The MHRA Roaccutane / isotretinoin Inquiry into harms some people suffer, is still ongoing. Plus link to Millie Kieve's newest video.

 Re the MHRA Isotretinoin expert working Group (IEWG) conclusions following  submission of evidence from Millie Kieve for APRIL charity, together with many parents tragically bereaved by the suicide of their child.

The outcome  of our written and face to face (via Zoom) submissions of evidence, is very slow to emerge and more will be posted about this at a later date.

For my part (Millie)  - News of the work for APRIL which is ongoing, even though my age tells me to slow down!

I have now given up the office as I had rarely been into the space since the Covid lockdown, so am working on books about the history of APRIL and my life in fact!

In the meantime I have updated some videos on the Vimeo web site and this one is the newest:

https://vimeo.com/683984803

It is a talk that started as a conversation between me and my long time volunteer and friend Kathy.

I decided as I was explaining some of the history of the efforts I have made to help towards greater patient safety, I may as well record this. So I added still pictures to help illustrate the information. This covers the early years around the time of the  first conference I organised.

This includes when Dr David Healy (now Professor) was rejected after having his post as Professor in Toronto, following his talk to a few doctors, I believe, about the risk of suicide for some people taking antidepressant SSRI and similar drugs. You will hear he did agree to speak at that first conference, which led to the amazing work by the BBC Panorama team in highlighting the issues around dependence and harm caused by the SSRI antidepressant Seroxat. 

The fact that dosage was licensed too high and how the CEO of MIND charity actually resigned from and committee of people working for the Medicines regulator at the time, for reasons of failure to disclose or act on harm they knew about.

Please listen to the 11 minute 'conversation' in which I do actually include Kath's contribution, but not all as it may have been unsuitable for sharing! 

There are many videos of interest I have edited and included on Vimeo and the link to them all is on the Home Page of APRIL's web site https://www.april.org.uk Talks by leading experts in adverse drug reactions (ADRs) and how clinical trials have been rigged in favour of benefits from medicines with cover up of harms. Testimonials of suffering and recovery from people who have been sectioned for psychiatric issues, some due to the ADRs they suffered.

I will do more on the blog if I can be sure some people are still reading my posts. Please enter your email to be informed of new posts. I have no access to that data so have no idea how many of you may have signed up.

Kind regards to all and stay safe from Covid - with heartfelt concern for those in Ukraine who have far more  than Covid to worry about.

Millie's comment following Margaret's story on Dr David Healy's Blog

Margaret's story on Dr David Healy's blog about the tragic death of her son following prescription of SSRI antidepressant, resulted in many comments - mine is below.

http://davidhealy.org/platonic-lies

All the statistics you quote, do not alter our own personal experiences. The facts also speak for themselves. We should take into account the concerns of eminent clinical pharmacologist Dr Andrew Herxheimer that emphasis in research is on benefits and not harms of treatment.

10 years of UK hospital admission statistics, show that the largest increase is due to adverse drug reactions (ADRs) which has risen by 76.8% – analysis done by Imperial College.

Iatrogenic (treatment induced) illness is a public health crisis. Professor Munir Pirmohamed’s well known study of hospital admissions, that excluded psychiatric, paediatric admissions, showed 1 in 16 were due to ADRs.
A study in Liverpool of children who die or suffer ADRs has already found serious problems, not least of which is how unaware the parents are of the possibility of ADRs.

Awareness a drug is linked to suicide will not stop someone who needs it from taking it. However forearmed is forewarned and knowledge may reduce the number of avoidable deaths.

All kinds of medication can cause mental changes. The manufacturers are aware of this. Sadly in the UK, since the General Medical Council guidelines for medical education were changed in 1993 – to exclude Pharmacology and Therapeutics, doctors have qualified without having to prove competence to prescribe. The do not have to know about psychiatric adverse side-effects. Most have never read the data sheets produced by the manufacturers. Everyone should see these, they clearly state the psychological risks that are well known. Professor Simon Maxwell asked medical students if they felt competent to prescribe and most said ‘no’.

The British Industry web site has data sheets which are called SPCs http://www.medicines.org.uk

Today would have been my daughter Karen’s birthday. Her death in an avoidable accident was preceded by.

Psychosis and Stevens Johnson’s skin adverse reactions to a sulphonamide drug (all known adverse side effects but not always clearly indicated on patient information).

Depression following taking a drug for hormonal problem, well known to cause depression.

Akathisia – extreme agitation preceded by a headache following taking just one tablet of fluanxol an antidepressant.

She went to see the doctor but was turned away as she had no appointment. Came home and took some sleeping pills to ‘calm herself down’ …a typical reaction to akathisia is to self harm to let out the painful agitation ‘ like wanting to jump out of my skin’ one person explained.

For the rest of this list of adverse drug reactions Karen suffered, see the web site for APRIL, the charity I founded http://www.april.org.uk

Once I put up the web site – the personal stories started to come in. Shocking details of how people were adversely affected mentally by drugs.

A man wrote to me ‘ I dreamed I was hitting my wife and when I awoke, I was’. another said ‘ I tried to push my wife out of the car – I don’t know why’ . Both men had just started taking the antidepressant Seroxat.

A headmaster fell on to a motorway, he could not remember what happened, he ended up in a wheelchair.

He had been prescribed an antidepressant, Mirtazapine, not for depression but for re occurring sore throat!

The Drug Safety Research Unit did a PEM study – post marketing study – on Mirtazapine, they found serious ‘unlabeled’ adverse reactions reported by patients who were taking the drug. I asked the Director Professor Saad Shakir, why he did not insist the regulator (MHRA) took action to add the agitation, aggression etc to the patient information and he said ” I am an academic scientist and I published the paper, that is all I have to do”.

I found a similar attitude when I spoke to Professor Louis Appleby and asked why in the Suicide Prevention Strategy for England, there is no mention of medicication causing akathisia and suicidal feelings and actions. He told me he woud ” address this”. If there were warnings about the possibility that sudden changes in a person, either becoming high, manic, or very down, could be due to the treatment, lives could be saved.

I have been communicating with Professor Appleby for 10 years, to try to have the well recorded risk of suicidal feelings due to prescribed drugs or withdrawal effects, recorded in the Suicide Prevention Strategy. So far to no avail.

He admits in the letter to Margaret on this blog, that more education is needed, well he is head of mental health, so how about it Professor Appleby? Awareness among health professionals could save lives.

Apart from my daughter, I know of several instances where people feeling suicidal or agitated have been turned away by GPs or from the A & E departments instead of action being taken to care for them in this vulnerable state. One young man, a medical student, Jon Medland, had been to his GP, another, James, son of Clare Milford-Haven who told her tragic story at our last conference, had been to a walk-in clinic and then to A&E where he was graded 4 and told to wait. Tragic consequences could have been avoided.

A & E personel, GPs and medical receptionists should be trained to recognise those at risk of suicide, as being people recently prescribed SSRIs, corticosteroids or following surgery. Addiction to codeine benzoidiazepines and sleeping pills are other areas where improved medical education and availability of withdrawal protocols could prevent suffering and tragic consequences of too sudden withdrawal.