MHS0006

Written evidence submitted by Shire

As a company, Shire has over 20 years’ experience in Attention Deficit Hyperactivity Disorder (ADHD) and we are committed to improving the life chances of patients with ADHD. Our vision is to help revolutionise society’s approach to ADHD so that no one is stigmatised or limited by their condition. We work in partnership with the ADHD community to challenge misconceptions, raise awareness and improve services and support for people affected by ADHD.

Evidence summary

• Undiagnosed ADHD costs the UK billions every year.[i] ADHD is a common neurodevelopment disorder with on average, one person with ADHD in every classroom[ii].  Many people with ADHD are also known to have co-morbid conditions.

• Despite funding increases, there are a lack of accountability mechanisms to improve the understanding and accountability of spend and activity across the whole system[iii]. Sustained funding increase for mental health services has historically overlooked and under prioritised ADHD.  Ensuring mental health policies are alert to the treatment and diagnosis of ADHD would be relatively simple for the Government and alter the course of thousands of lives.

• Currently, data sets for mental health conditions are inconsistent and inadequate across the NHS, including for ADHD. The lack of data on mental health conditions makes it difficult to understand the number of children and young people with these conditions and the level of support that they currently receive.

• Meaningful measures on waiting times for all mental health conditions, specifically for ADHD, should be introduced, with waiting times based on receiving both an accurate diagnosis and access to treatment. Despite the common occurrence of ADHD, healthcare provision remains “unresponsive to a condition that affects so much of the population”[iv]

• A robust link between schools and CAMHS facilitates timely diagnosis and access to appropriate treatment for individuals with mental health conditions.  The proposals set out in the Transforming children and young people’s mental health provision: a green paper, could play a role in this if initiatives are properly resourced, with capacity created in the system.

• Across the country, planning for transition to adult services is not consistent.  Transition between CAMHS to adult services occurs at a time of significant physical, psychological and social change.  Mental health services for children and young people with conditions, such as ADHD, should therefore include measures to prepare them for these parts of their life

Unmet need of children and young people with ADHD

1. Attention Deficit Hyperactivity Disorder (ADHD) is a common neurodevelopment disorder with on average, one person with ADHD in every classroom[v].  This equates to more people than other perhaps better-known disorders, such as autism. Estimates suggest that ADHD affects around 5% of school-aged children, equating to over 230,000 children and young adults.

2. Many people with ADHD are also known to have co-morbid conditions, with two thirds of children having a linked psychiatric disorder[vi], such as depression or anxiety. A review of children and young people with ADHD found that almost half have 1-3 comorbidities at the time of their ADHD diagnosis[vii].  These conditions can be exacerbated if the underlying ADHD is not identified and treated.

3. Undiagnosed ADHD costs the UK billions every year.[viii] Early identification, diagnosis and effective management of ADHD can help to mitigate long-term mental health and social problems. Without proper treatment, 39% of children with ADHD are excluded from school[ix] with negative impacts which can continue into adulthood. There is evidence which suggests that there are disproportionally more individuals with ADHD within the criminal justice system,[x] and those with ADHD are twice as likely not to take up full-time employment[xi].

Mental health funding and improving accountability

4. In recent years, there has been a sustained increase in funding for mental health services. However, within this ADHD is a condition that has historically been overlooked and under prioritised.  For example, ADHD was not mentioned once within the implementation plan for the Five Year Forward View For Mental Health[xii]

5. There are a lack of mechanisms to improve the understanding and accountability of spend and activity across the whole system[xiii].  This lack of transparency is often evidenced as a result of block contracts for CAMHS services. These contracts can make it difficult to source information, such as the number of people they commission ADHD services for, the spend on services, or indeed the specific conditions within the block contract[xiv].

6. Ensuring mental health policies are alert to the treatment and diagnosis of ADHD would be relatively simple for the Government, would alter the course of thousands of lives and make significant cost-savings for society and the individual[xv].  In addition, given that two thirds of children with ADHD also have a linked psychiatric disorder 6, policies that are cognisant of ADHD could prove beneficial across the mental health spectrum.

Data collection for mental health conditions

7. Currently, data sets for mental health conditions are inconsistent and inadequate across the NHS. Data is a vital tool for understanding the current provision of services for the management and treatment of mental health conditions. However, data for mental health conditions, particularly ADHD, has historically not been collected nationally, making it very difficult to plan services20.

8. The lack of data on mental health conditions makes it difficult to understand the number of children and young people with these conditions and the level of support that they currently receive. This was noted by Parliamentary Under-Secretary of State for Health and Social Care, Jackie Doyle-Price MP in a recent Westminster Hall debate16.

9. Effective national data collection is therefore critical to evaluate success, alongside a more robust approach to routine coding of all mental health conditions, particularly ADHD. It is encouraging to see that NHS Digital is working with NHS England, NHS Improvement, commissioners and providers to improve data collection through a Mental Health Services Data Set. However, more information needs to be presented on which mental health conditions will be included in this data set.

Improving waiting times for children and young people with mental health

10. Despite the common occurrence of ADHD, healthcare provision remains “unresponsive to a condition that affects so much of the population”[xvi], with the quality of ADHD services for children and young people varying across the country and waiting times inconsistent. For instance, in Kent, it has been reported that up to 800 children have been waiting nearly two years for an assessment for ADHD[xvii]. The CQC has highlighted waiting times for children and adolescents with ADHD as an area for concern[xviii] and average waiting times from referral to first outpatient appointments range from 14 days to 187 days[xix].

11. Meaningful measures on waiting times for all mental health conditions, specifically for ADHD, should be introduced. Measurement of the waiting time should be based on receiving both an accurate diagnosis and access to treatment. The Government’s Transforming children and young people’s mental health provision: a green paper, proposes a new four-week target for referral be introduced, and it is anticipated that the upcoming NHS 10-year plan will also see the introduction of new waiting time standards for mental health.  However, it is not clear which mental health conditions these new targets will apply to.  Waiting times should not be limited to only certain conditions, as this risks entrenching variation in access to services and favouring particular conditions over others.

12. Any improvements in waiting times will also need to be supported by increased capacity within the system. For example, as a result of their review of mental health services for children and young people (CYP) the Care Quality Commission (CQC) has recommended that local transformation plans (LTPs) must be obligated to explicitly set out a local offer for children and young people’s mental health and wellbeing[xx]. The aim of this objective is to ensure that all young people have equitable access to high-quality care.

Improving cross-sector working

13. A robust link between schools and CAMHS facilitates timely diagnosis and access to appropriate treatment for individuals with mental health conditions.  As noted by the CQC, collaborative working across sectors is crucial to improve support and outcomes for children and young people with mental health conditions 20. This is especially pertinent for conditions that tend to present in childhood, such as ADHD and other neurodevelopmental disorders. For example, the symptoms of ADHD often become apparent when a child is of primary school age and in their first year of secondary school (6-12 years old)[xxi].  

14. The proposals set out in the in Transforming children and young people’s mental health provision: a green paper, must play a role in this. However, the Government must ensure that initiatives are properly resourced, with capacity and accountability in the system. The initiatives in the Green Paper set out a new approach in schools, with the creation of mental health support teams.  However at this stage, this is to be introduced through a number of trailblazer approaches, rolled out to only 20-25% of the country by 2023.

Planning for transition to adult services from CAMHS

15. Transition between CAMHS to adult services occurs at a time of significant physical, psychological and social change. The Government acknowledges this is a time when young people are particularly vulnerable to developing mental health issues[xxii] and can be problematic for children and young people with existing mental health problems.

16. Across the country, planning for transition to adult services is not consistent[xxiii], and can often lead to disengagement from services altogether. The recent report from the joint Health and Social Care and Education Committee in response to the Government’s Green Paper highlights that young people are “falling through the gaps” and not receiving the services they need as they enter adulthood[xxiv]. This can have a detrimental effect on people with ADHD which can last their lifetime, costing not only the individual, but their family and society[xxv].

17. Mental health services for children and young people with conditions, such as ADHD, should therefore include measures to prepare them for these parts of their life. This should facilitate collaboration between sectors (i.e. Schools and CAMHS) to ensure a seamless continuation of care. This could greatly minimise the risk that an individual’s mental health condition will worsen. A care co-ordinator (or similar role) will help support them through this process.

18. In the North East, there are best practice examples of managing the transition from CAMHS to adult mental health services, underpinned by protocols for securing continuation of care.  Under these protocols, transition to adult services should start when the young person is 17 years and 6 months old and should include: discussions around the need for ongoing care; agreement that transition is required; a joint meeting with adult mental health services and CYPS to explore ongoing treatment; preparation for greater patient responsibility; and a clear care plan[xxvi].