International consequences: consequences and barriers to NICE guidelines in the UK for tics and Tourette Syndrome
As somebody who has worked in this field for over 10 years one of my main aims in my work is to increase the awareness and acceptance of Tourette syndrome and other tic disorders. I'm passionate about providing this misunderstood patient community with better treatment and management that they deserve. My work also involves training healthcare professionals to recognise and offer treatment and support to patients. This is very much in demand and I have more and more healthcare professionals coming to me, keen to learn more and better serve their patients. 82% of healthcare professionals who attended BTTI (Behavioural Therapy for Tics Institute) training and completed feedback felt that NICE guidelines for tics and tic disorders would help offer diagnosis and treatment to patients.
Recently there have been attempts to push forward for NICE (National Institute of Clinical Excellence) guidelines in the UK for patients who have tics and tic disorders like Tourette syndrome. In November there was a topic prioritisation group meeting group organised by NICE who decided that Tourette syndrome should not be prioritised for development of NICE guideline development at the current time. The reply from Dr Samantha Roberts the chief executive of NICE replied saying that this group does not consider this topic to be a national priority at this time. Tic disorders like Tourette Syndrome have an enormous effect on those living with the condition and their families and carers and this decision is indeed disappointing, but I would go further and say in fact it is devastating. Of course, NICE must focus its resources on topics where it can add what NICE perceives to be the most value and have the biggest impact on improving health and care outcomes. There are inexistence NICE guidelines for many different conditions often that co-occur very strongly with Tourette syndrome such as or OCD and ADHD. It was felt that those conditions were important enough to have NICE guidelines. It has been estimated that there are over 300,000 people with Tourette syndrome in the UK but it is generally acknowledged that this number will in fact be far higher. There is also an understanding that leaving people without access to treatment and management for their condition impacts on their mental health.
One of the difficulties may be that the case for having NICE guidelines for tics and tic disorders has not been made effectively enough to this cross-agency topic prioritisation group. This group includes senior executives from NHS England, the Department of Health and social care as well as NICE representatives. However, we know that some of the key players in the UK that have expertise about Tourette syndrome both from healthcare and patient support were consulted before this meeting and reactions from the group were positive. So the result is both surprising and frustrating.
One of the long-term problems in every country with the issue of Tourette syndrome is that it is often perceived as something that is rare and severe. Other professionals and myself both in the UK and across the world have been battling for many years to correct these misunderstandings. With the same prevalence as childhood epilepsy and autism at 1% (that's 1 in a 100school children) Tourette syndrome can no longer be regarded as a rare and a mysterious condition, but this seems to be something that this cross-agency group have chosen to ignore or are not aware of.
Not only is this result to not even consider the development of NICE guidelines disappointing it's also frustrating for so many patients in the UK and those internationally who look to the UK for guidance in terms of how they treat their patients with tics and Tourette syndrome. So this frustrating result will have a huge knock on effect for all other countries who are pushing for better treatment and management of tic disorders like Tourette syndrome. How can patient associations and advocates in other countries argue to governments and healthcare systems to take this condition seriously and serve the patients as they deserve when we can't even hold up the UK as an example of this?
How can we better understand this decision? The community of both patients and their families, healthcare professionals, teachers and patient associations need to increase their campaign work to further highlight the importance of such guidelines for Tourette Syndrome.
Political pressure needs to be applied in all cases with patients and healthcare professionals writing to their politicians in their countries to show that not only is this a need but that the need is urgent highlighted by another recent suicide of a young patient at the heart of the Tourette syndrome community in the United Kingdom. This only this only goes to show the gap between patient need and healthcare provision. There is evidence showing that somebody with Tourette syndrome is four times more likely than the general population to die by suicide. We have the evidence both from healthcare professionals and from patients and their families that this is a severe issue which needs addressed before more young lives are lost.
What will it take for their voices to be listened to?