We have seen such a torrent of posts here, it is truly awful.
Is there any possibility of funding an emergency judicial review - or whatever other legal processes might be available?
From what I have read, some of the statements are without medical or scientific justification. Someone needs to be able to challenge those making such statements with sufficient force that they have to withdraw them and be seen to have issued them from ignorance. The law seems the only possible route.
Yes...it's shocking isn't it Helvella!
The Pernicious Anaemia Society are working with medical health professionals / PA medical researchers and are making representations and presenting evidence at the highest levels (U.K. Health Ministers and other recognised medical governing and professional bodies).
So, the statements about, and current proposals for, the treatment of B12 deficiency during the coronavirus crisis are indeed being challenged.
From what we've seen in the forum over the years, it is apparent how little many medical professionals know about Pernicious Anaemia and B12 deficiency. To see this lack of knowledge replicated and disseminated from the highest levels is...well...shocking beyond words. So I'll stop now!
Outcomes, changes to current advice and/or proposals for further action will be posted here as soon as able.
Thank you from all of us for caring 🙂x
Thank you. I tried to reason with my surgery to no avail. I am going down the self injecting road. cannot cope with this.
I know the PAS is doing what it can, I know discussions and representations are ongoing, and I am pleased that is so. (Well, as pleased as I can be until they are completed as PAS being successful.)
But I am now firmly of the conviction that the law is the only possible answer at this stage. Anything else could be ignored, missed, or just not adhered to.
A high or supreme court judgement saying that those who need them MUST get B12 injections would be of immense power in persuading individuals everywhere. Or forcing them to answer to the court.
I think that’s a good idea and also there should be something done about the lack of understanding by so called professionals of the thyroid and withholding liothyronine when so many need it especially if they have no thyroid and we have to fight to try and get it. This definitely needs to be challenged as well. The only two replies to their reasoning is it’s too expensive and can cause heart problems and osteoporosis..
Or have a letter formed that everyone sent to their mps ?? Uniformly
Given the current non-functioning, shortly (we hope) to be followed by limited functioning, of the House of Commons, I don't think there is the remotest possibility of it making a difference in an acceptable time period.
Definitely not meaning "Don't write to your MP" - just don't hold your breath.
No I realise not possible in the time frame. I'm thinking ahead of when hopefully this crisis has ended.
I have actually sorted my personal treatment. It has not been easy at my surgery. Alot of hrlo from here to get own supplies that I never thought I would do. But glad I have.
I'm thinking of the time when others will have great difficulty getting their injections back.
It will probably be reviewed by a blood test!!!!
My brain is slowly but surely 'waking up'
I had a vivid dream of an event /playback if you like.
Of who I am.
I was marching in Manchester
Must've been 1988
It was about
Clause 28
The first feeling of a little normality of who I am. It was a dream of an event that happened and the sort that brings back how you felt ar the time.
'A fighter'
I cant 'wake up too quickly as I get headaches .
But it's down to b12 injections
Not tablets of any strength
Shrug your shoulders and order from Germany.
The medical profession closes ranks, lawyers cost a lot of money.
We have been with two medical practices that are not operating according to the published guidelines; the inexpensive route for us to go down, if we had to care about this, would be to make a series of FOI requests at several levels within the local health services, up to county level, and expose the disconnects between the recommendations and the actual treatments given (or not given, in our case).
But for what? At best, to maybe embarrass them into giving two-monthly injections. More likely, to get a coded message of ‘troublemaker’ written into our medical records.
We are currently SI-ing on a monthly basis, and recent heavy activity has seen doses last as little as two weeks.
So even if we got the best recommendations implemented for ourselves, we’d still need to SI in between.
So we just cut out the middleman, make all the injections SIs, choose exactly when and where; doesn’t cost a lot, and probably cheaper to do it at home than take time off to go to the practice.
Lockdown or no lockdown; but probably safer at the moment to stay home and do it, rather that risk the COVID-19 floating about out there.
If you are able to purchase your own and inject yourself, it is a sort-of answer.
If you are no longer able to order from Germany, for whatever reason (it appears at least one possible supplier will no longer send to the UK), maybe can't self-inject (whether for physical or other reasons), you are being put in an impossible and unacceptable situation.
Of course it is easy if you have a stock of ampoules and are happy and able to self-inject.
A single Court of Protection application might be sufficient to establish that the current approach is unsupportable. I do not know enough about legal processes. But it is quite possible that a suitable lawyer might offer initial advice pro bono.
Are you trying to arrange this for someone who lacks mental capacity? Otherwise, it would be outside their jurisdiction:-
en.wikipedia.org/wiki/Court...
But even if you are, it would be a shame to get such a limited ruling, when there are so many people with PA who do have mental capacity, and would benefit from a wider one.
Apropos of not wanting to SI, we started by going to a private practice; after an initial consultation at £90, further injections were £25 a time. We could have kept those up, but once having been taught to SI, we can do it ourselves for less than £1 a time.
No - I am seeing the issues people are having and trying to think what could be done.
If one person had a court order that B12 injections are required to be given, indeed CoP is for those who cannot make their own decisions, then it might serve as a device for applying pressure on others.
As SnappySam replied, a Letter Before Action might be a good approach, but the ability to include some sort of precedent (albeit not a formal legal precedent) might bolster the letter.
Hi helvella.
Your heart is in the right place but your hopes are way too high.
Government policy isn't something that's going to get changed. That's just my opinion based on having challenged Government legislation and being met with judges making sh*t up in order to preserve the status quo.
But that does not preclude the legal process being utilised. I have made a few posts on here saying how I might deal with a situation (apart from buying the B12 online), and I suggested a claim against the medical centre/surgery/doctor would possibly force a result.
Individual circumstances will dictate how you would go about it, but as a general guideline most authorities (and businesses) will not fight a small claim to the bitter end - it's sometimes more expedient to settle it and they often do. A claim against the practice/doctor/receptionist/nurse would be totally unexpected and difficult to deal with. But it would ultimately be defended at the very top - if it went that far - which it shouldn't.
Your best friend is the 'Letter Before Claim', wherein a threat of legal proceedings is made unless they sort it to your satisfaction. If there has been some sort of maladministration you have a foothold, so make the most of it. If not then you will need to quote studies which counter the guidelines and show why you need B12 more regularly.
If a practice manager received a well worded threat of legal action there is some possibility they would decided that you did need the B12 on a more regular basis after all.
Having being involved with numerous legal issues over the years, winning has often hinged on their error or wrongdoing. It is amazing just how unprofessional some professionals can be, and that's the best place to pin it down and kick it to death (if you'll pardon the analogy). Spare no feelings and make them feel guilty as hell.
If you tell them you intend to cause trouble they may decide to spend the extra 60p.
There are ironies in every direction (and that is probably using a kind word).
Wales is choosing to rollout a monthly injection, now, for recovering drug addicts. OK, so the alternative was attending daily and it is perfectly possible that a monthly injection entails lower overall risk.
But if the procedures for injecting Buprenorphine can be made at least adequately safe, why not for B12?
A new drug for recovering heroin addicts is being rolled out across Wales to prevent them having to make daily trips to over-stretched pharmacies.
Buprenorphine can be given as a monthly injection instead of alternatives such as methadone which are given daily.
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