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.

Our web site is being updated

Blog post - latest update 15 December 2016

You will have been re-directed to our blog while our web site is in the process of being upgraded and edited, for which we apologise.

Please read here :
our submission to the Parliamentary Health Select Committee Inquiry into Suicide Prevention

The final report by the committee totally ignored the medication links to suicides, stating the view of those who gave oral evidence was that treatment with drugs is better than no treatment. How sad they could not discuss the fact there are suicide warnings for many psychotropic and everyday medicines.

APRIL charity has had a web site for over 15 years - this is currently being upgraded.
By early 2017 we should have an improved site up and running - In the meantime please read articles on this blog and  view our videos from our groundbreaking conferences.

Leading experts in clinical pharmacology, genetics and medical education. speak and answer questions about adverse drug reactions (ADRs), and dependence issues.

Hear about the way clinical trials may be manipulated explained by Dr Ben Goldacre and Professor David Healy. The wonderful Professor Heather Ashton's wise words and many other experts in the field of medicine. A coroner's view and the stories of people, some bereaved, who kindly agreed to sharing their experiences with us.

https://vimeo.com/user1816628 

We also have a Youtube channel to which over 40,000 people have seen and some have commented. Well worth reading those comments to hear how people have suffered and how valuable our work of creating awareness is. Please find information about specific drugs on the pharma web site www.medicines.org.uk and review the data on the SPC (summary of product characteristics) for full information about some of the possible side effects.

Please follow us on Twitter @APRIL_charity 

Our submission to the Government Suicide Prevention Inquiry can be viewed on the Parliamentary web site: 
http://data.parliament.uk/writtenevidence/committeeevidence.svc/evidencedocument/health-committee/suicide-prevention/written/37700.pdf

 We take the opportunity to request if you may please consider a contribution to help us continue in our work.

Donations towards the upgrade of the web site will be appreciated - please read our Fundraising Appeal here:

Link to Charity Choice Fundraising site, click on 'Our Appeals : https://www.charitychoice.co.uk/april

Direct link to the Appeal:
https://www.charitychoice.co.uk/april/appeals/psychiatric-side-effects-major-resource-upgrade-of-web-site/626

Latest news on activities of APRIL

Please share the link for this remarkable new video documentary by Katinka Newman but can only be viewed on a computer - not on mobile devices unfortunately!
https://www.youtube.com/watch?v=eEeJtRB5hqg


Oxford University Press International Journal of Neuropsychopharmacology

A newly published paper = October 2016  referring to rigged clinical trials covering up suicides and other ADRs caused by antidepressants is also worth reviewing:

http://ijnp.oxfordjournals.org/content/early/2016/10/25/ijnp.pyw092


Please scroll down this blog for important information about antidepressants, Dianette, Non psychiatric drugs linked to suicidal behaviour and depression in a recent study by Professor Munir Pirmohamed and others.

Until the revised web site is available, it is still possible to research the information about medicines or other data on our web site archived by Wayback Machine - just go to the web site : http://web.archive.org/web/*/www.april.org.uk

waybackmachine.org is a great resource and they state for www.april.org.uk it has been

Saved 158 times between August 24, 2000 and April 26, 2016.

Antimalarial drug

31 August 2016 on BBC TV Victoria Derbyshire programme focus was partly on the #psychiatric adverse reactions to #Lariam #Mefloquine the drug recommended for prevention of #malaria

http://www.bbc.co.uk/iplayer/episode/b07rgvhh/victoria-derbyshire-31082016

Follow her on twitter too: @VictoriaLive 

After hearing the evidence in the programme one may wonder why nothing was done to protect the public and our troops from the long term mental health issues triggered by this drug, there are suicides and homicides linked to the adverse effects too. 

The answer is the pharmaceutical company threatened that if any kind of campaigning were to continue in the UK the cost would be too great.

details are here:

http://www.lariaminfo.org/about/lariam-uk/

APRIL has a dossier of testaments from the public about the dreadful effects of the drug. It may be of use for 'curing' malaria but as a preventative the harm seems to outweigh the benefit.

_____________________________________________________________

Apart from editing and revising the web site, Millie Kieve the founder of APRIL Tweets to doctors and others - Please follow us on Twitter @APRIL_charity

This week a good result was when Dr Mark Porter mention Millie Kieve had tweeted to ask why he did not promote patient reporting of ADRs:

http://www.bbc.co.uk/programmes/b07mxk4g  BBC broadcast 9th & 10th August 2016

After radio 4 programme 'Inside Health' prog last week (2nd & 3rd August), item on statins, when they discussed the conflicting evidence re benefits and harms. I tweeted direct to Dr Mark Porter how important to balance the misinformation and why did he not promote the Yellow Card reporting system for patients as doctors so seldom report ADRS. (more than one tweet of course as words so limited in tweets!) - I believe the incidents of memory loss, depression and muscle weakness caused by statins is under reported!

And Dr Porter quoted my tweet to instigate a discussion on Yellow Card reporting in this week's prog and even mentioned my name!

This is about 15 mins into the programme after the hip treatment discussion. 

I hope the MHRA will be pleased but still wonder why they don't do more to publicise the Yellow Card system. This lack of effort to promote the scheme to the public re-enforces the Health Committee Inquiry finding:
The MHRA have a conflict of interest in trying to manage safety of medicines while they are supported by and have to promote the pharmaceutical industry. 

Millie Kieve speaking on behalf of patients in Paris France

Prescrire meeting in France

MOST OF THE POSTS ARE IN ENGLISH - this one is an exception.I will be speaking at the meeting in Paris France on 30th January 2014 in French but please communicate with me in English as my conversational French is not good enough just yet - though I have practiced my talk and guarantee that will be understood by the delegates!

Écouter les voix des victimes - 
Millie Kieve, fondatrice d’April, association britannique de victimes d’effets indésirables médicamenteux psychiatriques


Prescrire English web site: http://english.prescrire.org/en/

le jeudi 30 janvier 2014

à la conférence-débat
“Victimes de médicaments :
sortir du déni sociétal pour mieux soigner”
suivie de l’annonce officielle des Palmarès Prescrire 2013

Conférence-débat : “Victimes de médicaments : sortir du déni sociétal pour mieux soigner”

DES (diéthylstilbestrol), Vioxx°, Mediator°, pilules dites de 3e ou 4e génération : ces médicaments, parmi d’autres, évoquent des effets indésirables parfois dramatiques à l’échelle individuelle, et sur l’entourage des victimes.
Aujourd’hui, en Europe, les victimes d’effets indésirables graves de médicaments continuent à éprouver les pires difficultés pour être reconnues comme telles. Il est temps de prendre conscience du caractère inacceptable de cette situation, et d’agir.

Trois interventions complémentaires permettront d’ouvrir le débat :

La conférence-débat sera animée par Anne-Sophie Stamane, journaliste, UFC Que Choisir

Adverse drug reactions: is the patient voice loud enough? London conference June 24

WHO’S LISTENING TO PATIENTS?

One of the biggest under-reported health problems is adverse drug reactions
(ADRs), the harmful effects of the medicines our doctors prescribe for us.
These can range from unpleasant rashes all the way to suicide.

In 2008, the European Commission estimated that ADRS kill 197,000 citizens
of EU member states, at a cost of€79 billion. That same year, the
centre-left think-tank Compass reckoned that the NHS alone was spending
nearly £2 billion a year treating ADRs.

And for every patient affected, there is a family in crisis, thousands of
working days lost, collapsed businesses and relationship break-ups.

Drug safety is taken very seriously by drug regulators, but there is a
crucial gap in the chain. Does anyone really listen to the one person who is
really expert: the patient who is taking the drug? What happens when
patients do get a chance to report their own symptoms directly? And do we
really know how important the patient voice could be in improving drug
safety?

Come to a special one-day conference on Friday 24 June which will address
these issues – and brainstorm suggestions about how to make the future
safer.

ADRS: Is the patient voice loud enough?
The first International Conference on patient reporting of suspected Adverse
Drug Reactions

Friends House, Euston Road, London NW1 2BJ

PAY ONLY £20 AT THE DOOR ON THE DAY!


Among the speakers will be:
* real patients, telling their own stories
* top UK academics, talking about the first study of direct patient
reporting (http://www.hta.ac.uk/fullmono/mon1520.pdf
)
* government regulators explaining their problems and concerns
* open panel discussion: what can health professionals learn from
patients?

REGISTER/COFFEE 9.30
For full programme see: www.primm.eu.com

Organised by PRIMM/Drug Safety Research Unit

SENT OUT BY MILLIE KIEVE – organizer of the patient experience section of
the conference. If you would like to speak about your own experience, please
contact me asap