Topping-up the NHS with private prescribing


“At the MS Frontiers meeting, last week, one of the MSers dropped a
bombshell in a trial meeting we had. He believes that if MSers want access to new
and expensive DMTs and they don’t fulfill NICE guidance for these treatments
then they should pay for these treatments privately. If they can’t afford them
then it is simply bad luck. He highlighted that the rationing that occurs in
the NHS is denying some MSers access to drugs they need and should get.”  

“This proposal has become a reality in oncology; NHS
oncologists are now able to administer privately funded drugs in NHS units
without any additional costs to the person paying for the treatment.  This practice was not allowed in the past.”

am not sure how many people have taken up the option to receive private
medication under the NHS. You may be interested to know that this is already
happening in the field of MS. Fampridine is not being funded by the NHS, but we are allowed
to give private prescriptions to individuals who can pay for the medication

“What this practice signifies is the end of socialist
medicine in the UK as we know it. We now have a two-tiered system with the haves
and have-nots. If you can afford it you get the drugs you need; if you can’t
afford it there is still the safety net under the NHS, i.e. access to rationed
therapies if you fulfill NICE guidelines.”

“This MSer suggested that my aggressive treatment paradigm, or
treat-2-target of NEDA*, should be funded in this way.”

“I would appreciate your comments on his proposal.”

*NEDA = no evidence of disease activity

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • Thin end of the wedge. Nice shpould be making the new effective treatments available foe MSers now. Access should not be dependent on the ability to pay.

  • The worry here is what happens when the drugs you are receiving are superseded by a new drug. Realistically though, I currently receive Tysabri and was shocked how much it costs the NHS. I am 52 and could not afford it personally but is it really reasonable or pratical to carry on receiving it for free at a time when I cannot work so am only paying a small amount of income tax.There will come a time when hard decisions will need to be made. Expensive upfront treatment to cure someone is one thing, but on-going treatment to maintain a patient in poor health is not sustainable. We are all praying that stem cells treatment is the wonder cure before economics is the death of us all.

    • This is exactly right. The current drugs comming out will soon be superseded by newer drugs, none of which actually have any effect on the root cause of the disease.

      Financially it will make more sense to undergo a onetime procedure such as HSCT to halt the disease. But this does not bode well for the pharmaceutical companies or the researchers tied to them such as the ones administrating this blog.

    • Re: "But this does not bode well for the pharmaceutical companies or the researchers tied to them such as the ones administrating this blog."

      The only pharma company I am tied to is MouseDoctor's; I have been given share options in the company in lieu of time I have given them to help them launch a successful anti-spastic drug for MSers. My involvement with other drug companies is mostly on an ad-hoc basis as a consultant. My disclosures are transparent and available for all to read.

    • Oh yes…. my pharmaceutical company……eight years of my life for a University Spin Out with no full time staff and not a penny in my pocket, numerous hours a week spent on this, no papers no company jollies. ….surely that will change won't it?

      I had not linked this activity to being a pharmaceutical company in my mind…..but I stand corrected…it is however disclosed.

      I am in the Devils pocket of Pharma …..Argh does this mean I will rot in Hell.

  • Its not really free if you work/worked here and pay your tax and NI. I think its shocking its going down this line and I dont believe for one min the country cant afford to pay the treatments, just propaganda. They soon pay out for wars.

  • What NICE don't seem to realise is that in the case of Alemtuzumab, if used early enough in the disease course, there is a very real chance that the disease may be stopped completely. To deny people the chance to go on this early rather than fail on the conventional DMTs first is completely misguided.
    Surely someone has done a cost/benefit analysis for a drug that might stop MS in its tracks and if they haven't they should.

  • This 2 tier system is being aggresively pushed through in all area's of the NHS and not just accessing MS drugs.
    As MD2, Patients should not be treated on their abillity to pay nor should be discriminated against either, for their lack of finances.

    The argument of fitting the Nice Guidance is interesting, surely if the treatment is not the right fit fot the NHS and Patient then it shouldn't be available for payment in the Private Sector, otherwise I can't see the difference between this and other so called forms of 'cashing in'. ???

    Treatment should solely be based on whether it will improve a Patients condition not the amount of Bucks in the wallet.

    Privatisation is being forced upon the British people without the mandate to do so.Waiting times are increasing, access to effective drugs are being denied all in an attempt to force people who can, jump queues and have even the most staunch Socialist question whether there is a better way.

    Believe me finding insurance for expensive pre exsisting conditions is non existant, so let the NHS go down this route at your own peril.
    We are all aware of the funding arguments, but the National Debt is being used to push through right wing policies.
    If this continues, Stem Cell Treatment (when approved), I'm afraid will NOT be available on the NHS !!!!!!!!!!!!!!!!!!

    Regards as always.

  • There is surely a slight difference between some of the newer MS drugs and cancer drugs. A number of cancer drugs that NICE has not funded are exceptionally expensive and unfortunately only prolong life for a few months in some cases.

    If a treatment does come along that renders an MSer into a state of NEDA, it would seem incredibly unfair to not fund that when so many non life enhancing treatments are funded.

    I hope that part of this issue is that interferon, as the original standard treatment, has seemed to be extremely expensive for relatively small gains on paper, and perhaps no benefit on disability if you believe certain studies. This may have then tarred newer treatments with the same 'expensive' and 'somewhat ineffective' brush.

    I think certainly that this would be a very slippery slope, however I could see it being useful for some who want to get on treatment early whilst NICE ponders for too long as usual.

    One question – were private treatments for MS not always available? Or is what we're talking about being ok'd here the use of money for facilities, nurses etc to be provided by the NHS, but the drug bill being footed by the patient?

    Also would the drug companies provide the drugs in access schemes for individual patients at a cheaper price, as they do in the US?

  • I had always understood that neurologists could provide Tysabri (and soon BG12) by private prescription. Is that not the case?

    • Yes, neurologists can provide private prescriptions for most drugs. The difference in the past is that you were not allowed to administer privately prescribed drugs under the NHS; they had to be given in the private sector. You also could not look after the same person in the private and state sector; this was to prevent a conflict of interest. This has now changed; you can prescribe drugs privately and administer them under the NHS with no extra cost to the person concerned. This is a philosophical change.

    • Thanks.

      This concept sickens me. On the other hand, it probably doesn't make much practical sense from a consultant's perspective to deprive somebody of something like Sorafenib (or perhaps even Tysabri) if they can afford it.

  • So maybe we should provision our tax returns accordingly by withholding a chunk of it for undelivered service!

  • Socialism is dead; the NHS is unsustainable. The government should make top-up payments partially tax deductable to increase their uptake. Hopefully, people living in the UK will then get a better deal when it comes to healthcare; people who can afford private care will be freeing up resources for people who can't afford it.

    • Here's an idea. How about the UK's wealthiest individuals and corporations pay thir tax rather than seeking to weasel out of their obligations by squirrelling it away offshore in tax havens via dodgy accountants. I think you'll find there'll be more than enough to keep the NHS running in perpetuity.

    • Today, however, in a world where our reservoirs of wealth are as deep and enormous as all the mighty rivers of the world combined, our politicians, financial institutions and megalithic industries tell us we can no longer afford these human rights that men sacrificed their lives for: the freedom to live with dignity in a compassionate society. We are told by those in charge that we can no longer live with luxuries like healthcare, proper state funded pensions, decent wages, trade unions and most aspects of our social safety network.

  • Clement Atlee's biggest mistake was not doing away with private schools in Britain. As a result, a two-tier system always existed in education, which has forever threatened to encroach in other areas of social concern. We're now seeing that to get the best of anything one must pay privately.

    In all honesty, if these drugs are so wondrous then the MSer should be able to take out a loan for the latest DMT that is underwritten by Big Pharma. If these drugs work then it will result in continued employment for the patient and they can then pay a monthly cut from their wages. Just a thought.

    • Even if you get back to work you won't be able to afford these treatments without insurance, not unless you are among the highest bracket earners

    • "Clement Atlee's biggest mistake was not doing away with private schools in Britain."
      An interesting point Dr Dre, it's also illuminating that there is no private education in Finland and yet it is consistently at the top of educational achievement rankings.

  • Prof G this is an excellent post and obviously touches a raw nerve. To most Britons the NHS is their sacred cow; touch it and threaten it at your own peril. It would be great if you could debate these issues more often. I am not sure what the future holds for the NHS, but this issue is very real and relevant to people with MS.

    • Re: "To most Britons the NHS is their sacred cow."

      I am not sure about this; the major political parties are hell-bent are changing and destroying the NHS in its current form.

      About the only "scared cow" or "untouchables" left in the UK are Bob Crow and London Tube Drivers who belong to the RMT.

  • Ethically, this is a minefield
    1. We have an NHS where everyone should be treated equally regarding drugs, whether or not they have the ability to pay
    2. A dog in the manger attitude. If I can't afford the drug then you shouldn't be able to have it, even if you are willing to pay for it.
    If NICE were to take into account the long term effects of MS re loss of employment and thus tax revenue, together with the cost of care and welfare payments, they might be more willing to fund expensive up front treatments such as induction therapy alemtuzumab

    • Re: "A dog in the manger attitude. If I can't afford the drug then you shouldn't be able to have it, even if you are willing to pay for it."

      This is a difficult position to take from a clinical perspective; as a doctor I have look after individuals. How can I say no to someone who I think needs treatment X and NICE says no? What I will do, however, is continue to be an MSer advocate and to lobby NICE and the NHS to fund treatment X.

      I agree that this is a slippery slope for the NHS, but the government has deliberately put us in this position.

  • There was a bit of a controversy here in Belgium recently concerning a boy (Victor) with a very rare disease for which an excellent medication (Soliris – Alexion) exist that costs € 18.000 monthly. The question of course being whether it is reasonable for the NHS here to pay for it (it was later revealed the pharmaceutical company leaked the info themselves to put pressure on the government to get it payed back).

    I post this story here because it raises analogue questions about the sustainability of costs of ever increasing individualized future medication. (The minister approved the reimbursement eventually. (& rightly so I would add, but it does raise questions).

  • Prof. G how does it work getting private prescriptions filled under the NHS. Who processes the prescriptions? An NHS or private pharmacy? How are patients charged?

    • Re: Who processes the prescriptions? An NHS or private pharmacy? How are patients charged?

      I think they are processed by private providers and the patient pays personally. More on this tomorrow. I will try and find an example for you.

  • Say NICE refused to fund alemtuzumab, but you could give a private prescription for it. Who would pay for the hospital inpatient time for the infusions, the additional IV steroids and other drugs given during that time, and the continuing monitoring afterwards? They could add to £1,000s more on the bill, unless the NHS takes into account how much you would be saving in not having other DMTs which you would be entitled to over the years.

  • Will any of the UK private healthcare insurers pay out for drugs that are licensed but not NICE approved? Or for indications that are not NICE approved?

  • MS patients in UK are all being exploited via 100s of thousands all for MONEY via profits, shares and commissions, very high salarys for lavish lifestyles whilst the MS patients suffer at their hands of legal drug pushers . If the drugs were NOT legal they would all be jailed for mass murders

    • Yes lets get rid of all licensed drugs and rely instead on herbal over the counter treatments that of course have a far superior benefit risk profile compared to licensed medications according to Dr Quak's treatment guidelines!!
      Time to take a reality pill I think 🙂

    • Did you know there are different fonts that can be used on the blog. There is: arial, verdana, courier, Georgia, helvetica, times and trebuchet… oh and there is one other. This is in lower and part upper case. It is called Troll.

      I usually spam that one but must have missed it.

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