The change over to genetically engineered insulin was certainly not always discussed with the diabetic patients. Only 5% of correspondents complained about this, but there was a general feeling that the change had been foisted on them, and they were either unclear or unconvinced what advantages there might be. It appeared fro the correspondence not only were there no warnings given that awareness of hypoglycaemia might alter, but people were often told there was no difference between animal derived and genetically engineered 'human' insulin. A diabetic policeman with an unblemished health record who had been promoted to a special 'frontline' position wrote:

Also that year I was with very little consultation changed from the pork insulin I had been happy on for years to human insulin. I was told there was no difference and that because it was 100% pure I would be less likely to suffer ill effects in later life. On this advice I welcomed the change as progress. In fact, it was the start of a nightmare. I started getting hypoglycaemia attacks without any warning… No.59.

A proportion (8%) of correspondents mentioned that they were told either by the doctor or pharmacist that insulin of animal origin would, in any case, no longer be available. In some cases, genetically engineered insulin appears to have been substituted for animal derived insulin by the pharmacist.

We were not told, just given it. No.244

The usual expectation of a change in insulin regimen is that it will be reviewed in the light of the experiences of the diabetic patient; however this change appeared to be not negotiable. When subsequently reporting their symptoms and difficulties with controlling the diabetes on 'human' insulin, 10% said they felt that the doctor was not listening and that their account was being dismissed.

I did complain at the clinic numerous occasions but they did not want to know, so I gave up complaining. No.250

Of course I mentioned this at the clinic, but I'm afraid it seems to be not a topic for discussion. No.294

I have always suggested that the problems have arisen since the use of human insulin, but not one specialist has admitted this could be a possibility… I am totally frustrated with the medical profession and can not understand why they have been so tunnel-visioned with the regard to human insulin. Also, why has no one suggested before that I try different insulin? How long do I have to wait to get the problem resolved?.. I feel my local consultant would wait until I have been brain damaged or worse, before taking action! No.358

Soon after being informed that I was a diabetic I realised that if I was prepared to control my condition it would not deter me from doing anything that I desired and I would avoid physical problems in the future. I was certainly not prepared for a situation where the insulin itself was a major obstacle and also that doctors ignored the information that I presented to them. No. 322

A longstanding diabetic who had had more hypo's since using genetically engineered insulin and had found that she was tired and lifeless most of the time wrote:

I asked my local diabetic specialist at my hospital if I could go back on to the old animal insulin, but she says I can't, saying that the new insulin is nothing to do with my poor health. This may be so, but I see little harm in going back to the old animal insulin for say six months to see if my health improves. No 301.

A common rebuff was told that people had changed over to genetically engineered insulin without difficulty and no-one else was complaining of such symptoms.

…So I complained but they said I'd get used to it as no one else complained. No. 291

I've been back to the hospital several times to ask if they would change me back because of it, and they would not hear of it. They used to say it were me. Because of all this I have lost several jobs and it has really got me down. No.69

Dismissals took a variety of forms such as suggestion that any difficulties were "just in the mind".

For some time I thought I was the only person affected… and my doctor like others told me it was my age. No.328

At the clinic we see a different doctor each visit and they are vague about it all using old age, poor circulation etc. as reasons. No.285

… People like myself were made to feel so silly and unable to cope, when there was no good reason for this situation to have originated in the first place. No.290.

They treat me as if I do not know what I am talking about. No. 81

Some correspondents (9%) had asked there doctor to put them back on animal derived insulin and had their request refused. For a few this raised the question of what their rights were in this situation.

I feel that human insulin is slowly killing me. I have asked my diabetic consultant to please change me back…but she says it is not made any more…please could you tell me if there is anyway I could demand to be put back on to animal insulin? No.208

Another correspondent wrote asking for the BDA's view on getting a second opinion:

I have discussed the situation with my physician who absolutely refuses to change my regime and actually said that he isn't worried about my hypos, only about the fact that I am rather unstable in blood sugar levels…I am at my wits end now…No.228

Some people were returned to animal derived insulin eventually or reluctantly. A widowed pensioner who said that she had "suddenly" been taken of pork and put on 'human' insulin wrote:

That is when terrible things started to happen to me. I would suddenly collapse. I could not lift myself up…and had to lie until my daughter-in-law came to check on me… this happened time after time. Despite my protests about it I was kept on it. I kept on telling them, it was the insulin. They kept trying to blame it on other things, but finally the doctor realised the insulin was not working for me. No.321

After much insistence and refusal to leave the outpatients department until I was put back on animal insulin, everything is back to normal, but the diabetic consultant is not too keen to discuss how I feel now… it's too much of a coincidence to say that the loss of warning whilst on human insulin is due to age… if this was so, why have the warnings now come back and I feel much better? No.330

There were some patients who felt they were facing a 'brick wall' and in their desperation to bring normality and stability back into their lives, took things into their own hands in one way or another, where they could. A correspondent who had always felt different on genetically engineered insulin, had lost warning signs of hypoglycaemia and suffered a serious hypo, a stroke and a cracked skull, gave up trying to be allowed to use animal derived insulin in order not to come into conflict with his doctor whom he needed to sign a certificate of fitness to work. A few correspondents expressed cynicism, anger, and suggested a conspiracy at the expense of the diabetic patient's welfare. There is certainly evidence from these letters of a divide between some people with diabetes and their doctors, and a breakdown of a relationship of mutual co-operation and trust in which changes of regimen are negotiated. As one person wrote, simply,

My own doctor tells me that medical world is very happy with human insulin, but I think you will find that many patients are not. No.214