[cajjerParticipant]

Hello Dai & Helen
I don?t post on here very often but I do feel that your recent correspondence is very important and should not be allowed to drift to the bottom of the pile. I?m sure that there are many out there who could and should add details of their own experiences, as you will see I have followed a route that has given me by default more individual treatment.
I was diagnosed in January 2007 after several months of severe back pain, I was told at that time that my prognosis was 3 months, I was started on CDT immediately, I was told that they wouldn?t be able to tell if the treatment was working for about 2-3 months, results were available earlier than this which showed that the treatment was working, after another 2-3 months I was told that I was I was in remission.
I was then booked in at another hospital for an STC, it appeared to be the only course to take, I was not happy with this however and as I asked more questions about the procedure I was informed that this was the way forward , I was a problem and on my notes I was described as being very negative, I challenged the consultant over this who told me that I had asked to many questions, I told him that unless I had the details of what going to happen it was difficult to be either positive or negative, I am naturally a positive person.
The STC failed as I was allergic to the chemo that had been used (4 weeks in hospital much of the time in intensive care). The consultant told me to make an appointment with my original consultant who would put me on Velcade, in the meantime he would forward all the details relating to my treatment to him.
When I saw him he had not been contacted and I had to relay all the information by word of mouth, after further blood tests which showed that I was still close to remission and rather than put me on Velcade I should continue with Thalidomide whilst considering the next step, this returned me to being in remission and there the blood tests show I have stayed apart from the odd scary test for 4 years. In fact I now take a reduced dose of Thalidomide due to PN in both legs.
In addition I have a serious respiratory condition which I am informed by a consultant at The Royal Brompton Hospital is due to Thalidomide, not accepted by Haematologists but appears to be accepted in most other quarters.
I hope that this doesn?t ramble too much

Charles Jude

[cajjerParticipant]

Dai

If you go to the attached you will see the fees that can be charged, I assume that these are the current charges. I hope this works computers and me don't always work in the way intended

Charles

http://www.nhs.uk/chq/Pages/fees-for-accessing-medical-or-health-records.aspx

[cajjerParticipant]

Dai

This is a very good idea, however I receive treatment for other conditions as well as MM, to get these treatments I have to visit hospitals in 3 PCT's, none of them use the same paperwork for blood tests for instance and I have little doubt there are other examples.

I have little doubt that the form you suggest will be altered, altered and altered again by some faceless administrator and you won't see the finished article for years

Charles Jude

[cajjerParticipant]

Hi Keith

The issues you bring up are very important, however the original hospital at Wynyard was a 634 bed hospital at a cost of £458 million using the Private Finance Initiative (PFI) so favoured by New Labour, the final cost when the contact is complete could be between 4 & 10 times this figure. The contract was cancelled by the coalition. There have been many hospital and school projects completed by the last government, I don't expect anyone to come running with a full list. A replacement hospital is now proposed costing £299 million providing 626 bed spaces-quite a difference,they are looking for private finance to build the hospital, the NHS will run it.

I'm sure that we are all concerned about any changes to the NHS and how they will effect us, but a discussion without the true facts available will have little effect.

Charles

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