Editorial Note: This post by Heather and David Roberts is about their son Olly and the struggles he and they had with the health system, acne and its treatments.
Our son Olly had RoAccutane prescribed for him aged 21, getting ready to celebrate his birthday at Bristol University and wanting to look his best. He was studying Biological Sciences. His results from his first year exams were outstanding and the Dean wrote to tell him he was on track for a First.
The only cloud on Olly’s horizon was his cystic acne, which had begun when he was 14, for which he had suffered significant bullying at school. He had, over time, been prescribed antibiotics, lotions, and had finally even consulted a homeopath, whose treatment, sadly and to our surprise, made it worse. The only thing that had improved it was using the Stone Age diet when he was 15. But this required disciplining himself. On finally seeing a dermatologist, she told him the diet was a waste of time and ‘he would never get rid of the scarring.’ Her words made him lose faith in the diet and feel very worried about having a permanently ugly body.
He ate whatever he liked again, as nothing could change the future ugly outcome, except RoAccutane. His experience with homeopathy made him feel that RoAccutane – isotretinoin, a ‘wonder drug’ with a few warnings, could not do him much more harm than that. He also lost faith in us, his worried parents with our concerns. He believed doctors were scientists, and would know best about safety. He used to say ‘You’ve got to get the science right, above all else.’
Warnings inside the packs of pills in 1998 were not as comprehensive as they are now, as more and more suicides were reported over time amongst those taking it. In 2003, a European Medicines Agency report confirmed that discontinuing the drug might not be enough to alleviate adverse reactions. We did know that it was contra-indicated if there was a history of mental illness in the family. Our son’s maternal grandfather had become manic-depressive after open-heart surgery in 1940. Olly’s doctors were informed of this. They brushed concerns aside.
We had also worried about the side effect of blurring of vision and night blindness, knowing that he needed his eyes for his microscope work and photography, and also knowing that once having taken it, he could never apply to be an airline pilot. For this reason, we had tried to persuade him not to go along with the recommendations of the doctors, but once he was 21, we felt he should take his own decision, he was a scientist himself, after all.
Within a few weeks, he changed from a cheery outgoing person, enjoying company, full of ideas and enthusiasm, into a quiet withdrawn anxious young man who began to find tears trickling down his face for no apparent reason. His concentration plummeted, as did his self-esteem. He began to hear voices telling him he was useless and suggesting he kill himself, because he was so ugly. He had dry skin, major regular nosebleeds with significant blood loss, aching joints, dry eyes, (apart from the tears), inability to tolerate sunlight, or noise, and above all, constant agitated worry.
He thought he was going mad. But he didn’t tell us at the time. He took time out from his studies, ostensibly to help me because his father and I had been in a car collision with a bus and I had broken my neck. We put some of his silent sadness down to the fact that he thought I might die. But he said so little, he was so unlike his old self. He seemed shut off from everything, emotionless.
Adding to the cocktail
I made a good recovery but this did not alleviate his low mood. He consulted an aesthetic surgeon about work to remove the scarring from his back and chest, and this Consultant referred him to a psychiatrist to discuss adapting to the results of cosmetic procedures. The psychiatrist offered Olly Seroxat to lift his mood, saying it was good for shyness too. This made him feel far worse, but he persevered with it for some months.
When he’d completed the first course of 3 months on RoAccutane, he seemed to become more like himself again. The pills had helped his skin a little, but not as well as the Stone Age diet had done. We saw from his Medical Notes that his liver results were not as good as they should have been, but his GP brushed aside our concerns. During the summer, Olly went off to America to make films of wild life and to visit the Grand Canyon. He was trying to distract himself from the low mood so uncharacteristic of him. He stopped taking Seroxat whilst away, as he was travelling with a medical student friend and didn’t want him to think he was mentally unstable, needing an anti-depressant. No one as far as we know had ever suggested to him that he should tail things off slowly.
When he came back for the Autumn Term, he began to suffer panic attacks in the Lecture theatres, uncontrollable muscle shaking, and overwhelming fear and dread. He said he did not know what he was afraid of. All he could remember was the bullying at school and being told he was ugly. But he had long since left all those thoughts behind – until now.
He tried to block the suicidal voices but they were incessant, like an OCD. By November he was in such a bad state that he found himself wandering across Bristol’s suspension bridge, deliberating as to whether to jump. He telephoned us from there in the middle of the night saying he didn’t know where he was or how he got there. We rushed down to find him and brought him home. He was constantly telling us that he knew he must die. We were terrified to hear him talking like this.
The perfect circle
Our GP came to our home to see him where he had retreated to his bedroom, feeling suicidal, and berated us for being over protective, saying we should send him straight back to the care of the Student Health Service at University, and having discovered he had resorted to taking some St. John’s Wort for depressed feelings blamed us for that as well and said it could be very dangerous. We didn’t know he was on it. We were described as Olly’s problem, the ‘fussing over protective parents’.
We did help him to go back to Bristol straight away, and the Student Health Care service there was good for a short time, but he was given more medication and his agitation became even worse. He drove home again and asked to go into hospital for his own safety as the voices were ceaselessly imploring him to kill himself. He couldn’t keep still, pacing, picking up scissors and putting them down again. We bought him a mini trampoline, which he thought might tire him out and stop the restlessness.
When he was being referred to the in-patient unit, we raised again the question of his taking RoAccutane and Seroxat, having read their listed side effects, but were firmly told by both the GP and later the psychiatrist, not to be ridiculous. ‘Nobody takes any notice of the PIL, it means nothing in reality’ said the dismissive and irritated psychiatrist.
We were told our son may have body dysmorphic disorder, hence his concern about his acne and the memories of the school bullying. Olly just wanted his acne to go, so was not interested in the RoAccutane worries that we kept raising and felt the doctors knew best. After all, they were trained in medicine, and he was concerned about his mind functioning properly right now, and had been assured that RoAccutane could not be the source of his problems. The kidnap had begun, and he was slowly slipping away into ‘the Perfect Circle.’
Down and down
In hospital Olly was given higher doses of SSRIs and anti-psychotics. On Risperdal his tongue started moving in and out strangely and his legs were shaking. He couldn’t sit still. He became convinced he was the Devil and the police were coming to get him. When we raised our concerns again about the drugs, we were barred from visiting him. It was difficult to get any opportunity to speak to the busy psychiatrist who said he had no time to see us nor to read letters, reports or faxes. Olly was being told however that we were his problem, over-protective, interfering fussy parents. The staff were only allowed to speak to him for a few moments each day as he was asking for reassurance, and he apparently had to be broken of this habit.
However, our son’s mobile phone was not taken from him and he called us instead, constantly, telling us how evil he was, apologizing and telling us he knew how much we must hate him as we didn’t come in to see him any more! We tried to ignore the phone but it was ringing in our house, all day and all night. So we recorded the conversations and gave a copy to the psychiatrist. He made no comment to us, but was apparently angry with Olly.
Luckily our young vicar said he would go and see Olly as ‘his spiritual adviser’, to try to convince him he was not the Devil. This man was able to get into the hospital when we couldn’t, because Olly was one of his parishioners. Our son was by now in a terrible state, lying on his face on the bed, shaking from the effects of more and more drugs and fearing that the police were coming to take him to prison.
Desperate to get the psychiatrist to listen to our assurances that our son had never behaved like this before he took these medications, we approached the local MIND, thinking they might act as intermediaries between us and the doctors. They must have known there were concerns about Seroxat at this time in 2003, but they would not help us.
Their in-house psychologist suggested that as Olly’s mum, I was ‘afraid of angry men, and needed counselling’ myself. I said I’d be delighted to go for counselling but implored them to quickly help us explain about the medications and their effect on Olly. Months later a counselor linked with our GP surgery, who I saw several times, was very supportive and said both we and Olly had been treated appallingly by both MIND and the doctors, and by certain other intermediaries.
After a few weeks of Olly’s time in hospital, miraculously another patient took him home with her one weekend. He had told the staff he was going to see his brother. This kind lady who self-harmed and was an alcoholic, told Olly on that fateful weekend that he must try to get his act together and get out of this cycle of anti-depressants and anti-psychotics or he would end up like her, with a revolving door into that hospital.
He was luckily always purely a voluntary patient. By another miracle, a job was offered to him by a work contact to use his web design skills, and he took it, even though he was feeling very anxious. Nursing friends of ours advised him to move to another area where the care was better, so he did. This all took some doing, getting a new rented flat, living away from friends and family, and doctors expecting him to manage on his own, without help from us, whilst he was shaking with fear. Our help had to be covert. We felt we were viewed as criminals for caring about him. We smoothed the way for him as best and secretly with him as we could.
The psychiatrist in his new area, although more approachable, still didn’t grasp the link between the onset of his illness and his starting to take RoAccutane – isotretinoin and later Seroxat, and didn’t want any conversations with us as a family. Nor was he interested in the fact that Olly had had fits on Risperdal, which had also been ignored by our family GP at the time. He did not seem to understand Olly’s constant acute anxiety, feeling of dread, and worst of all, the endless suicidal thoughts. He appeared to put all these down to body dysmorphia from the acne.
Nothing else made sense
Olly did too, because nothing else made sense. His life was otherwise fine and he had such plans and interesting ideas, and the skills to carry them through. Olly told us that he could only assume his suicidal thoughts were linked to the times when some of his peers at school had described him as ugly, and he had feared ugliness ever since hearing the damning words of the Dermatologist when he was 15.
He never returned to University, but the Dean assured him that his place would be kept open for him indefinitely. He managed to find work experience in various big web design and e-commerce companies, battling the paranoia and panic, which beset him particularly on the train journeys to and from various cities. The worst part of it all was that he couldn’t fathom where these feelings were coming from.
Eventually he formed his own publishing company and his own web design and e-commerce business, becoming an employer. He did extraordinarily well, and garnering all the determination he had, managed to give presentations to large groups of clients in major companies. They would never have guessed he was battling incessant background thoughts telling him to kill himself, and shakiness and fear. He was driven by a need to overcome the weakness he felt must be within him as a person, causing his symptoms.
He built such a successful business he could afford to get his acne properly treated and any scarring removed. He went to Professor Chu, a well respected London dermatologist specializing in acne. Over the years up until 2011 he had had several courses of RoAccutane but they had not made a lasting or significant difference. This consultant used Blue Light and laser treatment.
Dr Chu was quoted in the Daily Mail in 2013 Chu warning that, while isotretinoin treatment can be a cure in some cases, ‘in my experience 50% of patients will relapse after a course of treatment. This can be very fast, within two weeks of stopping the drug, or it may be several years later. Another rare side effect I’ve seen is chronic fatigue. I once had a bright straight-A-star patient who developed this after taking RoAccutane for four months. It had persisted after stopping the drug. He subsequently dropped out of Oxford University. Although his acne cleared, he never recovered from the chronic fatigue and sadly two years later I learnt that he’d taken his own life. I think his suicide may well have been related to RoAccutane. Although the drug only stays in the system for about a month, the effects on the brain can in some cases be permanent. A biological switch is flicked by RoAccutane and sometimes it doesn’t turn off or on again. All these side effects are rare but there is no way of predicting beforehand whether a patient may be affected. My experience has made me very cautious about prescribing it. You have to weigh up the benefits against the potential side-effects – in severe cases of acne that hasn’t responded to treatment, it is worth it, but in milder cases, it probably isn’t.”
Over the years, more courses of RoAccutane did nothing for Olly, except to make him even more anxious and suicidal. As far as we know, Dr Chu did not prescribe it for him but his skin improved amazingly and the laser work took away a great deal of the scarring.
On the recommendation of his psychiatrist who he now saw rarely, Olly also found himself a London psychologist who dealt with anxiety triggered by body dysmorphia, which was the only thing Olly could think of that might be causing him subconsciously to still have the overwhelming low mood and agitation. He was delighted with his skin now. He and we had never heard of akathisia. The psychologist suggested Escitalopram which a psychiatrist prescribed. We noticed at once that he became even more anxious and at one point, in total desperation, he got in touch with Samaritans, who were very supportive and invited him to attend courses.
Sadly, in April 2012 he was put under a lot of stress due to work and social pressures and moved flat to get away from a romantic and uninvited complication. He really also felt so ill by this time, having had the dose on the Escitalopram raised, that the psychologist suggested a few days in our local NHS hospital, where he assumed he would get good care. The in-house psychiatrist there said he could not find anything wrong with Olly but changed his medication to Venlafaxine. Hospital was the wrong place for him, as he was scared, out of his depth amongst very ill people who berated him about his love life, said he looked ugly and possibly gay and generally insulted him. He was frightened to ask if he could leave, his mind so confused now on Venlafaxine and off Escilatopram that he didn’t realise that he was only there voluntarily.
The hospital offered Home Treatment for 6 weeks, which meant a social worker would come to see him daily for a few moments to deliver Venlafaxine, Diazepam, and Zopiclone and to talk about writing a diary, sleep hygiene and CBT. This went well for a week or more, and then the Home Treatment Psychiatrist came to do an Assessment. He would not listen to any history whatever. He raised his arms and said he didn’t need to know, he had already made up his own mind (in half an hour or so!). He told Olly that he was not depressed and therefore the drugs were doing him no good, so he should stop them at once.
Olly was relieved to feel that there was nothing wrong with him, but there were unpleasant veiled hints about immaturity and personality disorder, and parental ineptitude, and this puzzled him and us even more. Olly asked what would happen if the CBT being offered did not work. He had been doing CBT with his psychologist for a long time and could have written a book on it. The psychiatrist laughed and said if it didn’t, he would shoot the social worker. It was all very jovial. Olly was in one way pleased that the expert thought there was nothing much wrong with him, but in another, wondering why he had been suffering this anxious hell for so long.
He stopped Venlafaxine and all other medications immediately as he’d been instructed, and within two days he again became what we now know to be very akathisic. He couldn’t rest. He was trying to run his business from a distance, and he had sensations like electric shocks zapping his forehead, skull, and into his nose. He couldn’t sleep but if he momentarily did drift off, he had terrible nightmares. The feeling of dread was overwhelming.
He reported this to the social worker. Another meeting was set up, a week later in Olly’s own flat and the whole Team came, as did we. We again tried to tell the psychiatrist about the acne treatments and how all this anxiety had started way back with RoAccutane in 2001, but we were shouted down again and ridiculed. He berated Olly for non-co-operation, saying he was sure he would kill himself but he would rather he did it in hospital than out in the community where it might affect any of the public. He told him if he didn’t address his OCD suicidal feelings, as he called them, he would have a terrible life as they would go on forever. He then described in detail Olly’s suicide plans in front of us all. He ended by saying he was stopping all Home Treatment, there and then. Olly begged to be allowed to keep it, saying he would do anything to make amends for whatever he was seen to have done wrong. ‘No,’ shouted the psychiatrist, ‘its too late, you’ve done it to yourself.’
He added that he’d been looking back at the Notes of 2003 and it was ‘the same old story’. Yes, of course it was, it was the same akathisic reaction to the medication as we could have explained, but this man seemed too arrogant to listen. He put Olly onto Olanzapine, which made his akathisia even worse, and then a new Out Patient psychiatrist added 200 mgs of Sertraline for good measure. Olly’s acne was coming back with a vengeance, and he had been totally humiliated and branded as attention-seeking in front of the Team. Something triggered the acne again – it may have been the Olanzapine. It broke his spirit, having spent so many hundreds of pounds on treatment, to see it all being undone before his eyes.
Twenty days later, having been so humiliated, lost all hope and self- esteem, and having made a Will, he attempted to drown himself at midnight in a river out in the countryside, cutting his arm open first. At the last moment, the shock of the cold water gave him second thoughts, and he dragged himself out and drove to our home. We found him covered in blood and mud, dripping on our doorstep at midnight. Police arrived with paramedics who bound up the arm to stop the blood flow, and we took him to A&E where he sat all night with us in a cubicle eventually having been stitched up. Next morning, despite having told us that the pain in his head was so terrible he would have to die to escape it, and begging us to kill him, he was discharged when we were momentarily absent, having told the social workers he was fine now, and all was well. And they believed him!
For a further month he had a few home visits from another social worker, one that was responsible for overseeing his care. This very aggressive man used to say ‘Still alive then Olly, not dead yet?’ when he answered the door to him, and ‘we know you didn’t really mean to die, if you had, you’d have done it properly and cut an artery.’ Olly’s father, sometimes present and witnessing these exchanges, suggested that this attitude was extremely unhelpful.
Olly was now complaining of terrible bursting pains in his head for which he was taking paracetamol. We had known him for 32 years, and knew he was never attention-seeking so we tried to raise the alarm with our own GP, trying to get anyone to take seriously the fact that he was beyond all hope now, before the inevitable happened. But no one with power would listen. We were confidentially warned by other staff not to antagonise the psychiatrist by complaining to the Service because he would become even angrier and take it out on our son. We were advised to try to change consultants, but the first appointment he was offered was 3 months away. His new GP tried to speed things up for this referral but seemed to be blocked.
By the end of September Olly was dead. He had made sure the method he used was fail-safe this time and it was done in such a considerate way that no member of the public was inconvenienced, not even his mum and dad. We had tried so hard to save him, and felt we had fallen at the last fence.
Continued in Roche and The Perfect Circle.