People often seem bewildered that it’s not simple to receive treatment for Tourette’s. Firstly, that there isn’t a cure or specific medication we all take and secondly that it isn’t as easy as asking the doctor for help. In the past I’ve been reluctant to share my experience of treatment as I didn’t want to criticise an underfunded NHS, particularly during a pandemic. Despite that, more people sharing the realities of seeking treatment will help improve understanding and hopefully drive an increase in funding.
Earlier this year we saw petitions being shared to increase funding to support diagnosis and treatment for Tourettes across the UK. At present the resources just aren’t there in many areas, with Wales not having any specialists at all. This is despite 1 in 100 people having Tourette’s, leaving a huge number of people needing access to neurologists. I’ve encountered many in the healthcare system who try to help, some who wish they could do more and others who make you wish you hadn’t even tried. I’m sure there are a wide variety of experiences when it comes to treatment and many will have found benefit in medication and been helped by specialists. Many more simply won’t have been able access sufficient support. This is my experience of seeking treatment and support over the past fifteen years.
After diagnosis at 16 and being shoved onto some pills that stopped the tics by making me fall asleep, support was nearly non-existent. I got on with things and despite ups and considerable downs, it was manageable until my mid-20s. At this point I went to the doctor with the naive hope that progress would have been made and help was on the way. He didn’t know much about Tourette’s and offered antidepressants. Despite childhood warnings about people pushing drugs, it turned out in my adult life I would be offered antidepressants around ten times more often than cocaine.
I returned to various GPs once a year to see if there were any new options before giving up for some time. When I reached my early 30s the Tourette’s and associated issues had worsened to the point that I often found it difficult to function. After several trips to the doctor, I was referred to a neurologist and warned the waiting list could be fairly long. Two years later I was in the waiting room for my first appointment at Maudsley. Precisely twenty years since I had first been diagnosed.
This was the first time it seemed like the condition was properly examined by anyone. There wasn’t the rush of a five minute doctor’s appointment or trying to explain symptoms to people whose only experience of Tourette’s was via The Undateables. While I didn’t know what progress would be made in terms of treatment, a specialist simply taking time to listen and show empathy was enough. I was diagnosed with Tourette’s for a second time and felt that regular sessions would at least provide a foundation of support for the future.
I was prescribed Risperidone at this point and while reluctant to take medication I decided to try it for a few months. I was anxious about it as I’ve seen Tourette’s worsen with circumstance and I know I’ve had plenty of times where it’s manageable without medication. I had also found antidepressants to be detrimental. My experience of Risperidone proved to be extremely difficult. Tics increased in severity, I couldn’t sleep and my mental state deteriorated. Not that I felt depressed, I just didn’t feel myself at all. In fact, I’ve never felt further away from it. By the next appointment with the neurologist, I stopped the medication and we discussed options for the future including help for ADHD, CBT and referrals for physio to help manage the pain and injuries the tics were causing.
Unfortunately, I was accidentally discharged from the system before my next appointment. I had contacted the hospital to reschedule due to being away and waited for confirmation of the new date. When this didn’t come and I contacted them again and was told I had missed an appointment and been discharged. Rather than updating the system to provide a new date, I would have to start again with a new referral from my doctor. Beyond the long wait ahead of me yet again, what bothered me most was the lack of aftercare. No one enquired why I had missed the appointment and whether I was alright. I began to understand why many people needing support for mental health and neurological conditions don’t survive.
I returned to my GP to request a new referral to the neurologist. The doctor was understanding of the situation and extremely apologetic despite none of it being his fault. He chased up the appointment many times but it was to be over two years before I saw a neurologist again. By this time, I had left my job due to poor health, we’d entered a pandemic, and my original neurologist had retired.
My next appointment would come via awkward video chat in September 2020. I sat waiting and wondering how long I should stare at a blank screen before I gave up. Around 45 minutes after my appointment time, the top half of a head appeared on my screen. He insisted his camera was fine and we carried on. Starting again trying to explain 30 years of Tourette’s to a stranger is difficult enough at the best of times, but full screen forehead made it harder than it needed to be. There was also the issue of trying to discern what symptoms were part of long COVID and what was due to Tourette’s. After discussing my desire to try to help the ADHD I was told I would be sent some further information and some forms to fill out via email to confirm the diagnosis (again). Despite chasing this several times, I received nothing for six months.
Our following appointment in March 2021 would also be via video chat but this time with the benefit of an entire face. Circumstances had deteriorated and it was clear I needed more support at this stage. There seemed to be some progress and I was told the forms would definitely be emailed straight after the appointment and we would try something to counter the ADHD before we looked further at options for the Tourette’s. I never received the forms. Instead, a month later I was told this neurologist was no longer working with patients and I would be referred to someone new.
At this point, not knowing if I had another two year wait ahead of me, I tried to explain my difficulties with Tourette’s to my doctor via online consultation. I spent two hours carefully going through the impact it was having, that it had worsened to the extent of not working enough and not having a permanent home. I requested treatment for ADHD again and a referral for physio to help manage the pain. The following day I received a short message saying that as I was no longer living in the catchment area of the surgery, I would be discharged from the practice.
In July 2021, after another long wait in front of the laptop, a video appointment with the latest neurologist started. He was staring down at his notes as we began talking and it became clear he had never seen any of my medical records or consultations with other neurologists. My expectations had been low and my heart was already sinking from having to start over when he asked, “so do you think you have Tourette’s?” That’s where we were 24 years after diagnosis.
“Are you fucking kidding me?” I didn’t reply as I sat politely enraged. We rushed through a long list of short form questions with any talk of the ADHD treatment from before completely ignored. He suggested trying medication again despite my explaining that I wasn’t keen after previous experience and that my circumstances were too unstable to make it feasible. The appointment was quickly brought to an end as he had another meeting. A quick follow up chat a week later confirmed his decision to ignore the ADHD and try the Tourette’s medication.
I was told we would catch up and discuss the impact of the medication in three months. I considered pretending I was taking it and it wasn’t having any impact just to move things forward. In the end there was no need as I didn’t receive a new appointment date. I chased this and was eventually told I had missed the appointment. Again, no one followed up to check the situation or that I was alright. At this point I needed a break from it for my own sanity. Accessing support had become counterproductive and I felt relieved to just close that door and focus on handling it myself.
I don’t know how we reached a situation where no support is better than the support on offer, but that’s how it felt. We can encourage people to talk about difficult issues, neurological conditions and mental health and tell them to seek help but ultimately it comes down to what support is available. I’m lucky I’ve been able to keep going regardless and come through the most challenging moments, but too many people are left to cope alone. I hope other people’s experience of treatment is far better, but it’s clear far greater funding for Tourette’s specialists is needed across the UK. Even if medication isn’t an option, the support it offers having someone listen and understand the condition is invaluable.