Propelled into uncertainty

Young people with both a learning difficulty and mental illness risk slipping through the care net in their transition years if adults’ and children’s teams continue their rigid structures, says Damian Cummings

After many years working in the child and adolescent field I have become increasingly cynical about the reality of transition between children’s and adults’ services. My professional frustration began in 1998 when working in a large residential school for young men with emotional and behavioural problems. Time after time so-called “seamless transitions” were frayed and incorporated the panicked acquisition of services which did not match the core needs of the young man. As a result a high proportion failed.

Eight years later I am still questioning whether this has been remedied. The system remains unspecific, uncohesive and lacking a person-centred approach. There is evidence which cites that young people with complex needs encounter difficulties accessing adequate health care at transition.(1), (2) Add to this a diagnosis of mental health disorder and any illusion of a suitable transition will be even more unlikely.

It is estimated that there are 1.7 million pupils with special educational needs in schools and about 250,000 have statements of special educational needs.(3) In addition to this there is an estimated 8.7 million young people in the UK aged 13-24 who have mental health needs and learning difficulties,(4) while Gibbs and Priest indicate that the incidence of mental health problems among people with a learning difficulty is three to four times greater than in the population at large.(5)

In England young people with a learning difficulty are entitled to a transition plan which should permit the person in question, their family and significant others to propose their hopes and needs. However, many young people do not take part in any form of transition and leave school without any formal planning in place.(6) It is then of concern to find that the failure to identify, plan and put into action a transition based on genuine need complicates matters because the ensuing stress and stigmatisation contribute to a risk of developing emotional problems and a further likelihood of mental health decline.

A young person’s transition plan should start as soon as they are in a placement. However, professional realism demonstrates that this is often not the case. Often, political red tape and financial regulation hinder transition plans. This causes confusion and may even result in the whole transition being directed by individuals who may not listen to, or even consult the person in question. Additionally they may have a limited relationship with the young person and so any true understanding of their needs is missed. This could lead to a breakdown of what the individual at the core of transition wants and needs.

A successful placement requires a good foundation on all angles and the transition plan is something that fosters the aspirations of the young person and can be a catalyst to a safe, fulfilling future. It is evident that a presentation of dual diagnosis is becoming more apparent in service referrals due to improved diagnostic materials, although they remain limited for learning difficulty and mental illness combined.

Despite this there are few practitioners who feel comfortable working with both areas and, as such, the young person finds themself split between pillar and post and further stigmatisation often occurs. An example of this fragmented cohesion is a young woman with mental health problems and moderate learning difficulties. She needed a stringent pharmacological treatment regime, including monthly blood checks. On initial referral to the local learning difficulty team, it was felt that it would be more relevant to refer her to mental health services and vice versa when referred to the mental health team. A potential service void was overcome when one speciality agreed to curtail their criteria.

Clearly, if young people with learning difficulties and mental health problems are to experience a seamless transition, services cannot avoid working with complex needs. If a transition is to be successful, professionals must accept that disabilities of whatever variant should not act as a barrier to a user’s right to services.

However, within the wealth of political correctness, I fear that some are almost intimidated by how their intentions may be interpreted. For example, the definition of “vulnerable” in the children’s sector seems clear, while the definition for adults is only now receiving any emphasis.

This can lead to further complications during transition from children’s to adults’ services. A young person with learning difficulties and mental health problems who is deemed extremely vulnerable can be viewed by professionals as a child one day, only to be seen as an adult the next. But the difference in the approach to being termed vulnerable can result in the removal of risk assessments that were put in place by children’s services, or at best can hinder a smooth transition by making a complex case even more so.

This grey area is an example of where confusion is rife and the professionals stand on a tightrope while the vulnerable person may slip through the net and be lost for ever.

It would seem that if the child and adult teams became less rigid and acknowledged the other’s existence a workable, cohesive approach may result. After all, if the health and social care delivery structure cannot agree on matters of importance then I fear that a seamless transition will always be a term of hope and it will continue not to be the reality experienced by many service users. If transitional teams do coalesce this may be the catalyst to other professionals doing likewise and, as a result, the individual with complex needs may find things less complicated.

Damian Cummings is clinical manager for Segal Gardens. The service supports young people aged 16-25 with mental health problems, learning difficulties and associated needs. He qualified as a psychiatric nurse in 1996.

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This article looks at the problems encountered by young people with both a learning difficulty and mental illness in transit between children’s and adults’ services.

(1) J Morris, Hurting into a Void, Pavilion Publishing/Joseph Rowntree Foundation, 1999
(2) M Pearson and colleagues, Positive Health in Transition: A Guide to Effective and Reflective Transition Planning for Young People with Learning Disabilities, National Development Team, 1999
(3) Department of Health, Valuing People: A New Strategy for Learning Disability in the 21st Century, London, 2001
(4) Foundation for People with Learning Disabilities, Count us in: The Report of the Committee of Inquiry into Meeting the Mental Health Needs of Young People with Learning Disabilities, Foundation for People with Learning Disabilities, 2002
(5) M Gibbs, H M Priest, “Designing and implementing a ‘dual diagnosis’ module”, Nurse Education Today, Vol 19, Issue 5, pp357-363, 1999
(6) P Heslop and colleagues, Bridging the Divide at Transition: What Happens for Young People with Learning Difficulties and their Families?, British Institute of Learning Disabilities, 2002

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