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RE: [IPk] Poss. sources of info.

Unfortunately - for some reason - Bournemouth Diabetes Dietitians were
not listed. We are dealing with insulin pumps down here as part of the
disetronic trial but also work with some patients on minimed pumps too.
julete :) 

> -----Original Message-----
> From:	Jeremy GRAINGER [SMTP:email @ redacted]
> Sent:	22 January 2000 00:32
> To:	email @ redacted
> Subject:	[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 
> patients).
> 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,
> Jeremy
> ----------------------------------------------------------
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