Sent to Sky News, BBC News ITV News Times Telegraph Guardian Express Mail Mirror and Sun Jeremy Hunt deliberately kept in the Dark Norman Lamb and Staff at the DoH have deliberately kept facts and figures
from Jeremy Hunt which could prevent 7 - 800 suicides a year and help nearly
half a million suffers of the Worlds most painful incurable condition and
that billions could be saved every year.


https://www.youtube.com/watch…

He has also failed to keep his word to go through the 7 steps in the
attached letter with MP Iain Stewart to see what could be done to help
sufferers. The letter has been in his possession since mid-august 2013. The
DoH have failed to reply to my first request and the FOI Act request below.

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Thank you for contacting the Department of Health. Please find a copy of
your query below.

**

Message :
As you have failed to reply to my request on 26/11/14 I now ask the
following questions of Mr Hunt under the FOI Act.
Has Mr Lamb made you are of the debate held on 9/7/2013. Has he made you
aware that at the end he said to me in front of 4 witnesses "if you send me
a list of suggestions I will go through them with your MP and see what can
be done to help sufferers. Has he made you aware of the letter he received
mid-august 2013, attached.
Has he made you aware that there are between 240 & 464,000 un/misdiagnosed
sufferers in the UK and that they cost the country between £ & 4.5 billion
pounds annually. Has he made you aware that the 7 steps asked to fight this
would only mean an annual increase in DOH spending of £500,000 and no
virtually no increase in the NHS budget.
Has he made you aware that he has no concept of Honour, Duty and a Man's
Word is his Bond and failed to hold discussions on my suggestions with Iain
Stewart.
In the Police Force Mr Lambs inaction would be neglect of duty, are you
prepared to launch an investigation into Mr Lambs fitness to be a Minister
of Health when he blatantly doesn't care about the people he is responsible
for.
I have been asked to brief MP's and the press on CRPS and the Governments
refusal to do anything. Andy Burnham has been invited, does Mr Hunt wish to
attend as the person ultimately responsible to people with this condition

Files/attachments submitted
Mr Lamb.doc
CRPS Symptoms short version.doc

I'm in the UK and I'm very interested to know what the source data was for all of the statistics you have listed in your post. In particular it would be interesting if you would share the source for the suicide numbers and the claimed numbers of people currently undiagnosed with CRPS.

Thanks in advance

I always preferred to download the actual paper In Nov 13 after 4yrs and well over 3000hrs of research I had around 150 papers but when transferring everything to my new computer I accidently deleted them rather than transferring and by the time I realised I had reformatted the old comp. I have recovered a few from sent e-mails which I had transferred but due to lack of support from my fellow UK sufferers I cannot be bothered to try and find them all again however this is the best library of RSD papers and you can search it yourself most of them came from there. http://www.thblack.com/
These are some of the things from it. A US Student body was told that sufferers were 900% more likely to commit suicide than any other group and a US paper said that in the long term 25% of us do.
According to Professor McCabe at Bath there are 16,000 UK sufferers http://www.dailymail.co.uk/health/ar...-This-why.html
These are the figures from 4 different sources, the first is one of her colleagues at Bath however the Radio Wiltshire link is not up anymore.
Radio Broadcast by Bath Specialist middle 2013 One in 60 will develop CRPS in their lifetime however 75% will spontaneously recover ( I have never read that anywhere else in the World) That’s 1,050,000 25% = 262000 average lifespan 81 years = 3230 per year.
Based on 9 year Dutch study with 3.5 x their population we have 371,700 rising by 15,400 per year.
2005 US Survey found they had 1,500,000 rising by 50,000 at year with 1/5th their population we now have 390,000 rising by 10,000 per year. Other papers published around the same time claimed there were another 4.5 - 5.5 million un/misdiagnosed
From RCP paper 2012 It states in the Introduction the incidence of CRPS is 26/100,000 person-years my research shows Average UK Age 30 Population 61.8 Million = 1,854,000,000 person years / 100000= 18540 x 26 = 482040 UK sufferers. Obviously if either of the first 2 figures are higher then there are even more suffers. One link which shows the same figures http://academic.research.microsoft.com/Paper/10509723
Professor McCabe was made aware of these figures and she has not said they are wrong.
If you want I can send you a copy of the RCP paper and the letter I sent to them pointing out a number of severe errors plus documents to prove them.
A number of sufferers have persuaded their MP's to attend a briefing in Westminster and are going to come themselves, Dr Mann in the link is going to com and speak for us. NHS England ad the British Council of Acupuncturists are going to attend and all the National Press will be there. I will send you the 7 steps we are fighting for and if you think they will help will you contact your MP and come yourself

If interested here are some Recover files programs-
I've used a few of these when I had hard drive issues or reformatted..

http://www.easeus.com/data-recovery-software/
https://www.piriform.com/recuva

Thanks but I deleted and then reinstalled windows before selling it

As you presumably know but perhaps non-UK readers won't, all health policy, medical education and the actual delivery of all healthcare in Scotland are devolved matters so they are entirely managed, directed and controlled by the Scottish Parliament. There is nothing that Westminster MPs can do to influence any healthcare related matter in Scotland. The same is true of Wales and NI. The NHS in Scotland is a separate organisation and it is run, structured, funded and managed in a radically different way to NHS England. As a consequence, should I want to be involved in any kind of awareness raising, it wouldn't make sense for me to do that outside of Scotland.

I don't want to offend you in any way but, regardless of the geography, I personally don't agree with the various actions you have proposed so I wouldn't be able to lend my support to them. I was, though, interested in reading the specific source data that you were using to evidence the various numerical claims both medical and financial. In my professional experience of the kind of thing you are trying to do, unless you have good quality, methodologically reliable source data which you can clearly cite to evidence and justify all of the claims you make, plus the means to refute any other conflicting data, your ability to effectively lobby and influence for change, especially in an area like health policy, is inevitably extremely limited. The devil (and your potential for success) really is all in the detail.

I know from other things you have posted that you have been personally quite offended and angry when you have felt that other people in the UK with CRPS haven't supported your chosen approach or proposals. I am sorry if my opinion and inability to support your chosen approach makes you angry - I hope you will at least recognise that I'm being honest with you about my views and I am interested in the evidence base underpinning your various numbers.

I only got angry with people who gave their word to do things and didn't. NHS Scotland Wales and NI have been invited to send representatives to the briefing. As I said can send you the RCP guidelines and you can workout the number of sufferers from their figures.

You can download the RCP Guidelines here https://www.rcplondon.ac.uk/resource...ome-guidelines
It states in the Introduction the incidence of CRPS is 26/100,000 person-years my research shows Average UK Age 30 Population 61.8 Million = 1,854,000,000 person years / 100000= 18540 x 26 = 482040 UK sufferers. Obviously if either of the first 2 figures are higher then there are even more suffers. NHS Direct database figure Oct 2010 11454 diagnosed and according to a recent newspaper article by Professor McCabe the lead specialist in this country the number now diagnosed is only around 16,000 http://www.dailymail.co.uk/health/ar...-This-why.html
and that's the highest of the 4 figures