Emma McNally is the parent of a child with Tourette’s. Following her family’s experiences and her research into Tourette’s and existing services in the UK, she is now campaigning, both to raise awareness about this misunderstood condition and to improve services on offer to those that have it. Here she explains more about Tourette Syndrome, the path to diagnosis for her son, and offers some advice for other parents who suspect their child may have Tourette’s.
A bit about Tourette Syndrome
Tourette’s is a very misunderstood condition with very limited medical care throughout the country. I am working extremely hard to change perceptions and improve the medical care offered.
So what actually is Tourette’s Syndrome? Tourette’s Syndrome is a complex neurological condition that there is no cure for. It is characterised by involuntary movements and sounds called tics. Tics are movements or sounds that are done repeatedly. Movement tics are called motor tics and sounds are called vocal tics. To be diagnosed with Tourette’s you need to have at least one vocal tic and multiple motor tics and need to have had tics for at least one year, however these do not have to be the same tic, the tics can change all the time. Before a tic an individual usually experiences what is called a premonitory urge, this can be explained as a build up of increasing tension, which gets greater and greater until the tic is released and then it is temporarily relieved.
Many people think that Tourette’s is rare, it however it is thought to affect 1 in 100 school aged children, many often going undiagnosed or being misdiagnosed! Around 80% of people with Tourette’s will have other comorbid conditions, the most common occurring are ADHD, OCD and ASD. Sometimes individuals will not meet the criteria to get a diagnosis of these other conditions but they will almost always have traits of these conditions alongside their Tourette’s.
More on tics
Motor tics are things like:
- facial grimicing
- rolling eyes
- sticking tongue out
- kicking legs out
- pulling on clothes
- head jerking
- body extension and twisting
- toe curling
- touching things repeatedly
- dropping to the floor
- thrashing your body about
- twisting your body
- stomach clenching
- breathing in and out repeatedly
Vocal tics are things like
- throat clearing
- repeating words or phrases
- change in voice pitch, high or low
- animal sounds
Impulsive tics also often go hand-in-hand with With Tourette’s. These can include things like: running into a road, touching hot things, touching flames, squeezing the contents of bottles, throwing items, ripping up school work, scribbling over school work etc.
What we have learnt as a family is that practically anything can be a tic. Tics and the associated symptoms of Tourette’s are different for EVERY person with Tourette’s, no two people will have exactly the same symptoms.
Tics can change daily, this can cause confusion as people think “you weren’t doing that yesterday” we say Tourettes likes to keep us on our toes. Tics can also sometimes seem purposeful in nature and mistaken for “naughty” behaviour. Vocal tics may cause someone to shout things out about a persons appearance or make them shout things about a certain environment they are in, so for instance shouting “bomb” when at an airport. This does not mean that the person is thinking those things or wants to say those things. My son often says that he can feel that a vocal tic is coming but he has no idea what is going to be said.
The effects of tics
Lots of people that have Tourette’s hate the attention that it brings and have learnt to suppress when in public, this can bring problems of people not believing they have Tourette’s as they don’t see it. Suppression is exhausting and causes a lot of pain. Tics that have been suppressed come out later when home; usually with more ferocity and frequency, often causing tic attacks. Tic attacks are tics that continue for hours with no break, they are extremely distressing and exhausting. Its like running a race, being out of breath, being physically exhausted, wanting to stop but can’t, so the exhaustion and pain gets worse. Often, after a tic attack, individuals can be left exhausted, in pain, with muscle strain, and emotional.
Tics can cause injuries such as: repetitive strain injuries, broken bones, dislocations, cuts and bruises, bleading toes, bleeding throat, to name a few things. People with Tourette’s talk about feeling pain daily, this is to do with the repetitive nature of the tics, often suffering with headaches and tiredness from the strain tics put on the body.
If this wasn’t enough to deal with, they also have to deal with small minded people in society. We have had lots of people stare at us, tutt at us, move their children away from us; some children are also scared of the noises made. For a parent, witnessing these things is heart breaking. It’s like a knife being put into your stomach. If awareness was better, maybe these things wouldn’t happen so much and would make Tourette’s, which can already be an extremely isolating condition, a little easier to deal with.
Treatment and support?
Tourette Syndrome remains one of the most complex and misunderstood conditions, even by professionals and is a lifelong condition. In my experience, many people – even professionals – still believe that you need to swear to be diagnosed with Tourette’s. They also still believe it is behavioural. Both statements are incorrect! Between 10% and 20% of people with Tourette’s swear and Tourette’s is a neurological condition not a behavioural one. When it comes to treating the condition, there is currently minimal treatment available.
Treatments offered can include: medication or CBiT (Comprehensive Behavioural Intervention for Tics). CBiT is often misunderstood by its name, making people think that tics are often behavioural in nature, when they are not. CBiT can help individuals change bothersome tics into a less bothersome tic, so if the person had a tic that was causing them huge amounts of pain, they would be taught by the therapist to first concentrate on the premonitory urge associated with this tic and then going forward when ever they felt this urge they would be shown a different movement to do, over time it is believed that the pathways in the brain change and this tic will in fact be amended to the new movement which is not as bothersome.
A little bit about our journey with Tourette’s
My son was diagnosed with Tourette Syndrome at the age of 9. Looking back he had had tics from around the age of 2 or 3 but back then we weren’t aware they were tics. They were small things such as blinking, rubbing his nose, moving his glasses, coughing, pulling on his trousers. He would have one tic at a time that would last a few months or so then disappear, and then a month or so later a new one would appear. They didn’t seem to bother him and as they came and went and changed, we had thought they were “nervous habits” and nothing to worry about. Over the years, the tics would usually appear at times of stress, usually when starting a new class at school or returning to school after a holiday.
When my son was almost 9 his tics took on a whole new level. He developed a whole host of new motor and vocal tics, which were all coming together thick and fast. Some of the tics were quite forceful and resembled seizures in nature. We went to our GP, were referred to a neurologist and we received the diagnosis of Tourette’s.
Initially we knew nothing about Tourette’s. We had thought it was characterised by swearing (as is often portrayed in the media), and have been totally blown away and shocked by what it actually entails. It can be totally debilitating and can strip an individual of their independence. Things we once took for granted became impossible. Taking showers alone, writing, reading, sleeping, all became very difficult. The amount of pain that Tourette’s causes is unbelievable and the hardest thing as a parent is not being able to stop the pain. Having your child cry and ask for you to make it stop is heart wrenching, the pain gets worse and the tics just keep on coming.
The struggle to find care and support
In March 2020 my sons neurologist retired and this led to us being discharged from the hospital along with many other north west families. At this point I tried to get another neurologist or professional in the North West. I was extremely shocked to find that there were no such professionals available in my local area.
I trawled the internet, contacted helplines, complained to my CCG, MP, and hospitals. I joined many Tourette’s support groups asking who other people see and what I found was that certain pockets of the UK had amazing care where children could get diagnosed and access treatment and support for their Tourette’s; in other areas of the country however, people were fighting to get a diagnosis and ongoing support.
This problem for children getting care for Tourette’s was the same for adults with Tourette’s. Some amazing Tic clinics exist but unfortunately these clinics only accept local referrals, so if you find yourself with no provision locally, your only option is to get a referral to one of the clinics in London such as GOSH and St Georges which do indeed accept out of area referrals. This in itself however provides its own set of problems, one being is that they like the referral to be made by CAMHS as often once diagnosed the care plan is then passed on to local CAMHS teams to continue. However if CAMHS in your local area does not treat Tourette’s as part of their remit, then this means that you are unable to get a referral to one of these specialist clinics in London, so are left with no local care and unable to get care further afield.
Many families are often forced to pay privately for a diagnosis but are then diagnosed and discharged in the same appointment, with no future help, often just being passed a leaflet.
Fighting for better services
This lack of care and lack of pathway for people with Tourette’s led me to starting a petition and a campaign to try and change things. I felt angry that with any other condition I could think of, you could rest assured that you could go to your GP, your GP would refer you to a service and you would then receive a diagnosis and on going care, so why was this not the case for Tourette’s? It was not right and I wanted to change this!
I also found that there are no NICE Guidelines for Tourettes in the UK. Which means in essence, that there are no guidance for GPs on who they should refer to and also no guidance for CCGs as to what service they should provide for people with Tourette’s, so often they provide nothing!
The petition sadly did not receive the 100,000 signatures needed to secure a debate in parliament, it ended with 71,035 signatures. However my MP Conor McGinn is pushing for a debate nonetheless, and is trying to help us fight for better services.
Since the petition closed we also found out that even if things are decided in Parliament, the people of Wales will not be covered by this and will need their own petition with the senedd. They need 10,000 signatures rather than the 100,000 the UK petition needed, so hopefully this can be achieved and things can improve. They have only 1 specialist in the whole of Wales and they only treat adults! If you would like to sign it, please find the link here.
Advice if you suspect Tourette’s
For anyone who suspects their child has Tourette’s, my advice would be to firstly go to your GP and ask for a referral to a neurologist. If you are not successful in accessing a diagnosis or care due to lack of services locally to you, then I would strongly recommend that you write to your CCG, Parent Carer Forum and MP highlighting the issue locally.
Secondly my advice would be to surround yourself with good friends who understand (unfortunately not everyone will understand) and join a local support group where you will find so much help and understanding. These people understand you, they are fighting the same battle, they get the struggles, they can offer endless advice; and if all else fails you can laugh together.