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Posted by Simon ( on January 31, 2000 at 15:29:49:

In Reply to: UK and the NHS posted by Lewis on January 31, 2000 at 14:04:06:

Dear Lewis,

Had clusters for about ten years. Last four chronic.

In Norfolk, the doctors hadn’t a clue what was going on, and it was only a locum doctor
who managed to diagnose me. By the time I’d got to the neuro, the cluster had ended, so
no need for medication.

Before the next bout, I’d moved to Hertfordshire, and the GP there was excellent.
Prescribed Imigran tabs without turning a hair, and got me booked on Peter Goadsby’s
list at Queen’s Square. After that I spent some time in hospital there for trials, and started
to take the injections, which made a huge difference. There was never a problem getting
the scrips signed (ten refill packs per scrip, as often as necessary). His stated view was if
it kept me functioning (and alive!) it was worth it.

Oxygen was a different matter. GP prescribed it to try, and the local FHSA rejected it.
They were not prepared to pay £90 for the relevant headpiece for the tanks. They claimed
thatO2 was dangerous and unproven, and a problem might render them and the GP liable
in the event of a claim. Ironically, had I got the valve required myself, they would have
produced the goods, which suggests that money was really the issue. (I calculated once
that a year of jabs had cost them around £15000, so I was at a loss to explain it).

Even my local MP, who was superb, failed to persuade them. I gave up trying at that
point, as the jabs always worked, and when I had used O2 on a drug trial it didn’t. If they
were prepared to let me have the jabs, I was happy.

I’ve since moved again, (via Derbyshire to Staffordshire) and with both the GP surgeries
I’ve been registered with, there has been no problem. I simply made sure I had a letter
from my previous GP, and mentioned Dr. Goadsby’s name. My present GP has also let
me try the oxygen, which I’m still dubious about. It may have something to do with the
fact that one of his colleagues in the practice has a wife with clusters!

My advice is to keep trying, and if necessary get your local MP involved. Take info from
this site, especially from those of us in the UK (Mary and Maggie may be able to help -
check the “where we live” section). Don’t let them fob you off. It is available, and others
can get it, so why not you? If they are a fund-holding practice, they can get a special
dispensation for those who need large quantities of expensive medicines, so their budget
is not thrown out.

I cannot believe the problems they have in the States over this, and am just so thankful
we don't have to have that extra hassle over here. Don't let them make you feel guilty over it
when you try to get the medicine you need - that's what you've paid your taxes for!

Welcome to the board, by the way!

Hope this helps,


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