Seeking and Using Service User Input to Improve Clinical Services

Introduction

This article is based on a joint talk given at the Conference entitled Can Group Therapy Survive NICE: Examining the Evidence on Friday 29 January, 2010 by Cathy Boyd, an expert by experience and current service user, and Kevin Healy, lead clinician at the Cassel Hospital in Richmond, Surrey. We begin with Cathy sharing some of her experience of the treatment programme at the Cassel. Kevin then describes the tortuous journey that the Cassel Hospital, as an institution, has undertaken to truly take on board service user input in attempting to improve clinical services. We report on an audit of service user input into selected psychotherapy departments and highlight the range of possible inputs to be considered. We briefly explore some of the background issues to be addressed by psychotherapy colleagues attempting to truly listen to service users and end by highlighting the value of being able to use our patients as experts by experience.

Our aim in this article is to help readers appreciate that service users know a lot about what is helpful to them and even more about what is unhelpful to them in the clinical services delivered to them by psychotherapy professionals. We suggest that empowering patients is always in their interests, and also is very likely to be in the interests of developing effective clinical services. We share our view that transference is robust. It is most helpful as a clinical tool when understood and contrasted with other realities.

Cathy’s Story

I am very interested in being involved in anything which will ensure the ongoing provision of helpful services for those with borderline personality disorder. It was very difficult for me to get the help I myself needed. I had been hospitalized for the major part of six years before finally being diagnosed with borderline personality disorder. It then took a further five years to determine and find a suitable course of treatment for my difficulties. During this time I again had frequent hospital admissions, but I had the support of an excellent consultant psychiatrist who eventually sorted funding and a referral to the Cassel Hospital.

Although I am still in the Outreach Programme delivered from the Cassel, I have been living independently now for almost a year. The differences in my life are very noticeable. I am able to manage my finances and I have saved a small amount of money. I go to my group therapy most of the time. I have a small group of friends. I have a routine. I attend appointments with services and am able to let them know how I am in an appropriate way. I sometimes struggle, but with the support of group or of my team I will work through it and find a way to cope. My life is by no means without difficulties, but it is a way of life that is very different to what I had before when I was in and out of hospital regularly, and unable to manage living alone. The smallest of tasks is now a triumph to me. I am amazed that I have been able to make a home for myself. I never dreamed I could learn to live independently. Now I enjoy every minute.

Without the appropriate help I would have been unable to find a different way to live. I have found that my relationships with others are crucial to help me break cycles that I have felt stuck in for years. It is important for me to be able to say I am angry instead of having to act it out. It feels good to be able to express myself and to feel that I have the right to stand up for myself as a person. I have more confidence in myself and have learnt all of this in less than two years. If I had not been to the Cassel for help I would probably be in an acute ward still, or about to be discharged and shortly face a further admission. I could even be dead.

I spoke these words with feeling, and with a lot of anxiety, before an audience of almost 100 people at the conference. I hope my message gets across clearly also in what I write.

I was an inpatient for almost a year at the Cassel, and am currently receiving outreach treatment, which involves me attending a nursing group and two group psychotherapy sessions a week. In preparing to contribute to this paper I discussed the following points, put to me by Doctor Healy, with other past and present service users. This is what we agreed to say.

A Cautionary Tale from the Cassel Hospital

The Cassel Hospital was founded in 1919 by Sir Ernest Cassel. Sir Ernest was a merchant banker and capitalist and he set up the Cassel Hospital to treat the civilian equivalence of shell-shock soon after this first came to prominence in the horrors of the First World War. Sir Ernest had a good and prescient take on the world banking crisis that is now happening almost 100 years later. He is quoted as saying ‘When I was young people called me a gambler. As the scale of my operations increased I became known as a speculator. Now I am called a banker, but I have been doing the same thing all the time’ (Chancellor, 2000).

In 1946, after the ending of the Second World War, Dr Tom Main was appointed as Medical Director of the Cassel Hospital. He located a new site for the hospital on Ham Common near Richmond, Surrey. He contributed strongly to giving the Cassel an identity as a psychoanalytic hospital. Over the next 50 years the Cassel became a centre of applied psychoanalysis.

This development is well described in many of Tom Main’s own articles, brought together in The Ailment and Other Psychoanalytic Essays edited by his daughter Jennifer Johns (1989). Tom Main’s own article on the history of the Cassel Hospital was published as an historical document in Therapeutic Communities (2002).

One of the largely unquestioned practices that arose at the Cassel during this time concerned the impact of the ending of treatment on patients. When the second author, Kevin Healy, began working at the Cassel in 1986 (10 years after the retirement of Tom Main), it was then accepted by staff that endings were indeed difficult for patients. However, it was theorized that really facing this difficulty was important for our patients as it helped them ‘internalize their lost objects’ on discharge from the treatment programme. This contrasted with patients repeatedly being heard to say that such endings could be unmanageable for them. We, the senior clinicians at the Cassel Hospital, did not have any systematic ways of following up our patients at that time, but did know from occasional personal contacts and from their attendance at our annual garden party that some patients indeed did very well following treatment at the Cassel. We continued with our practice of ensuring complete cut off from treatment options at the Cassel for patients leaving the Cassel and continued to thus allow them to find their own way in life.

The Impact of Research on Practice

The Cassel Senior Management Team however was not wholly confident in the benefits of our long trusted inpatient treatment programme. The Cassel Personality Disorder Outcome Study was established in 1991 under the leadership of Dr Marco Chiesa who was appointed to the Cassel to head up an innovative new integrated inpatient and outreach programme of treatment and to evaluate this alongside our more usual and trusted treatment programme (Chiesa et al., 2004).

All adult patients admitted to services at the Cassel from January 1993 to December 1999 were studied and followed up for a further six years after their discharge from treatment. Three groups of patients were compared. The first group comprised those receiving the standard Cassel one stage, one year programme of treatment, with no organized follow up. A second group comprised those attending an integrated step-down programme involving a shorter six months inpatient stay at the Cassel, followed by a further year of twice weekly group psychotherapy, supported by psychosocial nursing practice in their local communities. A third group received treatment as usual and were selected from comparable patients attending an out-patient Psychotherapy Department in North Devon. The instruments used to evaluate outcomes were the General Symptom Inventory (GSI), the Global Assessment Scale (GAS) and the Social Adjustment Scale (SAS). In a separate but linked study, yet to be fully reported, we used the Adult Attachment Interview (AAI) pre and post treatment to measure the impact of treatment across the three defined patient groups. Results showed that the integrated step-down programme was better than the traditional one stage Cassel treatment programme, and that both were better than treatment as usual (Chiesa et al., 2006).

The preliminary findings were not well received within the Cassel. Chiesa and Healy (2009) describe with some passion the struggle to establish a research culture in the psychotherapy hospital. Most of the staff reacted with shock and incredulity to the findings of the research. This was followed by criticisms of the research design and the research methodology. There was a generally expressed opinion that the research design and the instruments used were faulty. The instruments were thought not to be sufficiently sensitive to detect the subtler and more profound personality changes resulting from the longer inpatient exposure to twice weekly individual psychoanalytic psychotherapy, combined with psychosocial nursing and a living—learning experience within the hospital therapeutic community. It was unthinkable that patients who had less of our ‘valued’ inpatient treatment seemed to do better on a number of key clinical dimensions.

Gradually the Cassel Senior Management Team began to consider the increasing body of evidence presented in results from the Cassel Personality Disorder Study, from systematic collection and analysis of patient experiences of treatment (Chiesa et al., 2003), and from the study of treatment drop out (Chiesa et al., 2000). This was further complemented by the evidence accrued from ongoing clinical audits that had become a significant element of the hospital clinical practice. Three main themes emerged from both the internal debate and a consultation process that involved a number of senior psychiatrists from other institutions. Firstly the rigidity and inflexibility of our treatment programmes in relation to the transitions of patients into treatment and out of treatment were found to be central factors adversely influencing outcomes for patients. We henceforth sought to deliver all treatment programmes at the Cassel more flexibly. Secondly, we needed to learn more about proactive management of risk and suicide. We undertook an audit of all suicides associated with admission to the Cassel over the previous 15 years. The lessons learned about effective management of clinical risk from this audit were discussed widely within the Cassel and continue to actively influence our delivery of treatment programmes. Thirdly, as underscored by the absence of service user representation in the consultation process and internal debate, we needed to improve our capacity for listening to our patients as experts by experience, by involving them to greater effect in decision making processes within the institution.

It is now embarrassing to me as lead clinician of the Cassel to recognize what was involved in the gathering of the information that was central to the research findings. The General Symptom Inventory, the Global Assessment Scale and the Social Adjustment Scale are no more than formalized and systematic ways of gathering patients’ views. This formalized and systematic gathering of patients’ views informed us, amongst other things, that an abrupt ending of treatment was not manageable for many patients. As a result of these ‘formal research findings’ we proceeded to seek to change our clinical practice. What is embarrassing to me is that we failed to listen to and learn from our patients in a less formal, more ordinary, and more direct and ongoing way.

The Views of Service User’s are Often Sought as an Afterthought

The impressive policy implementation guidance Personality Disorder: No Longer a Diagnosis of Exclusion was no exception in respect to seeking the views of experts by experience as an afterthought. Two separate professional working groups looking at personality disorder issues in forensic and in non-forensic settings were established long before it crossed anybody’s mind that the voices of service users needed to be heard also in this review. Indeed the document that was then produced helpfully came to be centred largely on the views of service users (DH, 2003). Service users were henceforth central in the development and implementation of the guidelines. The involvement of service users inspired innovative learning and practice.

Service users were encouraged to become actively involved in the development and delivery of the National Personality Programme lead from the department of health by Nick Benefield and Rex Haigh among others. Experts by experience were full partners in the body that selected the 12 pilot sites across the country selected and commissioned to set up and deliver innovative community services for those suffering the impact of personality disorders on their lives. These 12 pilot services were often most innovative in their use of service users as partners in the pilot project, and as partners in each other’s treatment. All 12 community pilot sites were evaluated by partnerships of professionals and experts by experience trained as researchers and evaluators. All pilot sites are now commissioned as part of main stream commissioning of personality disorder services.

The National Personality Programme is now rolling out a multilevel training known as the ‘Knowledge and Understanding Framework’ (KUF) for those working with, and professionally in contact with, individuals with personality disorder. The Awareness Training modules are delivered by two trainers, one a trained professional and the other a trained expert by experience. The training is designed and experienced to be best delivered through such a partnership. In the case of the development services for those suffering from the impact of personality disorders many innovative creative initiatives and services are seen to have developed from what started as ‘just an afterthought’. Perhaps it is now time for each of us to have our own afterthoughts.

Can we question our own practices?

In our own psychotherapy departments it is instructive to consider whether or not service users are seen as partners in their own therapy, as partners in evaluating service delivery processes and outcomes, as partners in service planning and service delivery, as partners in staff selection and appraisal, and as partners in giving regular sought after feed-back to therapists, consultants and service managers.

A recent audit of the psychotherapy departments, where members of the Psychotherapy Faculty Executive of the Royal College of Psychiatrists work, was undertaken by Kevin Healy to measure the dimensions of involvement as outlined above. The level of involvement of service users was scored from one to five, based on a format originally devised by Frank Margison in Manchester and published in the document Managing and Delivering Psychological Therapy Services (DH, 2003). Level one represents services where service users are not involved, other than as recipients of treatment which has been arranged for them. Level two represents services where service users have involvement in choices about their own treatment within parameters set by the professionals. Level three represents services where service users are involved collaboratively in choices about services and are also represented to some extent in advising the service about future directions. Level four represents services where service users are involved as at level three, but also are also involved in a transparent way in the overall management of the service. Level five represents services where service users are involved at every level of the service, and influence a broad range of issues such as training priorities, treatment choices, improving access and monitoring the performance of the service.

The results from this audit showed that no services rated themselves as functioning at level one. 30% of services in both forensic and general psychotherapy outpatient settings scored themselves at level two. 50% of services, all in general community outpatient settings, scored themselves at level three. 10% of services scored themselves at level four. Such services mostly embodied therapeutic community principals. 10% of services scored themselves at level five and were mostly associated with the Improving Access to Psychological Therapies (IAPT) programme.

Can we begin to understand what influences our practice?

Haigh and Healy (2009) have posed a number of questions and suggested some tentative answers in developing the strategy document on service user involvement in the work of the Psychotherapy Faculty Executive of the Royal College of Psychiatrists. They suggest that patients who are assessed and treated using differing therapeutic modalities have differing experiences of the work of assessment and treatment. Therapists using behavioural methods have long seen the therapeutic alliance as a partnership between patient and therapist. Likewise those therapists using a cognitive behavioural mode of assessment and treatment see the work as a partnership where a patient is usually encouraged to be maximally involved in deciding their own treatment goals and how they might attain them. Cognitive Analytic Therapy and Dialect Behaviour Therapy have actively built on this way of working in partnership. Family and systemic therapists have a range of approaches to service users as partners, depending on the particular style adopted by the therapists. Psychoanalytic psychotherapists have traditionally had a more paternalistic style of therapeutic working. By focusing on some unconscious issues underlying the life difficulties of the patient, and by being seen as the expert in elucidating these issues, the therapist may be viewed by both therapist and patient as more than an equal partner in any therapeutic alliance.

In addition they suggest that just as therapists of differing modalities can be consistently good, bad, or indifferent in terms of therapeutic outcomes depending on their personal characteristics, so too therapists of whatever modality may have a capacity to consistently develop a sense of partnership working to a greater or lesser extent with patients and carers. The further hypothesis they present is that psychoanalytic psychotherapists find the concept of partnership working with patients to be consistently more difficult than therapists of other modalities. They surmise that patient and carer involvement in the running of Psychotherapy Departments may be consistently less evident in services adopting largely psychoanalytic principles.

They also surmise that psychoanalytic psychotherapists may be more likely than therapists from other modalities to judge their patients to be too destructive in their current functioning to be able to participate constructively in service planning, delivery, or evaluation. This may be a valid judgement based on the strengths of the patient balanced against his/her difficulties, weaknesses and challenges. Some patients may be assessed as likely to deteriorate in their mental and social functioning if asked to be involved with service planning, delivery, or evaluation. Again this may be a balanced and correct view. However the likelihood of benefit to the patient by such involvement is large and is more likely to occur if helpful, thoughtful systems are in place to support patients and carers in such new roles.

Psychoanalytic psychotherapists may be particularly concerned about the effect on a patient of involvement in service planning, delivery, or evaluation alongside his/her therapist or even his/her consultant medical psychotherapist. There are often concerns expressed about clouding the transference and the countertransference in a way that makes it more difficult to work with and interpret therapeutically. This is usually perceived by a therapist as largely representing his concern for the patient and for the patient’s treatment. However this can often serve to hide concerns of the therapist about the impacts on her/his own way of working. Doing something that is different is probably uncomfortable for all of us. It certainly requires an adjustment by the therapist to her/his usual practice. In the clinical experience of Haigh and Healy transference is seen to be very robust and continues to be obvious in interactions with patients. It remains evident in a way that continues to invite work to understand it if that is the preferred therapeutic strategy of the therapist.

Patients may be judged as gaining some unhealthy gratification through engaging in helping plan, deliver or evaluate a service. While this may well be so for all of us, whether patient or therapist, we suggest the best yardstick to use in such cases is the contribution that such involvement makes to the patient’s well being, and the contribution the patient makes to the service as a whole through his/her involvement in this way.

Of course, Haigh and Healy believe it is best for all concerned that the therapeutic relationship of patient and therapist is not unnecessarily impinged upon by the involvement of a patient or of an ex-patient in the work of designing, developing, delivering and evaluating the psychological therapies delivered by a psychotherapy department. It is important for those leading such departments to put systems and processes in place within the department to listen to and to heed the views of service users and to seek to involve them in the working of the department in a way that ensures the therapeutic relationship remains protected as far as possible.

Conclusion

We have presented our thoughts in a way that starts with the voice of a particular service user who had consulted with peers to answer a number of important questions about the group psychotherapy service she experienced. We have shown the difficulties experienced in one institution, the Cassel Hospital, in really taking the voices and views of service users on board when designing, developing, delivering and evaluating clinical, training and research services. We noted the consideration of service user views often as an afterthought. Despite this afterthought quality their views and involvement can become hugely important in planning, developing, delivering and evaluating specific services.

We end by challenging each of you to explore how effectively you use the involvement of service users within the psychotherapy services you are responsible for providing. Service users can often see the obvious in situations where professionals can only see what they expect to see. We suggest that it is always in the interests of patients and therapists to be aware of the obvious in life.