When Pete was diagnosed with Type 1 diabetes on a school skiing trip, he thought the very worse.
I've had Type 1 diabetes since January 1985. I'd just had my 16th birthday and was on a school skiing holiday in Italy when my excessive thirst, lethargy and weight loss were noticed by the teachers (and possibly accelerated by the altitude and activity) and I was rushed to hospital one night in a blizzard just before drifting in to a coma.
I spent the rest of the holiday in an Italian hospital run by nuns - my first recollection was awakening in a completely white room with nothing more than a crucifix on the wall opposite my bed and what appeared to be a corpse in the only other bed next to me.
Thinking I'd been wrongly classed as deceased and was currently awaiting burial in the local morgue, and of course having no idea how I'd ended up where I was due to the effects of hyperglycaemia I must have screamed the hospital down! Nun's rushed in, and the 'corpse' next to me awoke with a start - he was a lovely old man in there for a routine operation! (We kept in touch for many years afterwards).
A doctor told me a little about my new condition, said I was lucky to have made it there in time and told me that for the rest of my life I'd be injecting this strange liquid - insulin - into my body.
Not being prone to over-excitement, I think I must have just shrugged and thought 'right, if that means I get lots of pasta ( a new food for me) and ice-cream, and I don't feel ill anymore, that's fine by me!I spent the rest of my time there being stabilised, fed on huge bowls of pasta and generally fattened up (I'd lost several stones by the time I was diagnosed) and I remember the care I was given being absolutely fantastic.On my last day there, I was picked up by the teachers and taken back to meet my friends - my last memory of the hospital was looking up as I left the building and seeing dozens of nun's waving me goodbye from the windows high above!I had to fly home to Bristol with the school (it was probably cheaper back then to fly from the airport most distant from your home!) but I had to go to Bristol hospital for a check-up before they'd let me travel back to North Wales. My father and a couple of staff from the local authority came to pick me up and we travelled home, via the suspension bridge which I now know was the wrong way - to a week or so at my local hospital.Here I met the diabetes nurse - a formidable but very knowledgeable lady who had diabetes herself. I was taugh how to inject, told why, what to eat and generally given a lot of information on what this new condition meant for me.
I left to return home about two weeks after leaving for what I thought would be a week of skiing in the alps - weighed down with medical equipment and wondering if my new found love of illicit home brewing of beer under my friends stairwell would be an exercise I could continue with.Almost thirty years later - having somehow passed a decent enough set of 'O' level results three months after my diagnosis and having had to shelve vague aspirations of becoming a policeman in favour of a local authority career as a housing manager and part-time univeristy tutor I look back and wonder how on earth my body and mind withstood such events as carbohydrate counting, huge syringes, the shaking ritual of cloudy insulin mixed with clear, rigidly fixed mealtimes, strict portion sizes, no blood glucose monitor for the first ten years and a finger pricking device which was basically a sharp piece of metal you jabbed in your finger yourself - spring loading wasn't invented back then!
My first recollection was awakening in a completely white room with nothing more than a crucifix on the wall opposite my bed and what appeared to be a corpse in the only other bed next to me.
Pete
I've been very lucky to have had some excellent care from my diabetes team - but on occasion I've had to fight to ensure this was maintained.
My first consultant sadly died suddenly and far too prematurely several years ago, and I am now looked after by another consultant. We didn't get off to the best start though - I wrote several letters complaining about the outpatient arrangements adopted by the Trust soon after he arrived in post but he responded to these very sympathetically and effectively - I won't bore you with the details but it was the funding of care which was the issue, not how Dr Kumwenda tried to manage his shockingly meagre resources.
I used to go to the clinic for several hours - I'd see the Diabetes Nurse, a Dietician, and then at least one doctor. I'd be tested, my feet would be examined, my eyes checked, blood ad urine taken, interrogated as to my care regimes and after several hours would I be allowed out.
This was all I knew, so when a more streamlined arrangement came in I interpreted this as being less care. I now know that the specialist clinics that were being introduced some years ago were designed to still check me over thoroughly but because they were on different days and different locations - I see a different specialist for my eyes, feet and general care - I felt that the care was being reduced.
I still stand up for myself though - my most recent 'Mr Angry of Wales' letter was to the Trust regarding my podiatric care. Again, this was resolved very well - it was basically less than clear communication between the Trust and GP surgeries clouding the issue and I was told I'd have to seek private podiatric care which was inaccurate - but the Head of Podiatry Mr Harmes arranged to meet me in person and again all is well. He was very helpful and I'm now back to receiving excellent foot care from his team.
So far, I've had no problems with my diabetes. I test around 6-8 times a day, eat carefully, always attend my check-ups, and I ensure the care I receive is the best which I can access (see my references to letters of complaint above if I feel differently but also note the underlying reason is usually just poor communication rather than poor clinical care).
I worry that the key to this, in my opinion the ability to test and adjust regularly during the day - is being eroded by the squeeze of funding streams - but after almost three decades of living with diabetes can only look back at those early years and wonder at the leaps forward in care and equipment.
I use a combination of long-acting Lantus insulin once a day and boosts of Novorapid for each meal. My blood monitor is the new and rather excellent Accu-Check Mobile device and I must extend a big thank you to my healthcare team - neither of whom have denied me any access to the care I feel is critical to successfully managing this condition.
I can only hope that the need to have access to blood test strips as often as a patient needs them is maintained - I'm still skiing, so it must be working!
