From the Cradle to the Grave

Birmingham, October 7th 1999

The original idea for Respond came from two practitioners in the field of learning disability who, through the running of short term advocacy and empowerment groups for people with learning disabilities, had begun to hear more and more disclosures of abuse - institutionalised, physical, emotional, financial and sexual.

At that time there did not exist an organisation to which such victims of abuse could be referred. There were and still are individual practitioners such as Valerie Sinason whose work was rooted in an ability to work with those who existed outside or just on the edge of the world of psychotherapy - people for whom a talking cure was often deemed to be an inappropriate intervention.

Research from the University of Kent in 1993 highlighted the fact that, each year, there will be one thousand new cases of sexual abuse perpetrated against people with learning disabilities. A horrifying statistic which may represent the tip of an iceberg, the discussion about issues such as sexual abuse, sexuality and sexual rights of people with learning disabilities being something that can rarely happen.

What became clearer was the need for an organisation to help deal with the scale of the problem. The core of our work is individual and group therapy for people with learning disabilities who are victims and/or perpetrators of sexual abuse. We see around thirty clients per week for individual therapy, and run three treatment groups - a men's, women's and adolescent's. We also provide risk and investigative assessments on clients who are alleged to have suffered or perpetrated abuse, in addition to training and supervising professionals on issues of sexual abuse and learning disability. The research I will be speaking about focused on group and individual psychotherapy.

NEED FOR RESEARCH

Since we began, we have been mindful of the absence of research into the usefulness of psychotherapy for people with learning disabilities. Research into psychotherapy with people without learning disabilities has been, if not as scant as research into learning disability work, still a fairly neglected field. In the 1970s the US government stated that they would only support the use of health interventions which had been proved to be effective.

A number of research programmes were thus instigated, which indicated the beneficial effects of psychotherapy. One of these studies (Sloane et al, 1975 ) considered a population from a psychiatric ward and concluded that those individuals who receive therapy are likely to gain more from the therapy than from a spontaneous recovery.

Subsequent studies have confirmed consistently that receiving therapy is more helpful than not receiving therapy. Our reasons for wanting to conduct research into our work were manifold. Our team obviously holds a belief in the usefulness of what we provide, and our system of clinical supervision of all our cases by an external clinician (in our case, Valerie Sinason) has helped afford us with a sense of our work being objectively assessed on a weekly basis.

There is a need, however, for the outside world to be given evidence on which to base decisions about whether psychotherapy will or will not be useful. Included in this outside world are people with learning disabilities themselves.

PEOPLE WITH LEARNING DISABILITIES' UNDERSTANDING OF PSYCHOTHERAPY

When assessing whether a potential patient may be able to make use of psychotherapy, a mainstream assessment would seek to explore whether or not a client is consenting for therapy, which in itself requires them to hold a concept of what psychotherapy is, how it is practised, and how it may help. This is difficult enough in mainstream provision - doubly so with people with learning disabilities.

One of the first questions we ask is why people think they are here. The answers can be varied: some state they're here for travel training, to get a job, to learn about money. A high proportion are able to say they are here because of things that have happened to them, or that they have done to others. There are patients for whom proper discussions about what therapy is, and what Respond does, do not appear to have taken place as they should.

The life experience of people with learning disabilities has often resulted in a propensity to over-compliance. When someone's internal functioning dictates that their care, happiness and security hinge on their pleasing and being approved of by others, therapy can merge into a mass of other things which have to be passively agreed to. This is why, especially in cases where the patient does not have many words, or whose receptive skills are particularly low, one assessment session may not be enough to fully know whether or not they are consenting in an informed way to attending therapy.

The ethics of recommending long term psychotherapy for a patient about whom one feels profound confusion need to be carefully thought about. It is on this issue, along with others, that psychotherapy with patients with learning disabilities diverts slightly from the frame surrounding psychotherapy with patients without learning disabilities. In addition to meeting with the patient him or herself, the therapist will also meet with a group of professionals to discuss the case. Family history will be explored, along with any previous psychology or psychiatric assessments. Ways of talking with the patient will be exchanged, to ensure that we are armed with additional tools if words are not the primary method of communicating.

It is highly unlikely this would happen in work with people without learning disabilities, and we need to be carefully in considering why we have adapted this way of working.

PSYCHOTHERAPY AS PART OF A MULTI-AGENCY APPROACH

Our belief is that psychotherapy is a powerful agent of change, a process which can help provide a patient with insight into their history, into what has been done to them and what they may have done to others.

THE QUESTIONNAIRE

Response In total there were 109 questionnaires sent, and 53 returned - a response rate of 49%. This relatively high rate of return was mainly due to the fact that the questionnaire was short and simple to fill out and used scales rather than narrative responses. The first section looked at demographics and mental health issues.

AGE OF CLIENTS

If conducted now, we would see figures in the 56 to 65 box, but still none in the 66 or older category. There is age discrimination at work here - our sense is that there is ambivalence about giving older people a space to talk about their lives. While there may be additional defences against behavioural change in an older age group, we should not be dismissing psychotherapy so easily, as it can provide clients with a space to reflect on their history, and mourn previously unprocessed losses. The older clients we have now include clients who have spent a large proportion of their life in psychiatric hospitals, in which abuses have been perpetrated.

Psychotherapy for them is not just a space to explore the effect of these abuses, but, often more importantly, to consider the effects of living in such a setting, with its attendant culture of anonymity.

GENDER

That these numbers are slightly skewed towards treating males may reflect the high numbers of clients referred to Respond because they are offenders. The majority of these are male.

ETHNIC ORIGIN

There is still work to be done to address some of the specific issues raised by looking at the ethnic mix of our client group. With this in mind, we now have an Equal Access project exploring the issues involved in cross cultural work involving people with learning disabilities who have been sexually abused.

FORM FILLED WITH CLIENT

This indicates that the questionnaire is not giving us a clear picture of how our services are perceived by our clients - a question which needs to be addressed in a separate piece of work.

DOES CLIENT HAVE LD DOES CLIENT HAVE MH PROBLEMS PROBLEM UPON REFERRAL SERVICES PROVIDED

No real comments

IF YOU HAVE ANOTHER OPTION

The uncertainty of where to refer is perhaps an indication of a lack of clarity as to what services exist for people with learning disabilities who are victims and/or perpetrators of sexual abuse.

DURATION OF THERAPY REASON FOR ENDING

I suspect that the answers to these questions are skewed by the fact that those referrers who ended the work because of funding problems may not have been as inclined to return their questionnaire. From where I sit, there does seem to be a higher proportion of clients whose therapy is ended not because of compelling clinical reasons, but because money is no longer available. The argument for long term psychotherapy needs to be re-iterated. One of the most vulnerable times for therapy is when, clinically, things are going well, but behaviourally they seem not to be.

Guilt, anger, depression may have been repressed or defended against for years until the client feels safe enough in therapy to access these emotions. Once accessed, they may act as a trigger to volatile behaviours - including physical aggression. This has led to the putting in place of liaison meetings with referrers on at least a twelve monthly basis where we can talk about whether clients are becoming more violent, depressed or withdrawn. We are very clear that these sessions will not erode the confidentiality boundary around the clinical work itself, but are an important adjunct to psychotherapy.

Our feelings is increasingly that psychotherapy with people with ld who are victims and/or perpetrators of sexual abuse cannot exist in a vacuum. We need to have clear lines of communication between providers and purchasers, information needs to be made available, particularly in forensic cases, and psychotherapy should be seen as part of a package of care and treatment.

EMOTIONAL STATE AT OUTSET EMOTIONAL STATE NOW

These indicate longitudinal change. The fact that 62% of the clients were identified as being in the range of poor to very poor in terms of emotional state at the outset of therapy and that after treatment only 19% were in this range indicates that the psychotherapy services provided by Respond are emotional states for a significant percentage of our clients,. Of especially encouragement is the fact that 23% assessed as having a very poor emotional state at outset of therapy becomes 0%.

Although they may move from very poor to poor, this itself is an encouraging indicator of the ability of people with ld to use a process often mis-identified as an intellectual one. This misnomer ignores the fact that psychotherapy should be thoughts of more as an emotional process able to be used by people regardless of cognitive ability. Clearly the more severe the learning disability the more careful we need to be about our we communicate with clients, the rhythm of the sessions and the simplicity of our speech.

CLIENT's ABILITY TO MANAGE BEHAVIOUR PRIOR CLIENT'S ABILITY TO MANAGE BEHAVIOUR NOW

This question was designed by our researcher primarily with sex offenders in mind because, ultimately, the most important measure of the effectiveness of sex offender treatment is recidivism. One of our next tasks is to analyse these findings more closely to distinguish the specific effectiveness of our work with offenders. The fact that 60% of our clients began therapy in the range between "very poor" and "poor" in terms of their ability to manage their behaviour compared with only 19% in this range again points to a high ability in our client group to make use of therapeutic treatment.

HOW EFFECTIVE ARE THERAPISTS EFFECTS OF RESPOND SERVICES HOW SATISFIED

The closing questions referred to the general. service provided by Respond, and the finding must be that the effectiveness of psychotherapy is being supported by a general sense of satisfaction in the overall work of the organisation. The research has many implications - mostly in terms of questions it raises about what else needs to be researched. This is outcomes based research, and equally interesting would be an examination of what goes on inside the consulting room, the therapeutic process itself. Respond chooses not to work in overtly behavioural ways, but instead works within a psychoanalytic frame.

By working with the unconscious, and exploring the relationship between therapist and client and what this tells us about earlier relationships, we are finding that clients are able to explore what Professor Sheila Hollins refers to as the "3 secrets" in working with people with learning disabilities - the three central conflicts which one would hope to explore as a psychotherapist:

1. Disability For so many of our clients the original trauma of their birth is something that lies unspoken and taboo. To be the unhoped for child, the infant who is not the desired "healthy child" carries with it a sense of otherness and difference that can lie embedded in the unconscious, affecting contemporary relationships and providing the unconscious trigger for a range of difficulties. Psychotherapy can provide a space in which what it is like to feel different from others can be explored, where the weight of carrying others sense of failure, disappointment and unprocessed mourning can be shared.

2. Sexuality This relates not just to the taboo territory that the sexuality of people with learning disabilities represents, it also alludes to the unconscious fantasies that may affect perceptions of sex. If a parental sexual union has resulted in something different, outside of the norm, sex itself may be linked, unconsciously, with fear, guilt or hatred. Some of our clients communicate cognitive distortions about sex, but also talk about a deeper sense of sex being linked with a host of terrifying fantasies which can be part of a shutdown of sexual identity, or an acting out of dangerous sexual thoughts.

3. Mortality Societal views of disability are often emeshed with death, desires to gets rid of the disabled child for fear of contamination. Existential issues of life and death often permeate our work with clients in ways which have often been previously denied to them. The meaning of being born, living and dying form part of the narrative of therapy.

It is often in group therapy that these conflicts can be most vividly explored and worked with. There is a different aspect to therapy when it is practised within a group, that can often facilitate significant leaps in insight, and can help mitigate against what can be a prevailing sense of the client as isolated, alone and alien. The act of listening to another client talk about their childhood, talk about being abused or talk about abusing others can create more of a sense of a protective skin for groups who have previously lacked it.

In looking more deeply at those cases where psychotherapy appears to have facilitated a positive change in behavioural acting out and where previously frozen reactions to trauma have been processed, a key finding is that more therapeutic success is possible the more clearly defined relationship between Respond and the referring body. We have moved from a position of not know much about our clients and not talking to their teams much about them, to the current position of maintaining a boundaried dialogue with the teams as far as possible.

The boundaries remain essential, as to break confidentiality in cases involving broken secrets, or secrets being used as part of the fabric of abuse, can result in a sharp rise in anxiety on the part of the client. Adapting the analytic frame has also been important int terms of the dynamics at play within a team that works so much with abuse and abusing. To illustrate this, I'd like to talk about a man who I'll call Danny was referred to Respond around five years ago following being sexually abused by his mother. Danny had mild learning disabilities, and it is thought they are trauma induced rather than a congenital cognitive deficit.

Danny is a charismatic and powerful patient who quickly established a strong attachment to his therapist. There was a period of intense idealisation of the therapist, with eroticised overtones, and attempts at seduction which were gently but powerfully explored in the work. The work then entered a more fragmented stage in which Danny began to remember much more about what his mother had done to him. This coincided with a denigration of his therapist, and a long period of intense resistance to any therapeutic interventions.

All interpretations were discarded as being worthless, and sessions were missed. Danny then began to telephone Respond saying that he was feeling suicidal. The receptionist of the time struggled with these threats, and found herself being drawn into long telephone calls from Danny in which he would say he had taken an overdose. Different strategies were attempted, Danny's social worker and GP were consulted, but very little seemed to reach Danny, until he himself trailed off the calls. A place was found for Danny in a Respond group, as it was felt that he needed additional input. What developed from this were attempts to split the two therapists - individual and group - by making statements in the group about his mother, for example, being back in his life, and acting in very sexual ways towards him, and pleading with the group therapist not to tell his individual therapist that this was happening. A similar barrage of disclosures and entreaties to keep them secret from his group therapist was occurring in his individual work. Other members of the team found themselves being drawn into this un-boundaried process. Danny would come into my office following a session with his therapist. I would try to say that if he had things to say perhaps it was best they were said to one of his therapists, but Danny was very adept at speaking over any such statements, and began to complain about either his group or individual therapist, or the journey to Respond, or the college courses he was missing by attending.

Danny began to absorb more and more of our time. We found ourselves talking about him in supervision when we should have been talking about other cases. We found ourselves grappling with differing feelings about how to work with Danny. Some felt it was right that Danny was using every part of Respond, while others felt something extremely dangerous was being played out - an acting out of the extreme disturbance at the heart of Danny, itself an acting out of the internalised chaos wrought from being abused by the most central person in his life. The organisation, we came to realise, was itself acting out - unsure of how and when to talk about him, seemingly fearful of drawing up new boundaries around him. Eventually that is what happened - that Danny was made very aware of the fact that information about patients using more than one part of Respond is shared between therapists, and that this can be something helpful - again, a model of health communication between parental figures. Most of the useful discussion about Danny seemed to occur in our team dynamics sessions, where we found ourselves voicing extreme reactions to his place in the organisation, and the power he exercised over us all, in different ways.

I think that one thing that made this re-drawing of the frame around Danny was the organisational re-definition of itself. In moving from victim only to perpetrator as well we gave ourselves permission to think much more about the parts of our patients - victim and perpetrator alike - that had the power of destruction, that sought to re-enact their experiences of near death and psychic destruction in ways which could kill or destroy others. The forensic lens began essential for our view of all of our patients.