diabetes - one year on
written by a SWAP graduate
I have recently marked my first year as a diabetic, not something to celebrate but certainly something that needs to be a big consideration moving forward in life. I should say that whilst I have only known for a year I am diabetic, the doctor’s surgery knew for three years, they just failed to tell me or treat me for the disease.
I will admit that once I got over my shock at being told quite out of the blue that I had the condition, I was incandescent with rage! Not only had I not been told that my blood sugar levels were too high when I had the blood test three years earlier, but to add insult to injury I had also rung the surgery at the time for my results and been told that my blood test results were all normal! How much damage had I done to myself over three years not knowing or being treated for a very serious condition?
Why am I telling you all this? Well I am setting the scene for what I believe is the best advice for anyone who finds themselves in my position, don’t assume that everything is alright/in hand, even if you are told that is the case, be specific and check details. If you have blood tests, ensure you know what the doctor is testing for, research what is normal for those tests and ask what your results were individually when they come in. Don’t accept the receptionist or anyone telling you they are okay over the phone, ask for the specific and quantified results. That way you won’t get a nasty surprise like I did.
Don’t be a passenger
Don’t get me wrong, I have a lot of time for my GP and I understand the pressure that surgeries are under but the fact that my condition had been missed/overlooked/ignored for three years tested my faith in the service. I should point out that over the three years I was not informed of my condition I saw my GP regularly for contraceptive pill checks – and still my records had not been looked at or the results registered! My confidence was further tested when my GP was very vague about what happened next. To be frank, I was left feeling that he wanted to get me out of the surgery as soon as possible. Fortunately for me and unfortunately for him I am nothing if not persistent and determined and eventually he told me that I should have a screening by the nurse and be referred to DESMOND. “Who the devil is Desmond?" was my response. My GP seemed to find this most amusing. At this point the stark realisation that I knew nothing and I needed to educate myself so that I knew what I was entitled to and what to ask became very apparent. What became even more apparent was that if I didn’t take responsibility for myself and my condition I couldn’t rely on the NHS to do so.
Where to start
My first instinct on leaving the doctor’s surgery was to request access to my medical records to check my blood test results and see what had been noted by the results three years earlier. I asked my surgery for access to my medical records (which you are entitled to do under the data protection act) and discovered that the surgery can charge you for this service. My surgery wanted to charge me £30 for every half hour I spent looking at my record. I felt this was unreasonably high so had to find an alternative.
Everyone has the right to access their records online for free (my kind of price). I quickly arranged for internet access to my medical records, a simple straight forward process. When I finally saw my records, my test results from three years before were clearly marked with an asterisk and the words abnormal result!
At this point I decided that following up with a complaint would in all probability get me nowhere, my efforts were best placed in making sure that the doctor had told me everything about the support I should be receiving for my condition. After all, I needed to know how much damage three years of an untreated condition had done to my body, primarily my eyesight and circulation.
Who the Devil is Desmond?
So back to the infamous D.E.S.M.O.N.D, not so much a who as a what: Diabetes Education and Self-Management for Ongoing and Newly Diagnosed.
This is a course specifically for those who have type 2 diabetes, an educational programme for understanding and managing the disease with an emphasis in the session I attended on nutrition which was really helpful. In my borough there was a significant waiting list for D.E.S.M.O.N.D. I had to wait more than 3 months before I could get on a course so if you are newly diagnosed make sure you ask to go on the course as soon as possible. Click here for more information on the Desmond Project.
In addition to referring me to D.E.S.M.O.N.D. my GP arranged for me to be assessed by the nurse – that check involved weighing me and checking the pulses in my feet. The importance of looking after your feet is constantly emphasised when you are a diabetic. Cuts and blisters are potentially very serious particularly if your circulation is poor. Infections in cuts can lead to amputation, as can blisters which ulcerate and then don’t heal. I was told of a 37-year-old woman who wore shoes that rubbed, developed a blister that just wouldn’t heal and then had to have her foot amputated. I could regale you with many other foot horror stories but enough said.
Finally, I was referred for my diabetic eye screening, this is a specialist (free) eye test where they check for retinopathy. Diabetic retinopathy affects blood vessels in the light-sensitive tissue called the retina that lines the back of the eye. It is the most common cause of vision loss among people with diabetes and the leading cause of vision impairment and blindness among working-age adults. Click here for more information on retinopathy.
The eye test differs from a normal test in that you are given eye drops that dilate your pupils so that back of the eye can be seen. Take a pair of sunglasses and don’t drive as you won’t be able to see properly until the effects of the drops wear off! The effects last for several hours and you look like a modern day vampire on the hunt. Unsurprisingly you have a strange aversion to light, hence the sunglasses recommendation and it is best to sit somewhere ill-lit and wait for the effects to wear off as soon as you can. This eye test should be done annually.
In addition to all of the above, over the first year my blood has been tested every three months for, amongst other things, my cholesterol levels (you are at increased risk of heart attack and stroke) and HbA1C levels. When you are diabetic it is your HbA1C that is key and determines whether you have your blood sugar under control. Red cells live for 8-12 weeks before they are replaced. Measuring HbA1C tells you how high your blood glucose has been on average over the last 8-12 weeks. A normal non-diabetic HbA1C is <36mmol/mol (5.5%). In diabetes about 48mmol/mol (6.5%) is good.
Finally, you need to get forms from your doctor for a free prescription card. You don’t pay for your medication – in fact all your prescriptions whatever the ailments are free from here on in. Who knew there could be a potential upside to the disease?
Where to get accurate and helpful information?
To make sure that you are properly looked after and to ensure that you know what care you are entitled to, the Diabetes UK website is a fantastic resource.
I was very fortunate that Diabetes UK were running information courses around the country and within two weeks of diagnosis, I managed to get on one of these courses. It really opened my eyes and helped inform me about my condition. It also gave me hope as I met lots of people who had been living with the condition from one year to over twenty years. It was a revelation to me how many slim people under forty were there who suffered from the condition. So don’t assume that type 2 only happens to fat people over forty-five, it is simply not true.
What have I learned?
- Never be frightened to push your GP and/or practice nurse for information
- Each time I have a blood test I check my results online before I see the doctor and question him about my progress based on my actual results. I would recommend anyone does the same
- Make sure you push for everything you are entitled to.
With an HBA1C level of 6.6 the last two times I was tested, I now have my condition under control. I can still push to get my level down further but between everything I have learned, changing my diet, lifestyle and by taking charge of my condition I feel confident that I can manage my diabetes. I am still finding things don’t happen automatically. I should have had my annual diabetic eye screening several weeks ago. I have had to chase them and my appointment is not for a couple of months, which just goes to prove, you have to take charge!