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[IPk] Poss. sources of info.
For those trying to get every source of information, to find things out or
use to persuade their consultants or whatever, the following may (or not)
be of some use to some.
A booklet is published (I think annually) called 'The Directory of Diabetes
Care', the latest current edition is 1999. It includes every diabetic
clinic in the country and every DSN, consultant, dietitian etc involved
with diabetic care (research fellows etc are not included). It might be
helpful if your consultant refuses to have anything to do with pumps, in
that it can be used as a source to find where 'good' consultants do exist
and if people so wished be used to create a blacklist of places to avoid.
The web & email of the publishers are:
http://www.cmadata.co.uk email @ redacted
Although somewhat dated a research project was carried out by the 'Centers
for Diabetes Control' in the mid eighties which proved that pumps did not
cause deaths (a fact which many doctors believe). Ref. Teutsch SM, Herman
WH, Dwyer DM, et al Mortality among diabetic patients using CSII pumps; N
Engl J Med 1984-310(6)-361-8
Other books/articles are 'The insulin pump Therapy Book', 1995 (Minimed)
'Reduction of severe hypoglycemic events in type1 diabetic patients using
CSII' Diabetic Res 1988;8(4):189-93 (Eichner HI, Selam JL, Holleman CB, et al)
'Pathogenisis and prevention of the dawn phenomenon in diabetic patients
treated with CSII' Diabetes 1986;35(1):78-82 (Koivisto VA, Yki-Jarvinen H,
Helve E, et al)
'Patient selection for insulin pump therapy' Pract Diabetol 1992;11:12-8
'Psycological impact of CSII pump therapy in non-selected newly diagnosed
type1 diabetic children: evaluation after two years of therapy.' Diabete
Metab 1990;16(4):273-7 (Slijper FM, De Beaufort CE, Bruining GJ, et al)
'CSII for the treatment of diabetic patients with hypoglycemia
unawareness' Diab Nutr Metab 1991;4:41-3 (Hirsch IB, Farkas-Hirsch R,
'Successful long term pump use and SMBG in 205 patients' Diabetes
1994;43(Suppl1):691 (Bode BW, Steed D, Davidson PC)
'Long-term safety, efficacy and side effects of CSII treatment for type1
diabetes mellitus: a one centre experience' Diabetologia 1989;32:421-6
(Chantelau E, Spraul M, Mulhauser I, et al)
The DCCT trial provides very useful information (re. intensive treatment
Most of the above references are taken from an article called Insulin Pump
Therapy, in which it includes reasons for discontinuation which are listed
as i) infections, ii) inconvenience, iii) lack of metabolic improvement.
Long term(?) discontinuation rates are given between 10 - 20%
Pfizer is listed as offering 'More detailed information on request' with
regard to Prescribing Information (this may only be relevant to USA).
Most of the above is only relevant to medical trials of CSII, but if one is
trying to get financial help the more relevant information you can provide
the better your chance.
It might be helpful to locate your LDSAG (Local Diabetes Services Advisory
Group), if lucky there may be someone within the group with knowledge of
CSII who might be able to offer you great help - these groups have forced
local health to improve services in bad areas a lot in recent years.
Contact the BDA to find out who to contact.
Your CHC and MP are the most able to get help for you, but the way your MP
reacts is not predictable. It can be worth writing to the chief-exec of the
hospital trust at which you are seen for diabetes, but again his/her
reaction can be anything, although if you get a letter in return saying
there is no benefit with pumps, make sure you keep it, because with good
evidence to prove that pumps are beneficial you can use that against the
person. Unfortunately this may require coming off the pump (for whatever
reasons) and then showing how control deteriorated. You are then in a
position to refute doctors who say that you are only badly controlled
because you make no effort.
The main thing is never to give up, just go on and on, success can often
come at the most unexpected moments. It is also worth trying to write to
the shadow minister of health, especially at the present moment, making a
letter in the form that indicates the local health authority are
withholding funds from you that are required for a stable life.
Best wishes to all,
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