This post is to honor the life, work, and words of our dear friend and regular blog contributor, Heather Roberts, who sadly we have learned died peacefully at her home on 20th October after a short illness. Heather campaigned alongside us in memory of her son, Olly, who had a severe adverse reaction to the prescribed medication Roaccutane.
We would like to honor Heather’s memory by highlighting some of the things she and her husband David have done to support individuals and families who have had similar experiences as well as to inform the public of medication pitfalls like the one their family so tragically suffered. She has written tirelessly to communicate what can go wrong when a medication is approved and widely prescribed without adequate warnings of all potential risks.
Olly’s Friendship Foundation
Out of their tragedy the Roberts family formed Olly’s Friendship Foundation and the Arts and Creativity Centre.
Heather wrote of Olly:
“He could see that people like him needed to get together and support each other in their anxiety, because there was nothing else out there for them. So he started building an Arts and Creativity Centre at his home, but he was given Olanzapine and Sertraline in mid-2012 and he found that he couldn’t remember who or where he was sometimes.”
(This comment by Heather is found under the post: https://rxisk.org/everythings-in-hand-isotretinoin-and-the-usual-guff/)
“We want to go on with his work. We’ve formed a charity, The Olly Roberts Charitable Trust CIO 1186149 https://www.justgiving.com/olly-roberts, and we are fundraising to finish his Arts Centre – you can see it on Facebook Olly’s Friendship Foundation. It will be a place where people can come to be understood, distracted by enjoying learning Arts and crafts skills, learn ways of giving their body nutrition, stress management, that may help any possible healing process. It’s main function will be to offer hope.
“Our little buzzword is ‘Learning through Creativity to find Hope’. Ostensibly it is for anyone feeling anxious, but my own hope is that we can uplift those who suffer after taking this medication, or indeed any medication that has made them feel lost and not listened to. We’ve had a Helpline since 2014. Like Olly used to say, only someone who has suffered can truly understand, despite having the best intentions, what this is really like. And those sufferers have tried so hard to find ways of staying alive. Together they may come up with something. At least they will know they are not alone. Like we do now, with so much support from all you amazing folk and Dr Healy with this blog forum. Bless you all.”
In 2018, Olly’s Friendship Room was the runner-up for the Marsh Innovative Church Project Award at St Michael and All Angels Church, Upper Sapey, Herefordshire.
To Honor Heather’s Memory
To lift the spirits of Heather’s family, they would very much welcome and appreciate your thoughts and happy memories of your times with Heather, by DM – email or post. The Facebook page: https://www.facebook.com/ollysfriendshipfoundation
It is the aim of the Roberts family to continue the Heather S Buchanan Art and Creativity Centre and the Olly Roberts Charitable Trust in Heather’s memory. A contribution can be made here: https://www.justgiving.com/olly-roberts
Heather and David worked to spread awareness in the general community and by contacting government officials, health organizations and doctors. They created a PDF about the dangers of Roaccutane and akathisia that can be shared with others, including doctors and dermatologists. https://rxisk.org/wp-content/uploads/2019/07/190714-Forwardin_HopeNotesfortalk.pdf
Heather encouraged us to light a candle on All Souls Day to remember those lost to ‘prescripticide’ and she regularly lit candles to honor the lives of children who died after taking Accutane.
She often referenced the movie, “Dying for Clear Skin” and made a pamphlet by the same name for the sharing of this information.
Heather was a wonderfully creative and talented Author & Illustrator. Early in her career she produced over 800 beautiful greetings cards and gift wrapping designs for Gordon Fraser, followed by the wonderful world of George & Matilda Mouse stories, Buttercup Meadow amongst many other things. It is her family’s intention for her beautiful work to continue to be accessible and seen by generations to come.
Down to Trust
Finally, a comment from Heather that relates to David Healy’s recent letter to Onora O’Neill, inviting her to help shed light on the need for the restoration of trustworthiness in medical science. Heather hoped for this kind of engagement and her words illustrate the urgency for a response:
“It’s all down to TRUST in the end, isn’t it? We ‘trust’ the expert, ‘trust me, I’m a doctor’ etc. When Olly was told RoAccutane would clear his skin, he trusted the dermatologist. When Olly was told Seroxat was good for shyness, social phobia, low mood (or whatever it was he sensed had come in from left field to zap his normal feelings of well being), he trusted the doctor. We trusted the doctor. We blithely went along with hearing and accepting the calm platitudes because we trusted that ‘first they do no harm’. Where and when did TRUST become a dirty word? A mugs’ word. And we have the NHS TRUSTS now too…
“…Once on the Seroxat, Olly was changed forever. We made excuses for the change in him. We put it down to stress, worry about his skin, his work, his concern that I would be paraplegic after the car crash, but no, it was the meds. And yet, we trusted that no doctor would, could possibly inflict something so unsafe on him. And every moment of every day, others now are trusting their doctors, just like we did. Because it makes us feel safe to do so, we hand over our precious trust, often because we are feeling ill and vulnerable and we expect to be treated as we would treat anyone ill and vulnerable reaching out to us for help.
“First the wretched acne, then the bullying at school because the skin looks different, then the RoAccutane – isotretinoin, then the weird low mood it sparks off, brain not working right, then the physical limitations from it too, so distractions like sports, creativity, socialising etc, get removed, then, ah, the trip to the doctor reporting feeling low. Have some Seroxat, says the smiling doctor. Then the free fall into paranoia, the fear (you know not why) and the insomnia, the akathisia. The skin may be better, but madness has arrived. Confusion reigns in your head. The downward spiral of terror. Friends fall away. You drop out of Uni, your planned future you began training for, slips away too, into the mist of lost memory. Like a drowning swimmer you keep reaching out for a passing lifebelt, another doc, who offers more meds…still smiling. When you don’t improve, the smiling doctor turns to sarcasm, disbelief, irritation, you are branded as attention-seeking, a time waster, a mollycoddled immature parasite, and you trust them all; you believe that you really are as they describe you, so you maybe struggle on as best you can for as long as you can, awash with suicidal thoughts which keep engulfing you, and then, when your poor brain hurts too much to bear, and your loved ones turn grey before your eyes with helpless worry, you think, ‘I am a burden’ and you fly away. Seemingly there was no way out of this Perfect Circle because of misguided innocent TRUST compounded by humiliation, heaped onto the patient and the parents by the trusted medical ‘experts.’
This post was written by Laurie Oakley