Tangled up in Bureaucracy flagged a Signal for the Goose Signal for the Gander as a sequel. That was before the Gary Bullivant comments on Tangled up in Bureaucracy. If you don’t normally read comments on post, the Bullivant-Kingston comments are in this link; they are worth reading. GB’s comments fit nicely in with a delicious 2019 correspondence between Dee Doherty and Louis Appleby leading to this intercalated post, which features one of Bill James’ greatest creations. Bill’s title for this – a key part of the creation – brings several layers of meaning into view. Try guessing what it is before reading more.
MHRA, NICE and LA appear to be what Harriet Vogt has called defenders of the faith or what Catholics would recognize as apologists. Catholics, boys at least, were once taught Apologetics. This does not mean saying sorry for the extermination of native populations en route to world domination. It means being able to stand your ground and explain why what the Church has done, or its view on something contested, is the rational one.
A century ago through to 50 years ago Marxists used to be good at this but as these ‘faiths’ have lost relevance the wider public are less aware of what is going on. Apologetics are deployed by politicians from Russia to Israel these days. The pharmaceutical industry are among the most skilled proponents of these ‘arts’.
After a slip-up reveals what LA really thinks – repeated off-the-record in the background of the Kingston case, several classic LA – LA Land dance-steps show in his email responses.
- Akathisia can happen, even make you feel suicidal, but we have no evidence it leads to suicide. We will settle this once we know how many angels fit on a pin-head.
- The drug may play a part but is only a possible contributory factor along with other stressors that would likely have led to suicide anyway.
- If you deviate from the script and stop your medicines without your doctor agreeing – you’ve killed yourself.
- Doctors don’t want to warn for fear of deterring people from seeking a benefit and perhaps ending up killing more people than they save by warning.
- The safety of antidepressants in suicide prevention below means – Does an overdose kill you? From this point of view SSRIs are the safest antidepressants.
- It’s the job of the doctor seeing you to work out what to do in your situation – nothing to do with a Suicide Czar, or MHRA or NICE.
- If your doctor decides the drug caused you to take your own life, that’s just their opinion, Suicide Czars, MHRA and NICE are double-blind to these things.
- Let me helpfully put you in touch with the powers that be – pass you from pillar to post (MHRA, NICE, RCGP) – who will do just pass you back and forth till you give up.
- Ask me to put my name to something – that’s not how government works.
- Support a convention where all issues can be tackled – forget it.
Dee to Louis
In 2019 Louis Appleby, Britain’s Suicide Czar, favoured a tweet from Jasna Badzak, a former UKIP press secretary, claiming that drug safety advocates enquiring about iatrogenic deaths and akathisia are nothing more than “a dangerous cult”.
Outlining that a family member had become suicidal soon after going on an SSRI, Dee Doherty emailed Louis asking if he viewed her and her family member as dangerous cultists?
Louis <Louis.Appleby@manchester.ac.uk> Mon, Sep 30, 2019
To: Deirdre Doherty
Dear Mrs Doherty
I want to let you know I’ve deleted that tweet, given your concern about it. After all, my comment on it was actually about ensuring a positive atmosphere on my timeline.
I can assure you the safety of antidepressants is seen as an important issue in suicide prevention.
Caution over suicide risk is in NICE guidance and the side effect of restlessness is referred to in the national suicide prevention strategy.
With best wishes Louis Appleby
Deirdre Mon, Sep 30, 2019
To: Louis
Dear Professor Appleby,
You caused great distress to my family and others, took no responsibility, offered no apology and did not address the issues. Can I at least be reassured that you don’t think of myself and my teen stepdaughter after her experience of missing one Sertraline pill as part of a “dangerous cult”?
More crucially, I do not understand your response on the critical issue of akathisia. This remains urgent, and for my family. The mother of my teen stepdaughter thinks I’m a Conspiracy Theorist.
The child is now withdrawing and I am very concerned after her previous experience upon missing one pill.
Can SSRIs induce death by self-harm – I ask so the teen’s mother may take it from you. I don’t want to have to keep asking this valid question. Please imagine if it were your child.
Sincerely, Deirdre Doherty
Deirdre Tue, Oct 1
To: Louis
Dear Professor Appleby
My apologies, I neglected to request where “restlessness” as a side effect appears regarding SSRIs in the Govt Suicide Prevention Strategy. Thank you and for any appreciation of our family circumstances,
Deirdre Doherty
Louis Wed, Oct 2
To: Deirdre Doherty
Dear Mrs Doherty
Thanks for replying. I want to try to answer your questions in the most helpful way, so it makes sense to start with my understanding of the main issue you have raised.
SSRI antidepressants can cause akathisia. I have seen many patients with akathisia, caused by different drugs, and it is an extremely unpleasant condition that at its most severe can make people feel desperate and suicidal.
It’s hard to estimate how often it causes suicide or self-harm, partly because what makes people suicidal is often a mixture of problems – it is rarely caused by one thing. However, the risk is sufficiently concerning for us to be cautious at all times, especially when starting or stopping treatment. It’s essential that the doctor who prescribes SSRIs should inform the patient about this risk, as you say, though I do understand that doctors don’t want to put a patient off taking treatment & getting the balanced message of risks and benefits right can be hard.
On the national suicide prevention strategy, I need to explain a little of the background. When we came to update the strategy a few years ago, the Government wanted as few changes as possible. We were keen to add something about antidepressants after hearing from families who felt strongly about this and we thought it was best done in the section on treatment of depression in primary care which was mainly about the risks of getting no treatment. So we added a line to the key messages of this section, as follows:
“There are also risks in the early stages of drug treatment when some patients feel more agitated.” (page 27).
This may not sound a lot but at the time it seemed an important and unusual acknowledgement to appear in a Government strategy. We used “agitated” because it was a document for the general public rather than clinical guidance for doctors – that’s the job of NICE – or information for patients, which is overseen by the regulator, the MHRA. Current NICE guidance says something more specific about the need for careful monitoring in the early period of treatment, especially in younger people, because of suicide risk.
I’m sorry to hear about the difficulties your step-daughter has faced. If she has had severe akathisia on withdrawal, it’s an important point of safety to withdraw more slowly, to avoid the distress I’ve mentioned. Most people can come off antidepressants if it’s done over the right time period, and that can vary for different people.
I hope I’ve answered what you were asking about your step-daughter but if I’ve misunderstood please feel able to come back to me. Of course, I’ve “unblocked” you – happy to do this – but being in touch by email is a lot better than twitter.
With best wishes Louis
Rubber Hits Road
Deirdre Fri, Oct 4, 2019
To: Louis
Dear Prof. Appleby,
From what I can understand, as akathisia is an adverse drug effect of so many increasingly prescribed medications and as suicide rates may be reduced with greater awareness both of the signs of suicide and of the signs of akathisia, would you kindly support an Informed Consent & Patient Safety petition regarding the material risk of akathisia?
The petition would go something like this:
We, the undersigned, were aghast to learn via recent communication with Prof. Louis Appleby, a UK Suicide Prevention expert, that the government are restricting safety information in suicide prevention strategies. We find this incomprehensible, given the admittance by Prof. Appleby that “SSRI antidepressants can cause akathisia.” Adding further, “it is an extremely unpleasant condition that at its most severe can make people feel desperate and suicidal.”
Do we have your backing on this, Prof. Appleby? Thanks for taking this very seriously,
Deirdre Doherty
Louis Wed, Oct 9
To: Deirdre Doherty
Dear Mrs Doherty
I’m approaching this in a slightly different way but I hope it’s helpful.
The problem of petitioning the Government is that they will see this as a clinical issue, something that falls within NICE’s independent remit. I think it would be better to go direct to NICE – they are the main source of guidance to GPs and other health professionals. I’ve been in touch with them about the best way for you to do this, as they are still working on their depression guideline.
NICE depression guidance currently advises careful monitoring when people, especially young people, first start antidepressants because of suicide risk but it doesn’t link this risk to agitation or akathisia. The depression guidance for children & adolescents, 18 & younger, is very cautious about the use of antidepressants at all and stresses the importance of patients being fully informed, and keeping a written record of this.
Given the points you’ve raised with me, your request to NICE could be that (1) it could include a reference to agitation/akathisia as a warning sign of suicide risk (2) the recording of informed consent could be extended to cover young adults in the adult guidance.
One way to do this is to write to NICE at this email, either personally or via any organisation you work with, to say that you want to provide information about safety DepressionInAdultsUpdate@nice.org.uk
It may sound a bit bureaucratic but all this is part of NICE being strictly independent, doing everything by the book. If you find you aren’t getting the right response, come back to me & I’ll contact them again.
With best wishes Louis
Louis Thu, Oct 10
To: Deirdre Doherty
Dear Mrs Doherty
I meant to add that the other way to approach this is via the Royal College of General Practitioners who oversee training for GPs. They are the main prescribers of SSRIs and getting your messages into their training would reach a lot of people. Let me know if you want to follow this up.
I’m conscious this is taking you into the way the various national health care bodies work & that can seem complicated if it is unfamiliar. Come back to me if you want me to clarify any of this.
With best wishes Louis Appleby
Deirdre Thu, Oct 10
To: Louis
Dear Professor Appleby
Thank you for all these different suggestions to follow up. Yes, I am understandably confused about how these different processes work but I’m happy you will help me help others be more aware of the suicide risks related to akathisia. My family was left in the dark and we are lucky we survived akathisia at its worst.
It’s not good for me or our efforts that I appear like a lone wolf in wanting to clearly communicate akathisia and the big differences between akathisia and agitation. I would feel more comfortable following up on your suggestions if I can talk with someone who is already familiar with your previous efforts to add akathisia to the national suicide prevention strategy. Can you please give me the names and contact info of those who you previously spoke with when you tried to make these changes so I can also seek their support?
Akathisia awareness has increased since you last worked with the government to add akathisia info and related suicide risks to the national strategy. I don’t think the word akathisia should continue to be left out because of some out-dated, false assumption that it is too clinical a word for families to understand. I will do my best to work with you and other professionals in this field to make these needed changes to the national strategy, to NICE and to all doctors’ training. Other families need to be better informed than my family was.
I feel sorry that you’ve received so much negative flak on Twitter given that I now know you made previous efforts to include akathisia risks in the national strategy. I think the best way forward is to petition the government and include the dilemmas you faced when trying to improve suicide prevention strategy. If the public can see the government are not supporting a suicide prevention expert, more people will probably support a petition. Also, since I’m still suffering from adverse drug effects, I’m hopeful a petition will bring new people with different skills who can work with us towards these goals.
Best wishes, Deirdre Doherty
Louis Thu, Oct 17,
To: Deirdre Doherty
Dear Mrs Doherty
Sorry not to reply before now, I’ve been away.
To clarify, the Government doesn’t make decisions about clinical practice or training. It delegates these issues to expert bodies that are independent and have the necessary expertise. NICE are the body that puts out clinical guidance to health professionals. Royal Colleges oversee training. These are the organisations that can change practice in the way you want.
It was quite unusual for the national strategy to include a specific clinical point. In that sense the Dept of Health supported me, it wouldn’t be correct to suggest otherwise. A national strategy is an overall statement about the importance of an issue such as suicide prevention, intended to support and inform the NHS, local authorities, etc. It doesn’t instruct them on what to do – that is decided in each local area.
I can see you would like to influence the Government on the issue of akathisia but their response is likely to be that this is the role of NICE. Of course, it’s your decision how to proceed – I’m just concerned you could put a lot of effort into pursuing this in a way that would, in the end, be frustrating for you.
In the meantime, I’ll assume you want me to approach the RCGP, as I mentioned in my previous email, and I’ll now do this.
With best wishes Louis Appleby
Deirdre Thu, Oct 17
To: Louis
Dear Professor Appleby,
I will organise the Petition with my original wording.
Can you confirm in writing that you support the Petition or are you now saying the Government never imposed restrictions? I’m confused.
We, the undersigned, were aghast to learn via recent communication with Prof. Louis Appleby, a UK Suicide Prevention expert, that the Government are restricting Safety Information in Suicide Prevention strategies. We find this incomprehensible, given the admittance by Prof. Appleby that “SSRI antidepressants can cause akathisia.” Adding further, “it is an extremely unpleasant condition that at its most severe can make people feel desperate and suicidal.”
We learned that the Suicide Strategy Plan is severely lacking in concise information. Prof Appleby, via correspondence, told us, “When we came to update the strategy a few years ago, the Government wanted as few changes as possible.”
We urge the Government to rethink their stance and demand to know why they feel few changes are needed.
Best wishes, Deirdre Doherty
Louis Sun, Oct 20
To: Deirdre Doherty
Dear Mrs Doherty
I’m very willing to help but there’s a misunderstanding here about the role of the Government. It might help if I explained a bit more.
The Government at that time had a policy of supporting local independence, so it wasn’t keen on national strategies which were seen as “top-down”, ie telling local people what their priorities should be. We did get agreement to relaunch the national suicide prevention strategy but it had to be an update, not a new strategy.
It’s very important to know what a strategy like this is for. It is a broad statement of how we should approach a problem, it is not a detailed list of actions that people should take. Organisations like the NHS or local government are expected to respond by providing the detail for their staff. It isn’t the role of the national strategy to issue clinical advice to doctors – that is for NICE or the regulator, the MHRA.
So the Government did not restrict safety advice or fail to support me. In fact, it went beyond its remit by allowing me to refer to the risk on starting treatment for depression after people had raised this with me. I told you about this so that you would know that their concerns, which are similar to yours, were not ignored.
My advice is to focus on what matters most to you, the problem of akathisia and the importance of informed consent, where you are making a powerful point. The main issue could get lost if the petition is about the Government.
Of course, it’s your decision. The help I can give is more about how to get through to the organisations that actually influence prescribing practice, such as NICE and the Royal Colleges. I can also advise you on how our complex health system works – I do understand it must seem confusing.
With best wishes Louis Appleby
Signal for the Goose will follow in a few days.
Double-Blind Cure © Billiam James 2020
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