Written evidence from YoungMinds (LTC 18)

Summary

• Many children and young people could be defined as having a long-term mental health problem, but many more are likely to have more transitory mental health difficulties.
• About half of all adult mental health problems start in childhood. So whilst long-term management for mental health problems is important, it is essential that there is also effective early intervention provision.
• People with mental health problems often have multiple morbidities, and we know that they often struggle to access adequate mental health support.
• Only a quarter of young people with a mental disorder are in contact with specialist mental health services. Barriers to young people accessing services need to be addressed in order to prevent their mental health problems becoming chronic and enduring.
• A number of areas are developing home treatments or alternatives to inpatient provision. These include examples from the voluntary sector.
• Integrated working in relation to child and adolescent mental health services (CAMHS) is generally poor. Health and Wellbeing Boards are in a good position to bring together relevant agencies and ensure that children and young people’s mental health needs are reflected in their JSNAs and Joint Health and Wellbeing Strategies.
• The transition between CAMHS to adult mental health services is a perennial problem that still needs to be adequately addressed. Providing effective mental health and wellbeing support at what can be a very vulnerable point in a person’s life will reduce the number of young people developing long-term mental health problems.

1.    YoungMinds is the UK's leading charity committed to improving the emotional well being and mental health of children and young people by ensuring these issues are placed firmly on the public and political agenda. We achieve this though the provision of research, lobbying, influencing policy and campaigning. Driven by the experiences of children, young people, parents and carers we also raise awareness and provide expert knowledge through training, outreach work, and publications.

2.    We are pleased to see the inclusion of mental health in the brief for this Inquiry. Many mental health problems in children and young people are ongoing and fit the definition of long-term conditions as defined by the Department of Health. This is important because in the UK 1 in 10, or nearly 850,000 children and young people aged between 5-16 years have a mental disorder.[1] The prevalence will be even higher in some vulnerable groups. For instance, 36% of children and young people with learning disabilities will have a mental health problem.[2] Many more children and young people will experience mental health difficulties, but will not meet the clinical threshold and so will not be defined as having a mental disorder, but are likely to be very distressed.

3.    About half of all adults with mental health problems were first diagnosed in childhood. Therefore, effective interventions during childhood and adolescence can help prevent mental health difficulties becoming chronic and enduring illnesses. So whilst it is essential to provide effective support for long term conditions, effective early intervention should not be forgotten.

Multiple Morbidities

4.    Many people with mental health problems have more than one mental health problem, or they may have a drugs problem, or a learning disability. Having multiple-morbidities can have a great impact on the treatment received. NICE guidance, which provides evidence based advice on how to manage conditions, generally focus on a single condition. This means that there may not be guidance to help staff manage cases where people have more than one condition. Anecdotally we know that some services will not treat people with mental health problems if they also have a drug problem. We know that 71% of children with autism also have a mental disorder, and that many of them will not be able to access child and adolescent mental health services (CAMHS) (National Autistic Society, 2010).[3] So the long-term management of young people with multiple morbidities is fraught with difficulties and may result in some young people not accessing adequate mental health support.

Concern about Young People Not Accessing Mental Health Services

5.    We are concerned about the large number of young people who do not access mental health services, despite having a mental disorder. Research has found that over three quarters of young people with a mental disorder were not in contact with specialist mental health services, and just over two fifths were not in contact with any service.[4] These young people would benefit from specialist mental health services, but it is likely that many will not access mental health services until their problems become quite serious. Not receiving timely and effective treatment is likely to result in their mental health problems becoming chronic and enduring.

5.1.             Young people are put off accessing services for a variety of reasons, but the chief reason is the stigma associated with mental health.[5] Other reasons include long waiting lists, difficult referral systems, not being taken seriously etc.[6] Young people have reported in numerous consultations that they want holistic services that meet their mental health needs, but also provide access to a range of help and support; and they want the opportunity to take part in activities that are fun and creative, and help them build a range of softer skills such as building friendships.[7] This range of services, especially the opportunity to develop the softer skills is especially important for young people with long-term mental health problems as their illness can significantly impact on their school and personal life.

5.2.             It is important that young people have easy access to services that are flexible and tailored to individual needs e.g. not ‘9 to 5’ or ‘wait until Monday’; and they want to be seen in the environment that works best for them – this may be at home, or in the clinic, but it may also be in a coffee shop They want services to use the web, mobiles, text, email to improve communication; and services should outreach into schools and other agencies.

5.3.             Involving young people in decisions about what services should look like and how they should operate will help engage them with their own care and improve the quality of long-term health care.

Home Treatment

6.    We know of several services that offer home treatments or alternatives to inpatient provision. For instance, Sussex Partnership NHS Foundation Trust, have invested in community approaches which have reduced the need for out of area placements, and they have reduced the average length of inpatient stay for young people from 40 to 20 days. Savings made have been reinvested in innovations such as the Urgent Help team, which has reduced the need for inpatient admissions and length of stay.[8]

6.1.             In South Wales, there is the Community Intensive Therapy Team (CITT), which is aimed at young people who need more support than that usually provided in outpatient settings.[9] This service reduced the need to admit young people to inpatient units, and between 2001-2006 there were no referrals to Tier 4 services (inpatient services and other highly specialist provision) outside of the region. http://www.bmj.com/rapid-response/2011/10/31/community-intensive-therapy-team There is also the Fife Intensive Therapy Team, which uses a similar service model, which sees young people in their homes or in a suitable community facility. This service has also been shown to be effective in improving young people’s mental health.[10]

6.2.             Many young people prefer to access voluntary sector services as they are often on the high street and are less stigmatising. For instance, Youth, Information, Advice and Counselling Services (YIACS) offer a range of different services under one roof. Research has found that the young people accessing these services have very high levels of mental illness (Youth Access, 2012).[11] YIACs have different configurations including counselling services, sexual health, drugs advice etc, but The Zone in Plymouth - http://www.thezoneplymouth.co.uk/ offers a range of services including access to an early intervention psychosis service, and a service for young people with emerging personality disorders.

Integrated services

7.    From our consultancy work, we know that there is a history of silo working in CAMHS and that local agencies do not always work together to provide truly integrated services. The current economic situation is not helping. Our work on cuts to CAMHS services has found that 34 out of 51 (Two-third’s) local authorities in England have reduced their CAMHS budget since 2010.[12] These cuts to local authority CAMHS budgets are very likely to impact on the ability of local agencies to work together.

7.1.             There are many reasons why local agencies have difficulties with integrated working. For instance, different agencies often use different terminology and this can hinder integrated working. There needs to be a shared understanding of mental health and wellbeing, and of the range of services that are required, and what the responsibilities are for each agency.

7.2.             Relevant services in a given area need to work in genuine partnership to plan, commission and deliver the full range of mental health services including those for long-term conditions. The different agencies need to have a mandate and incentives to encourage them to work in partnership. There also needs to be good leadership within these agencies to drive forward partnership working. Partnership working relies on trust, and this needs to be nurtured and developed through good working relationships between staff in different agencies.

7.3.             Health and Wellbeing Boards are in a good position to improve integrated working. In order for these new bodies to achieve this, they must have representation from voluntary sector organisations, the justice system, and education, as well as the members stipulated in the Health and Social Care Act 2012. This will enable a wide range of agencies to come together and feed in to their local joint strategic needs assessment (JSNA) and their joint health and wellbeing strategy.

7.4.             Health and Wellbeing Boards must ensure that their JSNAs take account of the mental health needs of children and young people. This needs analysis data must be reflected in their joint health and wellbeing strategies and ultimately in the local commissioning plans of the clinical commissioning groups (CCGs) and the local authority.

Transitions

8.    Transitions between CAMHS and adult mental health services AMHS are a perennial issue, and there have been many attempts to address it. CAMHS generally only see young people up until their 18th birthday, and then if they need ongoing access to services they will have to move to adult mental health services. This transition point is generally seen as a weak spot in service provision. The Track study has highlighted how it can be difficult for young people to make the transition from CAMHS to AMHS. For instance, it found that although young people were referred to AMHS, many were not accepted because they were not ‘ill enough’ and did not meet their acceptance criteria.[13] Also, some young people would not engage with AMHS and so disengaged with services. The Track study (Singh, 2010, cited in Joint Commissioning Panel for Mental Health, 2012),[14] which focused on these transitions, found that ‘a third of teenagers are lost from care during transition and a further third experience an interruption in their care’.

8.1.             Problems associated with this transition can result in vulnerable young adults being left with no support at a critical point in their lives, when they most need help. In particular, there is particular a lack of continuity of care and service provision for young adults with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorders (ASD) and personality disorders (ref Singh). All of these conditions are long-term conditions, often with negative outcomes. For instance, the consequences of not providing adequate support can result in people not accessing help until they come into contact with the justice system.

Conclusion

9.    Children and young people will need to have long-term care for their mental health problems, but there is also a need for them to have access to mental health services when their problems first emerge. This is important as access to effective early intervention services will reduce the chances of their problems becoming more chronic and enduring, and is more cost effective.

9.1.             Many people with mental health problems have multiple morbidities, but we know that most will not receive a holistic service that addresses the full range of their needs. Therefore, long-term care needs to be more holistic to address these people’s needs.

9.2.             Mental health services for young people need to be accessible and they need to have a choice about where they are seen, whether that is at home, a cafe, or other appropriate locations. This is because clinics can be stigmatising and put young people off accessing help when they need it.

9.3.             Transitions between CAMHS and AMHS is a perennial problem, and not addressing this problem can result in young people dropping out of services until their problems become more chronic and enduring.

May 2013