Tuesday, 24 July 2018

NHS Constitution. Will the law change prescribing habits?

Is this you?
No I mean You!
This post is for anyone who lives (with MS) in or works (neuros & nurses) in England.

Also for any Americans, as I know you like your constitution stories:-)
If you live in England you must read this Constitution, because it may be the Legal system that changes prescribing habits. Getting rid of smoking in public met resistance, however once Employment Law was muted to sue employers after their workers got Lung cancer, etc. from second hand smoke, it was gone from public places. 

There are many people who are risk averse and will do nothing rather than take effective treatment. There are others that will take the chance that treatment will be better for them in the future. 

I must admit I don't buy the former attitude..

Likewise there are neuros, who belong to the "wait and see" brigade, who are happy to do nothing.
Frankly this "There, there...we'll get you a nice wheelchair" attitude is something that should have been drummed out of medicine long ago. There is now a large range of treatment options for people with relapsing MS and these options need to be explored, yet some of the armory is discarded.
I know that these do nothing/very little neuros exist in the UK and elsewhere as I have heard their opinions with my own ears, but this is not a name and shame exercise 

However, I must say that I think that our neuros (ProfG, NDG, DrK), sometimes have to pick up the pieces of some of these "laggards", as people get refereed to BartsMS for treatment not offered/given to them by others, when it is rather/too late to obtain optimal benefit.

Remember. It is not the neuro that suffers the consequence of their action..it is you!

Therefore, you must be informed. 

I write this post because last Night I went to a meeting, a hypothetical medico-legal case  was discussed (MS in the Dock/Courtroom) with a Barrister (Specializing in Medical Negligence). 

They went through a scenario (a lawyer becoming unemployed associated with cognitive decline). The Barrister demonstrated how the actions of the doctor could easily loose the country millions by simply not following the rules. 

Remember ignorance of the rules(Law) is not a defense.
Simply put. You don't know....you loose the case.

It was clear that if you live/work in England that you must read the NHS Constitution It may help you avoid the issue of the post Code lottery.


Likewise if you are a neuro, you should read it too, to avoid potential negligance claims.

Remember in this constitution "You have the right to drugs and treatments that have been recommended by NICE for use in the NHS
If your neuro fails to discuss these options they may be being negligent in the eyes of the court.

Some treatments are currently only given at specialist centres, but if you live in the sticks/boonies and medical backwaters that lack the facilities of big city/teaching hospitals, this is not a legal reason why the treatment should not be offered/available. 

Remember it is your right to get access to treatment if the NICE approves the use for criteria that you meet. Remenber for some this just means disease is active, eg. an MRI lesion.

This view could make the country become more equitable and may help places develop their MS services.

Guide to decision making

ms-decisions-aid

Maybe the Association of British Neurologists should repeat last nights exercise at their meeting and so they know if they are a laggard or not, as the Long arm of the Law may be coming their way in the future.


CoI None considered relevant , but have received honoraria from Sanofi-Genzyme, Merck.

5 comments:

  1. Mousedoctor - An excellent summary of the situation and I applaud your attitude of encouraging self help for both pwMS and those in the the NHS supporting (to varying levels - as you say) patients in the framework of the NHS charter.

    I (again) must declare vested interest - I had a non-responsive neuro for the first 2 years after MS diagnosis and I wanted something better than the annual check up and nodding that I was getting.... I got a consultation at another hospital through my GP and then after the first meeting transferred. I am now getting much better, proactive and research-led treatment, and would encourage others to explore the options.

    I think there are two further ways the blog could potentially help pwMS be more proactive in managing their own destiny:

    (1) Provide a directory of some sort of MS consultants/neuro's who are willing to take on external consultations and potentially take over care of additional patients. Maybe somewhere that docs/neuros could volunteer to sign up on and list their expertise/interests to allow pwMS to evaluate whats best for them?

    Yes, this is probably a minefield of sensitivities and a political nightmare in the current NHS framework, but worth a try.

    (2) Provide some guidance to pwMS on how to get a consultation with another consultant/neuro.

    When I did this my GP was clear that I could ask but that the best consultants were approached by lots of people and probably did not have capacity to see me, but I could try. There was also issues of my local health care region having to pay for me to get treatment from another region (we may have just one NHS, but its run as lots of small centres that are all stretched). There seemed to be clear do's and don'ts to what it was possible to ask - I recall asking for a second opinion on my diagnosis (which my former consultant took offence at and wrote me a letter justifying it - the only time he was ever proactive!). Once I had my consultation, we spent a lot of time discussing what kinds of Disease Modifying Treatments, if any, might work for me, and now some years later I'm in a place that is best for me.

    I hope someone finds this useful (especially my non-responsive former Neuro)

    A. Nonny-Moose

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  2. I was wondering what the barrister would speak about lol… was the emphasis on how much the country would lose from an inactive doctor who allows his or her patient to decline without offering effective treatment?

    The problem with MS and neurological conditions and the law is that so much is unknown you can’t actually prove that the doctor’s possible negligence (ie. not offering or discussing effective treatment) led to the outcome (decline). In other words, if the drugs are only 50% effective in controlling the disease, then the Court will look at the issue and say but we don’t know that if the person did receive appropriate therapy that they would not have declined. Any payout would be reduced as a result which is a disincentive for any real negligence claims against the neurologists. I know it’s funny that

    In other words, until you can prove that but for the doc’s failure you wouldn’t have declined, any potential financial outcome from the litigation is too uncertain and relatively unappealing for most people with MS who have other things to fight.

    Everything is slow.

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    Replies
    1. Much of what the barrister said should worry neurologists who feel they can stick to the old days, being highly selective in what they tell pwMS, or simply wait and see.

      Firstly, in civil cases, it does not have to be demonstrated that *not* prescribing DMT *has led* (without doubt) to deterioration in the individual (the smoking gun concept). What needs to be shown is that - on the balance of probabilities - waiting and seeing has materially contributed *to the risk of deterioration*.

      Secondly, this is very much about the duty of care and offering choice that *provided a pwMS fulfils the criteria* for DMT, options *have* to be discussed. Many colleagues may not be aware of the crystal clear implication of this paragraph in the NHS constitution.

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  3. Great post. When I was diagnosed some 5/6 years ago everything was a fight. I wasn't told about DMT's , MS Nurses, helplines etc. Luckily due to my professional background and general grit I was able to take stock, research and challenge. I certainly don't think its down to luck I'm still at EDS 0, self advocacy and early access to high efficiency meds has helped no end. Thank goodness for Google is all I can say.

    That said I do think there's been a real shift towards proactive treatment over the last few years which is brilliant.

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  4. I've just had a quick read of the constitution and while I agree wholeheartedly with this post, the paper refers to treatment options being based on what the doctor thinks is clinically appropriate. What the doctor feels is appropriate may differ to that of the end user and here lies the age old problem. Surely so long as eligible the patient's preference should be the deciding factor. Their body, their life, their choice and all that.



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