Advice on Diabetes Doctors

So I just got back from my 'Annual Review' at the hospital. I've been waiting 18 months for an appointment, my diabetes is completely out of control and my husband and I want to start trying for a baby soon. So I turned up ready to hold my hands up and ask for a lot of help.

It basically couldn't have gone worse. The consultant remembered me from my last appointment when we had a disagreement and seemed determined not to help me. (at my last appointment he was insisting i change my insulin doses due to one hypo in my diary, but it was a hypo I could explain so I didn't want to). He'd written in his notes that we'd disagreed before and started laughing when he read it. I told him i wanted to get pregnant and his advice was take folic acid, and dont' have any hypos or your baby will die. I showed him my erratic blood sugars and he said 'what's the problem? are you having too many hypos? your sugars are fine' (they vary between 3 and 17). He said my thyroid levels were wrong and accused me of not taking my medication, when i said i did he said 'i don't believe you.'

Despite it being an annual review noone checked my feet or eyes, i didn't see a dietician or a nurse, apart from for my blood tests. I'm so desperate for help and don't know who to turn to. My GPs are nice but their diabetes knowledge is very limited, and DAFNE is a mystery to them. Every hospital appointment I've had in the last 10 years it seems there's a different consultant - some great, but with no follow up because they disappear - and some clueless.

Can anyone offer any advice? I'm in London, so don't know if I can be referred to a different hospital? And if i can, does anyone have any recommeendations? I'm so angry right now!

Mia x

If they're as bad as they sound, I'd at least see about reporting that particular doctor. There must be another doctor available in the same hospital perhaps if you must change...

Have you contacted your DAFNE team for advice? They might be more helpful considering even my 'normal' hospital doctor still has to be DAFNE trained.. and I know my GP is somewhat intimidated by it because he doesn't understand it (bless him, he put down my current BI dose amounts on the box when I asked for a prescription despite being aware it shifts when I first met him lol).

Ah, how times are changing.. yet it takes so long for the changes to be fully applied!

it's hard isn't it - i don't know if i should report him or not, i don't want all the other doctors to think of me as 'the patient that got our friend in trouble'. and he's sort of mean in a jokey tone of voice. arrrgh.

i did my DAFNE course in norwich then moved immediately to london, so i didn't have any dafne follow up and don't really have a team as such. i'm trying to get an appointment with the DAFNE coordinator at my new hospital but so far no luck, i'll keep trying. I wish I hadn't moved! The norwich team are lovely!

Ah I see. Difficult, but if you are being made uncomfortable, I would report him. Your health is not a joke and sometimes people like that need to be given a clue - but I do understand your feelings. Try applying for a doctor change within the hospital and see how you go if you're not prepared to report him (no shame if you don't, okay?).

Hey we were once DAFNE neighbours - cool!

I'm very surprised that you're having this trouble considering you live in London... I wonder if there's anyone on here that could suggest someone to contact....
http://www.dafne.uk.com/contact.php maybe a good place to start if not. The main office contact is on the right hand side if you want to give them a ring and find out where the DAFNE teams are stationed in London.

Good luck!

Hi, the complete list of DAFNE centres is here . There are a number of london ones in the list, if you email us and tell us which is closest to you we can pass your contact details onto the DAFNE team at that centre via the DAFNE Programme Office. I won't ask you to post any personal information in the forums, this is not facebook :-)
You can contact us using the link at the bottom of every page. You do have a choice in which hospital you attend and even which consultant you see. Although obviously sometimes you can end up jumping out of the frying pan into the fire. I am loath to criticise HCP's since many do very long hours and are very dedicated. Unfortunately sometimes their people skills are not all they could be, one once told me I could lose my driving license because I had a few hypo's. The next time I saw my normal consultant as well as reassuring me he promised to have a word with the younger consultant about his 'people' skills. Most are very good, but occasionally like all disciplines there are a few that could improve.

Chixistix,
I found myself in a similar situation when I went to a new Endocrinologist. Her assessment of me after 45 mins was: I did not take the diabetes seriously, did not do the number of tests I said I did (3100 in 19 months!), did not understand hypoglycaemic symptoms and had reduced ability to recognize hypoglycaemia and my right to drive ought to be reassessed immediately. This was all included in a report sent to my GP. My GP read the report to me...I was astounded! I asked what he thought and he said that he had not seen any evidence of my not taking the diabetes seriously. This he saw as the most damaging of the opinions.

It is now 20 months since that report and I have spent the best part of that time systematically "proving" the inaccuracy of that report. I have a new licence signed by the GP last week.

I think you have to assess what your options are and make a plan. I decided to tell my new endocrinologist about the report as significant elements of it were mentioned in my GP referral. The new Endocrinologist was a little surprised as my HbA1cs had consistently been under 8 since Dafne. I still have "reduced capacity to recognize hypoglycaemia" on my management plan but that is my next goal...to have that removed or at least qualified.

The anger is useless if it is not marshalled to rectify the situation. You can do this...but it could take time.

I am happy with the new endocrinologist and am still working on the GP but I think he has a degree of respect as I have worked systematically through the issues on the report and he did give me my licence rather than whip it away on her say so.

Good luck, Excellent diabetes consultants are out there!

Marke, re licences. Here in Qld/Australia we have a new piece of legislation called Jett's Law that was introduced after a 4yr old was killed in a car accident involving a driver who experienced a seizure. The way the law is written is that if you have an "incident" (technically, a hypo) you are not supposed to drive for 6 weeks. The legislation includes ALL medical conditions. It has yet to be tested regards diabetes. The original endocrinologist who wrote the damning report had been to a seminar the day before seeing me. My GP had been to the same seminar so recognized from where she was coming. Timing is everything!

Hi Mia, don't know where in London you are but I have found Hillingdon Hospital Diabeticare to be very good.
Vic.

Mia, I am in the same boat as you - I had my appointment 6 weeks ago and asked about pre-conception care. I have a little girl who is 4yr and would like to try for another baby next year. My hospital take this very seriously when you are diabetic, and I have been type 1 for 21 years now. My control was appalling before DAFNE and I have done really well since graduating a year ago but still need to tighten my control a lot before they will give me the go-ahead to get pregnant. The general process at my hospital is 6 month pre-conception care with a diabetes specialist midwife and then careful monitoring once you have stopped the contraception! Good luck. If you want to inbox me I am happy to discuss what they have advised me! Sarah