We saw many instances of innovate and responsive work in the voluntary sector, often in areas where the statutory sector is less effective – engaging with hard to reach groups, helping refugees and asylum seekers, working with specific BME groups. One area had a particularly vibrant set of services, where voluntary organisations had been commissioned alongside statutory agencies and were invited to the partnership table as equals.
Here is what young people told us about using voluntary and statutory services:
The voluntary sector was seen as more responsive that the statutory services, in which young people had experienced long waiting times. They were prepared to wait a few weeks, but wanted to be seen immediately if they perceived their own need to be urgent. One stated, “When you wait you lose interest.” All the young people we spoke with wanted drop-in facilities.
Voluntary settings were described as “more normal” than statutory services. Young people liked the informality of voluntary settings, because they are “informal, like a living room”. This was contrasted with clinic and hospital settings, where “the smell puts you off”.
It was important to the young people we spoke to that they do not feel judged by staff. When they had experienced feelings of inability to cope alone, young people had felt “It’s not fair, why me?” When these feelings were more pronounced they felt it was beyond the scope of their friends to help and they wanted a more formal service. Those who had used statutory services had not found them as useful as voluntary settings, where they felt accepted and respected. Some had found they could not relax within the CAMHS setting and that GPs offered limited help, often in the form of medication.
Ways in which a positive ethos was communicated to young service users were through the appearance of workers and the internal environment of the service looking appropriate to the age group. Young people felt more comfortable in a setting in which it was made clear that the service was confidential and where staff conveyed through their interactions that they
were not being judgemental. Those who had used CAMHS had mixed experiences - one young person had been offered a taxi to get him to appointments before the start of school, but another had experienced
sessions cancelled at the last minute, with no explanation. The young person did not return.
Something most of the young people had found counter productive was the tendency to have to repeat their stories and histories over and again with each change of worker or agency. “Talking about your problems all the time makes it worse” was a typical refrain. Another issue was the use of therapeutic approaches that seem more suited to younger children. One young person had been required to pick animal shapes out of a box, which
seemed inappropriate to her age.
We met two young people over the age of 18 who had ADHD and felt they were not receiving an effective service. One young person had elected not to attend AMHS, despite having a referral, because the experience of her sibling had been very poor. A 23 year old, who said he felt “sometimes like an adult and sometimes like a kid” told us he came out of an (AMHS) in patient unit more disturbed than when he went in.
Some young people would value having access to others who have experienced similar problems or life experiences. Others want clarity around goals, permissions and agreements, negotiated with therapists/counsellors. Some would like to choose the sex of their therapist. All the young people we spoke to value a drop-in facility and the chance to talk and be listened to. Many would like to see low key help and support offered in schools, with a
particular emphasis on health promotion.
Thursday, February 22, 2007
Taxonomy of need
There seem to be three distinct groups of young people needing continuity of care after the age of 18.
1. Those who CAMHS assess as having a severe and enduring mental disorder, who also meet the eligibility criteria for AMHS.
2. Those who CAMHS assess as having a severe and enduring mental disorder, who do not meet the eligibility criteria for AMHS.
3. Vulnerable young people who use a number of services, though not necessarily CAMHS, who have pronounced and multiple needs that may not express themselves clearly as mental health problems.
1. Those who CAMHS assess as having a severe and enduring mental disorder, who also meet the eligibility criteria for AMHS.
They usually have a clear cut psychosis, or severe depression.
What do they need?
A good protocol, the use of CPA and some help from CAMHS in preparing them for using adult services.
2. Those who CAMHS assess as having a severe and enduring mental disorder, who do not meet the eligibility criteria for AMHS.
Includes:
a) Attention Deficit Hyperactivity Disorder (ADHD)
ADHD was stated time and again as a real issue for adolescents and young adults. Some AMHS managers and practitioners were very aware of and sympathetic to this problem, but were concerned to protect their boundaries and considered it an issue primarily for commissioners. AMHS needs to be commissioned to provide for young adults with ADHD and this will include appropriate training and support for AMHS practitioners taking on a new role.
b) Autistic Spectrum Disorder (ASD)
Similarly ASD, including Asperger’s syndrome posed a challenge, particularly when the young person was exhibiting very challenging acting out behaviour.
It was said that eligibility for an adult service depends upon the presence of an associated learning disability. This of course excludes those with high functioning ASD, including Asperger’s Syndrome.
c) Those in out of area placements
Out of the area placements are used for low volume, high need cases and include prisons, care institutions, forensic and other specialist units. Is it a case of out of area out of mind?
d) Eating disorders
There is reluctance in some places to transit young people to adult services at 18. The disinclination is about perceived culture differences, in which a young person of 18 about whom there has been optimism, will encounter older, “hardened” cases who may transmit cynicism.
e) Conduct disorder/emerging PD
Many young people with CD are likely to have an emerging or borderline personality disorder and they fall through the net primarily because there is insufficient provision to meet their needs effectively. These young people continually present to substance misuse services/workers and are also in evidence within the youth offending service caseload (YOS). Described as those who are “both trouble and troubled”, very few of them require forensic services, yet all have the potential for forensic approaches later on and many return to the system via criminal justice. Some adult practitioners wondered whether PD should be thought of as developmental and whether it could be identified earlier. Conversely we were told that child and adolescent psychiatrists are reluctant to diagnose PD under the age of 18.
3. Vulnerable young people who use a number of services, though not necessarily CAMHS, who have pronounced and multiple needs that may not express themselves clearly as mental health problems.
All young people with mental health need may be viewed as vulnerable; however there is a group of young people whose emotional and psychological well being is threatened by circumstances and life events, albeit they may
not have a diagnosed mental disorder. These young people may come from particularly disadvantaged or chaotic families; they might be looked after by the local authority; could include asylum seekers and refugees; they may have a learning disability. In many cases these young people experience a combination of such factors. Some of this group will have received assessment and treatment from CAMHS, but equally a significant proportion will not. Without a specified mental disorder it is extremely unlikely that they would meet the criteria for an adult mental health service, indeed it would be unlikely to meet their needs. As one interviewee stated, “There is no safety net.”
Includes:
a) Learning disabilities
The issue is about young adults receiving a seamless service that addresses both the LD and the mental health problem, but often one will be treated at the expense of the other. AMHS are the gate keepers for referrals and will not take those people who are under the age of 18.
b) Those misusing substances
Local drug and alcohol services experienced an insufficient dialogue with mental health services, both AMHS and CAMHS. There is no automatic referral to adult services because these young people may not meet the criteria.
c) Refugees and asylum seekers
People interviewed from the voluntary sector reported that counselling and talking therapies are seen as a western concept and this would prevent many young people from these communities asking for help. Translation and interpreting services can be costly, particularly to smaller voluntary organisations.
d) Depression and anxiety
Types of young people classified as vulnerable included those with low level to moderate depression. Children with depression often self harm and frequently have a range of other associated social and health problems. On that basis they would normally receive a service from specialist CAMHS. It was reported that these young people fall below the threshold for adult mental health services, yet have needs that may be too complex to be met within primary care.
e) Looked after children
Large numbers of vulnerable young people are to be found within the looked after population, including care leavers and unaccompanied minors. These are young people who would almost automatically be eligible for a CAMH service, yet despite their high levels of need, they may not have a specified mental disorder. These young people, it was said, “are the meat in the sandwich between CAMHS and AMHS”.
Looked after young people and care leavers may not have a “mental disorder” but are very often mentally distressed, with nowhere to go. Increasingly across the country, young people looked after by the LA are seen as a priority for specialist CAMHS, since as a group they have a far higher risk of developing mental health problems. The mismatch occurs between different age boundaries, with CAMHS ending at 18 and the LA having responsibility for care leavers to the age of 25Some young adults have been in the health and social care systems for their whole lives, having “years upon years of disturbance in their lives”.
f) Difficult to engage/unknown
Some young people do not wish or are not able to engage with CAMHS and they would also be unlikely to engage with adult services. Some young black people have said that they do not receive enough therapy. One practitioner told us there is still institutional racism, stating that a black person with psychosis is less likely to receive a referral to a talking therapy than a white person.
We heard about large numbers of unaccompanied minors from refugee groups, whose mental health needs go largely unmet by the statutory services.
1. Those who CAMHS assess as having a severe and enduring mental disorder, who also meet the eligibility criteria for AMHS.
2. Those who CAMHS assess as having a severe and enduring mental disorder, who do not meet the eligibility criteria for AMHS.
3. Vulnerable young people who use a number of services, though not necessarily CAMHS, who have pronounced and multiple needs that may not express themselves clearly as mental health problems.
1. Those who CAMHS assess as having a severe and enduring mental disorder, who also meet the eligibility criteria for AMHS.
They usually have a clear cut psychosis, or severe depression.
What do they need?
A good protocol, the use of CPA and some help from CAMHS in preparing them for using adult services.
2. Those who CAMHS assess as having a severe and enduring mental disorder, who do not meet the eligibility criteria for AMHS.
Includes:
a) Attention Deficit Hyperactivity Disorder (ADHD)
ADHD was stated time and again as a real issue for adolescents and young adults. Some AMHS managers and practitioners were very aware of and sympathetic to this problem, but were concerned to protect their boundaries and considered it an issue primarily for commissioners. AMHS needs to be commissioned to provide for young adults with ADHD and this will include appropriate training and support for AMHS practitioners taking on a new role.
b) Autistic Spectrum Disorder (ASD)
Similarly ASD, including Asperger’s syndrome posed a challenge, particularly when the young person was exhibiting very challenging acting out behaviour.
It was said that eligibility for an adult service depends upon the presence of an associated learning disability. This of course excludes those with high functioning ASD, including Asperger’s Syndrome.
c) Those in out of area placements
Out of the area placements are used for low volume, high need cases and include prisons, care institutions, forensic and other specialist units. Is it a case of out of area out of mind?
d) Eating disorders
There is reluctance in some places to transit young people to adult services at 18. The disinclination is about perceived culture differences, in which a young person of 18 about whom there has been optimism, will encounter older, “hardened” cases who may transmit cynicism.
e) Conduct disorder/emerging PD
Many young people with CD are likely to have an emerging or borderline personality disorder and they fall through the net primarily because there is insufficient provision to meet their needs effectively. These young people continually present to substance misuse services/workers and are also in evidence within the youth offending service caseload (YOS). Described as those who are “both trouble and troubled”, very few of them require forensic services, yet all have the potential for forensic approaches later on and many return to the system via criminal justice. Some adult practitioners wondered whether PD should be thought of as developmental and whether it could be identified earlier. Conversely we were told that child and adolescent psychiatrists are reluctant to diagnose PD under the age of 18.
3. Vulnerable young people who use a number of services, though not necessarily CAMHS, who have pronounced and multiple needs that may not express themselves clearly as mental health problems.
All young people with mental health need may be viewed as vulnerable; however there is a group of young people whose emotional and psychological well being is threatened by circumstances and life events, albeit they may
not have a diagnosed mental disorder. These young people may come from particularly disadvantaged or chaotic families; they might be looked after by the local authority; could include asylum seekers and refugees; they may have a learning disability. In many cases these young people experience a combination of such factors. Some of this group will have received assessment and treatment from CAMHS, but equally a significant proportion will not. Without a specified mental disorder it is extremely unlikely that they would meet the criteria for an adult mental health service, indeed it would be unlikely to meet their needs. As one interviewee stated, “There is no safety net.”
Includes:
a) Learning disabilities
The issue is about young adults receiving a seamless service that addresses both the LD and the mental health problem, but often one will be treated at the expense of the other. AMHS are the gate keepers for referrals and will not take those people who are under the age of 18.
b) Those misusing substances
Local drug and alcohol services experienced an insufficient dialogue with mental health services, both AMHS and CAMHS. There is no automatic referral to adult services because these young people may not meet the criteria.
c) Refugees and asylum seekers
People interviewed from the voluntary sector reported that counselling and talking therapies are seen as a western concept and this would prevent many young people from these communities asking for help. Translation and interpreting services can be costly, particularly to smaller voluntary organisations.
d) Depression and anxiety
Types of young people classified as vulnerable included those with low level to moderate depression. Children with depression often self harm and frequently have a range of other associated social and health problems. On that basis they would normally receive a service from specialist CAMHS. It was reported that these young people fall below the threshold for adult mental health services, yet have needs that may be too complex to be met within primary care.
e) Looked after children
Large numbers of vulnerable young people are to be found within the looked after population, including care leavers and unaccompanied minors. These are young people who would almost automatically be eligible for a CAMH service, yet despite their high levels of need, they may not have a specified mental disorder. These young people, it was said, “are the meat in the sandwich between CAMHS and AMHS”.
Looked after young people and care leavers may not have a “mental disorder” but are very often mentally distressed, with nowhere to go. Increasingly across the country, young people looked after by the LA are seen as a priority for specialist CAMHS, since as a group they have a far higher risk of developing mental health problems. The mismatch occurs between different age boundaries, with CAMHS ending at 18 and the LA having responsibility for care leavers to the age of 25Some young adults have been in the health and social care systems for their whole lives, having “years upon years of disturbance in their lives”.
f) Difficult to engage/unknown
Some young people do not wish or are not able to engage with CAMHS and they would also be unlikely to engage with adult services. Some young black people have said that they do not receive enough therapy. One practitioner told us there is still institutional racism, stating that a black person with psychosis is less likely to receive a referral to a talking therapy than a white person.
We heard about large numbers of unaccompanied minors from refugee groups, whose mental health needs go largely unmet by the statutory services.
Protocols and/or care pathways?
The CAMHS Self Assessment Matrix in 2004 showed that the majority of services had a completed or draft Transition protocol. This result was counter-intuitive, as most people in CAMHS knew that transition was a difficult area. It probably revealed that the self assessment had asked the wrong question.
The TRACK project, when it reports its findings, will have more to say about the efficacy of these protocols. To find out more about TRACK, follow this link:
http://www.sdo.lshtm.ac.uk/files/project/117-sci-summary.pdf
Leaving aside the always intriguing questions about who was involved in developing the protocol, does everyone actually know about/use it, etc, I am interested in what the protocols don’t currently do. The ones that I have seen cover arrangements for that small minority of young people who have a severe and enduring mental disorder, such as will be recognised by AMHS. That’s fine, but it leaves out a larger group of young people, who have continuing mental health needs, but are not eligible for AMHS (see also posting on Taxonomy of need).
In addition to Transition protocols we need to develop care pathways that include a variety of service options, for all young people who require some form of service to meet their mental health needs in older adolescence and young adulthood. The development of these will have to be multi-agency – including at least leaving care teams, housing agencies, voluntary organisations, primary and secondary health care.
The TRACK project, when it reports its findings, will have more to say about the efficacy of these protocols. To find out more about TRACK, follow this link:
http://www.sdo.lshtm.ac.uk/files/project/117-sci-summary.pdf
Leaving aside the always intriguing questions about who was involved in developing the protocol, does everyone actually know about/use it, etc, I am interested in what the protocols don’t currently do. The ones that I have seen cover arrangements for that small minority of young people who have a severe and enduring mental disorder, such as will be recognised by AMHS. That’s fine, but it leaves out a larger group of young people, who have continuing mental health needs, but are not eligible for AMHS (see also posting on Taxonomy of need).
In addition to Transition protocols we need to develop care pathways that include a variety of service options, for all young people who require some form of service to meet their mental health needs in older adolescence and young adulthood. The development of these will have to be multi-agency – including at least leaving care teams, housing agencies, voluntary organisations, primary and secondary health care.
Commissioning
Surely the problem of transition from child to adult services should be shared between commissioners and providers. You can’t leave these decisions to clinicians on the ground, because when that does happen
a) people complain about provider-led decision making/commissioning
b) practitioners make the best decisions they can, which often means unofficially keeping young people in a CAMH service way past their 18th birthday (the oldest “CAMHS” client we heard of was 22).
What about commissioners who have grasped these tensions and chosen to interpret the spirit rather than the letter of policy. We met a group of commissioners and providers who had sanctioned what we called “boundary stretching”, because it was in the best interests of the young person. Basically if a young person needed continuing service after 18, but was unable for whatever reason (developmental stage, or type of mental health problem – see also posting on Taxonomy of need) to access adult provision, they would be retained by CAMHS – with the commissioner’s approval. The CAMHS and AMHS commissioner reached an agreement whereby CAMHS would be compensated indirectly for this extra work, which in any case was not high in volume.
Another key finding in relation to commissioning was around multiple providers. When a new Early Intervention in Psychosis Service (EIS) was planned, the commissioners put it out to tender, with the result that a voluntary organisation was awarded the contract. There were all sorts of advantages to tapping into the voluntary sector ethos (see also posting on Valuing the voluntary sector) and to us it seemed we had found a reality in the “plurality of provision” rhetoric.
It seemed difficult in many places to get both CAMHS and AMHS, commissioners and providers, to sit round the table. Inevitably it was often CAMHS driving the process, because in a way the problem is theirs – if a transition to adult services does not happen, they still feel honour bound to provide something for that young person.
a) people complain about provider-led decision making/commissioning
b) practitioners make the best decisions they can, which often means unofficially keeping young people in a CAMH service way past their 18th birthday (the oldest “CAMHS” client we heard of was 22).
What about commissioners who have grasped these tensions and chosen to interpret the spirit rather than the letter of policy. We met a group of commissioners and providers who had sanctioned what we called “boundary stretching”, because it was in the best interests of the young person. Basically if a young person needed continuing service after 18, but was unable for whatever reason (developmental stage, or type of mental health problem – see also posting on Taxonomy of need) to access adult provision, they would be retained by CAMHS – with the commissioner’s approval. The CAMHS and AMHS commissioner reached an agreement whereby CAMHS would be compensated indirectly for this extra work, which in any case was not high in volume.
Another key finding in relation to commissioning was around multiple providers. When a new Early Intervention in Psychosis Service (EIS) was planned, the commissioners put it out to tender, with the result that a voluntary organisation was awarded the contract. There were all sorts of advantages to tapping into the voluntary sector ethos (see also posting on Valuing the voluntary sector) and to us it seemed we had found a reality in the “plurality of provision” rhetoric.
It seemed difficult in many places to get both CAMHS and AMHS, commissioners and providers, to sit round the table. Inevitably it was often CAMHS driving the process, because in a way the problem is theirs – if a transition to adult services does not happen, they still feel honour bound to provide something for that young person.
CAMHS - AMHS: the great divide?
Due to the differences in cultures, making a transition from CAMHS to AMHS was said to be like “falling off a cliff edge”. Here are some of the perceptions:
Words used by CAMHS about CAMHS:
More enveloping and embracing a service than AMHS
More wrap-around, integrated, more cosy
Based around the young person’s networks
A more systemic focus, with an emphasis on family work.
CAMHS professionals, whatever their disciplinary background, tend to operate as therapists
greater clinical lead from psychiatry
greater multidisciplinary focus.
more helpful
Words used by AMHS about CAMHS
Excessive treatment duration
Unwillingness to close cases.
Generic
Emphasis on family
More helpful
Words used by AMHS about AMHS
Greater focus on the individual
More clinically focused
Waiting times for clinical psychology unacceptably long
Centred around mental illness
Very few would say that the medical model is our model
Words used by CAMHS about AMHS
Therapy is largely the function of clinical psychology - often a separate service.
Greater focus on the individual
Amount of therapeutic work offered is very limited
Less accessible
Less social and more medical model
Words used by CAMHS about CAMHS:
More enveloping and embracing a service than AMHS
More wrap-around, integrated, more cosy
Based around the young person’s networks
A more systemic focus, with an emphasis on family work.
CAMHS professionals, whatever their disciplinary background, tend to operate as therapists
greater clinical lead from psychiatry
greater multidisciplinary focus.
more helpful
Words used by AMHS about CAMHS
Excessive treatment duration
Unwillingness to close cases.
Generic
Emphasis on family
More helpful
Words used by AMHS about AMHS
Greater focus on the individual
More clinically focused
Waiting times for clinical psychology unacceptably long
Centred around mental illness
Very few would say that the medical model is our model
Words used by CAMHS about AMHS
Therapy is largely the function of clinical psychology - often a separate service.
Greater focus on the individual
Amount of therapeutic work offered is very limited
Less accessible
Less social and more medical model
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