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Shrewsbury Meeting - Observations.

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#1 Mon, 07/04/2014 - 14:58
RichardW
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Last seen: 3 years 4 months ago
Joined: 26/02/2014 - 14:35

Shrewsbury Meeting - Observations.

A really worthwhile day for me as I met others having much the same and, two with identical, experiences as myself.

The knowledge and information shared by the experts was truly impressive and it's encouraging to see how much is known about our suffering and condition.

There are some important things to do now:

1. BBC Ouch must be persuaded to change it's name as it will dilute our brand. I am surprised they have not been challenged by disability charities who do not consider the disabled as suffering or having a disease.

2. Develop a headache diary app for smartphones. One already exists for Android users and the author says he cannot do it for another system. Smartphones will be more universal than computers and more convenient to use. Then collect our anonymous data as Big Data for Peter Goadsby & Co to enhance their research.

3. I am not clear on the call for volunteers on clinical trials to have placebos. If you know you have one that must negate a trial as we know what its like without our fixes.

4. Recognise the role and support needs of children who have Mum or Dad in a regular attack or bout. In Stafford we have a Carers Association worker who visits schools and community groups focussing on children as Carers.

5. I think we are going to need a treatment price guide so that we can if necessary challenge GPs etc and have a view of cheaper alternatives. There is a huge downward pressure on prescribing and GPs are using some possibly dubious software to justify the cheapest offer regardless. 

 

 

 

 

Wed, 09/04/2014 - 20:07
Val
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Last seen: 11 hours 43 min ago
Joined: 21/03/2012 - 15:16

Hi Richard

Good to talk on Sunday. 

BBC Ouch! own that trademark and there's not much we can do about it, we investigated some time ago.

We are in the process of developing a CH app, and hope to include a CH diary, but now I've spoiled the surprise!

I'll try and get clarification on the placebo point.  The thing is the placebo/double blind studies are much more readily accepted than anything else, so I think the Prof was asking would we be able to cope with a month without effective treatment, i.e a placebo.  But I'll check.

As you will have discovered we do have very good supporter back up, but where there is a child-carer it would be up to the family concerned to involve the Carers support worker.  We'd love to be able to offer a service like that, but we are not a large enough organisation to do so.  Anyone, including children, can call the helpline, they can interact on our Facebook page (most kids love social media!). We will offer help and support wherever and to whomever we can.

It's difficult to get a full price guide of medications, for a start the same medication can be manufactured by more than one company and the prices can vary hugely, it all depends on which company your dispensing pharmacy purchases from.  The generic version of drugs is always the cheapest [i.e. it doesn't have a fancy brand name], and I have the generic version of sumatriptan injections made by Sun Pharmaceuticals - I suggested to my dispensing pharmacy that they were cheaper than the GSK Imigran injections and they took up my suggestion with alacrity.  But to try and produce a guideline pricelist of drugs for CH is going to be a complicated task and it is something that would be subject to constant change.

Thanks for your comments and suggestions and we'll bear all you have said in mind.

Val. :)

 

Thu, 10/04/2014 - 18:39 (Reply to #2)
RichardW
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Last seen: 3 years 4 months ago
Joined: 26/02/2014 - 14:35

Hi Val. Good to hear from you.

The BBC could change the name Ouch and I don't think their name is valid even though the journalists are disabled. We had a fight in the 1970s to get Mongol changed to Downs Syndrome. We'd have to get Mencap, Scope and DSA etc support though maybe a joint letter to the newspapers.

Had a chat with Peter May re App and will look forward to trying it out whenever.

I wouldn't expect us to provide child carer support but I will ensure our local Carers Association is aware of us as a group and ECH is a disability to include in their educational visits.

I had to challenge GP on Zomig which does work for me but not the generic version. Zomig = £38 Generic = £8. GP was Ok about it. There must be a tarriff somewhere worth a look at.

I wish I could like Facebook but I find it messy and less coherent than this forum.

 

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