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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 
(Marcus AO)
'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, 
Cryer PE)
'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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