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.

Cancer prevention

Today I was moved to write about Cancer prevention, why?
someone sent me a circulating email asking me to 'pray' to end cancer!

I think a lot more can be done before we 'pray'. I do not dispute Praying has its place but consider the following, supported by an article I just discovered in The Guardian by the excellent Health Editor, Sarah Boseley.

My tips for cancer prevention are as follows:
(these ways to reduce risk of cancer should be taught to all children)

WAYS TO REDUCE RISK OF CANCER

*Eating plenty of fresh raw fruit and vegetables (while campaigning to increase the supply of organic veg and a reduction in harmful chemical sprays)
*Reduce intake of preserved meat (additives for preservation are carcinogenic)
*Exercise by doing sports or dancing - at least walking daily (very important for children)
*Eat a brazil nut every day (trials are being carried out as it seems selenium - found in brazil nuts - reduces risk
*Eat lentils and pulses in healthy vegetarian meals instead of meat
*Do not smoke
*Do not stand by bonfires or eat barbequed food or food cooked a high temperatures (never eat burnt scorched food) carcinogenic Acrilamides are formed in these foods.
*Only eat smoked food ocassionally as smoked food is carcinogenic
*Keep intake of alcohol to minimum - never drink alcohol every day as this leads to dependency!
*Only use pharmaceutical drugs if absolutely necessary as many kinds of medication caused cancer in rats during clinical trials and may in long term use in humans. (Long term use of drugs is not included in clinical trial data and it takes years of use to find the lethal adverse effects of some drugs).
*Keep body weight at a sensible level for your size
*Limit salt intake
*protect yourself from too much sun.

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