squeaks and expletives from myself. David Cameron wasn’t so brave, in fact we joked amongst ourselves that I scared him off. But the thing that was bothering my tourettic brain was his shirt coming un-tucked. The inevitable happened “TUCK YOUR SHIRT IN” he must have heard me because he then put his suit jacket on and off he disappeared to a table as far from me as possible. “Ha-ha, That’s exactly what I was thinking” one of my Neurological Alliance colleagues tells me, “Who else could get away with shouting F off at Cameron, ha-ha”. Apart from Cameron and Lansley, also present was Paul Burstow, who has already had the Mosey experience twice at previous events.
Back to business and what I really should be telling you. The event was a listening event organised by Rethink rethink.org/ the mental health charity. Also present were other organisations such as Diabetes UK, The Stoke Association and of course our group The Neurological Alliance, neural.org.uk/ so amongst our group was myself representing Tourettes Action, there were a couple of guys from Epilepsy Action and a lady from Parkinsons UK. Within our group we discussed matters relating to the NHS reforms and how the proposals would impact on people with our neurological conditions with Andrew Lansley. These are some of the issues we raised with him.
• The fact that there are often not many patients with TS in one particular GP surgery and this in turn effects how many specialist TS clinics there are, which in turn means that TS patients have to travel further to see a specialist. We were also concerned that with a condition such as TS that GPs may not be aware of the specialist TS clinics and refer patients to nearer and cheaper psychiatrists that are not TS specialists.
• The GPs lack of knowledge of many neurological conditions including TS, which can lead to patients receiving a wrong diagnosis (and treatment) or no diagnosis at all.
• The role of charities, as part of the reforms charities are required to play more of a role in providing information about specific conditions to GPs and of course supporting patients. However many of the charities that support people with neurological conditions such as Tourettes Action are very small, at present TA doesn’t have the manpower or resources to provide that much information and support. We would hope that within the government plans there would be some funding available to help small charities to grow and be able to give the required support and information.
• Healthwatch. Healthwatch, as part of the plans will be replacing LINks nhs.uk/NHSEngland/links/Pag... we believe that there needs to be more made of the local Healthwatches, there needed to be much more involvement from patients and community members also Healthwatch needed much more publicity as even myself as a pretty clued up service user/patient wasn’t aware of LINks until I attended a conference and met some people from Croydon LINks.
• How will the GP consortia engage with patients? GPs need to give as much information as possible to patients about their treatment in order for the patient to make informed choices about their care.
There’s more I could add, if you have any questions about the NHS reforms please get in touch.
Catherine