Unexpected turn of events


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In an unexpected turn of events, last month my boyfriend discovered that he is also Type 1. While I had certainly noticed some tell- tale signs, such as excessive thirst and dramatic weight loss, having my suspicions confirmed came as quite a shock. For us both to be in the 10% of diabetics diagnosed as having Type 1 is so unusual and unlikely. As I sat beside him at the hospital, listening to the Diabetic Registrar explain the situation, it struck me that while the information was much the same as what I had been given five years ago, the treatment was startlingly different.

I was diagnosed in Ireland. Although I wasn’t feeling ill I spent six days in hospital before I was allowed home to begin coping with my diabetes unsupervised. For the first two days nurses injected my insulin for me, then taught me how to do the same for myself. Doctors, nurses and dietitians came by to educate and reassure me. I have since complained that in all that time spent in hospital there was still a lot that I wasn’t told and this subsequently led to problems for me down the line. However, I appreciate now that compared to the treatment my boyfriend got, being admitted to hospital eased me into things.

Compare this to events last month. It was a Friday evening, and therefore out of hours of the Diabetic Clinic. The Diabetic Registrar met us at the hospital, reluctantly broke the news that Type 1 Diabetes was the conclusion he had come to, and set about explaining blood glucose and ketone testing, and injecting. An hour later we were on our way home. It is a lot to take in in the space of an hour and I felt like I took on the role of Diabetic Specialist Nurse over the weekend. I tried to help by doing tests and injections at the same time, but the thought occurred to me again and again; if I had been sent home on the same evening that I discovered I was a diabetic, would I have coped as well as I did? If I had been handed two insulin pens and then sent home to do my first injection, would I have been confident that I knew what I was doing? The answer is undoubtedly “No”.

I understand that my boyfriend was allowed home knowing that I would be able to answer a lot of his questions and give advice, and I would hope that newly diagnosed diabetics who don’t have someone close to them who has gone through the same thing receive more support initially. I still feel that my six day stint was too long, but one hour certainly isn’t long enough to allow the new information to sink in properly. There should surely be a happy medium, where patients are discharged only when they are comfortable that they understand the information they have been given and can cope with their new routine of testing and injecting.

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Dear Tracey -your story is disgraceful.When was this? Find some Type 1s to share stories with. maybe set up a support group via the local paper – that really helps. I hope you are managing now. Diabetes Uk is a good starting point for support. Luck and love to you

Hi there, having read the above I felt I had to comment. I was diagnosed with type 1 when I seen my GP with nausea/vomiting. She did pinprick test with reading of 19.1, then tested my urine which showed ketones present. I was immed sent to hospital with instructions to pack a bag cos I would need to stay in. On arriving at hosp I was instead told to gho along to see diabetic liasion nurses. I spent 1hr 20 mins with theb +was sent home with a bag full of stuff. No follow up calls etc NOTHING!!! Subsequently I hjave had a lot of trouble keeping my glucose levels stable. My GP gave me a sicknote and told me that I had to see my diabetic nurse and get things under control! That was when I found out about carb counting! Told to buy/download it then away I go! Wish me luck!

I was diagnosed with type one diabetes nearly two years ago. I was sent straight to hospital from the doctors and was only kept in hospital for a matter of hours before being sent home. However, I went straight back the next morning to be informed of all aspects of diabetes.

I couldn’t fault the NHS for the information they gave me and the advice and support they gave me and my mum. I still believe that diabetes is a learning curve. I was completely ignorant to the diesease until I had to deal with it everyday. I’m still learning and think I will be for the rest of my life but my diabetic nurse is incredible. She is always there if I need to talk to her and is more like a friend than a nurse.

Without the support I’ve received from the NHS I don’t think I’d be as a comfortable with my diabetes as I am and the fact we get it all for free is fantastic.

I was also in a similar situation to you, I stayed in the hospital for a week when I was diagnosed at aged eight, this gave my parents and myself to get to grips with type 1 diabetes.

At the time my mum felt very supported by the NHS, apart from one nurse, who kept pressurising my mum to inject me in the first day, but my mum was too scared, she did come around, she just needed abit more time to process all the information.

The only bad thing I can say, is some of the information I was given when diganosed thirteen years ago, was actually alot of myths, and I made sure not to do these things, and only turned out I could when I went on a DAFNE course three years ago.

Thanks for your post, it has made me realise how lucky I was, and how times have changed.

P.s. DiabetesUK the comment from ‘aparadekto’ is actually spam, as I had the exact same post on my site last night! :)

Hi, sorry about that. We’ll have a look at it and see what the problem is. Thanks for letting us know.

I think I must defend the NHS.
I was diagnosed with Type 1 diabetes about 6 years ago. Like Jamye’s boyfriend, I spent about an hour with the diabetes nurse and a friend who I bought along for moral support (but did not have any experience of diabetes). In that hour, I was taught what I need to do, given the chance to ask any questions and, although I felt a little bewildered, gave me the confidence to manage my diabetes. This was followed up with short daily calls for a week or so. The nurse and I very quickly came to the conclusion that I could live my life with diabetes in a very similar way to the way I lived it without.
If I was to spend days in hospital, I would have less confidence that I could cope and felt that diabetes is a life changing disease.
Perhaps it’s different being diagnosed as an adult. Or just a case of horses for courses.

I was diagonised with diabetes 3 years ago, along with under active tyhroid. I was sent to the A & E Department of our local hospital by my GP who had done a blood test and was telephoned by the hospital telling me to attend as soon as possible as the reading was very high. I spent 7 hours in A & E only to be seen by a medical registrar who basically knew very little about diabetes. He sent me home with just Metformin saying a clinic appointment would follow. I struggled on Metformin alone and 3 months down the line when no appointment had turned up was informed my notes had been lost. When I eventually was seen at the diabetic clinic of the same hospital I was told I needed to be on insulin. I feel totally let down by the NHS and goodness knows what long term effects the lack of proper treatment has caused.

After my type 1 diagnosis, i had about an hour of information overload and tuition on how to test and inject. I was 11 weeks pregnant at the time, so luckily the follow up was regular and intense. However, three years on, I’m still learning and sometimes I wish I could go through the tutorial/information again! Each time I see the consultant or specialist diabetes nurse, I find out something that would have made a difference to my control.

That’s so presumptuous of the nhs staff to leave his care to you, even though understandably you were happy to be there for him. My son was diagnosed age 4 – 3 years ago! We were in for a week and I always feel that follow up counselling should have followed. As a result of lack of support and counselling it hut me like a brick last year. I hope thing are ok for you both, but I feel this condition is so insipid that it tells on you even years after diagnosis. As I type this I realise I sound as though as it’s me that has the condition and not my wee one – but that’s what it’s like when you’re a parent of a baby who gets diagnosed. You live, breathe, sleep in numbers and carbs. All the best to you both !

My Husband is also in the forces and we were living in Germany when our eldest son got diagnosed aged 10. The treatment we received was amazing and the stay in hospital was for nearly two weeks, the staff took total charge in the beginning giving us time to adjust. They taught us how to carb count, all about correction doses and adjustments for illness. My son was shown how to inject, we also used the needles on ourselves to see how it felt. We then had classes with the dietician ensuring we would be able to cope once we left hospital. We were only allowed home once the hospital staff could see we were all confident in what to do. We came back to the UK six months later and his new diabetes team are very good and admitted the care we received was excellent and probably would not have been so good if he’d been diagnosed in the UK.

I was shocked to think that you can receive a devastating, life-changing diagnosis of Type 1, only to be in and out of hospital in less than a couple of hours! The diagnosis has HUGE ramifications, that need to be explained over a couple of days, at least!! My experience with my daughter who has Type 1 is almost the opposite of B Dunne’s experience, written above. My husband, who’s in the forces, was posted to Florida, and my daughter, then aged 5, developed diabetes whilst we were living out there. The treatment we had was phenomenal in the American hospital. Although at the time we felt overwhelmed by the amount of stuff we had to learn, I believe the excellent education we received has given us an enormous advantage in dealing with diabetes day to day. For example, we learnt to count carbohydrates from Day 1, which makes perfect sense – you balance what you eat with how much insulin to take. Also, we had to inject OURSELVES with a fake insulin, to show Amy that injections didn’t hurt, and were nothing to be afraid of – no injecting oranges for us!!! To be honest, the tiny 4mm needles didn’t hurt a bit! After about 4-5 days in hospital, we went home, feeling slightly apprehensive, but quite confident in everything we’d been taught – including the horrendous long term health implications if we let her blood sugars run too high. It’s ESSENTIAL that even young people know they could get very ill when older if they don’t follow the basic rules. We went straight to a weekend family camp in Alabama, that really inspired Amy with their enthusiastic “nothing is gonna stop us having fun” attitude to dealing with diabetes – I can’t praise them enough. In comparison, when we returned to the UK, our first meeting with our diabetes consultant was frosty to say the least, as he obviously viewed the “American way” of doing things at odds with his own opinions!! He convinced us to change her insulin to a Mix-tard one, and do things HIS way – he basically said “you’re under MY care now, so you’ll do things MY way, if you want me to look after her!” We had 6 months of horrendous ups and downs, which culminated in us putting our foot down, and changing back to Novorapid, and carb counting. 9 years’ later, and Amy’s still doing well, with HBA1Cs somewhere between 7 and 8. The diabetes team we have now are much better, more flexible, and realise that the education we received in the USA should be given to newly diagnosed people here in the UK too. If you are taught things thoroughly in the beginning, it makes day to day life much more manageable. Amy’s diabetes is NOT the main factor in her life – it’s just something she has to deal with, and is a routine, like taking a shower and cleaning her teeth – it’s just something that has to be done!! She’s now 15, and thankfully hasn’t rebelled against her condition, as we don’t make a big deal out of it – at each meal we’ll “guestimate” the carbs and insulin needed (2 heads are better than one!) and then it’s done and forgotten about. I’m convinced better eduation is the key!

My son was 2 yrs old when he was diagnosed with Type 1 diabetes. He is now 6 but I can vividly remember our situation as if it was yesterday! He was diagnosed on a Thursday and we were told that we might get home on the Friday after being bombarded with info on pens, insulin, diet etc.. etc… I refused to go home and we ended up staying for a week until we were ready to take the brave steps out of the hospital. We are now entering a new phase where my son is being fitted with the “MiniMed Paradigm Veo” insulin pump. If anyone is using this or knows anything about it I would appreciate your comments.

As a result of my husband’s military posting, our family was in the UK when our then 5 year old daughter was diagnosed with type 1. I have nothing but good things to say about the NHS and how we were treated there! Had we been in Canada, I’m sure things would have been different. Here we pay for all of our supplies: insulin, test strips, needles…it all comes out of our pocket. There, it was all free. Here, we would have had to wait days for an appointment just to see a doctor. There: less than 24 hours. Here, our daughter would have sat in an emergency room for hours…there, we walked right up to a ward, a bed and a team of health care professionals. We were told we could stay as long as we needed, and no pressure was put on us to leave the hospital until we were ready.

I’m not complaining about Canadian health care… but it was a bit of a shock to move back here and start paying for all of our daughter’s supplies. I’m very thankful we were where we were when our little girl was diagnosed. It made the learning process much less stressful.