'The Olly Story' by his mum and dad

We are writing this for Olly as he left a wish that we should find a way to help others who suffer as he did before he died. We’re sorry if we are embarrassing him, as parents usually are pretty embarrassing, but we’re doing our best! We just want to give you an idea of what he was like, cos he really was a wonderful son and a good friend to so many, and its such a tragedy that he died when only 32, partly, in our opinion, due to well documented, although rare, side effects from a medication called RoAccutane (Isotretinoin) when he was 21 to cure his acne, but it seemed to affect his mind really badly from the outset and continuing over 11 years causing chronic anxiety.  He and we felt that in the end, largely because doctors and psychiatrists did not understand this and so could not help him in time, he was in so much physical and mental pain that his life became unbearable and he felt he could not go on.

We’ll direct you to the well documented warnings by MHRA about RoAccutane for patients later, but just to describe Olly from his parents’ point of view, he was a funny, witty, geeky guy who’d studied Biology and Biochemistry at Bristol Uni, but who had taught himself IT during his gap year and also learnt a lot about photography, and he had dreams of starting his own publishing and web design company. So he worked in various web design agencies like ‘Insanely Great’ in Bristol and ‘Web Xpress’ in Birmingham and also started publishing cards of his photographic images and selling them at Trade Fairs and throughout Europe in the Paris company ‘Nouvelles Images’. He was always tremendously enthusiastic about new projects and ideas, and he loved all the latest technologies, cameras etc. He next worked at Namesco in Worcester with Mike Holloway who he had first met at ‘Web Xpress’ and Olly set up ‘Contrast Designs’ with Mike's help.

 

Olly took this picture of his mum and dad, Heather and David in 2011, to celebrate their 40th Wedding Anniversary.

Contrast Designs grew into Pepper Digital of Malvern and bringing marketing expertise, Olly’s friend Oscar, who he met at Uni, came on board. Then Andy Harris joined them as programmer. Olly was something of a workaholic, but this was partly possibly because the RoAccutane was maybe affecting his memory and thus he had to work at things longer than most people to achieve the same result. His reading and concentration he felt was badly affected too. Worst of all though, was the background anxiety, which started not long after he took RoAccutane when he was 21 but which he thought was his own fault. 

The suicidal repetitive thoughts started then too. We feel we must say here that the drug manufacturers say that "they are committed to ensuring that their medicines are taken as safely as possible and that RoAccutane has improved the lives of many acne sufferers but like most medications it can have side effects. While no definitive cause and effect relationship has been established to directly link mood swings and depression with the drug there have been rare reports among those taking RoAccutane and acne sufferers in general. As a precaution the manufacturers recommend that anybody experiencing these or other possible side effects with the treatment to tell their doctor immediately."

Olly loved his work and used to lose himself in it. This wasn’t always easy for people working with him as he worked all hours, but maybe he was doing this partly as a distraction from what his mind was doing to him. He’d always loved new projects, even when he was 8 he was making movies about his dad’s sheep at lambing time, or later, about army manoeuvres with his friend Toby Blythe, hurtling around in an old landrover on the farm with BB guns! The last film he made was about wild life in the USA, and one about Paris, for which he wrote the music too. He did a lot of composing on the keyboard.

He was great fun to be with, enthusiastic, bouncy, and above all, kind. All his friends could always rely on him if they needed help. As his parents, we miss him dreadfully. It seems unbelievable that he is not ever again going to bound into the kitchen, having driven over from Malvern, saying ‘what’s going down Mum?’ and putting the kettle on the Aga whilst he toasted his back on the rail or raided the fridge. We miss his fantastic hugs most of all.

We hope his friends will write a bit about him later on this site – they knew him better than we did in later years and could tell lots of tales about him and the things they got up to! We hope what we’ve written gives a basic idea of what he was like. There’s no doubt that he was pretty sensitive about his acne, like most people are, and it did annoy him, but it never, we feel,  was enough to make him seriously want to end his life, it just made him want to find a cure.

When he died he left a letter saying that at his funeral he wanted us to read out the words that he had loved all those people who had been in his life. He had a Memorial Service at Worcester Cathedral on 25th October 2012, and the Chaplain who took the service said that although he’d been very talented and achieved great results whilst at school, the most outstanding thing about him was that he was the kindest boy he could remember in his time there. We think that sums him up best of all.

 

What we want

When Olly got very anxious due to stresses in June 2012, work load and moving house and stuff like that, he began to lose his battle with his mind and needed support and understanding and kindness from Mental Health Care services in our area of Worcester. We feel that neither Olly nor we were listened to by clinicians when we tried to explain about the RoAccutane, and because he voiced worries about his suicidal thoughts, he was branded as attention-seeking. This was one thing he never ever was. He gave up hope we believe, because he was totally misunderstood.

We want to help parents and carers of other people who are also suffering the hell of anxiety, needing support and kindness, and company. He was told that he should manage at home on his own and do CBT and go for walks and write a diary and distract himself, and he did all this, but the anxiety was, he and we felt, really organic in his mind and this made it almost impossible to concentrate, so sadly  these things did not really help him, although Mindfulness was a great resource which he found very helpful.

 

Olly on skiing holiday - 2012

We would like to know what other parents and carers and anxiety sufferers feel is needed to make their lives easier. Do they feel that having someone to talk to each day, apart from what the Mental Health Home Treatment teams can offer, would help? Or somewhere to go to meet and do creative things like painting, writing, and learning ‘Mindfulness’ as a coping strategy? To start with, the OLLY’S FRIENDSHIP FOUNDATION is a fact-finding exercise to see how best we can do what Olly wanted and ‘help others’.

We are not clinicians but we are very interested in Mindfulness and have studied things like ‘Moodmasters’ and ‘Mental Health First Aid’ courses in order to be of some use in signposting other carers for help. We feel maybe if we can get together as carers, we can help each other.

We felt terribly alone and desperate when Olly was so ill, and there seemed to be only so much, due to staffing and time factors, that Mental Health services could offer us and him. We want to hear of others’ experiences and how they feel the system could be improved.

So, over to you – please send us your constructive comments and thank you for reading this. We have set up a special phone line if you want to leave messages too – 01886 853 006.

With our best wishes,
Heather and David Roberts

19th May 2014


Resource material

Accutane – the Truth ebook by Stefan Lay – which explains what it feels like to have symptoms like Olly, and ways of coping.

The Clear Skin Diet – a nutritional plan that works, by Alan C Logan and Valori Treloar – this explains the science behind acne and how things like Omega3 fish oil and avoiding certain fats in the diet can make an enormous difference. 

Dying for Clear Skin BBC3 film on YouTube.

Consider alternative treatments such as Blue Light and Laser Treatment with Dr Tony Chu at the Hammersmith Hospital.

facebook.com/AcneAwarenessGroup a site where people are sharing their experiences of RoAccutane, both good and bad, and where you can see the latest news on the Government’s MHRA inquiry into why this drug is making certain people so ill.

BBC Inside OutJonathan Gibson investigates how a powerful, prescription-only acne drug is being sold to people over the Internet, which BBC Hereford & Worcester (2:07:52 onwards) and BBC Coventry (1:07:05 onwards) also cover. 

Recommended books that helped Olly

The Mindful Way through Depression by Mark Williams, John Teasdale, Zindel Segal and Jon Kabat-Zinn


georgeandmatildamouse.co.uk is Heather's website. Olly's mum writes and illustrates the George and Matilda Mouse children's book series, Olly built the website, and there is an Olly Mouse too!!


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