Written Evidence Submission from OCD Action (CMH0152)

About OCD Action

OCD Action is the largest national charity focusing on obsessive compulsive & related disorders such as Body Dysmorphic Disorder (BDD). We provide support and information to anybody affected by OCD, work to raise awareness of the disorder amongst the public and frontline healthcare workers and strive to secure a better deal for people with OCD.

Executive Summary

• Approximately 300,000 young people under 16 have Obsessive Compulsive Disorder (OCD) in the UK.
• OCD is treatable with OCD-specific CBT (CBT + ERP) but early intervention & treatment leads to better outcomes.
• Huge variation in awareness & understanding of OCD and its treatment amongst CAMHS services across the UK.
• Very little OCD-specific CBT available through CAMHS services leading to unacceptably long waiting times and deterioration in young people’s condition.
• Poor levels of involvement & support for families.
• Lack of awareness by CAMHS practitioners of NICE Clinical Guideline’s1 recommendation of ‘stepping up’ a young person’s treatment to a national & specialist OCD service.

Introduction

1. OCD is a mental health condition where people largely have both obsessions & compulsions. Obsessions are unwanted negative repetitive thoughts or images that cause great anxiety to the individual and compulsions are the actions or thoughts that the individual feels compelled to engage in to reduce their feelings of anxiety. It is thought that 1%-2% of the population have OCD. It is estimated that there are approximately 300,000 young people under 16 with OCD in the UK.

2. OCD is a very treatable disorder where the sooner OCD is diagnosed and treated the more likely a good quality of recovery can be achieved. The NICE Guideline on the treatment of people with OCD recommends that:

Children and young people with OCD with moderate to severe functional impairment..... should be offered Cognitive Behavioural Therapy (CBT) (including Exposure Response Prevention (ERP)) that involves the family or carers and is adapted to suit the developmental age of the child as the treatment of choice.

3. Through our Parent Support Service we have worked in partnership with the Maudsley’s2 national & specialist OCD service for children & young people with OCD who report that 86% show a significant improvement in their 14 week programme.

4. Through our Helpline, Advocacy & Parent Support Services we hear a great deal about the difficulties faced by parents of children & young people with OCD when trying to access care & treatment through local CAMHS. Through this feedback from parents we can see that the quality and accessibility of treatment through CAMHS varies widely across the UK.

5. OCD can be an extremely isolating disorder for both the sufferer and their immediate family and parents often find themselves not only having to deal with the challenges of supporting a child or young person with OCD but often also having to educate their local team as to NICE-recommended treatment, to chase them for appointments and information and referrals to national & specialist OCD services when local services have been exhausted.

6. We welcome the government’s commitment to improving access to psychological therapies for children & young people across the whole of England as documented by Closing the Gap3 but for young people with OCD it is vital that that treatment is OCD-specific and delivered in a timely fashion as otherwise they can find that their condition deteriorates and their schooling is lost while they wait for an assessment for CBT.

General Concerns

Generally parents have reported to us the following:

7. Poor level of understanding of symptoms, diagnosis, severity & treatment of OCD & BDD among CAMHS clinicians.

8. A shortage of CBT therapists with experience of delivering effective OCD-specific treatment with the result that only medication is prescribed or alternative non-NICE recommended treatments are offered such as art or play therapy, children & young people are left on waiting lists with very little interim support or even discharged by the CAMHS service having been told that their OCD is untreatable.

9. All of which leads to a delay in a child or young person receiving appropriate effective treatment and this delay often leads to a deterioration in the young person’s mental health and a loss of schooling. Evidence suggests that the sooner OCD is identified and treated the better the outcome and recovery. As many of the adults with OCD that we support report having had OCD as a child which was undiagnosed and untreated it is arguably more cost effective to treat OCD as early as possible.

The NICE Guideline suggests that:

If left untreated it can not only cause marked psychological distress, but can also disrupt social, educational and emotional development, leading to significant disability(Laidlaw et al., 1999; Leonard et al., 1993); there is also an increased risk of morbidity and comorbidity in adulthood (Rasmussen & Eisen, 1990b).

10. Where OCD-specific CBT is not available or has been tried by a child or young person with little or no benefit there is a general reluctance of CAMHS to follow NICE’s recommendation to ‘step up’ care & refer onto national & specialist OCD services. Often CAMHS Psychiatrists seem unaware that such a specialist OCD service exists and/or its referral & funding pathways. Additionally CAMHS’ clinicians are often reluctant to liaise with national & specialist OCD services for treatment advice & guidance.

11. Parents report that they are often left feeling in some way responsible for their child’s mental health problem due to the attitude of CAMHS practitioners.

12. Children & young people are often being discharged by CAMHS services even if severely ill as no appropriate or further services are available.

13. Despite Nice Guidelines recommending their involvement in treatment families are not being provided with support, advice and information on how to manage their child or young person’s OCD/BDD either during or while waiting for treatment.

14. Where a child or young person presents with a co-morbidity such as Asperger’s or Autistic Spectrum Disorder then CBT is often not offered as the decision is made that it will not be effective. This decision is frequently made even without CBT being attempted.

15. Often only limited attempts are made to engage children & young people with treatment without further exploration of possible reasons or an alternative approach. For example we were recently contacted by the family of a teenage boy with OCD who has spent 2 years without leaving the house even to go to school and as he would not meet regularly with the CAMHS Psychologist the only intervention offered was family therapy with his parents.

16. Children & young people with mild/moderate symptoms are often denied any therapeutic input by CAMHS as they are not deemed to be ‘ill enough’.

Transition

17. Children & young people over the age of 17 seem particularly poorly served by CAMHS services as parents and members of our Youth Advisory Panel have reported a general reluctance of CAMHS to take on children & young people over the age of 17 (seemingly preferring to wait until they are eligible for adult services).

18. Often children & young people are on long waiting lists for treatment with CAMHS and find themselves reaching 17/18 and being put on lengthy waiting lists with adult services with years passing before they’re able to access OCD-specific CBT. For example we were contacted by a parent whose daughter had waited for 2 years from 16 to 18 for CBT only to be transferred to the waiting list with adult mental health services which was a further year’s wait.

19. The preparation of young people by CAMHS for the transition to adult services is very poor.

20. Parents have reported that CAMHS are often reluctant or unavailable to liaise with a child or young person’s school even if that is the main place that their OCD manifests itself or if they are unable to attend school because of their OCD.

Recommendations

21. A universal treatment pathway for children/young people presenting with OCD/BDD which follows that recommended by NICE Guidelines to be adopted throughout the UK.
22. Higher levels of staffing of skilled, experienced CBT therapists with proven positive outcomes of treating people with OCD/BDD.
23. CAMHS to publish outcome data, waiting times & details of services available to children & young people with OCD/BDD.
24. CAMHS professionals to be made more aware of the importance of engaging with a young person’s school as currently it seems unlikely that the SEN reforms in the Children & Families Act4 introducing an integrated health, education & care plan will be successful.
25. CAMHS services to refer young people to national & specialist OCD services where local services have been tried unsuccessfully or are not available.

Notes