Friday, 13 January 2012

Is my BS level BS?

I recently returned from three weeks holiday in Thailand, it was a slightly delayed honeymoon to be honest. I then had an extra week off before coming back to work. In that whole month, apart from some less than strenuous walking, swimming and site-seeing, I did no exercise what-so-ever. I kept my eating under control, but possibly had three more ice creams than I should have. All in all it was a terrific honeymoon.

But here comes the sting, my blood sugars have been pretty darned high, registering around 10/14 in general. I don’t know if this is a result of the changes from the holiday, the lack of exercise, or if my drugs are working less effectively. It’s a bit scary.

The week that I had back at home with no exercise I was eating healthily and the blood sugars did not improve. Since coming back to work I have been to the gym twice and on both occasions my levels came down to between 5.5 and 6.1 immediately afterwards but in the morning they would be back up to 10 – even though I’d had a light salad for dinner.

So my question is, will my blood sugars come back under control as I get back into the habit of exercise or are my pills becoming less effective and I should think about the insulin option? Perhaps, the pills are already ineffective and it’s only the exercise that is masking the need to move to insulin. I don’t know.

I’m loath to make an appointment with the doctor as I think he may well say, let’s wait until your next HBa1c, as the day-to-day monitoring is seen as less of an effective measure. However my last HBa1c result showed an increase on what had previously been a downwards trend. I keep losing weight, gradually and healthily, but it doesn’t seem to be working.

Insulin scares me. It scares me because it means learning a whole new way of life – or that’s the way it feels. I have only just got used to the diabetes tablets (I take 4 Gliclazide and 4 Metformin a day) and what that means.

So any help or advice you can offer would be much obliged, on any of these issues. Or if you think you can point me in the direction of a helpful resource – that would be great. Should I wait and see or should I head to my doctor’s now and confront this thing head on?

Friday, 16 September 2011

Hey! I want to be involved

First published on the Diabetes UK blog

Involving patients in their own care is a major trend running through the NHS. People with diabetes have to be more involved in managing their condition, goes the philosophy, as it will save money, resources and improve the patient’s condition.

The way it saves money is through re-organising care. Doctors are pretty expensive as they are private businesses, small business owners with an ambition to deliver great care and make some serious money. There is nothing wrong with that, but the NHS has to save £20bn in the next few years and so money is tight.

With this in mind some of the bigger businesses involved in providing GPs such as Harmoni and Care UK are looking at how they can replace doctors with well trained nurses for certain areas – no doubt an expansion of specialist diabetic nurses will be encouraged and so will more technical aspects such as how a diabetic clinic might run, teaching us how to use testing strips appropriately so we use less, and weight management. A recent study showed that providing free access to Weight Watchers classes helped reduce obesity.

Two issues spring to mind for me, one is that the introduction of the private sector (Harmoni and Weight Watchers) could be a positive thing for patients. I much prefer to see an expert diabetic nurse than a less well informed GP (although all GPs should be better informed). The second is that when it comes to re-organisation of the health service patients are not being involved.

The 7th annual Primary Care Diabetes Society national conference is now advertising itself to GPs and I got to see the programme. There are no patients as speakers and no patient groups involved in any of the sessions. Do they honestly feel that a patients couldn’t provide some good ideas for sessions such as,’ running a diabetes clinic’ (involving issues such as, clinic times and hand held records/personal plans).

Diabetes is becoming a big industry and the customers – us – are being left out of the design of this market. Rather than us telling them what it is we want and having them meet our needs it is happening the other way around. Private sector companies and the NHS are reducing costs and the patient has to fit into that model. There are many things we can do better than the NHS – such as control our own health data.

If I had all my HbA1c, cholesterol, blood pressure and other such results emailed to me so I could upload them to a secure website that my family could access I would have a huge amount of positive pressure on me to keep my HbA1c at good levels. Too many puddings and I’d be letting my family down. And when I did hit my targets we could celebrate together. But that’s all just too complicated for the NHS. What a shame no one gets to listen to our ideas. What a shame the 7th annual Primary Care Diabetes Society doesn’t have a platform for listening to the people they are treating.

Wednesday, 24 August 2011

Post sent to Guardian Comment is Free section for publication

I was diagnosed with type 2 diabetes on the 14 May 2009, my Dad’s birthday. I didn’t mention it when I called him to wish him all the best. Type 2 makes you feel so alone because your first thought is, ‘I have done this to myself’. It’s embarrassing. Subsequently the information you are given about genetics and evolutionary biology give you an argument about why it isn’t all your own fault. You get angry at the supermarkets and restaurants that have thrived on your illiteracy about food. But you can never shake the knowledge that if you watched what you ate and did more exercise you wouldn’t have type 2 diabetes!

Doctors tell you to self manage diabetes but the tools to make it easier aren’t available. I want a single secure place, online, to store all my information about my diabetes. I want to know what my previous HBa1c (long-term blood sugar tests) and cholesterol levels are. I want to know when my last eye appointment was and reminders for the next one, and I want the GPs to be able to see this too so I don’t have to keep pissing around with new prescriptions for the same drugs that they keep getting wrong.

The lack of coordination is staggering. I want to control my information and I can’t. The current system makes my life harder, not easier. I can understand the frustration that drives people who are already depressed and alone to take drastic measures. Give me access to my data in usable electronic form and I will use it better than the NHS.

Saturday, 11 June 2011

Dr Zhang’s miracle cure!

They have found a cure for Diabetes! That’s right, a cure. Sorry, in my excitement I failed to say that ‘they’ is in fact the Dr Zhang Clinic in Crouch End. The Chinese only speaking Dr, whom was never explicitly identified as the eponymous Dr Zhang - or a Dr, through her interpreter told me, to my face, that they can cure diabetes. I was stunned so I asked her to repeat it, just to be clear, and she said, “we can cure diabetes”.

Now the sign outside the shop says, ‘we can help with ..’ and the first thing you see is Diabetes. Now I’m a bit of an old sceptic and so I thought I’d pop in quickly (this wasn’t a consultation) and ask exactly what help they can offer, expecting to get some of the usual ‘woo’ from them to do with shakra and chi, but I wasn’t expecting a cure.

I honestly can’t believe they would stand there and tell me they can cure diabetes. I mean, massive research institutes in the US and the UK are working night and day to cure one of the most costly and growing health problems across the globe and all they actually need to do is to go to the Dr Zhang Clinic, 53 The Broadway, London, N8 8DT, tel 0208 340 8393 and they will mix up some herbal tea and cure diabetes. Please, don’t thank me for passing this on.

So how does it work? Well I have to say they weren’t explicit about this but the tea keeps blood sugar under control and the acupuncture also helps – although they didn’t bother much with this as the tea seemed to be the real money maker – I mean benefit.

When I challenged them and told them I was writing this blog I was told that I don’t understand. You see Chinese medicine, as practiced by the Dr Zhang Clinic, concentrates not on the pancreas but on the real “cause” of diabetes, “heat energy in the liver being high”. I’ve got a hot liver. ‘Heat energy’ is a funny phrase because as we all know, heat is energy. So according to them I have an over energetic liver and that’s the real cause of diabetes.

Now it starts getting serious because they explained the details of how it works. So firstly I have to stay on my western meds and jointly take the herbal tea concoction they put together. I tried asking what is in the mix and how it worked, chemically like. The answer was that it works to cure the diabetes. I abandoned this line of questioning. But the next stage of the treatment is to come off the western meds (metformin and Glicklazide in my case, both drugs I understand and know what they do – chemically like) after about three months of joint use. I could then drink the tea alone – once in the morning and once at night.

So how long would I be on this herbal tea? No idea, they said. It could be an indeterminate period of time because it works very slowly, maybe a year or maybe a few years and then I could stop and would be cured. And how much does this magical tea cost? Well it’s £35 a week. According to them the tea taste horrible and capsules were available – I did not enquire as to the cost of these.

£1820 a year – that’s a lot, but to cure diabetes! So not wanting to fork out such a large amount of money and come off my prescribed pills without a clear reason why I asked them for the evidence that it works, studies, academic papers, people who have been cured by them? Unfortunately the only evidence they could offer was that somewhere, in the great annals of Chinese medicine someone was probably cured, but they don’t know whom. And they haven’t cured anyone themselves because the treatment is so costly no one does it for the full length of time.

I was expecting them to talk about exercise and diet and other lifestyle choices to go alongside the tea – the stuff that, along with my medication, helps keep blood sugar under control, but nothing. Diabetes UK offers helpful information on all these as well as links to research, papers, studies and news about current drugs and developments in diabetes care. Science has produced huge breakthroughs in the care and medication of diabetics. The medicine I take every day, paid for through the NHS, helps me control my diabetes which without any treatment would kill me.

The advice Dr Zhang’s Clinic are offering is likely harmful and definitely costly. Having diabetes is shit. Luckily I don’t suffer from neuropathic pain that shoots up and down legs and arms, but many do. £2000 a year is not prohibitive to someone who is suffering, in pain, and depressed and I am worried that some people might take a chance on Dr Zhang’s miracle cure.

Or maybe it really does work – in which case I encourage everyone who is diabetic or knows someone who is diabetic to call them up or pop in and ask them to explain exactly – and I mean medically – how it works. If you aren’t convinced and you don’t think they are being entirely honest then please call Consumer Direct on 08454 04 05 06 and make a complaint.

Which GP consortia will you be in?

As I’ve mentioned a few times before, and I’m sure you are already aware, the Government is planning a massive reorganisation of the NHS. One of the key changes is that GPs will be banding together into groups to manage the costs of our care, otherwise known as commissioning.

These groups, known as consortia, will be run as businesses and will be held accountable to the Government for the state of their finances. It is yet unclear if they will be able to make profits from managing their businesses successfully, but one would think that might be the incentive. Carrot and stick.

My point has been that diabetic patients, and others with long-term conditions, represent a bigger risk to the budget of these consortia because they are more likely to end up in the hospital than others – and this costs money. So too many diabetics on your books (GP lists) could be costly.

David Stout, director of the Primary Care Trust Network (the current group of commissioners), was reported in the Guardian (March 31 2011) as saying: "I am sure there will be concern about some [consortiums] being the equivalent of 'sink estates', with all the most difficult practices, [and] most deprived populations, coming together."

The Guardian also quoted Frank Atherton, of the Association of Directors of Public Health, who said, “some consortiums could end up "cherry-picking healthier populations" and that "the more deprived and less affluent people [may] get left behind with the poor performing GPs".

I raised this issue with David Stout at a recent talk I went to and suggested to him this sort of ‘risk modelling’, as it is known, could lead to a two, three and even four tier GP system. Consortia are not bound by geography but by relationships. So two GP Practices at either end of the same road might not get on and chose to be part of different consortia.

Or worse, two might apply to be in one consortia and one will get in and the other won’t based on the potential costs of the patients on their lists. I asked David, and others how this can be avoided and short of the suggestion that the Government would monitor this to try to stop it happening, no one could give me a real answer. I guess David is now concerned about this too.

In theory you don’t have to stay with your current GP, but is your current GP the best one or the closest one? Given that we still don’t have any information on how good GPs are, relative to each other, I’m guessing you are with your closest GP – I am. Will we know which Consortia they belong to or how well that consortia performs? Unlikely! Will we know if that consortia has run out of money towards the end of the financial year and therefore decides you don’t need that surgery or appointment for a few weeks, maybe a month? Again unlikely?

In order to track all this we need all this information to be made available to the public. The Government might well do this and has announced a new Transparency Tsar to help drive this through. I have every faith he’ll try, but the Government machine is slow and can be obstinate. I wish him, and all of us, good luck.

Rootin’, tootin’ poopin’

So, as anyone who has spent a long time eating unhealthily food will tell you, or anyone who ever saw a Gillian McKeith programme before she lost it in the jungle (I won’t call her doctor as she wrote off for that qualification http://www.badscience.net/2007/02/ms-gillian-mckeith-banned-from-calling-herself-a-doctor/) your bowels pay for it sooner or later.

Now I don’t normally write about the scatological elements in my blog for diabetes UK as it didn’t seem fitting, but mostly because I didn’t understand the potential side effects of metformin. That was until a chap called Terry wrote in to Jo Brodie’s blog on the Diabetes UK website.

Terry’s comments http://blogs.diabetes.org.uk/?p=409 triggered a rash of responses that gave me the confidence to explore the topic from my own personal view. I’ll try to keep this as clean as possible – which is one of the more extreme problems people can have with the side effects of metformin. The ultimate aim of this blog is for people not to feel alone in their struggle with the ‘betes’.

As I have this weird bit of type 1 knocking about in my system alongside the type 2 I had a sudden period (explored in previous blogs) where my blood sugars shot up. At first I put it down to getting over the initial shock of discovery and eating less strictly, but ultimately I just needed more pills. I doubled my dose of metformin from 1000g to 2000g and started taking Gliclazide at the same time.

I guess I heard from someone along the way that metformin can upset your stomach. Some time into this new regime the rumblings started, gentle at first like Mount Etna, but within a relatively short period of time it all went Eyjafjallaj√∂kull. Which is both an Icelandic volcano and an onomatopoeia. This kept happening, and in fact the pills were leaving me as quickly as they were going in – I was never quite sure if I should take more to replace the ones that quite helpfully floated (sorry, but it’s true they do)! Ultimately I decided they were slow release so I better had.

It was sometimes quite a desperate race to work. Now I wasn’t sure if this was the metformin or something worse. I’m a Jewish male in my mid (to late) 30s and we are a group particularly susceptible to Crohn’s disease (an inflammation of the intestines with serious consequences), plus my Dad and Uncle both have it. I did get worried when I went through about two weeks with diarrhea.

Then one day I forgot to take my four slow release metformin pills with breakfast as I always do. When I got to work I only had two spare ones in my draw. I took them and, you know what, the rumblings, like the London tube over the weekend, stopped dead. I had also been susceptible to approaching hypos around lunch time and these stopped too. So I kept it up with two. Things went ok for a bit but ultimately I had to step it up to three, which is where I am now.

I recently went for an HBA1C test – which they can do in 6 minutes now with a finger prick, do ask for it where it’s available – and it was 6.5, the lowest it has been since diagnosis. The nurse was happy with my metformin regime and confirmed that we sufferers are the real experts. I do a fair bit of exercise which helps control things too.

So if your stomach is a rumblin’ and a tumblin’ and you feel that urgency no one ever wants to feel, you could try talking to your nurse or doctor about reducing your dose for a bit and see what happens to your sugar levels. If you do some exercise as well it might help enormously. But most importantly, you aren’t alone, speak to someone about it and make the change that is right for you.

The right sort of patient

Are you the right sort of patient? You may think you are, you take your meds, you do some exercise and you try to steer clear of chocolate and fancy deserts as much as possible, but this might not be enough. You might well be the wrong sort of patient.

The NHS is changing and Health Minister Andrew Lansley is introducing a new way of doing things. Our GPs are banding together into groups called ‘consortia’ in order to spend large chunks of NHS money - £80 billion of it. Fair play to them they are spending it on us, but that is also where the dilemma comes in.

The way the money works in the NHS is that hospitals charge for the care they provide, and they can make a lot as some hospitals take over £1bn a year. This money, our tax money, is paid out by Primary Care Trusts (PCTs) whose job it is to keep the amount spent as low as possible. So the hospital wants to get us in and the PCT wants to keep us out. Well now the PCTs are being scrapped and GPs will be doing their jobs – or rather the people GPs employ will do their jobs.

So GPs are looking to keep us out of hospital, which is a good thing and hopefully leads to better primary care and better support in the community for people with long-term conditions such as Diabetes. The problem comes because GPs will be responsible for the amount that is spent on hospital treatment and, let’s face it, as hard as we try diabetics do tend to spend too much time in hospital which makes us a higher risk to the balance sheet.

GP consortia will not be allowed to go into debt, if they do the Department of Health can take them over and sack all the managers employed by the consortia. So to protect their jobs managers will want to make sure they have more of the ‘right kind of patients’ and less of the ‘wrong kind of patients’. GP practices in areas with high levels of diabetes or smoking related diseases are going to be at a disadvantage.

Diabetics may well be the ‘wrong sort of patients’ when it comes to cost but the NHS reforms could have a very positive benefit in putting our care at the top of GPs agendas. They will want to keep us out of hospital for their own budget’s sake and avoid emergency hospital admissions for heart or other problems.

Conversely we may find some unscrupulous consortia trying hard to keep certain GP practices out of their generally low-risk groups because that practice has too many patients with long term conditions. Mr Lansley needs to be very wary these self-defining consortia spread the risk of having diabetic patients or we might end up with a situation where many diabetics are locked in to poor performing consortia that aren’t able to provide the care we need. Already we have seen how variable diabetes care is and these reforms may well exacerbate it.