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Medical Forum / Diseases and Disorders / Arthritis / January 2008

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speak of/to Jayne....

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lavenderhouse3812@gmail.com - 20 Jan 2008 14:44 GMT
So what ever happened to the UK.people.support.arthritis group?  It is
fairly inactive now.  I used to read it regularly to keep up with all
of you who used to post here.  Jayne,
do you ever hear from maureen, or Connie Davis, or Andrea Fuller, or
Bill?

melinda
Splodge - 20 Jan 2008 15:41 GMT
> So what ever happened to the UK.people.support.arthritis group?  It is
> fairly inactive now.  I used to read it regularly to keep up with all
[quoted text clipped - 3 lines]
>
> melinda

I can help a little here I think.

Connie Davis is now living on one of those houseboats and no-one seems to
have heard from her, despite the occasional enquiry on UPSA.

Haven't heard from Maureen but I happened across her website ages ago and
she was busy holding courses, selling cards etc

Andrea used to run a Yahoo dieters group but she became ill, stopped posting
and it's now run by someone else. I tried phoning her for ages and it was
never answered.

Jayne may know more as we post in other groups. She's recently had her
second knee replaced and is doing well. Expect her to reply to this any day
now..................lol

I used to post under other names so some may not recognise me. I've now had
both shoulders, hips and left knee replaced. I got breast cancer in 2007 and
am now on the waiting list to have a second revision of my left hip.

Bill? Can't remember him, sorry

Splodge (Jan in the UK)
Peter - 20 Jan 2008 16:30 GMT
> <lavenderhouse3...@gmail.com> wrote in message
>
[quoted text clipped - 31 lines]
>
> Splodge (Jan in the UK)

Nobody seems particularly interested in the UK group, which is amazing
considering the poor state of many NHS hospital based rheumatology
services. (eg I am told that in certain areas funding is available for
anti tnf drugs, but the patients can't get to see the consultant (due
to shortage of personnel) who has to recommend them). I look in at the
UK group from time to time, but it just doesn't seem worth the
trouble. Better to post here where there is more interest and more
help and info when you need it.

Peter
lavenderhouse3812@gmail.com - 20 Jan 2008 17:47 GMT
> > <lavenderhouse3...@gmail.com> wrote in message
>
[quoted text clipped - 42 lines]
>
> Peter

Well, Peter, I certainly hope you keep posting!

m
Jayne - 20 Jan 2008 17:55 GMT
> Nobody seems particularly interested in the UK group, which is amazing
> considering the poor state of many NHS hospital based rheumatology
[quoted text clipped - 6 lines]
>
> Peter

I have been taking a rest generally from newsgroups, and as far as arthritis
is concerned I haven't a lot to post about.  I was posting as I recovered
from my knee replacement as it was relevant.

However, I have to say that what you say about the NHS is a bit of a
sweeping statement.  Not all people find your personal experiences to be
true.  I have a wonderful rheumatology department, had no problems at all
getting anti-tnf treatment, and had the same experience with orthopaedics.

Jayne
Harvey R. Stone - 21 Jan 2008 02:09 GMT
Every so often,,,,, some servers will cut a completely inactive newsgroup
from their service.....  Someone post something in it every now and then if
you want to keep it.
Harv
Ps   buttttt we are happy to have you here.

>> Nobody seems particularly interested in the UK group, which is amazing
>> considering the poor state of many NHS hospital based rheumatology
[quoted text clipped - 17 lines]
>
> Jayne
Peter - 21 Jan 2008 18:30 GMT
> > Nobody seems particularly interested in the UK group, which is amazing
> > considering the poor state of many NHS hospital based rheumatology
[quoted text clipped - 17 lines]
>
> Jayne

Your experience has been better than mine and I think you are lucky.
You only need to look at the NRAS web site and the forums to see that
there are definite NHS shortcomings in the area of rheumatology. RA
treatment with the NHS is still a postcode lottery and (I believe)
that some PCTs will still not fund anti tnf treatment, though this is
by no means universal. The funding priorities vary in different
places. At the same time, I am very grateful that we do not have to
bear the financial burden that many of our working (not retired)
friends do in the US.

Peter
Jayne - 21 Jan 2008 21:35 GMT
> Your experience has been better than mine and I think you are lucky.
> You only need to look at the NRAS web site and the forums to see that
[quoted text clipped - 7 lines]
>
> Peter

I agree that it is not the same for everyone in the UK.  However, it is not
doom and gloom all over the UK, as many people will attest.  Five years or
so ago, I remember reading with envy of all the people on ASA who were on
anti-tnf treatment, while we in the UK couldn't get access to it.  Now there
are many people who have it.  Also back then, waiting lists for surgery were
horrendous, in some areas years long, and things have definitely improved in
that area.   Elective orthopaedic surgery where I live is now 3 months, with
many waiting less than that if they are prepared to take a short notice
slot.

My point was that it is not bad everywhere, and it is certainly better than
it was 5 to 10 years ago.

Jayne
Peter - 22 Jan 2008 14:19 GMT
> > Your experience has been better than mine and I think you are lucky.
> > You only need to look at the NRAS web site and the forums to see that
[quoted text clipped - 22 lines]
>
> Jayne

Agreed, but I have to say that the system itself could be vastly
improved. It is too big to exist as a single entity and wastes vast
amounts of money. There is little regard for patient dignity (mixed
male and female wards still exist and waiting times for both in and
outpatient appointments are often much longer than they should be).
NICE makes certain that some treatments never get through to the
health service (I signed a petition only the other day to ask the
government to ensure that anti tnf drugs are made available to those
who suffer from ankylosing spondylitis).

From the NRAS website:
"Although rheumatoid arthritis (RA) is the most common form of
inflammatory arthritis, Ankylosing Spondylitis (AS) affects 1 in 200
men and 1 in 500 women. Gillian Eames has severe AS and her local
Primary Care Trust (PCT) is refusing to pay for anti-TNF treatment
after a successful 5 year trial

NICE does not recommend use of abatacept (Orencia) for people with
severe rheumatoid arthritis"

We still have many hospitals described as dirty, and large numbers of
patients becoming infected with MRSA and other bacterial and viral
diseases. To some extent this results from too many patients being
packed into the wards and an inadequate number of private rooms.

I suppose one could keep digging, but I won't. Obviously, there have
been improvements (because the inadequacies became politically
significant), but there are still numerous shortcomings which are
being exposed.

When (if) patients have control of the money, things will change
because they will channel the cash towards the best institutions,
staff and treatments

Peter
lavenderhouse3812@gmail.com - 20 Jan 2008 17:45 GMT
> <lavenderhouse3...@gmail.com> wrote in message
>
[quoted text clipped - 31 lines]
>
> Splodge (Jan in the UK)

Hi Jan,
thanks for that info.  I so often think about newsgroups and how we
all drift away at times.  Can you point me to where I can find
Maureens website, by any chance?

thanks
m
Splodge - 20 Jan 2008 19:04 GMT
>> <lavenderhouse3...@gmail.com> wrote in message
>>
[quoted text clipped - 42 lines]
>
> thanks

I wish I'd bookmarked it but I forgot. Sorry, but I'll post it if and when I
find it again
Splodge
arthur@ra.com - 20 Jan 2008 19:15 GMT
>  Can you point me to where I can find
>Maureens website, by any chance?
>
>thanks
>m

http://suenotts.tripod.com/id35.html
Jayne - 20 Jan 2008 17:51 GMT
> I can help a little here I think.
>
[quoted text clipped - 20 lines]
>
> Splodge (Jan in the UK)

You took the words right out of my mouth!  Actually Jan, you know more than
I do about most of those people.  I posted in another thread about the
coleslaw and christmas tree (!) so you see, I am gradually de-lurking!

Jayne
Splodge - 20 Jan 2008 19:05 GMT
>> I can help a little here I think.
>>
[quoted text clipped - 24 lines]
> than I do about most of those people.  I posted in another thread about
> the coleslaw and christmas tree (!) so you see, I am gradually de-lurking!

I don't know a lot more Jayne, but I remember all the posts about Connie,
and that no-one could get a reply from Andy either. Perhaps they've gone off
together lol
Splodge
 
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