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RE: [IPk] Back again - no pump YET - Celiac disease etc. long!

Hi Helen
re your comments about NICE looking at funding sets but patients having to 
buy pumps this is not the case.
They are looking at whether to approve pump therapy, no mention of 
patient/NHS having to specifiaclly fund individual items. If you need 
further advise, suggest you conbtact John Davis off list.
Kind REgards Debbie

>From: "Jackie Jacombs" <email @ redacted>
>Reply-To: email @ redacted
>To: <email @ redacted>
>Subject: RE: [IPk] Back again - no pump YET - Celiac disease etc. long!
>Date: Mon, 21 Oct 2002 23:34:21 +0100
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>Hi Helen
>I cant give you any advise about the pump situation but what you have said
>make interesting reading especially about the possibility of funding for 
>sets.   It sound as though you might be getting there.
>Just wanted to mention coeliac.  Both of my twins have coeliac, just the 
>has diabetes though.  They were diagnosed last year.  I cant speak from
>their point of view but from mine, thinking about coping with it was a lot
>worse that actually coping with it.  I am surprised that you had not been
>tested for celiac before as it is a linked condition.  Although I suppose I
>shouldn't be surprised, as despite having some of  the text book symptoms
>and bad hypo's that were difficult to treat  it was only when I did my own
>research and asked them to test was anything done. We had 7 difficult 
>prior to being tested.  With lots of hyper and hypos that were especially
>hard to treat.  I had to resort to glucagon injections at times.
>Incidentally my best friend has been having problems, diagnosed with  IBS
>( Drs diagnosis, never seen by a specialist) for 22 years with milk
>allergies and low bone density and anaemia.  Its only since she collapsed
>twice that the GP has arranged tests.  She is to have a colonsocopy and
>gastroscopy and biopsy. On Wednesday this week.
>Sasha only had a gastrocopy and biopsy.  There are new very sensitive blood
>tests available now. But a biopsy is usually needed still.  I hope your
>results come back negative. If the worse come to the worse and you are dx
>with coeliac I have quite a few good links that you can find sources of
>information and if you have Coeliac you will feel so much better on a GF
>Mum of Sasha aged 8 dx 1999, twin sister Rebecca, both coeliac 2001
>Mum also to Danni and Nicola, wife to Terry
> > -----Original Message-----
> > From: email @ redacted [mailto:email @ redacted]On
> > Behalf Of email @ redacted
> > Sent: 21 October 2002 21:16
> > To: email @ redacted
> > Subject: [IPk] Back again - no pump YET - Celiac disease etc. long!
> >
> > I'm just giving an update on the 'hunt for a pump' situation
> > after my appt.
> > with Dr Smith at Lancaster Royal Infirmary.
> > Firstly, Dr Smith and his team were excellent in the overall service 
> > delivered when I had an appt. with them last week. My usual hospital is
> > Furness General at Barrow, although these hospitals both come
> > under Morecambe
> > Bay Health Care trust. I couldn't get adequate care at Barrow hence
> > transferring to Lancaster.
> > Anyhow, I talked to Dr Smith and he said at first that pumps were not
> > available on the NHS at all. I told him they were (!) and he
> > seemed to sit up
> > and listen to what I had to say then! He admitted that the health
> > auth. has
> > ONE patient on a pump and is funding that one patient but only
> > because she is
> > allergic to all types of insulin except that delivered by the pump and 
> > frequently admitted to hospital, couldn't work, etc. etc. due to the
> > diabetes. When he saw I was still pushing it, he went on to say
> > that it was
> > an exceptional circumstance and had still been an uphill struggle to 
> > taking years of red tape to overcome. He suggested that sometimes
> > the Dept of
> > Emplyoment funded pumps if work was a problem! What he did say,
> > though, was
> > that NICE are looking at the possibilty of supplying the pump
> > 'accessories'
> > such as giving sets etc. on the NHS. He said this would mean the patient
> > would be asked to come up with the initial cost of the pump, around 
> > The outcome of the appt. was that he has changed my insulins over
> > onto Lantus
> > and Novorapid with me being able to see my own diabetes nurses
> > here in Barrow
> > in between and having another appt. with Dr Smith in January. I thought 
> > was only fair to at least see if this treatment helped first. But
> > I found out
> > today that there is no one as yet on this regimen here, either,
> > so I am a bit
> > of a Guinea pig! (Not sure if this is a good thing or not)! If,
> > in January, I
> > am still keen on the pump, then we can take it from there, but I
> > would have
> > to fund it myself initially, and that is not possible right now. I got 
> > the usual speil about it being ahrd work and not an answer to poor 
> > etc. and that it was more difficult to adjust than the pen etc.
> > but I think
> > that he had probablyt been told to do this. He did know a lot
> > about diabetes
> > (and this is such a change form the standard of care here) so I wasn't 
> > downhearted.
> > The thing that bothered me the most, though, was that he looked at all 
> > other 'problems' and asked me if I had ever been tested for Celiac (sp?)
> > disease. I have had numerous sigmoidoscopies and a colonsocopy in
> > the past,
> > but no gastroscopy (yet...am waiting to see the gastro people again due 
> > nausea and pain) and no blood test as far as i know. He was
> > surprised at this
> > but said celiac was a possibilty :-(((( and ordered a test anyway. I 
> > this coming back as positive.
> > So, no it's the usual waiting game for that, try this regimen,
> > and wait for
> > the results of the 'biopsy' (which turned out to be a wide local
> > excision...agony...and a subsequent infection due to lack of
> > adequate care,
> > being kicked out of hospital tow hours after surgery, and no antibiotic
> > cover)!
> > Stress...don't ya just love it!
> > Helen McC
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