The ‘diabetes tax’: Some patients must pay £1,200 a year for tool Theresa May said was freely available on the NHS

Theresa May: She might get her FreeStyleLibre diabetes tool on the NHS, but her government has made sure many members of the public have to pay a fortune for it.

An apparently innocent interlude in Prime Minister’s Questions has opened up a potentially-huge controversy for the Conservative government.

Labour MP Steve McCabe noted that Theresa May uses a FreeStyleLibre diabetes tool, which monitors her condition and warns her when she needs medication. He asked when it would be freely available on the National Health Service. Here’s the dialogue, from the official record of Parliamentary affairs, Hansard:

Steve McCabe (Birmingham, Selly Oak) (Lab)

“Even the Prime Minister’s fiercest critics—I believe she has a few—must be full of admiration for the way in which she manages her diabetic condition and holds down such a tough and demanding job. I understand that she benefits from a FreeStyle Libre glucose monitoring system. Wouldn’t it be nice if she did something to make that benefit available to the half a million people who are denied it because of NHS rationing? Perhaps we could call it “help for the many, not the few”. [907106]

“I thank the hon. Gentleman for his comments. I do use a FreeStyle Libre, and it is now available on the national health service, but it is not the only means of continuous glucose monitoring that is available on the NHS. Yesterday I saw a letter from a child—a young girl—who had started on the FreeStyle Libre, but, because of the hypos that she had been having, had been moved to a different glucose monitoring system. There is no one system that is right for everyone; what is important is that those systems are now available on the NHS.”

Technically, she was correct and the FreeStyleLibre is available on the NHS.

But, thanks to Tory meddling, its availability to people with diabetes is based on a postcode lottery.

You may remember that Andrew Lansley’s hated Health and Social Care Act of 2012 imposed Clinical Commissioning Groups on the NHS. These are local organisations that decide which services should be available to patients in their areas, based on the amount of money that is made available to them. The creation of CCGs was justified with a claim that GPs would serve on them – but in fact GPs are far too busy and the work seems to have devolved to businesspeople.

Unite the Union surveyed the 3,392 CCG board members in 2015 and reported that 513 were directors of private healthcare companies: 140 owned such businesses and 105 carried out external work for them. More than 400 CCG board members were shareholders in such companies.

As a result, trust in CCGs’ ability, or indeed willingness, to provide the best-quality healthcare their budgets can afford is low. It seems the bias is more likely towards offering private firms the contracts they want, in order to appease shareholders who sit on these groups.

The FreeStyleLibre – together with those who use it – appears to be a victim of this system.

While it is nominally available on the NHS, as Mrs May claimed, it is not available to huge numbers of NHS patients because the CCGs in their area simply haven’t offered to pay for it. Instead, they have to fund it themselves at a cost of £100 per month.

That’s a “Diabetes Tax”, if you like, of £1,200 per year.

This information comes from a segment of the BBC’s Politics Live that I was lucky enough to notice:

Here’s the clip the programme put up on Twitter, in which Type 1 diabetic Tessa Nejranowski destroys Mrs May’s claim:

So there you have it:

Mrs May lied to Parliament. FreeStyleLibre is not available on the NHS – at least, not everywhere in England – and where it is not, people have to pay £1,200 a year to have it privately. That’s a “diabetes tax” imposed on people with the condition by the Conservatives.

And it’s about as strong an argument as any for the dissolution of the CCGs and the repeal of the Health and Social Care Act 2012. But you’ll have to wait for a Labour government before that happens.

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13 Comments

  1. patrickdaly472010 October 18, 2018 at 1:16 pm - Reply

    Actually its available in Wales but you need to be referred by a diabetic specialist, Ive just had one fitted with about 20 other people.

    • Mike Sivier October 18, 2018 at 2:32 pm - Reply

      Wales still has a proper National Health Service. It’s only England that is blighted with CCGs. Health is a devolved responsibility, remember.

      • patrickdaly472010 October 18, 2018 at 3:12 pm - Reply

        Ive had major health treatment both in Wales and England, my mother lives in England and we both have heart problems, believe me, I am getting far better treatment and help here.

  2. Kitty S Jones October 18, 2018 at 1:27 pm - Reply

    What with the diabetes tax and sanctions, the Tories seem to have it in for people with type 1 diabetes. https://kittysjones.wordpress.com/2018/10/13/welfare-sanctions-are-killing-people-with-chronic-illnesses-such-as-type-1-diabetes/

    • Mike Sivier October 18, 2018 at 2:31 pm - Reply

      Yes, I was looking for this article in relation to a comment a couple of days ago. Thanks for the link.

  3. Jane October 18, 2018 at 2:09 pm - Reply

    I hvae been paying for my son ( now 18) to have the Libre for almost 4 years. It has made the unimaginably hard task of being a diabetic teen much much more manageable, saving the NHS money both now and in the future when he hopefully won’t have such severe complications because of the better control it affords him.
    However, because we live in East Sussex, it is not on prescription, even though it is in West Sussex!
    As he is an apprentice, he cannot afford his own so I must continue to fund this indefinitely.

  4. Doreen Ross October 19, 2018 at 2:55 am - Reply

    I am a diabetic type 2 and no way could i afford anything like that on my pension. but i do agree CCG’s do need abolishing. I am also an asthmatic with COPD among a load o other things and when things go wrong one condition will affect another,they stopped our rescue meds earlier this year. and although ive not needed them for the last 2 years but sods law came into play and this week i needed them. my chest infection got to the stage where i would normally start to take my rescue meds, asteroids and antibiotics. now i have ti call the Drs surgery and go see someone before they’ll prescribe them for me,in spite of having self treated my asthma for around 25 years with the help of rescue meds and my COPD for around 12 years ditto. what happened this week could quite easily have killed me. i have spinal spondylosis too which makes walking not so good usually and i have to walk with a walking stick and push my shopping trolley to help me get further. on Wednesday i phoned my Dr for an appointment but only got answerphone. it was a training day. i tried the other surgeries who take part in a scheme with my Drs where if you cant get an appointment with your own surgery you can ring round the others to try get in with one of them….weds… all were having training days. rang 111.. given a phone number for a surgery i was told was at Chickenly, a large housing estate not that far from me. maybe a £3 taxi fare only possibly less. when i rang though was told they were at Batley……..some 4/5 miles from me.but wouldn’t treat me anyway as im out of their area. useless 111. so i had only 2 choices.i knew that waiting for surgery opening next day was not a good idea, i know what stage i was at and what could happen if treatment was delayed much longer., calling an ambulance i didn’t want to do,i didn’t think i needed A&E at that point so i rang my daughter to go with me to the walk in centre in the town i actually knew.still a taxi fare of £9.50 each way. got there about 2,30 pm. taxi dropped us at a spot a good 10 mins walk from the centre for normal people plus its a slight slope which to me in my condition felt like climbing Everest with numerous stops to get my breathing slowed down. nearly 3 hours later i got to see a junior male nurse practitioner who couldnt prescribe and spent 20 mins of the 40 mins i was in there, in the next room talking to a more experienced nurse practitioner deciding if i was bad enough for the meds i needed. the senior one finally wrote prescription for me. but by that time all but supermarket chemists were closed. i only made it halfway to the nearest one and had to get a cab to go the few minutes round the corner to Sainsbury’s chemists. my daughter got my prescription wile i waited in their cafe. what nearly killed me was when he took my blood pressure it was up at 158/91.. 2 weeks ago irt was only 110/60. normally its never very high, 130 /80 being highest. it could only be the stress of having to walk up that slope/ sit in a room full of snotty nosed kids. not the place i should have been in at all ever never mind while ill. and i was very stressed out by it all. and i still had to try get to a chemist afterwards BEFORE I COULD GO HOME. I’M JUST HOPING MY BLOOD PRESSURE HAS GONE DOWN NOW, MY BLOOD SUGARS HAVEN’T,. STEROIDS SEND THEM SKY HIGH. BUT ITS BETTER ITS THAT WAY FOR A WEEK THAN GETTING PLEURISY OR PNEUMONIA. or worse..BUT SUCH A HIGH BP COULD HAVE CAUSED A HEART ATTACK OR STROKE. ALL BECAUSE ALL 25 SURGERIES In OUR AREA WERE HAVING A TRAINING DAY. BUT ALSO ALL BECAUSE MY RESCUE MEDS WERE NOT ALLOWED TO BE KEPT AT HOME(THESE CHEST INFECTIONS LOVE TO PICK A TIME WEEN ITS HOLIDAYS/WEEKENDS OR AS ON WEDS NO SURGERIES ARE OPEN. BUT ULTIMATELY ITS THE CCG COMMITTEE WHO STOPPED THEM AND I’M WONDERING HOW MANY ASTHMATICS HAVE DIED SINCE THIS WAS BROUGHT IN SIMPLY THROUGH NOT BEING ABLE TO TAKE MEDS AT FIRST SIGN OF THE INFECTION STARTING

  5. Doreen Ross October 19, 2018 at 2:56 am - Reply

    steroids not asteroids.lol.

  6. Jeffrey Davies October 19, 2018 at 5:16 am - Reply

    hmmm.Technically, she was correct and the FreeStyleLibre is available on the NHS.
    yet did she claim its monies back so that we the tax payers get to pay if she did have to pay

  7. hilary772013 October 19, 2018 at 9:13 am - Reply

    Mike I have been at loggerheads with my CCG, they have withdrawn my thyroid Liothyronine medication which an endocrinologist prescribed after having a full thyroidectomy, I am now having to purchase my meds from Mexico at a cost of £90 per 300.
    I have just received a letter with my Tramadol painkillers telling me that they don’t work anymore also stating that as strange as it might sound we don’t think they are very good at killing pain at all when taken for more than a few months. We are particularly talking about painkillers in the opioid class
    I have also been diagnosed with onset vascular dementia caused by strokes and am unable to take medication for my arthritis & fibromyalgia as they affect my brain, so the only relief from pain are my tramadol, now they want to take that away from me as well.
    I fought my CCG tooth & nail about my thyroid meds’ to no avail even sent them the latest recommendations from the British thyroid association & NHS England that they shouldn’t be removed from patients who are benefiting from them. CCG response was that all GP’s & consultants are not allowed to prescribe them & if I was still unhappy to get a referral to see a consultant to review my case but there was no point in doing that if they are not allowed to prescribe them.
    Now this, it beggars belief. I am raging

  8. Christine Bergin October 19, 2018 at 11:59 am - Reply

    Amazing how the wealthy use the N H S.Cameron used it for his disabled son and this woman uses it for her convenience and yet they profess to not liking ‘free at the point of need’ healthcare. they certainly dont like funding it.

  9. Michael Harvey October 19, 2018 at 7:51 pm - Reply

    Not available in North Yorkshire and not even being considered. I have type 3 having had my pancreas removed and my grandson has type 1. She should stop flaunting the devise until it is made available to all type 1 and type 3 sufferers for free on the NHS.

  10. John Merron October 20, 2018 at 10:59 am - Reply

    The crazy thing is, if doing blood test 10 or more x per day using blood testing strips (as a a patient on a pump is advised) it would actually work out cheaper to have flash monitoring device.
    About time The CCGs saw sense and made them fully available.

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