NHS is not a four letter word – by Olly Double

Because of the Olympics, people are thinking back to the last time we had them here in the UK, back in 1948. What I’ve not heard much talk of is the much more significant achievement of 1948 – the foundation of the NHS. Britain was stony broke and still getting back on its feet after the worst war the world had ever seen, and yet the Attlee government pulled off setting up this extraordinary institution which made quality healthcare available to all regardless of their ability to pay. Nowadays when we have an economic crisis they talk about cutting back on public services. In those days, they actually set one up from scratch. The man in charge was Nye Bevan, who makes today’s politicians look like the vacuous, cowardly, self-interested timeservers that most of them really are.

I took my sons Joe and Tom to their diabetes clinic in London last week. As usual, the care we received was exceptionally good. Their specialist is a fantastic doctor, a man who treats children and teenagers as his equals, in spite of his formidable expertise. He asked Joe and Tom how they were getting on, and took a genuine interest in what they had to say, whether it was directly about diabetes or not. The conversation is so casual and jokey, you sometimes forget it’s a medical appointment – and yet since moving to this clinic, the control of the boys’ blood sugars has improved enormously. They spend much less of their time with their glucose too low or high, and their HbA1Cs have fallen significantly, thus improving their chances of avoiding long term complications.

The week before, I was in Orlando, Florida, for Friends for Life, a conference for individuals and families affected by type 1 diabetes. It’s a lovely event – I’ve previously blogged about the one they run every year in Windsor. While I was there I found myself seeing a lot of coverage of President Obama’s health care bill on various news programmes. The newsreaders refer to it as ‘Obamacare’, and its opponents were trying to turn this into a big, scary word so as to persuade people to hate and fear it without thinking. ‘Tidy your rooms kids, or the Obamacare will crawl out from under your bed and bite your toes off!’ Amazing to think that people can get so angry about something with the word ‘care’ in it. I’ve never thought of ‘care’ as a four letter word.

Obama’s bill is far, far less radical than the NHS and will offer Americans nothing like what we enjoy, and yet it still apparently has the power to send many apparently ordinary people scurrying for a piece of carpet to chew on. I’ve spoken to people at Friends for Life who can’t say the words ‘socialised medicine’ without scowling, and see a National Health Service as the nearest thing to parading across Red Square holding a giant banner with a picture of Comrade Stalin on it.

What they seem to fear is that an NHS would mean having no choice over your healthcare, and just having to passively accept the care your government-appointed doctor gives you. And yet the funny thing is that when I hear Americans talking about fights they’ve had with their health insurance company over getting the insulin pumps or blood glucose monitor they want for their kids, it reminds me so much of fights people in the UK have had with their doctor or primary care trust – or indeed the fight we had to get Joe and Tom moved to a clinic which would put them onto the insulin pumps that have done so much to improve the control of their condition. (Hopefully the new Paediatric Diabetes Tariff will help with this kind of thing, but if not we used NHS Choices to be referred to another clinic.)

The big difference is that even with health insurance, Americans have to pay for a lot of their diabetes care. Even though their insurers will cough up for some of it, they will still find themselves having to shell out a lot of money on equipment and supplies. As if diabetes wasn’t enough of a pain in the tender spot already, in the American healthcare system you also have to pay for the privilege of having it. How difficult must that be for families on a low income? What if you can’t even afford health insurance?

I can imagine that for anybody who’s less than 100% financially comfortable, the cost of diabetes care would change your relationship with the condition. For example, research has found that the more regularly you test your blood sugars, the more likely you are to have good blood glucose control. Pricking your finger to check your blood isn’t exactly something you’d do for fun in the first place, but imagine how much less fun it would be if each strip you used was costing you money. And how much more annoying would it be when you get a duff strip that gives you nothing more than an error message on your blood glucose meter? Surely, paying for your strips is a subtle disincentive to test?

Then there’s the question of getting health insurance in the first place. What about the young adult with diabetes who’s going off to college? As well as coping with having to manage your condition all by yourself and adjust to your new life away from home, you’ve got to get insurance sorted out so you can pay for the care that you need to keep you healthy. One great thing about Obama’s bill is that it will allow young adults to stay on the parents’ health insurance until they are 26. That’s a detail that more than one parent I talked to at the Florida conference was extremely grateful for.

Now I know the NHS isn’t perfect, and I’m aware that not everybody gets the kind of excellent diabetes care that Joe and Tom benefit from. But if we want to make it as good as it can be there are things we can do. For a start, we can make sure we don’t vote for anybody who’s looking to cut it back or undermine it in any way that would take it back towards a private healthcare system. We can also support organisations like Diabetes UK, which campaign for better care for people affected by the condition. On an individual level, we can refuse to sit back and accept poor care, and fight for the best that’s available.

When we came away from last week’s clinic appointment, Joe and Tom were buzzing from the whole experience. They’d talked to their specialist about anything from telling friends about diabetes, to the nature of hypos, to how the magnets in rollercoasters might affect an insulin pump. They’d been complimented about how well they’re coping with the havoc that adolescence can wreak on blood sugar levels. They’d greeted the results of their HbA1C tests with the glee that they might greet a particularly high score on a Nintendo DS game. And for all of that amazing care – helping to keep my sons as healthy as they can be – there was no charge.

It’s at times like this that I have cause to give thanks to good old Nye Bevan.

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Hi Hannah
Thought I would outline how you might go about changing your care team.
At the moment you have the right to a Patient Choice through your GP. Here is a website which outlines your choices: http://www.nhs.uk/Pages/HomePage.aspx
I went to my Gp and asked to have both my children seen at a specific alternate hospital with a team specialising in Paediatric Diabetes care. I explained what they were offering which my local team did not offer. It wasn’t quite straight forward for me, but it could be for you if you know your rights a little better than I did back then.
I think that your outline of the care you are receiving shows the areas in which your team are not supporting you. It would be worth joining an online community, like the one which is run by Diabetes UK, to ask what care others in your area are receiving and where in the country you might travel to find better support. This would help you to ‘choose’ where you might prefer to receive your care; this process works much more fluidly if you know where you want to be referred to.
The effort to be with a supportive and effective team is worth what might feel like a fight to have your rights recognised.
My favourite quote, and one which motivates me to keep teaching my children about good care, is ‘the person with diabetes who knows the most lives the longest’ by Elliot Joslin. It works in this situation for you too.
Good luck!

Hi Hannah,

Thanks for your comment. We’re sorry to hear you’re going through such a difficult time with your diabetes healthcare.

Everyone with diabetes is entitled to a certain level of care, and there are checks you should be getting each and every time you have your check-ups. You’ll find a list of them here on our site. Your healthcare team should be delivering these – however we have found that in some areas as few as 9% of people with diabetes get the checks they should be getting. We’re working hard to change this!

As for your problems with Gloucestershire PCT and their blood glucose meters… We’ve heard a lot of people complaining about this, and it does appear to simply be a cost saving measure. We would much prefer people use a meter they are happy and comfortable using, and your GP is still able to prescribe strips for other meters.

There are several things you can do to change the care you receive as you’re not happy about it. We’ve got a section on our website that outlines exactly what you can do that you should find helpful.

One of the things we recommend is writing to your PCT to complain. We’d defintely advise you do this re: the blood glucose meter issue. We know others have done this, and so the more people who make a noise about it, the more they’ll have to listen.

We hope this helps – do let us know if we can be of further help. You could also try getting in touch with our Careline – they’ll be able to give further advice on all this for you too.

All the best,

Diabetes UK

Olly / Diabetes UK – as you’ve changed your clinic due to poor care I wonder if you might shed some light on what i’m dealing with.

I’ve been diagnosed with T1 for almost 2 years, i’ve only had two foot checks and between checks I haven’t even een told what i’m looking for.
I have yet to have a retinal eye screening despite telling the hospitl at every appointment when they ask that I haven’t had one yet….

Gloucestershire Primary care trust changed my blood sugar meter without consulting me, without my consent. – The reason given was because it is £5 cheaper per box of strips per paitent to roll out to everyone in their care. – I raised this with my GP and said I was in no way happy with this but she just said “yes that’s Gloucestershire primary care trust sorry about that” – Didn’t listen to me when I tried to explain why I did not like this new meter and why I want to change it to one that I have been researching.

How can I go about changing who’s care i’m under?

I love to read about other peoples experiences. I for one am glad of the NHS. Having retired this year, I have considered moving to a warmer climate but must admit that the cost of my insulin and testing strips frightens the life out of me. I implore all fellow sufferers, don’t let this current government dismantle the great NHS, I worked as an ancilliary in this organisation and a more dedicated group of people, I have yet to encounter. Long live the NHS, may we maintain and improve the service, not sell it to the lowest cost bidder. I have seen the effects partial privatisation has had already, it only detracts not improves. Hark and listen well Andrew Lansley, the NHS is a service industry and services cost. To make it even better it needs investement.

Enough of the political diatribe, thanks to all of my support staff and my poor wife, when I have a hypo. I also thank all those other diabetics who offer without questions information about their experiences with this disease and how they cope with it.

Thank you for this lovely blog.
We moved to Kenya from the UK, and have seen the terrible impact of diabetes for families who can’t afford the treatment. Insulin costs far more than the average monthly income, and more than we, as a relatively wealthy family here can afford to subsidise it regularly to those around us. I can’t say how much being in Kenya, where people can’t afford minimal insulin, and where friends have died for lack of it, has made me truly value the NHS.

The care my son has received on the NHS has been second to none and I simply cannot praise them high enough at Barnet General for the work they have done with us and the whole family. I do not understand the US aversion to Obama’s changes- the one thing we don’t worry about with our son’s diabetes is the cost- and that would be an enormous worry otherwise to add to the list!

Totally agree..we are Brits living in Housto, Texas and have two daughters, both have type 1. Anything medically related is immediately met with ‘how are you going to pay’..rather than ‘how can I help you’.

At clinic last month, even to get in the door, we first had to pay $147 per child…and that was before talking to anyone…and so it continued throughout the 5 hours it took…mostly filling in forms and doling out cash. The total for the visit was $9700 and then the prescription was $3000. The prescription is for 1 month only and for only the insulin…all the other stuff is extra…and clinic is every 3 months..

So, you can understand when the GP’s in UK are reluctant to give out 5 boxes of test strips at a time….