Transitional ADHD Pilot Service Evaluation April 2007 to November 2008
Report for Leeds Primary Care Trust
Cathy Brennan and Anne Worrall-Davies
Produced by the University of Leeds
December 2008
For further information about this project please contact Anne Worrall-Davies, a.e.worrall-davies@leeds.ac.uk Academic Unit of Psychiatry and Behavioural Sciences, Leeds Institute of Health Sciences, Charles Thackrah Building, 101 Clarendon Road, Leeds LS2 9LT
Acknowledgements
We would like to say „thank you‟ to all the respondents and advisors for giving their valuable time to help with this research, and also the CAMHS PGTips Group, Noreen Slinger, and Dr Chris Taylor. In particular, special thanks go to Karen Lendill and staff in the Medical Records Department at the Newsam Centre, without whom there would be no clinic data.
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1.0 Executive Summary
1.1
A new pilot service was commissioned in Leeds in 2007 to look after the needs of
young adults aged 17 years and above with ADHD.
1.2
The University of Leeds was commissioned by the Leeds Primary Care Trust Mental
Health Modernisation Team (now Expert Advisory Group) to conduct an estimate of demand and capacity for the proposed service and initial mapping of the service.
1.3
In Phase I of this work, in 2007-2008, we undertook an estimate of the likely number
of referrals to the pilot service from CAMHS and Child Health, and elicited user and provider views about how the transition service should be developed.
1.4
For Phase II, (2008) we obtained clinical data from the pilot service to provide a
snapshot of the characteristics of the referred patients, and extrapolated the data to provide an estimate of the capacity needed to continue the service.
1.5
Phase III (2009) will explore demand and capacity of the current Leeds service, and
provide a contextual, comprehensive review of what services exist elsewhere in the UK.
1.6
In Phase I, all prescribing doctors working in CAMHS and Community Child Health in
Leeds were asked to provide information on the number of young people on their caseloads aged 12 years and above with a diagnosis of ADHD, and how likely they would be to require transition ADHD services in the following 5 years.
1.7
All Consultant Psychiatrists working for Leeds Partnerships Foundation NHS Trust
were asked to provide information on how many cases of possible or diagnosed ADHD they
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had on their caseloads. They were also asked what they knew about treating ADHD in adults and whether they felt confident to do so.
1.8
A stakeholder list, comprising service users, social and health care organisations, was
generated through word of mouth. Stakeholders were consulted about how an adult ADHD service should look, through telephone and face-to-face conversations, and the comments were collated.
1.9
Only 12% adult psychiatrists responded and so we were unable to use most of their
questionnaire data. However, framework analysis of the open-ended question asking about how the proposed service should look revealed interesting concerns and suggestions. Most prevalent was a concern about over-diagnosis of ADHD, through maverick diagnosers and prescribers; the importance of the multidisciplinary team assessment was seen as central to tempering this. This concern seemed to be underpinned by concerns about the robustness of the diagnosis of ADHD in adults, and how one would diagnose it.
1.10
Consultation with health and social care professionals and service users, suggested
the ideal transition service should have input from multiple agencies, be evidence-based, and provide a range of pharmacological, psychological and behavioural interventions. Peer support should be available, as should advice on housing support employment advocacy and further education opportunities.
1.11
For Phase II, robust figures from the estimate of demand were received from CAMHS
(100% response rate) and Community Child Health (71% response rate) but not from Adult Psychiatry (12% response rate). A total of 126 young people currently in CAMHS and Community Child Health were deemed to need an adult ADHD service within the next 5 years. It was not possible to estimate the numbers of patients with ADHD currently seen in adult psychiatric services due to the disappointing response rate.
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1.12
Fifty referrals were received in the first 12 months of the Adult ADHD service; 27
were transferred cases from CAMHS and Community Child Health, close to our estimate of 33 patients. However, as many cases again were referred from other sources, GPs and secondary adult mental health services being the main other referrers.
1.13
There is clearly a significant need for an adult service with a total of 126 young people
predicted to need transferring from CAMHS and Child Health between 2007/08 and 2011/12. This demand is likely to be doubled by the addition of referrals into the service from adult mental health and other psychiatric specialities as well as new cases from primary care.
1.14
Therefore, we predict that by the end of 2009, assuming a similar rate of patient
engagement with the service, demand will have outstripped the resourced capacity. This has clear implications for the funding and provision of this service.
1.15 Further work looking at the demand and capacity figures should be undertaken early in 2009 to inform further commissioning and resourcing of the service. There is a clear
need for training to increase knowledge and change attitudes in adult psychiatry in line with current research and the NICE CG72 Guideline (2008).
1.16 It would be interesting to repeat the survey of adult psychiatrists in Leeds PFT now that the pilot ADHD service has been in operation for 12 months, and the new NICE guidance of 1008 has been published. We would anticipate, based on anecdote, an improved response rate.
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1.17 Strong multidisciplinary and multi-agency links should be integral to the ADHD adult service, which are not in place as yet. These were seen as crucial by service users, providers and other key stakeholders and this is echoed in the NICE guidance.
1.18
Of concern is the non-recruitment to the CPN post which was resourced alongside
the Consultant Psychiatrist post; it is difficult to recruit to a 1 session a week post. All our respondents were clear that the Adult ADHD service should have a clear and prominent non-pharmacological component and be multidisciplinary and multi-agency.
1.19
Child and adolescent psychiatrists were overall very satisfied indeed with the pilot
service. They reported transition arrangements as being very flexible. They were relieved that arrangements were now in place to ensure seamless transfer of their ADHD cases as they felt that the previous gap in service had been highly deleterious to their patients, and very stressful for them personally as they were not able to offer a suitable adult service for the 17+ ADHD group.
1.20
Commissioners and service providers need to work with the key stakeholders,
especially service users and carers, to address this issue. The further work of the University evaluation will lead on some of this process, through a participatory action research project, telling and disseminating the stories of users and carers about their Adult ADHD service experiences.
1.21 This is clearly a new service area for all adult mental health services in England and Wales as we were able to identify only 13 services in England and Wales, of which at least three are new pilot services including Leeds. This places Leeds PFT at the forefront of adult ADHD service provision.
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2.0
Background
2.1
Why is a specialised adult ADHD service needed?
ADHD in adults is now a clearly recognised entity, affecting 4% of the adult population. It is conceptualised as a developmental condition, with strong genetic aetiology. Management and assessment of ADHD, as in childhood, requires multidisciplinary input as described in the recent NICE guidance (2008).
A decade ago, adult ADHD was not wholly acknowledged as an entity. However, local and national policy guidance all highlight that ADHD in adults is now a recognised condition and many media campaigns and websites disseminate this information. There is a substantial evidence base supporting the persistence of ADHD from childhood into adulthood, but little high quality evidence to support particular intervention styles beyond stimulant medication and CBT; virtually nothing is written about strategic service development or what service users and their families would consider a useful service. Recent consensus statements about assessment and treatment of ADHD have been made in a number of countries and by several organizations; they have all included sections on adult ADHD (NICE, 2008. CADDRA, 2007, BAP, 2007). All acknowledge that in places the adult ADHD evidence base is slight in terms of how to diagnose, assess and manage the condition.
Adulthood ADHD affects about 4% population worldwide, leading to considerable associated disability and lost revenue (Fayyad, de Graaf, Kessler et al, 2007; http://www.adultadhdisreal.com/howiesstory.html; NICE, 2008; Reynolds, 2008; Nutt, Fone, Asherson et al, 2007). Research suggests that the majority – up to 65% - of children diagnosed with ADHD still have symptoms of the disorder in adulthood (NICE, 2008, p131,; Taylor & Sonuga-Barke, 2008, p532) although only a minority continue with the full diagnosis. A recent meta-analysis (Faraone, Biederman & Mick, 2006) looking at full diagnostic ADHD criteria, found that only 15% of children with ADHD still had the full
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condition at age 25 years.
However, possibly many children with ADHD go unrecognised,
and may be diagnosed in adulthood for the first time.
NICE (2008) found that there was some evidence for conceptualizing the condition differently in adults, which would explain why although most children with ADHD grow out of the full condition, the prevalence in adults and children is similar. This is supported by the fact that in adults there is a different symptom profile, inattentive symptoms being more common than hyperactivity or impulsivity, suggesting a different condition. Therefore, adherence to the full diagnostic criteria for ADHD as currently written in ICD 10 and DSMIVR may not be appropriate. The comprehensive literature synthesis contained within the NICE (2008) guidance suggests that „lowering of diagnostic thresholds and providing ageappropriate adjustment of the symptoms‟ may be helpful ways forward and notes that the DSM-IV-TR category of „ADHD in partial remission‟ is useful for adults who have functional impairment due to ADHD symptoms but do not meet full diagnostic criteria anymore.
Adults with ADHD are often academic underachievers, from primary school onward. Combined with poor planning abilities, this makes young people with ADHD less likely to plan and develop a career. In the workplace they fail at organising their time, prioritising tasks and meeting deadlines (NICE, 2008, p38). However, for a few, the adult work environment can be helpful, if their job relies on fast problem-solving rather than long-term planning, for instance. For most though, the increased demands and responsibilities of adult life are problematic; substance misuse, relationship problems and illegal behaviours may result. Adults with untreated ADHD have high usage of health and social care settings with smoking-related disorders, serious accidents, and alcohol and substance misuse.
2.3
What sort of service should adults with ADHD receive?
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Broadly, NICE (p36) recommend that the treatment strategies for adults with ADHD should be similar to those used with children with ADHD. However, there are very few services in the UK that are specialised assessment and treatment services for adults with ADHD. The age for transition into adult mental health services varies across the UK although CAMHS and AMHS nationally are all working toward a common age of 18 years (NSF for Children, DH, 2004). In the meantime, worryingly, some young people are left at age 16-17 years with no specialist oversight, no medication, or medication monitoring provided by GPs without specialist supervision (NICE, p34).
2.4
How to treat: drugs, psychotherapy, both or neither?
The level of knowledge about what services and treatments are best for young adults with ADHD is poor. A consensus set of guidelines produced by the British Association for Psychopharmacology (Nutt, Fone, Asherson et al, 2007) could only produce recommendations based on category IV evidence (drawn from groups of experts) or clinical care standards for all its consensus guidelines on service models for an Adult ADHD service.
Young people still taking medication for ADHD when they become adults clearly need health and social care services; indeed they require oversight by a specialist prescriber, as medication for ADHD usually comprises stimulants, which have controlled medication status, and cannot be wholly monitored by non-specialists. Therefore adult mental health care provision is required. The specification for such an adult ADHD service is not supported by any research evidence as to what type of service (community-based or citywide, medication-led or holistic etc) is most effective or is viewed as helpful by service users and their families.
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Pliszka (2000) states that medication and CBT combined are effective in adults with ADHD, plus psycho-educational support for partners to help them with organizing the adult with ADHD. The BAP consensus guidelines (2007) state that there is some evidence, low level, to support use of „psychotherapies‟ by which it seems to mean CBT, together with medication. NICE (2008) notes that “Formal studies of the effectiveness of psychotherapy and coaching have not yet been carried out, but many adults with ADHD report that they gain benefit from these approaches” (p37).
The research evidence supporting the effectiveness of stimulant medication in adult ADHD comprises one meta-analysis and two other studies, ( BAP, 2007 p11). Faraone, Spencer,
Aleardi et al (2004) in their meta-analysis suggest that response rates and effect size is similar to that found in children. Long acting preparations have similar effect to immediate release, with the advantage of minimizing abuse and higher compliance. Higher dosage regimes (1mg/kg) as used with children lead to improved response. Also of note, in the UK, only atomoxetine is licensed for use in adult ADHD (provided it has been previously diagnosed in childhood) so all stimulant prescribing is „off-label‟ unlike in children (NICE, 2008, p37).
2.5
Models of service
There are very few specialised services for adult ADHD in the UK. There is no national register or database of such services (Asherson, personal communication by email, 1/12/2008) although a national network meeting for those working with adult ADHD on 20th March 2009 may now look at this issue as a result of us identifying this gap. There are no published guidelines or protocols for adult ADHD services to guide commissioners or service providers (Nutt, Fone, Asherson et al, 2007). NICE recommends (p155-158) that adult ADHD services should provide a baseline of (i) medication service (ii) psychological support and (iii) assessment for diagnosis.
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2.6
Summary
There is a vast amount of information of varying quality on the internet about adult ADHD (Reynolds, 2008). However, there is little high-quality research evidence to guide service development and no in-depth understanding of the kind of health and social care services that adults with ADHD would like to support them or that they would benefit from.
In Leeds at the start of this study there was no dedicated service provision for the diagnosis or ongoing treatment of ADHD in adulthood. This work reported here describes an estimate of the demand for an adult ADHD service, and a pilot survey of key stakeholders to look at how they would view the local service developing. The work was commissioned and largely undertaken before the publishing of the final NICE 2008 guidelines although we had read the draft consultation guidelines during the project.
3.0 Aims of the Project 1. To identify all Adult ADHD services in England and Wales, and obtain their service specifications 2. To estimate of the likely demand for an Adult ADHD Service in Leeds 3. To elicit the views of stakeholders about the specification of the service 4. To process map the first 12 months of operation of the service 5. To make recommendations about potential service configurations in line with the findings in the context of available research evidence.
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4.0
Methods
4.1 Aim 1. To identify all Adult ADHD services in England and Wales, and obtain their service specifications Design Comprehensive literature and internet search and experts‟ survey. Data collation. Search technique AWD and CB hand searched key review articles already retrieved, recent editorials and national policy documents We conducted an internet search of „adult ADHD services‟. We contacted known UK experts in adult ADHD. Contacting services. AWD contacted all services identified by telephone or email. Where there was not an apparent key contact, we contacted secretaries and hospital switchboards by telephone to identify key personnel. Collation of information. We obtained service specifications, formal and informal and tabulated them to facilitate comparison. Dissemination This information will be shared nationally at Adult ADHD network meetings and through the Dyscovery ADHD training website.
4.2
Aim 3. To estimate of the likely demand for an Adult ADHD Service in
Leeds
This comprised two parts: first, an assessment of demand based on current child health and CAMHS ADHD patients; second, an assessment of demand based on the reports of current cases of ADHD seen by adult psychiatrists.
(i) Child Health and CAMHS Demand. CB undertook an assessment of the number of current cases of ADHD in child health and child mental health services in Leeds to establish potential demand for an adult service in the next 1-5 years. Design. Survey of all child and adolescent psychiatrists and Consultant and Associate Specialist Paediatricians in Leeds looking after young people with ADHD in May 2007. Tool. Specially designed proforma of „assessment of local need in the next 5 years.‟
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Sample surveyed. All Consultant Child and Adolescent Psychiatrists (N = 8) and Consultant/Associate Specialist Paediatricians (N = 27) in Leeds. Questions asked on proforma. (i) the number of young people aged 12 years and above, with a diagnosis of ADHD, on their caseload; (ii) the number of those young people who would definitely or most likely need an adult service; (iii) how many of the young people were prescribed medication for ADHD. Tracking replies. We actively pursued non-responders by telephone and email between May and July 2007. Data entry. Survey data were entered into a bespoke SPSS v14 database with any identifiable patient information removed.
(ii) Adult Psychiatry Demand. CB undertook an assessment of the number of current cases of ADHD aged 17 years and above seen by Consultants in Adult Psychiatry working in Leeds to establish potential transfer of cases to an Adult ADHD service. Design. Survey of all Consultants in Adult Psychiatry in Leeds looking after young people with ADHD in May 2007. Tool. Specially designed proforma of „assessment of local need currently.‟ Sample surveyed. All Consultant Psychiatrists working for the Leeds Partnerships Foundation Trust (N = 59). Questions asked on proforma. (i) the number of patients with a diagnosis of ADHD, on their caseload whom would be transferred to a specialist adult ADHD service if one were available in Leeds (ii) the number of patients fitting the descriptions in three clinical vignettes of adult ADHD. These vignettes were drawn up by by two Consultant Child and Adolescent Psychiatrists, both of more than 10 years‟ seniority with the aim of identifying potential cases of ADHD that might not have been labelled as such by adult psychiatrists. Tracking replies. We actively pursued non-responders by email between May and July 2007. Data entry. Survey data were entered into a bespoke SPSS v14 database with any identifiable patient information removed.
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4.2 service
Aim 3. To elicit the views of stakeholders about the specification of the
The intention was to gain views from the Consultants in Adult Psychiatry first, from the third part of the questionnaire described above, and using these responses, undertake a Delphi consensus exercise with key stakeholders. Design. (i) generation of key stakeholder list by CB (ii) use of reponses to the open-ended question “how do you think the ideal ADHD service should look” within the questionnaire sent to all adult psychiatrists (described in section above) used to inform Delphi exercise. Participants. (i) Stakeholder list includes: service users and carer groups, voluntary and statutory organisations likely to be involved in the health and social care of adults with ADHD or addressing employment, housing or education needs. (ii) questionnaire sent to all Consultants in Adult Psychiatry in Leeds PFT. Methods and analysis. The stakeholder lost was generated through word of mouth inquiry (local experts) and internet searches. AWD conducted Framework Analysis on the verbatim text of the responses to the open-ended question within the questionnaire. . Framework approach analysis was used as it was developed specifically to be used in applied research such as health service evaluation (Pope et al, 2000).
The intended Delphi consultation exercise was abandoned due to a poor response rate and low data quality.
4.3.
Aim 3. To process map the first 12 months of operation of the service
Source of data. Medical records-generated clinic lists; case-notes; electronic patient letters. Method. AWD obtained clinic data for the first 12 months of the service from 1st November 2007 to 30th November 2008. All appointments are recorded on the clinic lists provided by Medical Records Department at the Newsam Centre and these printed lists are annotated
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by doctors during the clinics so that a record of who attended, failed to attend, and instructions of when the next appointment should be booked are all recorded manually on the printed clinic lists.
To provide some validation of these lists, AWD reviewed: the case notes of the ADHD clinic patients, electronic versions of clinic letters and care plans, and then back-checked these with the list of ADHD patients held by Dr Chris Taylor. Any discrepancies were checked with him. AWD reviewed all the clinical patient identifiable data as she holds an honorary contract with the Leeds PFT.
Analysis. Process mapping, and basic clinical and demographic data were entered into an SPSS version 15.0 database, with patient identifiers removed. Tables, charts and figures were used to present the basic clinical and demographic data to provide a description of the service and clinic population. Analytic statistics were used to establish clinical and
demographic factors associated with engagement with the service and to address the fourth and final aim of the project, to offer potential service configurations in the context of available evidence.
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5.0
Findings
5.1 To identify all Adult ADHD services in England and Wales, and obtain their service specifications The AADD website had a useful list (posted 2/10/2008, retrieved 3/12/2008 at http://aadduk.proboards85.com/index.cgi?board=help&action=print&thread=339); ADDISS (http://www.addiss.co.uk/ retrieved 1/12/2008) did not have any information per se but provided useful links. Personal communications (Asherson, Kirkby, Nutt and Bolea, all by email) were most helpful. From all these sources combined, we identified the following list of 13 providers including Leeds (Box 1). AWD contacted all services outside Leeds, nine by email and three by phone. Only three services provided information, one by email (Bristol, Dr Blanca Bolea), one through the post (SLAM) and one over the phone (Swansea, secretary to Prof Thome). Additionally, we found written service descriptions for the South West Yorkshire Mental Health Trust and Northamptonshire services.
Two are tertiary services (South London (SLAM) and Addenbrooke‟s Cambridge); the other 11 are local providers.
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Box 1. NHS Providers of Adult ADHD Services in England and Wales
Tertiary Centres South London and Maudsley Hospital (SLAM) Cambridge (Addenbrooke’s) Local services Barnet (only for patients residing within that catchment area) Bristol (local catchment plus bought-in spot purchases) Canterbury (local service) Cheshire & Wirral Partnership NHS Foundation Trust (Birkenhead) Leeds Partnerships Foundation NHS Trust (Leeds catchment) Leicestershire Partnership NHS Trust Newcastle upon Tyne Northamptonshire Transitions & Liaison Team (Kettering) Pennine Care NHS Foundation Trust (Stockport) South West Yorkshire Mental Health NHS Trust (Rotherham) Swansea NHS Trust (catchment Northern part of Gower peninsula)
5.2 Service Descriptions The South London and Maudsley Adult ADHD service provides a comprehensive multidisciplinary assessment for ADHD in adults (service specification document,10th May 2008). It is available through the NHS, through GP or Consultant Adult (but not Child & Adolescent) Psychiatric referral, to adults who are thought to have ADHD or have received a diagnosis of ADHD previously. Treatment recommendations are made if appropriate after assessment but all treatment is provided locally and subject to local protocol and resources.
The Bristol Adult ADHD service covers all the Bristol area and takes referrals from other areas on a spot purchase basis. Exclusion criteria are alcohol or drug dependence and being under the forensic psychiatric service. The age limit is technically 18 years and above, but
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due to commissioning problems 10% of our clinic is under 18 years old. Follow-up is provided for a maximum period of 6 months to a year. The service has been running since November 2007. (personal communication, Dr Blanca Bolea, 2/12/2008).
Rotherham (Verity & Coates, 2007) operate a system similar to the Leeds pilot. The young person with ADHD is referred from CAMHS by a child psychiatrist to the transition service and a handover session is held with the young person, carer, CAMHS worker and adult psychiatrist. If the diagnosis and need for treatment is confirmed, medication prescribing will be continued, and the GP informed. If the diagnosis is not confirmed, or medication not required, then the young person is discharged. If co-morbid psychiatric diagnoses are present, the young person would be referred on to an appropriate service as well.
Stockport ADHD service is commissioned for over-16 year olds and comprises a weekly clinic. Currently it accepts transfers of patients with ADHD already diagnosed from CAMHS in Stockport. Assessment and treatment on a shared care basis with GPs are provided. The adult Connors questionnaire is used for assessment of symptoms. Dr Salujha additionally commented that “There is much more that one could do, subject to resources.” (personal communication by email, Sudhir Salujha, 4/12/08)
Northamptonshire (http://www.csip-plus.org.uk/cypf/transitions retrieved 9/12/08) Transitions and Liaison Team provide a full local diagnostic assessment service. Staffing comprises: 2 clinical psychologists (for diagnosis) and 2 clinical nurse specialists and 2 occupational therapists (management). There is a seamless transition from CAMHS for those already with a diagnosis of ADHD. Risk assessment, access to other adult mental health services and referral to individual and group consultations as needed are provided
5.3. Estimate of the likely demand for services locally 5.31 All eight Consultant Child and Adolescent Psychiatrists and 19 of the 27 Consultant/Associate Specialists in Community Child Health (100 and 71% response rates
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respectively) provided data on their current ADHD cases via the „local assessment of need‟ proforma. Of the non-responders, two told us that they were too busy to collate the data – since there is no electronic database held in community child health, consultants and associate specialists had to undertake the time-consuming task of checking all their clinic lists and diary sheets manually to extract the data.
5.32 We received data on a total of 313 young people aged 12 years and above with a diagnosis of ADHD or receiving medication for ADHD-type symptoms from either CAMHS or Community Child Health. Community child health provided data on 130 and CAMHS on 183 young people. We were able to attribute all of the data to individual prescribing doctors. Data cleaning excluded duplications. We then further excluded those cases which were not anticipated by the prescribing doctors as needing a post-17 ADHD service. A
total of 126 young people were identified therefore as needing a post-17 ADHD service some time in the next 5 years i.e. 2007-2012. Descriptive statistics are shown in Table 1.
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TABLE 1. Number of young people in CAMHS and Child Health definitely/likely to need a post-17 ADHD service, shown by age and gender (N = 126)
CAMHS (N = 66)
Child Health (N = 60) 14.6 (2.0) 12 to 18 14:1
All (N = 126) 15 12 to 20 8:1
Age in years (mean, SD) 15.5 (2.1) Age range in years Gender ratio M:F
13 to 20 15:2
5.33 When the ages of these young people were taken into account, we were able to produce an estimate of the numbers likely to require a post 17 ADHD service in each of the next five years (Table 2), assuming that they were transferred soon after their 17th birthdays (cut-off age for CAMHS and AMHS). 5.34 We know from a service modelling exercise undertaken in Leeds CAMHS for the ADHD Guidelines (Worrall-Davies, 2008) that the mean duration of a follow-up session is 30 minutes and of a „standard care‟ (previously standard CPA) transfer meeting is 60 minutes. Based on these figures we were able to estimate the amount of time each year that would be spent in monitoring the transferred young people over the next 5 years (see Table 2). 5.35 It should be noted that the service is funded for 4 hours a week, and based on a 40 week „working year‟ this equates to a total of 160 hours p.a. for the service. As can be seen from Table 2, by partway through 2010, any more referrals would not be resourced to be seen by the service.
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Table 2. Estimated use of post-17 ADHD service by CAMHS and Child Health (N = 126) between 2007 and 2012 and the hours of contact required by the Adult ADHD service to monitor transferred cases. Number of young people likely to need adult ADHD service 2007-2008 2008-2009 2009-2010 2010-2011 2011-2012 33 24 12 26 31 Hours needed/per year for new assessment+ 33 24 12 26 31 50 86 105 144 189 83 110 127 170 220 Hours needed per year for follow-up * Total hours needed per year for patient contact
+ based on 1 hour for each new assessment/handover session * based on 30 mins average follow-up session per contact and 3 follow-up sessions per year
5.4
Process mapping of the service
Data were obtained on 57 patients referred to the adult ADHD clinic in the 12 months between 1/11/07 and 30/11/08. Data cleaning removed one duplicate, and a further six were excluded as they had never been seen: of these, four had been refused as the referrals were from out of area, and two were for advice on management only. Data are presented for the remaining 50 patients (see Tables 3 and 4below).
5.41
Characteristics of the young adults referred.
The age range was from 17 to 40 years (median 18, inter-quartile range 17 to 20). The male:female ratio was 9:2. Over half the referrals were transfers from children‟s services: 19 (38%) from CAMHS and 8 (16%) from Child Health. Sixteen (32%) of referrals were from GPs and a further seven (14%) were from CMHTs. Of the 16 referrals from GPs, nine
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had a previous diagnosis of ADHD made elsewhere, usually in childhood, and seven were “new” cases for assessment for a diagnosis. Table 3. Referrals by referral source (N = 50)
Referral Source CAMHS Child Health GP (known ADHD) CMHT GP (new cases) Number of referrals 19 8 9 7 7
5.42 Referral source and engagement with the service
We were interested to know whether referral source affected the engagement with the adult ADHD service. It is possible that referrals from CAMHS found the change to adult mental health models difficult to adapt to. Alternatively, “newly diagnosed” cases of ADHD might find engagement with service more difficult. Table 4 shows the proportions of patients who were active cases on 30/11/2008 by referral source. Almost all CAMHS and CMHT referrals remained open, whilst only just over half of new cases referred by GPs were open cases.
Table 4. Referral Source and Current Status Cross tabulation
Referral Source
CAMHS Child Health GP “known ADHD” CMHT GP “new case of ADHD” Total
Closed case
2 2 3 1 3 11
Open case
17 6 6 6 4 29
Total
19 8 9 7 7 50
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5.43
All referrals from CAMHS had a face-to-face handover meeting arranged in the
standard care (ex-standard CPA) format, to which the CAMHS psychiatrist, young person and family, Chris Taylor and Sue Easton were invited. This was usually held at the CAMHS base. If the young person and family did not attend, transfer was then initiated, and the young person and family were sent a letter from CAMHS stating that their car had now been transferred to adult psychiatry. This happened for all CAMHS referrals. For child health referrals, a letter constituted the handover procedure.
Handover meetings were held or attempted for 24 patients – all those referred from CAMHS and five referred from CMHTs. An attempted handover is one in which the professionals handing over the case and the ADHD clinic team met but the index patient did not attend. For 16 patients, a handover meeting was not appropriate as they were
referred from GPs. For 10 patients no handover meeting was held. Handover meeting potentially would be expected to improve service engagement. We combined patients who had not had a handover meeting with those for whom one was inappropriate (new cases from GPs) and compared their clinical case status (open or closed case) with patients who had had a handover meeting. Patients who had attended a handover meeting were 1.5 times more likely to be an open case than if they had not attended a handover meeting. (Odds ratio 1.5, 95% CI 0.31 to 6.8)
Table 5. Clinic status of patient by handover status.
No handover held Handover held
Clinic status of patient discharged open 3 8 8 31
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5.5 Appointments. All activated appointments in the adult ADHD clinic resulted in a standardised Care Plan being produced, which was filed in the case notes, and sent to the GP, other involved professionals and the young adult.
5.51 Attendance. It was not possible to establish from the case notes often which appointments had been attended, cancelled or not attended. However, the clinic lists, which in 100% cases were manually annotated by Dr Taylor, showed the appointment procedure clearly. Patients were offered appointments spread from 3 weekly to 6 monthly,
dependent on clinical need.
5.52 We were not able at this stage to report reliably on which other services (Social Care, CMHT, college support, etc) were involved.
5.53 Outcomes at 30th November 2008. Of the 50 cases, 29 remained open. Re-assessing the demand (all the referrals coming in from all sources = number of people referred x time taken to process a person) and capacity (number of specialists x skill time available for assessment) figures in the light of the actual referrals received, we can see, from Table 2, that in fact, the adult ADHD service looks as though it would exceed current capacity by the end of 2008, assuming that all referrals remain in the service. However, this does not appear to be the case. The data
from this first 12 months suggest that as only 40% of the referrals appear to engage, the demand should not outstrip capacity before 2010.
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5.7 Stakeholder views: views of adult psychiatrists We conducted a framework analysis on the open-ended question on the final section of the adult psychiatrists‟ questionnaire: „Do you have any suggestions as to what format a
dedicated post-17 ADHD service might have and what services should be included?‟ We received six responses to this question. These contained enough text to conduct the analysis but we are not confident that we reached saturation of themes although generally speaking, with this type of analysis, three responses would be sufficient. We present the key themes and a discussion of them. Respondents‟ quotes are attributed to them by ID codes, R1, R2 etc. Respondents did not always identify themselves on their returned questionnaire so we have no way of knowing whether we had a diverse sample of respondents. 5.71 Themes We identified 5 main themes.: ‘does adult ADHD exist?’ ‘I have no experience in the field’. ‘zealots may over-diagnose ADHD’ ‘It should be multi-agency’ ‘pressure to prescribe should be resisted’
5.72 ‘does adult ADHD exist?’. Two respondents highlighted the lack of certainty about the status of adult ADHD. the area is to some extent controversial R1 the first step is to be able to robustly diagnose ADHD in adults R6 5.73 ‘I have no experience in the field’. R5 explicitly stated this – two respondents
didn‟t fill in this section, having earlier said that they did not know very much about the subject. 5.74 ‘zealots may over-diagnose ADHD’ There were concerns that having an ADHD service in the city might lead to „ADHD zealots‟ working for it and overprescribing and over-diagnosing. 25
There is a concern that the service would be populated by enthusiasts who may be perceived as over diagnosing and thus lose the confidence of the general mental health community. R1 There was a very pervasive concern about over-diagnosis of the condition if a service for adults with ADHD was started in Leeds. The routine use of standardised, nationally-used rating scales in assessment and diagnosis was proposed by several respondents as a way of combating over-diagnosis. All patients should be monitored against a priori standards using validated scales. These standards should be set …. from outside the service. R3 One respondent felt that the service should focus on those who had received a diagnosis in childhood, which would avoid such perceived difficulty with overdiagnosis. Several respondents felt that psychiatric assessment alone would not suffice, that psychiatrists might be pressured into giving a diagnosis when a psychosocial formulation would be more appropriate. An initial assessment by general secondary care MH services would to some extent guard against this [overzealous diagnosing] R1 [there should be] a liaison service with CMTs R4
5.75 ‘It should be multi-agency’. Some respondents felt that the service should liaise with or involve other services, or actually be multi-agency. It would be useful for it to be….multi-agency. R2
….the proposed service [should] work with potential and current employers and non-MH agencies in order to support individuals in their usual (non MH) life. R1
5.76 ‘pressure to prescribe should be resisted’. Several respondents expressed concern that psychiatrists might be pressured into giving medication when a psychological treatment was a more appropriate first line management strategy. The service should make non-pharmacological interventions a priority R3 26
5.77 Discussion of the themes A strong theme was that adult psychiatrists were not wholly certain that adult ADHD was a valid entity. From the evidence-base of meta-analyses, clearly adult ADHD is a discrete condition but it may be that this evidence-base is not known by adult psychiatrists, as it does not form part of their core work. We were surprised that some held the view that there might be pressure to prescribe Ritalin – and speculated to what this might be related.
Most respondents felt that a multidisciplinary and multi-agency service was needed; this was true for respondents who were and were not concerned about over-prescribing ad overdiagnosing. For those who were not concerned about over-diagnosis, they seemed to view MDT and multi-agency working as a „good thing‟ because it would provide a holistic wraparound service. For those who were concerned about over-diagnosis, they viewed the MDT and multi-agency approach as a way of tempering the over-keen diagnoser and prescriber.
The respondents were open about admitting that they had no experience in this area. For some this clearly led to anxiety, for others, to a clear decision to not treat ADHD cases, which had been in fact the stated Leeds PFT position in 2006. 5.8 Delphi exercise Although we were able to conduct a short framework analysis on part of the data, the low response rate, and sparseness of the responses we did receive, meant that the data were not of sufficient quality to use further in undertaking a Delphi exercise. Therefore this stage of the project was aborted. Had we tried to proceed, we would not have had enough data to use for defining distinctive configurations for prospective services.
5.9 Suggestions for post-17 transition service
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We struggled to find service users willing to tell us by phone or face to face about how „an ideal transition AHD service would look‟. We did not receive enough responses to undertake any form of analysis so we simply present the suggestions about the service format in Box 2 below.
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Box 2. How the ideal ADHD Transition service would look based on service user views.
The ideal transition ADHD service would Be multi-agency Stay up to date with new treatments Offer a choice of non-drug treatments e.g. anger management, stress reduction techniques, counselling, dietary advice Offer peer support Work closely with housing support services Offer employment advocacy Advise on college placements
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6.0 Discussion 6.1 The evidence for models of service for adult ADHD
There are very few services for adult ADHD in the UK (13 identified including Leeds). The paucity of collated information about how UK Adult ADHD services are configured needs to be addressed, to pull together good practice examples. One way to do this would be to identify and describe all such services across the UK using databases, websites, online and literature searches and word of mouth of experts in the field, to construct a directory of services. A national network meeting to be held on 20th March in London (personal communication, Asherson, 2008) may address this deficit.
It was surprisingly difficult to find contact details and descriptions of the Adult ADHD services on the internet. With the exception of a forum posting on the AADD website, personal communication with experts in the field was the best way to access service contacts and details. Services were mostly unwilling to give out service information over the phone and email proved an easier way to communicate.
6.2 Methods of this study: weaknesses We struggled to recruit service users in the 17 years and above age range. This was partly because we had planned to ask the Leeds CAMHS Users‟ Group, but unfortunately this folded just before the start of the study. This means that we were unable to do more than present user findings as verbatim text without further analysis. This group is „hard to reach‟ and therefore traditional research methods may not be appropriate. Thus we intend to adopt a „participatory action research‟ approach to the next phase of the work, which should ensure user narratives are heard.
We also had extremely disappointing responses from adult psychiatrists, both in the response rate of 12%, low by any account, and also in the poverty of the responses. Possible reasons for this include: the psychiatrists may have been too busy, have considered that
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ADHD wasn‟t part of their remit, not been interested, or not felt experienced enough to answer.
6.3 Methods of this study: strengths We obtained robust demand data from CAMHS and Child Health with high response rates. This allowed us to predict the demand for the transition service very accurately. Anecdotally, the concern felt about the need for a transition service for this group of young people, by many consultants in child health and CAMHS, may have contributed to the excellent response rates.
Another strength of the study is that it was rooted in the stakeholders of the pilot service. We therefore were able to identify views about the purposed service that will directly impact on it. It also allowed us to use the data directly to estimate use of the service and make recommendations about whether and when demand will outstrip capacity.
6.4 The themes raised by adult psychiatrists The current evidence-base clearly demonstrates that adult ADHD is a discrete condition. However, among our respondents there were very evident concerns about the validity of ADHD as an entity, the methods to diagnose and treat it. We were surprised that some held the view that there might be pressure to prescribe Ritalin – and speculated to what this might be related. A decade ago, this view was prevalent among CAMHS in the UK but more evidence in UK-based trials has now led to widespread prescribing of stimulants for ADHD in children, culminating in the NICE (2008) guidance. Current research and policy documents indicate that stimulant prescribing is justified and appropriate in adult ADHD. At the time of the
study, the NICE (2008) ADHD guidance was not published, but the draft consultation document was available online, as was the Editorial (Asherson, Chen, Craddock & Taylor, 2007) which „strongly recommends that general adult psychiatrists should diagnose and treat
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attention-deficit hyperactivity disorder (ADHD) in adults appropriately with stimulant drugs‟ (Royal College of Psychiatrists Press Release, 2007).
Respondents were open about admitting that they had no experience in this area and this is a clear training issue for junior psychiatrists and for those already in consultant posts.
6.4 Demand and capacity issues. When referrals from adult psychiatry, GPs or CMHTs are added to the CAMHS/Child Health cases, demand would outstrip capacity in the adult ADHD service by the end of 2008. However, as only about 50% of the referrals appear to engage, the demand should not outstrip capacity before 2010/2011. This is very simplistic modelling and more sophisticated techniques should be applied in subsequent work (NHS, 2007). It would be informative to know whether it is possible to predict which patients will engage and which will not; our work suggests that patients referred from GPs requiring assessment for ADHD do not engage well even when given a diagnosis of ADHD.
6.5 The ideal ADHD service Clear statements were made about how an adult ADHD service should look although the responses lacked great detail. However, a holistic approach to managing ADHD was seen as the ideal way forward. Yet the service specifications we received from SLAM, Rotherham, Stockport, and to a lesser degree, Northamptonshire, like Leeds, all followed a very medical model rather than a holistic one. It is clearly early days for adult ADHD service development in the UK.
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7.0 Conclusions and Recommendations
7.1
There is clearly a significant need for an adult service with a total of 126 young people
predicted to need transferring from CAMHS and Child Health between 2007/08 and 2011/12.
7.2
This demand is likely to be doubled by the addition of referrals into the service from
adult mental health and other psychiatric specialities as well as new cases from primary care.
4.2 The demand is predicted to outstrip current resourced capacity in 2009 and therefore funding arrangements should be reviewed urgently in discussion with the service personnel, providers and commissioners.
4.3 There is a clear need for training to increase knowledge and change attitudes in adult psychiatry in line with current research and the NICE CG72 Guideline (2008).
4.4 Strong multidisciplinary and multi-agency links should be integral to the ADHD adult service, which are not in place as yet. These were seen as crucial by service users, providers and other key stakeholders and this is echoed in the NICE guidance.
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8.0 References
Asherson P, Chen W, Craddock B & Taylor E (2007). Editorial. Adult attention deficit hyperactivity disorder: recognition and treatment in general adult psychiatry. British Journal of Psychiatry, 190, 4-5. Ashton H, Gallagher P and Moore B. (2006). The adult psychiatrist‟s dilemma: psycho stimulant use in attention deficit/hyperactivity disorder. Journal of Psychopharmacology, 20(5),:602-610. Biederman J & Faraone S (2005). Attention-deficit hyperactivity disorder. Seminar. The Lancet, 366, 237-248.
Davidson M (2008). ADHD in adults: a review of the literature. Journal of Attention Disorders, 11(6), 628-641.
De Graaf, Kessler, Fayyad Ron de Graaf, Ronald C Kessler, John Fayyad, Margaret ten Have, Jordi Alonso, Matthias Angermeyer, Guilherme Borges, Koen Demyttenaere, Isabelle Gasquet, Giovanni de Girolamo, Josep Maria Haro , Robert Jin 2, Elie G Karam , Johan Ormel2 and Jose Posada-Villa (2008). The prevalence and effects of Adult AttentionDeficit/hyperactivity Disorder (ADHD) on the performance of workers: Results from the WHO World Mental Health Survey Initiative Occupational and Environmental Medicine. Published Online First: 27 May 2008. retrieved 20/10/2008, http://oem.bmj.com/cgi/content/abstract/oem.2007.038448v1
Edwin F & McDonald J (2007). Services for adults with attention-deficit hyperactivity disorder: a national survey. Psychiatric Bulletin, 31, 286-288.
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Fayyad J, de Graaf R, Kessler R, Alonso J, Angermeyer M, De Mytennaere K, de Girolamo G, Haro JM, Karam EG, Lara C, Lepine J-P, Ormel J, Posada-Villa J, Zaslavsky AM & Jin R., (2007). Cross-national prevalence and correlates of adult attention-deficit hyperactivity disorder. British Journal of Psychiatry, 190, 402-409.
Mandel H (2008) Adult ADHD is Real, http://www.adultadhdisreal.com/howiesstory.html) retrieved 20/10/2008
National Health Service Modernisation Agency (2005). Improvement Leaders Guide: Matching capacity and demand. London: Department of Health Publications.
National Institute for Health and Clinical Excellence (2008) Attention Deficit Hyperactivity Disorder. CG72. Guidelines. London: NICE
Nutt DJ, Fone K, Asherson P, Bramble D, Hill P, Matthews K, Morris KA, Santosh P, SonugaBarke E, Taylor E, Weiss M and Young S. (2007). Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: recommendations from the British Association for Psychopharmacology. Journal of Psychopharmacology, 21,:10 - 41.
Pope C, Ziebland S, Mays N. (2000). Qualitative research in health care. Analysing qualitative data. British Medical Journal, 320(7227): 114-6.
Ramsay JR and Rostain AL (2008). Adult ADHD research: current status and future directions. Journal of Attention Disorders, 11(6), 624-627.
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Reynolds C (2008). Introduction to the special issue on ADHD in adults: overcoming resistance while avoiding zealotry. Journal of Attention Disorders, 11(6), 619-622.
Taylor E & Sonuga-Barke, E (2008). Disorders of attention and activity. chapter 34. In Rutter‟s Child and Adolescent Psychiatry, 5th edition. Eds. Rutter, M., Bishop, D., Pine, D., Scott, S., Stevenson, J., Taylor, E. and Thapar, A. (eds.) Rutter‟s Child and Adolescent Psychiatry 5th edition, Oxford: Blackwell, 1248pp.
The Royal College of Psychiatrists (2007). Is Attention-Deficit Hyperactivity Disorder Properly Diagnosed and Treated in Adults? Press Release, January 03, 2007, retrieved 9/11/08 http://www.rcpsych.ac.uk/pressparliament
The British Psychological Society (2000). Attention Deficit Hyperactivity Disorder (AD/HD): guidelines and principles for successful multi-agency working.
Verity, R & Coates J (2007). Service innovation: transitional attention-deficit hyperactivity disorder clinic. Psychiatric Bulletin, 31, 99-100. Weiss M, Safren SA, Solanto MV, Hechtman L, Rostain AL, Ramsay JR and Murray C (2008). Research Forum on psychological treatment of adults with ADHD. Journal of Attention Disorders, 11(6), 642-651.
Worrall-Davies A and ADHD Guidelines Group (2008) Assessment and treatment of ADHD. Leeds Primary Care Trust: PL088.
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Appendix 1. Adult ADHD case vignettes AB, aged 32 years AB is referred by his GP with a request for assessment of possible ADHD. His 6 year old son has recently been diagnosed with ADHD by the local CAMHS service. AB has spoken to his mother and reports that as a child he had many of the symptoms that he now sees in his son – always on the go, restless and fidgety, poor concentration, always getting in to trouble etc. He did poorly at school and dropped out aged 15 with no qualifications. He has worked in a series of unskilled manual jobs ever since and is currently unemployed. He says that he is a poor reader and still finds it hard to concentrate on anything to do with reading and writing. He is not restless or fidgety but doe3s still have a problem with anger management and can fly off the handle. He knows ADHD can run in families and wants to know if he has it and if there is any treatment.
CD aged 19 years CD is referred to the adult ADHD clinic by the local substance misuse team. CD has a long history of violence and aggression, has been in trouble with the police since the age of 12 and effectively left school at 13. He has used a variety of street drugs over the years but now wants to `get his life back together‟. The substance misuse team have been working with him and he is now drug free. He has a place at college but he is finding it hard to concentrate. CD says that in the past he has taken methylphenidate that he has bought on the street and that it helps him stay focused. The substance misuse team want an assessment for ADHD and to review the possibility of medication to help him with his college work.
EF aged 20 years. EF is a 20 year old university student. She was diagnosed as having ADHD aged 7 and treated with methylphenidate by her local CAMH service until she left school at 18, when by mutual agreement she came off medication. She is now a second year university student. She did well but not as well as she hoped in her first year and is finding concentration on the academic work hard. She would like to go back on methylphenidate.
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