Objective To assess the unmet need for comprehensive behavioural intervention for tics (CBIT) and habit reversal therapy (HRT) in adults and children with Tourette Syndrome.
Method Patients with Tourette Syndrome who attended the St George’s clinic between 2004 and 2015 were selected for the study (Total 388). Basic clinical characteristics and the status of CBIT/HRT was assessed for each case. It was classified as being: (1) recommended by the clinician, (2) directly referred for therapy, (3) actually received therapy, (4) stated not suitable as not indicated for reasons such as significant learning difficulty or implied lack of availability of therapists or (5) explicitly stated to be inaccessible for the patient or (6) not mentioned at all in the notes.
Results Of the 388 patients 24% were female and 76% male. 41% were adults and 56% were children of 17 years and under.
In total only 111 (29%) had behavioural therapy mentioned in their clinical notes. This has increased over the years with an increase from 6% in adults in 2005 to 43% in 2015 and from 11% in children in 2005 to 78% in 2015.
23 patients (6%) were categorised as not suitable.
Behavioural therapy was recommended but not eventually provided to 31 of these patients (8%). In a further 35 patients (9%), behavioural therapy was deemed inaccessible by the clinician to begin with, before any attempt was even made for a referral.
Only 18 (5%) patients were actually referred for behavioural therapy and 4 (1%) patients out the total 388 received behavioural therapy (2 children and 2 adults) although missing notes may have reduced this number.
Conclusion Behavioural therapies are an evidence-based treatment for Tourette syndrome. The data presented here were extracted from clinical notes and were not collected prospectively for this purpose so it was often difficult to know if clinicians omitted explicit mention of CBIT/HRT because of lack of availability or on the basis of patient selection. Increasing interest over the years is however demonstrated here by an increasing focus in the patient notes, but there is still very little access to this form of treatment, a national problem. Anecdotally, many more referrals have been made for children from this clinic to another centre in the last 12 months. Under provision in the NHS of specialised psychological services for Tourette syndrome needs to be urgently addressed.
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