There is a nationwide crisis with the lack of services for individuals with Tourette syndrome and Tic Disorders.
Families are faced with barriers from every angle when they are dealing with tics in a child or loved one.
The lack of knowledge, awareness and understanding from professionals and schools is alarming, especially considering the prevalence of tics/ Tourette's being the same as Autism, which is a well recognised, supported condition (in most areas).
What do some of these barriers look like when seeking a diagnosis?
There is a lack of education in the medical sphere. I have lost count how many cases I have heard of/ been involved in, where families have gone to their GP, worried and concerned and have been turned away! When a parent goes to a GP service, they need to be listened too, taken seriously, have their concerns validated, and an action plan designed. Around 20% of school age children are affected by a transient tic disorder, which passes, however these can develop quickly from one or two simple tics to several complex tics and even into Tourette syndrome.
So often, worried parents who have sought advise are told "tics are common in school age children, come back if it lasts over a year", "ignore it, it will go away" or "they're doing it for attention".
This needs to stop!
If your child has a tic(s) and you haven't yet sought advise from your GP, keep a diary, take videos, then go to your GP and have it logged on their records. This will help if it does develop into something more than a "childhood tic they will grow out of". If you have already been to your GP and have been brushed off or told to come back after a year, go back and request a referral to a neurologist, it is your right to seek advise or a second opinion - click here to learn more.
There is also a lack of knowledge in the educational sphere. If I was paid for eveytime I heard, "they don't tic in school", "I've never seen it", "they save this behaviour (tics) for you" I would be RICH!. Teachers need to be educated in Tourette's, they need to know that firstly, it's extremely common for children to mask/ suppress their tics in school so they need to listen to parents concerns and support them seeking help, and secondly that Tourette's is more then just tics, so even if you as a teacher are not witnessing "tics", you may be seeing the other components of living with a tic disorder. Tourette's Action offer incredible teacher and peer training remotely, resources for schools including social stories, parent advise and advocacy and can even assist with 1:1 cases if you require support - contact their education manager Lucy Toghil at firstname.lastname@example.org.
The institutions designed to address these issues are over stretched. Not sure where to even start with the Child Adolescent Mental Health Services (CAMHS), but I would firstly like to stress to you all that this isn't their fault. There are so many incredible individuals who want to do more, they want to help but the budget doesn't allow it. The blame falls at the feet of the money givers!! CAMHS are stretched to breaking point with ALL conditions, many now only work with 'mental health', with only very very few in a position to take referrals for neurological conditions and even then it's near on impossible to get accepted due to tics alone. Families wait sometimes years to have their referral rejected, some are rejected 3,4 plus times. In the mean time some of these children end up with CAMHS but this is because they have been failed so miserably with no support that they now also have mental health issues too.
What do some of these barriers look like after diagnosis?
In many cases, individuals who have sought a diagnosis, have done so when tics were challenging but not life limiting, so are diagnosed but offered no support. At the very most, they may have been lucky enough to of been offered medication as a preventative/ management system. Medications are hard to obtain for tics, as there are only a select few professionals who are in a position to prescribe them and it requires careful management due to common side effects. I am far from against medication, it's been life changing for our family with my sons tics and co-morbids BUT it doesn't cure, it only masks and makes symptoms manageable.
Now let's talk therapy and tics...... no I'm not talking CBT where you can talk your tics away (Although CBT can be very beneficial for individuals who's tics are worse due to anxiety / stressors) I am talking 'Comprehension Behaviour Intervention for Tics' (CBiT) - CBiT is a research based Intervention specifically for tics, and is recommended as the first line treatment, before medication, for tic management by the American Academy of Neurology, HOWEVER the majority of GP's and other medical professionals have never heard of it, or worse still, they know about it, but there is no funding, or trained practitioners to deliver it.
For more information on CBiT - click here
How do we change this?!
Specialist Clinics | Funding | Education | Join the campaigns
Every county needs a specialist clinic for tics, the prevalence of tics is rising, especially during the current pandemic and families have nowhere to turn.
There are only three specialist centres in the U.K. that provide care for tourettes. 2 in London and 1 in Sheffield. There was a specialist doctor in the north west but he is no longer working and families who were under his care are being discharged with no other provisions being provided.
We all need to stick together, together we are stronger, we need to fight, for our loved ones, our children and their children. Join campaigns, write to your local MP, complain to the CCG. Let's make a difference, let's get support for the Tourette's community.
You can find your local MP here
You can find your CCG here
Join the Campaign
There are 2 campaigns currently running, that I am aware of, one in the North West and one in Sussex - please take 5 minutes of your day to help us fight for services that should already be available.