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Claims for privately funded drugs

I am the sister of an MS sufferer and am looking into trying to claim back the £20,000 it cost my brother to fund beta interferon privately when he was first diagnosed with relapsing remitting MS. This was due to the postcode lottery and the withdrawal of supply on the NHS in this region awaiting the decision of NICE (1999). Has anyone tried to reclaim for anything similar? Any body on the forum with legal experience who might be able to assist?

On what would he found his claim? If NICE had yet to approve it, there was surely no legal obligation on any health authority to fund it? Presumably if they had funded it, it would have been on a discretionary basis, and I do not how you can sue a party for failing to do something that was discretionary anyway. Unless, perhaps, you could frame some sort of discrimination case, by showing that the same authority did fund other patients in similar circumstances.

I speak as someone professionally legally trained (some time ago) but non-practising. You have to show there was a duty before you can sue anybody for the breach of it. If NICE had not yet reached a decision, I don’t see where the duty comes from.

Sad, I know, and I’m not unsympathetic to your brother’s case. I’m just looking at it in purely legal terms: where was the duty to him that they breached? If he’s not alleging breach of duty, what is he saying they did wrong? They could have “been nice” and funded it. They decided not to.

Unfortunately, the law doesn’t say people have got to be nice - only that they’ve got to fulfil their legal obligations. So what was the legal obligation that meant they should have treated your brother, even though NICE had yet to rule on it? I.e. what was the legal source of the duty he feels was owed? He certainly didn’t have a contract with them, so contract law is out. That would mean we’re looking for some kind of negligence. You can only show negligence if you can show there was a duty that was breached. No duty = no breach = no negligence.

It would appear you/your brother don’t have a solicitor. Rather that trying to get legal advice from a forum, why don’t you seek out a solicitor specialising in medical cases, who offers a free initial consultation? Most of them now do!

They’d be able to tell you straight off whether there’s any possible grounds for a claim, or whether it’s dead in the water. I certainly wouldn’t recommend DIY for a claim of this nature. If you were talking about a faulty toaster would be different!

Tina

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I agree with Tina. To be in with a shout, you would surely have to show where they failed to comply with their duty under the law as it stood at that time. I am not sure how the law stood at that time, but I expect that you do. I do remember those days, though - I was dx in 1999 and I remember writing a desperate letter to my MP about access to DMDs. Those were tough times, no question. I was able to start on Avonex, at the NHS’s expense, in 2000. If it had not been available, I would have tried to self-fund.

It is a good idea to post here, in case anyone else has had a go at suing for breach of contract and got anywhere. But I doubt whether anyone has.

Alison

Oh, and one more thing: even if they did do “something wrong” you are well outside the usual six-year limitation period for claiming, unless you can show there is some very good reason why your brother has only just discovered what happened to wasn’t right.

“Very good reason” doesn’t usually include being ill, or just not having looked into it sooner. Has something only just come to light, that couldn’t have been discovered earlier?

Tina

The local authority were funding treatment for MS, but when NICE decided to look into its ‘value for money’ the authority withdrew all funding pending the outcome, which took two years. Just after they withdrew funding my brother became diagnosed. There was no other drug at the time available and beta interferon has to be administered in the very early stages of the disease. My brother was assessed at the time by a world renown expert in MS who said he most definately was a good candidate for beta interferon. Many other authorities continued to fund MS treatment regardless of the pending NICE review. Was my brother not victimised because of where he lived (postcode loterry). Did the LA not have a duty of care to treat him based on the fact it was the only drug in town with strong evidence that it had a 30% chance of slowing down the disease. Some cancer drugs for example give far less percentage than this for slowing down or prolonging life. The LA said there was a waiting list for MS patients who would be considered for the drug if NICE recommended it, but nobody had been prescribed the drug since 1995 ( this was 1999). When my brother tried to find out where he was on this list the shutters came down and he was told he did not fit the criteria to even be considered, when we have several signed letters from a professor of neurology, specialising in MS who said he should be on the drug. There were four different people who held the post of CE of the LA in an 18 month period so it was difficult to get any kind of progress as we had to virtually start again with each one. This goes some way in showing the LA were incompetent and had no proper leadership to handle complaints and appeals and provide information on what care they could offer my brother or were going to offer him. The recommendations from the government were that LA should continue to fund and treat patients pending the NICE review. Nobody knew at the time they would take two years. My brother has remained off benefits and in work, although he is now struggling a little, which proves the drug works. Did he not have a right to be treated by the NHS with whatever drug was available, when there was one available and only one. Did the others authorities not set a precedence with how the drug should be funded and how people obtained this on a fair, assessed system. The LA clearly had no system in place and were hiding behind the pending NICE decision. They could not prove there was any transparent system in place for treatment of MS patients in this area. MS clinics were in fact held in Nottingham, not Derby as they had no specialist team of any kind at Derby.

Is the six year limitation for claims of negligence? The reason I am looking into this now is that our mother has recently died and we did not want to drag this all up again while she was alive as we know how upset she was in the way she felt the LA had neglected her son. I notice that LA are now allowing claims for those that had to sell homes to care for their relatives going back some years (cannot remember how many but thought it was more than 6). My brother had to sacrifice to pay for his care, his life savings for example, no holidays, his young family had to do without, etc. Is this not the same thing? The government had a duty of care to look after the sick and elderly, but did not and so they had to self-fund. They now say they should not have had to self fund?

What about the courts of human rights? Is this a possible path do you think. Every British citizen has a right to be treated ( regardless of cost as our country has free health care) particularly for someone who has paid taxes and NI all his working life?

I really appreciate any advice (positive or negative) and your thoughts, it’s a minefield I know but I am not one to give up easily!

Well, you have confused the heck out of me.

Was it the Local Authority (normally LA) that stopped funding or the relevant local Primary Care Trust (PCT)?
(I did not know that LAs funded medication.)

If it was a PCT, since they are now gone, the question would be “who do you claim against?”

If it was an LA, then you should surely look at a claim against the Chief Executive who was in post at the time your brother was told that he did not qualify for aid. Now it starts to get tricky …
By funding medication initially, it could be considered that they had already decided that he did qualify.
if they subsequently reversed that decision despite medical evidence, then you should consider if this amounted to “Maladministration”.
If that is the case, perhaps you should contact the Local Government Ombudsman at

They will, at least consider the facts impartially.

Geoff

You may feel there was a moral duty to continue treating - having started - however, a moral duty, in most cases, does not create a legal duty. Although morality and the law do overlap, they are not the same. Something can be unfair or even wrong, without necessarily being illegal. As far as I can tell (without having researched it), there was no law at that time that meant they had to continue treatment, once started, or indeed that they had to treat anybody in the first place. This is what I mean about “no duty”. You cannot use the law to force someone to do (or retrospectively get compensation for not doing) something that was voluntary in the first place.

No, I’m afraid there was/is no right to be treated “whatever drug was available”. You will see that, if anything, there are now even more drugs “available” (as in: exist in the world) than are NICE-approved (for everything, not just MS). The mere existence of a treatment does not create a legal right to receive it - unless NICE (the equivalent of the law, in this respect, being the body that decides) had declared that it should be available.

In any case, I fear this will all be academic, as not wanting to upset a relative will not be a valid reason for waiting 15-16 years to pursue any claim. No matter what category of law you tried to claim under, it is very unlikely a claim would be countenanced so long after the events. The only exception would be if some crucial piece of evidence had emerged within the past six years, that you could not possibly have known before. However, the main use of this is when somebody gets ill a long time after the events that caused it, so could not possibly have known about the harm at the time. We had an example of this in my own family. My father got a rare and terminal disease caused by asbestos, more than 40 years after occupational exposure. Obviously, he could not possibly have claimed within the six years, as he had no way of knowing he had been harmed - the “incubation period” is decades.

Clearly, in your brother’s case, he knew about the “harm” (the money he had to pay) as soon as it happened. There is no possible argument that he could not have discovered until recently (within the last six years) that he lost out.

My legal training was long ago, and I have since got ill, so my memories of how it works with the ECHR are hazy, shall we say. I can only say that you may have to show you have unsuccessfully sought a domestic remedy first, and there is probably also some kind of limitation period, though I don’t know offhand what it is. Having waited 15 years to act is likely to be a fundamental sticking point under any law that might otherwise apply.

For peace of mind, book a free initial consultation with a solicitor. My belief is they will tell you straight away there is no chance - which is not what you want to hear - but at least you will have a clear answer about whether there is any way forward. If I’m wrong, and there aren’t two fatal flaws (that the health authority didn’t have a duty in the first place, AND, in any case, that you’ve left it too late) - all well and good. That’s what they get paid for, and I don’t!

As I’ve said, I’m not practising, so no answer I can give you is “legal advice” - it’s simply my prediction of what would happen if you did put it in front of a lawyer. You wouldn’t have to pay just for a preliminary opinion, so what do you have to lose? I might be wrong - put it to the test! At least if you’re told no, you and your brother can move on. Not happily, perhaps, but you will know you asked the question and got the answer - you won’t be left always wondering if you could have got the money back.

Tina

Geoff, there is surely some kind of legal accountability golden thread running through all this tangle - accountability for possible public sector misdeeds in the past cannot disappear in a puff of smoke every time a government shakes the pieces around yet again. Definitely one for a solicitor.

Alison

By local authority I meant the local health authority at the time, which as you say is now defunct. My understanding was that at that time it was certainly the CE who made the decisions about funding. I have looked at the ombudsman route and still intend to try this. However, as Tina has intimated I may have left it too late, but we were methodical in keeping copies of all correspondence and notes of meetings. My feeling is the LHA at the time were incompetent and based their decision not to consider my brother for beta interferon because they said he did not fit the criteria, so never even went on the waiting list. We have confirmation from the MS specialist (Neurologist) that he most definately did fit the criteria and recommended he be given the drug, they failed to acknowledge this. My brother would have needed this recommendation from the consultant even to fund this drug privately. Drugs are not given out even if they are privately funded to anyone that can afford them.

Alison’s point about somebody being accountable at any time for mis-administration surely is a worthy one. The fact that four different people held that post in18 months around the time our battle was going on says something I think.

Thank you so much for all your comments…

Alison B

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Montygoo,

lf you could go down the line of the ombudsman - l think it is well worth a try. lt is still a post-code lottery for all sorts of treatments.

Best of Luck