IAPT Severe Mental Illness (SMI) Stakeholder Event

IAPT Severe Mental Illness (SMI) Stakeholder Event Wednesday 23 rd November 2011 London This event was attended by approximately 120 stakeholders from around the country. It was chaired by Dr Alison Brabban and Dr Alex Stirzaker, IAPT National Advisors for SMI. In the morning, a number of presentations were offered focussing on IAPT development to date and the NICE evidence base for psychological interventions for people with Psychosis, Bi-Polar Disorder and Personality Disorder. This would inform the discussions proposed in the afternoon exploring the development of a project in the IAPT programme designed to increase access to psychological interventions for people with SMI. Kevin Mullins, National IAPT Programme Director, outlined the aspirations of the IAPT Programme. In particular, he saw Experts by Experience leading the changes. He outlined that the 400m spent on the programme by 2014 would lead to an economic return of 700m across government spending; 1.2 million Individuals able to access therapies; and 0.5m helped to recover. The issues that preoccupy those interested in performance management are: 1. Numbers accessing treatment compared to the level of need 2. The numbers of treatment completers 3. Waiting times Issues also increasingly relevant at DoH level are: 1. The mandate and operating framework 2. New Commissioning Structures 3. Information Standards Notice (ISN) implementation will increase public accountability of services 4. Payment by Results (PBR) will highlight good outcomes regarding access, satisfaction and effectiveness 5. A Q P AQP 6. Quality, Innovation, Productivity and Prevention (QIPP) 7. Educational and Service commissioning need to be aligned more fully Professor Liz Kuipers, Institute of Psychiatry gave an overview of Good Practice, Evidence Base and Implementation Issues in Psychosis. NICE guidelines recommend that Cognitive Behaviour Therapy specifically for Psychosis (CBTp) of more than 16 sessions be offered, and Family Interventions (FI) should be for 3-12 months and more than 10 sessions. Longer term treatments are better than shorter term treatments. She noted that it is usually not worth pushing therapy on those who do not want it. She linked recent fmri studies to the prediction of responsiveness for CBTp. Audited provision of CBTp and FI is low only 10% in CMHTs and 12% in Specialist teams. She shared the 1

work of the Psychological Intervention Clinic for outpatients with Psychosis team (PICUP) whose therapy costs are offset by fewer inpatient costs at 3/12 follow up. Dolly Sen, an expert by experience who lived a chaotic adolescent life with paranoid sensitivity and hallucinations, then gave a powerful personal perspective of living with psychosis, receiving a diagnosis and most importantly receiving some CBTp. This helped her greatly to move on in her life. Her talk was powerful, very well presented, clear and relevant and inspiring. Prof Steve Jones then spoke of Bipolar Disorder: Psychosocial Factors and psychological therapies. Those with this diagnosis have unemployment rates of over 50%, a completed suicide rate of x 18 times the general population, and >40% rates of alcohol and drug misuse. Both positive and negative life events are associated with triggering episodes. They average 10 years from first contact with services to getting a diagnosis of Bipolar disorder. Psychological interventions are effective for some people. Barbara Cable, expert by experience, then gave a personal perspective of living with Bipolar Disorder and her treatment. In particular, she outlined her informal support network of L Lithium, Love, Lifestyle and Learning. Her talk was equally inspiring, delivered with humour and much appreciated. Dr Michaela Swales then outlined Good practice, evidence base, and implementation issues in Personality Disorder. She shared the NICE guidance that treatment of BPD especially when more severe requires structured, coordinated treatment efforts by a well supervised, well led team. She illustrated this by using examples of DBT trainings. She contrasted the offsite model with the systemic onsite model of training in delivery of DBT. Tracie-Anne Caffyn, expert by experience, bravely illustrated her difficulties that led to her being diagnosed with PTSD, Eating Disorder, and Borderline Personality Disorder. She also illustrated her love/hate relationship with DBT which has been life saving and life changing for her. She was constructively critical of her experience as a recipient of DBT and naturally found it more difficult to use when she was feeling particularly distressed. She presented work in progress and was a great example of making this manualised treatment very much her own. Anthony Bateman gave a succinct overview of a range of structured treatments for BPD that are shown to be effective in RCTs DBT, TFP, SFT, CAT, CBT and MBT. He suggested a large overlap of psychotherapeutic techniques and that outcomes for structured clinical management are very good. He illustrated this using examples of the well structured control groups also shown to be effective in treatment delivery for BPD good clinical care, supportive psychotherapy, general psychiatric management and structured clinical management. He reminded us of the expert consensus of the importance of well structured treatment programmes, a treatment theory that is coherent, a clear focus of treatment goals, an active clinician, encouragement of a powerful attached therapy relationship, monitoring of treatment and clinician competencies, and integration with other services. He highlighted the importance of supervision and team working, self observation in the clinician and the therapist, skills in managing suicidal risk, analysis of events leading to increased distress, and the identification of emotions. Karen Nicholls, expert by experience, then gave an engaging presentation of her journey through lots of distress, lots of diagnoses, lots of treatments all dealing with specific symptoms rather than her more central difficulties. She had used a range of accepting herself more through 2 ½ years of treatment in a day programme. She clearly suggested what was helpful in therapy to her improvement in coping with what life throws at her. 2

After lunch, we heard from David Clark on what had worked well in the IAPT programme thus far. IAPT is now delivered by 96% of PCTs and covers 56% of the population delivering 460,000 treatments per year. Approximately 43% of patients recover with the most severe cases showing the largest change. He noted that there are no randomised controlled trials for generic CBT all RCTs that support NICE recommendations involve a specific CBT approach for a specific set of problems. For this reason, the national curriculum covers specific CBT programmes. When discussing training he noted the importance of competencies, of modelling of treatment by experienced clinicians in the service, and of competitive selection of the best trainees. Outcome monitoring is essential for continuing political support and must involve pre and post data collection for everyone, and use of well validated measures. High levels of data completeness are best achieved by planning to give outcome measures every session because if a patient drops out there will still be a last available session score. Effective services have a core of experienced staff, with written clinical protocols, IT systems for collecting outcome measures, weekly outcome focused supervision, assertive outreach to referrers, take self referrals, and show ambition, a desire for innovation, and openness to what the data tells you. In delivering an effective National Programme, we must not forget the importance of the economic argument, effective project management, stakeholder engagement, co-ordination with broad NHS policy initiatives, establishing early gains. and delivering on time within a government cycle. Kevin Mullins, standing in for Kieron Murphy, spoke about effective mental health commissioning and outlined the commissioning context and how it is likely to impact upon service delivery in the changing NHS. Helen Killaspy, Chair of the Social and Rehab Faculty, then spoke from the perspective of a jobbing psychiatrist. She wondered why FI and CBTp have such a low uptake. She described an audit of colleagues in the Faculty in an attempt to find answers to this question. Most MH rehab units have a low level of Psychology input. A positive psychology input is perceived as better resourced, supervision of delivery of FI and CBTp by other staff, occasional psychometric testing, consultation on challenging stuck cases, psychological input to all service users, and supporting staff delivering services in supported accommodation. In contrast negatively perceived input was very limited, with no clear focus, lack of support for FI and CBTp, working with only a few service users, no team support, n H colleagues had suggested a few tasks that psychologists might drop to make time to be more effective in their services. The attendees then joined six workshops on implementing IAPT for SMI, divided into streams for PD P B D Education and Training Service Development and Design Outcome and Evaluation The discussions were guided by a list of questions and were recorded for further consideration by all. K T F G take forward the SMI work in the IAPT programme. 3

Afternoon Workshops Education and Training Workshops Questions to be discussed were as follows:- 1. How might psychological therapies and psychologically informed practice be integrated into current services? 2. NICE guidelines make no recommendation for offering low intensity intervention for this group. In light of this, is it possible to offer a stepped model of care to those with an SMI and if so what would low intensity interventions consist of? 3. What might a competency framework or set of frameworks look like for the delivery of psychological therapies and psychologically informed practice for people with SMI? 4. Who might deliver psychological therapies and what is the role of clinical and counselling psychologists in the roll out of the IAPT programme to SMI? 5. The IAPT for SMI project faces a significant challenge owing to a shortage of competent trainers and supervisors available to roll out extensive training in psychological therapies for SMI. What solutions could be found to counter this? 6. What infrastructure and organisational changes might be important to sustain this development? Psychosis and Bi-Polar Disorder Discussion Group Emerging themes from the discussion were as follows:- Training individuals v organisational change The suggestion of training some members of the workforce in psychological therapies is based on the limited amount of available money I It must be followed by skills training and coaching on the job Training should be across all levels of healthcare practitioners Services should be re-orientated in a more efficient way so that service users get what they need this means embedding a psychological ethos and changing cultures. There was some debate about whether to take a top-down or bottom-up approach: Some people suggested that we need to win over the top levels first and that change has to occur throughout the whole organisation. This is linked to a need to create common psychological language and thought and this has to happen over the long-term It may be a better use of money to skill up fewer, keen individuals rather than try to change the working methods of the whole workforce 4

It was suggested that the question we are asking is whether we want revolutionary change, or evolutionary change. Winning the economic argument may make revolutionary change more possible. Transforming existing services would be preferable Transforming the existing workforce would be better than creating a new workforce Ability to transfer stepped care to SMI One participant from an early intervention service highlighted the importance of a stepped care element, based on the evidence of success from such early intervention services. D understanding change. The characteristics of IAPT low-intensity work are: - Involvement in assessment - Signposting - Self help - Computerised CBT - Psychoeducation There may be some similar elements already in existence in SMI services Existing interventions for anxiety and depression are relevant to people with SMI, and we should be emphasizing co-working. The difference is that for SMI people must be able to step up their care quickly A thorough understanding of needs should be achieved through the assessment, this could lead to possible low intensity work There is a question of breadth versus depth, and what is the best use of limited funds With regard to stepped care, step2/3 could merge more and work together Could low intensity interventions carry on over the long term? This would be a significant difference to how services work with anxiety and depression In the traditional system of mental health, practitioners are used to signposting Staff confidence/ competence with low intensity work M If staff are under confident with certain methods, they will tend to over-rely on the bits they like doing or feel confident doing Some elements will be more relevant than others, or only relevant to certain types of work e.g. computerised CBT is not useful for family work while it could be helpful for individuals in a family, it could not be used for working on relationships. Who is the appropriate person to deliver these therapies? The problem is with workers changing and moving on Should funds be directed towards creating an evidence base to support the argument for further investment, or pushing forward to implement interventions that already have an evidence base? 5

There is a debate around whether we really want to spend money evaluating low intensity interventions for SMI when there is no evidence it will work, or whether the money would be better used just focussing on implementation? On the other hand, if we did spend money on evaluating low level interventions, we may create an evidence base and an economic argument for continued investment. Someone suggested that we know that SMI requires longer term interventions, and therefore we should stick to the evidence base There is work to be done to identify function and role in existing services and evaluate this. The strength of IAPT for SMI is as a new role Discussion about whether we should look at creating a psychological approach to case management, or whether in fact this is not the scope of IAPT, there was the view that IAPT is about an evidence base and this should not be diluted. IAPT not provide outcomes The evidence for low intensity work may be emerging over the next few years The aim of the programme is to increase ACCESS to psychological therapies, not to improve these therapies There is little evidence supporting educating the whole workforce in psychological methods it is not a strong enough argument yet Creating a psychologically thinking workforce The pressures on the generic workforce are already so big that they are forcing a reduction in psychological work by non-specialist staff, this does not tally with suggestions to train the whole workforce in psychological interventions Issues of implementation There is a shift to primary care, and access to IAPT will not be through secondary care. The commissioning shift to GPs alongside this will mean more people are now being treated within primary care now anyway New services are beginning that challenge the primary/ secondary care dichotomy there is an opportunity here for creating new combined service Maybe we should be comparing CYP IAPT rather than with existing adult IAPT and learn from this they have used a different model of implementation The CYP model trains small numbers but it relies on service redesign to improve access to these people for the service users who need it Possible models of implementation Suggestion of an outpatient clinic model? this does not fit with early intervention work in the community with families and networks the clinic model is focussed on the individual 6

One way of training would be the cascade model, including very close supervision and ongoing learning with somewhere to come every month and check in on progress and learning. This requires the team leader to be on board and a critical mass of staff involved. In one model of service delivery, primary care services are bolted on to an IAPT service. This means staff can move across bringing understanding and skills with them and learning can be shared across the services. Whole team training Collaborative case management Limit on caseloads Gateway workers can bridge the gaps between different levels of care Confidence is a major issue co-working and apprenticeship models can increase this. IPS model can be built in this increases confidence and can increase access to mainstream services Other points This all comes down to good assessment and good training Triage screening Much of this is based on an individual model of care, how do we assess the family? Is it up to psychologists to decide who delivers low intensity treatment after people are assessed? We must be mindful of the differences between bipolar and psychosis there is a different evidence base and different competencies are needed Training and organisational issues go hand in hand The training model is different for family interventions W IAPT it is part of what we do. Personality Disorder Discussion Group The discussion has been organised into two main areas: 1. The patient group/service model will decide the workforce and training needs. The patients could be at a variety of levels from people (at a preventative level) with early onset of PD symptoms (with no formal PD diagnosis) to people with more substantial difficulties who need more specialised help. This highlights different workforces from primary care, IAPT to specialist services A screening tool e.g. SAPAS is likely to be needed at an early stage for use by PWPs for instance. There are IAPT services that already undertake this screening e.g. in London and the South West Some people with PD have anxiety and depression symptoms which can be worked with in general treatment pathways (including IAPT). Some of this support may be specific short term interventions e.g. psycho education groups for BPD, avoidant PD, etc., some maybe longer term. 7

Where there are additional needs there may need to be a more coherent treatment pathway for people with PD symptoms/diagnosis. It was suggested that data be collected on the effectiveness of Low Intensity therapy for this client group. I PD i-disciplinary teams, the use of the voluntary sector and maybe being part of care clusters (although this group are not explicitly included). 2. Additional staff training needs It was thought that clinical competencies should be the way ahead, not particular qualifications, in common with IAPT practice to date. This would then allow for different interpersonal styles, different staff roles, etc This led to agreement that a PD competence framework would be a logical and helpful next step. Which staff delivering which interventions needs clarifying together with the integrated supervision necessary. It was thought that even if some staff had additional training in PD competencies, the work with patients with PD symptoms should have ownership by the whole service with organisational backup at all stages. It was also thought that group working skills need to be part of this training. In line with the above, it was thought there could be general PD training for all staff and specialist PD training for a few IAPT staff. This clearly needs defining further. One way of addressing this might be working with more specialist PD teams as part of their training. It was noted that there are already in place a number of trainings and trainers in PD e.g. KUF, STEPS, DBT. It will be important to consider how these can be built on or tailored. Next steps will include looking at what constitutes Low Intensity interventions for this group (what and number of sessions); how this may be addressed by CPD and by reviewing current curricula and the development of a competence framework for PD Service Redesign Workshops Questions posed were as follows:- Recognising that the SMI project for IAPT is about building upon existing good practice in mental health service provision, we would be interested in learning more about what does and does not help in the delivery of psychological practice to people with SMI. We would like you to consider the following:- 1. Who should psychological therapies be aimed at? (Please consider factors such as age, symptom presentation etc.) 8

2. What do we already know about what service users and the evidence base suggests makes mental health services more accessible and improve their outcomes. 3. Are there any significant changes in existing service models that could be made to improve access to psychological therapies and improve outcomes (reduction of the duration of untreated illness, recovery, service user satisfaction etc) for those with SMI and their families? 4. What components of a service ensure that psychological therapies are delivered most effectively? 5. Who could be involved in the delivery of Psychological Therapies? Psychosis and Bi-Polar Disorder Discussion Group Emerging themes were as follows:- 1. Psychological therapies for whom? The group was in agreement that everyone should be offered an assessment, they would not prioritise any particular group within these diagnoses i.e. age/gender etc. The answer to this question depends on how psychological therapies are delivered. For example, psychologically informed (but not structured) support could be available to all e.g. self-help, information. T 2. What psychological therapies? The group shared the view that all professions involved in the care of people with psychosis or bipolar disorder should be psychologically informed. Structured CBT (i.e. NICE recommended) should be saved for those who would benefit from this. Candidates for this should not be excluded on the basis of age or intensity of symptoms. One participant also asserted that this should not just be people who are not responsive to medication treatment must start with psychologically minded approaches from the outset. This was met with some agreement. Following an assessment, a package of psychologically informed approaches can be offered. T be equipped to work with families. 9

3 Promoting psychological approaches How will patients/families find out about the option of psychological therapy? Health professionals need to talk to people about the benefits of these approaches, perhaps through education programmes. One person raised the view that a much more flexible approach to how psychological therapies are delivered in the community is needed and many agreed. For example, we should not base self-referral is very important for this. Self-referral was thoug BME W Self-referral was also thought to be helpful for people with bipolar disorder who may otherwise get excluded if they do not have psychotic symptoms. It is better not to have to rely on GP screening. Peer-workers with experience of psychological interventions for recovery also have an important role to play. For improved accessibility, these approaches must be described in language that is not off-putting i.e. not jargon. 4 Changes for improved delivery It is essential that psychological approaches are integrated with other programmes we must not have a series of non-integrated stepped care models. Employment, housing etc programmes must be linked with or The group are concerned that IAPT models currently are too separate from CMHTS for delivery for SMI. Consensus that low-step care could be provided by CMHT staff and higher intensity would be provided more specialist. Low intensity skills should be built into all staff training. The group agreed that psychologically-minded staff have been stripped out of secondary care, despite risks being higher than in IAPT services currently. The major flaw in current engage patients and their families. Many trained 20 years ago or more and will have no training in T All staff should be trained and for these skills to be seen as core, not extra. Currently, clients stay with a psychologist for longer than they need to, because of the absence of psychologically-minded skills in other staff. The group do not agree that IAPT as a model can provide for everyone, such as people with SMI. A Finland for significantly better outcomes at 10 year follow up. This approach involves in house training for all staff. It is possible. In this model, the family is assessed within 48 hours. 10

Another model of organisational change mentioned is ImROC (Implementing Recovery through Organisational Change). 1 The group discussed the Early Intervention model, which we already have available, but which simply drops off after 3 years. This model delivers so much of what is needed, but not for everyone. This also impacts upon the family radically. We should learn from, not replicate, Early Intervention. 5 Components for effective delivery T is needed to ensure that staff have dedicated time to do family work. Families should be seen where and where it suits them. Some members of the group agreed that more could be gained through family work than through CBT with individuals. Some agreed that it would be useful for nurses and other staff to have tools to help structure a psychologically-focused T agreement in the group that staff would value this kind of support, and that psychologists would be well placed to support the up-skilling of staff and develop new approaches. Psychologically focused activities and skills must be built into job descriptions and appraisals. One person stated that nursing staff on inpatient wards particularly need help with very basic H J more supportive that nursing staff. Employment goals should be introduced from the outset. Current approaches to sharing responsibility for employment outcomes across health and other services is a potential model for shared responsibility for psychologic All agreed that specialist supervision is essential to prevent triggering worse health through bad practice. However, delivery is not just about psychologists there are not enough. We must think about a workforce that includes psychologists. A suggestion was made that arts therapies could be useful for people with more complex needs. This can also apply to activity based interventions for young people. One participant agreed with this and gave a personal experience of the frustration that staff were not available to supervise the use of equipment for activities when that would have been the ideal approach. Outcomes data is essential. Trusts may claim they are providing psychological support but the data will show the true picture. 11

6 Resource vs quality The group are keen to be realistic about current pressures on resources. One suggestion was to develop different approaches for trusts with varying financial resources. We could develop a This programme could be an opportunity to build evidence on approaches that are not strictly CBT or Family Intervention models. T T minimum level of provision and quality, while allowing for variation. This has been helpful in Early Intervention. The group was largely in agreement on this. Service users and carers must be involved in developing and evaluating approaches, as experts by experience. O GP providing therapies/ family work etc. Personality Disorder Discussion Group Who should psychological therapies be aimed at? We need to think about the range and severity of SMI disorders. There needs to be a greater emphasis on the importance of early intervention. It is on the acute side of care that people most often present before diagnosis GPs want to be clear about, MH T is much un-met need in the population. What do local commissioners want? Are they aiming to obtain money and resources or are they more intent on getting clinically correct outcomes? Probably both but an interesting point. There is a need to develop a spectrum of interventions & definitions of conditions to aid therapists in -help. It is crucial that the issue of stigma, associated with suffering from PD (amongst others) is addressed in relation to therapists, their patients and the population at large. D PD T development of a PD care pathway would greatly help in the reducing of the timelines around untreated conditions (waiting times). The challenge for IAPT is to identify PD sufferers early in triage and place them into an appropriate course of therapy (i.e. suggested as CBT). The IAPT method needs to link in with the wider community, in particular around education & training resources. Conversations on this should take place with DWP. It is impossible to develop a treatment for PD in MH exclusively input and feedback is required from beyond the system. As service provision is patient centred, the needs of patients need to be considered in the round (e.g. patients build up many friendships around MH services) and there should be a way to facilitate and maintain these contacts even after psychological treatment has concluded. There is also an issue around the 12

It was identified that there are many PD patients in secondary care; there is a feeling that their needs are not being fully addressed. They often move between conditions (i.e. depression, anxiety etc) because of presenting different symptoms the rigid categorisations are unhelpful in relation to providing requisite treatment. For PD, primary intervention may not necessarily constitute a psychological therapy. PD has a very biomedical feel and, unfortunately, it is not a condition that can X Y ) C pathways are complex and multi-faceted the most important aspects of PD treatment are OPTIONS, CHOICE & COLLABORATION. It is difficult to fit PD into the IAPT framework of IAPT- I PD IAPT- there is a very large, established range of evidence-based interventions and if clinicians are clear on a) what services are being provided and b) what the anticipated outcomes should be. In terms of treating PD patients, the condition requires a number of different interventions from a genuinely multi-disciplinary team. PD sufferers, as well as the wider SMI patient community, have a number of other socio-medical problems which will undoubtably require some form of socio-clinical interventions. In that vein, PD cannot be regarded as a standalone condition. Lord D NH N therapists need to understand what other clinical professionals are doing so that individualised care pathways can be created for patients. After an assessment, patients can have packages formulated for them to meet their specific needs; the package would contain a number of different psychological therapy services / interventions. In relation to all SMI conditions, the ability needs to exist to step care up and down as dependent on patient need. 6 Key Priorities: 1. SMI therapists need to be skilled in the delivery of more than one model of psychological therapies; the need for flexibility in approach, according to patient presentations, with treatment taking place under supervision. 2. Patients cannot get a less than effective psychological treatment. 3. The need to effectively orient the clinical team, which is multi-disciplinary and multi- G individual clinicians have to offer amongst themselves. 4. The importance of therapist resourcing and managing expectations; the project scope needs to be identified, alongside an appreciation of what can be realistically achieved. 5. PD needs to be embedded within psychological therapies more generally, spanning a number of care pathways, and not treated as a standalone, isolated condition with one form of clinical treatment. 6. Understanding examples of best practice, building upon them and learning from them for the future. Outcomes and Evaluation Workshops Questions posed were as follows:- 13

Learning from the success of the adult IAPT programme, we need to develop robust outcome monitoring to demonstrate effective delivery of the SMI project. This is particularly pertinent in the emerging commissioning environment with payment by results likely to emerge in the not too distant future. Hence, we would like you to consider the following questions:- Considering the array of stakeholders, what are appropriate outcomes that need to be measured to demonstrate the success of the IAPT for SMI project? Specifically, what outcome measures could be used to demonstrate effectiveness for: a) service users b) carers/families c) service effectiveness d) cost effectiveness This IAPT for SMI project offers an opportunity to collect practice based evidence. What specific issues could we investigate where the evidence base is lacking? Psychosis and Bi-Polar Disorder Discussion Group The group began with each member highlighting key issues that they felt were important to consider in relation to outcomes and evaluation for SMI IAPT: Need to include social issues Need to include equality issues, including gender and ethnicity Consideration of some key measures that can be used generally Need to consider what commissioners are looking for and concerns around limited resources Need to recognise and measure inequality across different locations and practice variation Need to consider a) what is it that services are meant to do, and b) how will we know if they are doing it? Needs to allow for local implementation and power at service level, not only top down dictation of priorities Measurement of outcomes should be user-led and co-produced Need to measure clinical outcomes and the reality of local situations Attention should be paid to what questionnaires should look like and whether they are always appropriate Care should be taken when setting targets to consider whether what can be achieved in a research setting can really be achieved in day-to-day services Consideration should be given to where savings are made outside of health, including the broader economy, housing and employment who pays and who gains? Evaluation should include a strong formative element Factors that would matter to service users should be used, e.g. staff turnover/burn-out and job satisfaction which may be good indicators for a quality service There should be evaluation of the transit between treatment and community 14

For co-production to be meaningful, service users should be trained up in research skills. Further discussion of these initial points focused on: - The importance of BME and other minority issues - Evaluation should consider ideas of empowerment for many people who have used secondary mental health services, their experience may have been focused more on containment than on achieving goals. People should be enabled to develop their own tools that incorporate notions of recovery and self-management. To this end, clinical measures should be supplemented with patient-recorded measures. - Measurement should include outcomes which indicate whether people have been enabled in themselves, for example in breaking cycles of returning to hospital or prison. This should include two levels: a) can service users identify the factors in these cycles, and b) can they change them? - There needs to be an acknowledgement that timescales are likely to be longer for people with SMI. There is a danger that Trusts will be led by budgets, and will therefore seek outcomes within a shorter time period patients may require more than a year to show outcomes. - Services should be rewarded for delivery of evidence-based therapy, including how systematic and organised services are. However, services are also at their best when they are developing their own learning and can show evidence of improving practice. Evaluation should include evidence of this internal auditing process. - The evidence-base, though considerable already, will need to be continually developed in practice. - Attention should be paid to the barriers to implementing interventions and achieving outcomes. For example, there was a sense that secondary mental health services are not psychologically-minded and are too focused on risk-management. - Service effectiveness requires a cultural shift, including considering how CPA can be an engaging, useful part of feedback. - Measures have been developed by and with service users that are available for use including those by Brent user group and London Health Programmes, and by Rethink Mental Illness. No need to reinvent the wheel. - There is a need to consider what takes place between acute wards and IAPT, recognising the patient experience in acute wards and the over-representation of some groups, e.g. BME groups. 15

- Care should be taken with an over-reliance on diagnostic categories which are often acknowledged to be artificial. Needs to reflect a more holistic system. Commissioners are more interested in the population that uses the service than the labels applied to them. Therefore, there is a need to recognise complex and multiple problems and develop services to meet those needs focus on outcome, not diagnosis. - There needs to be a consideration over how far the therapy is helping people to cope with what is happening to them, and how far it tries to address the causal factors for those things. For example, there needs to be greater recognition of social deprivation as a factor. - When measuring outcomes, there needs to be consideration given to what things the system already understands and using those levers available, while moving towards a more personalised approach as well. - Evaluations should be independent where possible, and include qualitative data collection. Personality Disorder Discussion Group The discussion opened with the observation that personality disorder is not classically conceptualised as a serious mental illness, although it shares a common feature of being enduring. It is qualitatively different from SMI in that it may be seen as a developmental disorder (with origins in T outcomes) difficult. To clarify and concentrate the discussion, the heterogeneous nature of personality disorder was highlighted, with any outcomes being closely related to accurate screening and diagnosis. It was suggested that we focus on Borderline Personality Disorder (BPD) as this generally has a wider outcomes-based literature. The consideration of all cluster B disorders was discussed, but it was felt that a clearer discussion would be achieved by taking a focus on BPD alone. T rable over simplistic. However, it as argued that a case could be made for conceptualising outcomes from both long-term (e.g. DBT) and short-term (e.g. focused work on reduction of anxiety) interventions. T It was argued that although long-term DBT intervention may be expensive, it should be offset against the reduction in cost made by not attending A&E nightly following self-harm. This led to a discussion regarding diagnosis - be made in making an accurate early diagnosis, thus avoiding expensive inappropriate treatment. This was agreed by all to be a key issue - de regarding fast recovery, but may well be made by diverting service users into appropriate services at an earlier stage. 16

T This moved the discussion away from diagnosis per se towards working with early presenting problems, and avoiding reinforcing difficult interactions in the early stages of treatment, creating more entrenched patterns of behaviour later on. This was illustrated with the example of young people in inpatient services who are monitored on constant observations who later struggle to selfmonitor as adults. Although it was acknowledged that it is important to match treatment to presenting behaviours, and to create therapeutic formulations that centre on traits rather than diagnoses, the group agreed that diagnoses become important when looking at outcomes. The central question became: what can IAPT deliver once a diagnosis of BPD is given. The outcomes as stated by NICE including: social functioning and wellbeing, behavioural changes (reduction in suicide, self-harming and aggressive behaviours), changes in symptoms (depression and anxiety), followed by a change in service use (inpatient admissions, A&E admissions). There was some debate over the concept of social functioning and wellbeing - how these can be reliably measured for service users. It was felt that there may be a disparity between the language of measurement, and the experience of the individual. It was felt that it needed to capture a sense of I A consensus was reached over the use of the EQ 5D - it was felt to represent a useful global measure of quality of life, that is relatively low burden and easy to complete. When discussing the six outcome factors, a consensus was reached regarding the inclusion of: Early screening and diagnosis. Quality of life can serve as a useful outcome measure. The importance of resilience, coping and management of emotional states. U -harming behaviours. It was agreed that it is useful to include a quantifiable measure to complement the more qualitative measure of emotional states. However, it was seen as important to include a wide range of self-harming behaviours, as often as one coping mechanism is reduced (for example cutting) another may increase in frequency in its place (such as binging and purging). Acknowledging a culture of outcome measures - recognising that a resistance to measurement can in services. Measuring outcomes can also be a useful tool for service users to help track progress and give a sense of autonomy over treatment and recovery. Payment by process - T recovery. Payment needs to be linked to positive outcomes rather than maintenance of illness. There is a strong need for non-cluster outcome based payments. Cluster membership is not an outcome - and could actually lead to an overall reduction in (for example) DBT programmes over 17

time. In order for payment to be meaningful it needs to be based on clinical outcome, allowing the opportunity to demonstrate that therapy can work. A final important point was raised - that there has traditionally been an over-focus on safety and risk (of suicide and homicide). A more useful approach would be to balance service user risk with wellbeing. These discussion points were collated and ordered by importance. The final six outcomes were as follows: 1. Inculcation of culture of outcome measures. 2. Payment linked to clinical outcome (as opposed to cluster-linked payment). 3. Using quality of life (via EQ-5D) as a key outcome. 4. Early screening for personality disorder to ensure appropriate treatment. 5. The need for a range of measures including behavioural change, but also incorporating userdefined measures. 6. Ensuring that there is a balance between risk-oriented outcomes versus wellbeing. CONCLUSION The outcomes from this day were presented to the New Savoy Partnership Conference on 24/25 th November in a condensed form and this is available on the New Savoy Partnership websites. (http://www.newsavoypartnership.org/2011conference.htm). The discussions will be informing the work of the SMI Project team at the Department of Health who will be developing proposals outlining how to take these developments forward in line with the ministerial commitment to increase access to psychological therapies for people with SMI. Anyone interested in further information about the IAPT SMI Project should contact: Linda Charles-Ozuzu (Linda.Charles-Ozuzu@dh.gsi.gov.uk) Alex Stirzaker Alison Brabban (Alex.Stirzaker@swdc.org.uk) (abrabban@btopenworld.com) 18