Abuse: an all too common experience

By Deborah Lyttelton, Community Living, Vol. 17, No. 2 (2003)

Deborah Lyttelton describes the work of Respond in helping people who have experienced the trauma of sexual abuse.

At Respond we believe that the experience of sexual and other abuse may be all too common for people with learning difficulties. More than 1,400 cases of sexual abuse against people with learning difficulties are reported each year. These are only the reported cases and may people may be too frightened or too unsupported to report what happens to them.

Respond was established in 1989 by two people who were teaching advocacy skills, as they became aware of how common disclosure of abuse from their students was and how there was nowhere for them to go for support. They got a grant from the Department of Health to start offering individual therapy to victims of sexual abuse with learning difficulties, and after a few years this widened to include perpetrators with learning difficulties and also work with other kinds of trauma.

Therapy at Respond

Since Respond was founded, hundreds of people with learning difficulties have come to our offices for long-term psychodynamic therapy. On average we see 35 men and women each week.

Consequently, we now know more than we did ten years ago about the incidence of sexual abuse of people with learning difficulties. We also know more about the effects of sexual abuse upon people with learning difficulties, and how these effects, if left untreated, can place people in positions of life-long victimhood, subject to the pressures of self-harm, eating disorders, depression, the harming of others and, in more extreme cases suicide.

Traditionally, psychotherapy has not been available to people with learning difficulties. Cognitive ability has been conflated with psychological ability, and therefore mainstream psychotherapy organisations have tended to neglect the needs of people with learning difficulties and organisations that work with them have not considered psychotherapy as an option.

The recent publication of Government guidelines on vulnerable adult protection, No Secrets (2000), has provided a valuable template for service providers on how to respond to the abuse of people with learning difficulties.

Victims' needs ignored

However, the guidelines largely cover issues such as the investigative process, the criminal justice system and multi-agency involvement and the therapeutic needs of victims of abuse are largely ignored.
Respond's experience is that psychotherapy with people with learning difficulties really can make a difference. We work with people on average for about a year and 18 months, although some people have come for therapy for as long as 5 years. People who come for therapy at Respond have often experienced such trauma that they have developed severe 'behavioural problems' that have often been attributed to their learning difficulty rather than their experience of abuse. Respond has come to see how symptoms such as self-harm, harming others, eating disorders and depression are a way of expressing the trauma of abuse for people with learning difficulties just as they are for people without learning difficulties.

There will be an initial meeting which may involve the service provider and family members but all subsequent sessions are one-to-one. Although this may sometimes mean that where, for example, a client has speech difficulties more time will be needed for the client to simply tell their story. Respond's philosophy is that this is an important par of the therapeutic process and allows the person with learning difficulties to tell their story in their own words (or sometimes their own pictures)

Respond's Helpline

The helpline was opened in 1999 in response to the flood of calls received from distressed people with learning difficulties, their parents, carers and other professionals who wanted support and to talk at length about their experiences. Since that time the Helpline has expanded (thanks in part to a three-year Community Fund grant) so that now we are open Monday to Friday from 1.30pm to 5.00pm.

Calls from people with learning difficulties to Respond's
Helpline have more than doubled in the last two years

In the last two years the helpline has had a freephone number to make it as accessible as possible to people with learning difficulties. Between 2001 and 2002 our calls increased by 25% to nearly 1400 and the number of calls from people with learning difficulties more than doubled to over 300 which represents 20% of our calls. The figures for the first half of 2003 show that the proportion of callers with learning difficulties has increased to over 30%. These increases are also as a result of the outreach work that we have done - visiting day centres, club nights for people with learning difficulties, speaking at conferences, etc.

Unfortunately, long-term therapy at Respond, or with an independent therapist or counsellor is expensive and so for most people self-funding is not an option. The helpline provides a valuable resource for people who are unable to get funding from social services to pay for therapy. We work with some of our callers for up to 6 months, providing a regular weekly time for them to have counselling on the phone.

In addition to supporting people with learning difficulties, we also talk to a lot of family members, particularly parents. We can provide support for families when a family member with learning difficulties talks about having been abused and also give advice on how to get more support and how to go about getting funding for therapy. We also provide similar support and information to carers and keyworkers who are often the first person that a person with learning difficulties may disclose abuse to.

To make the helpline as accessible as possible, we are advised and supported by Respond's Action Group composed of 5 people with learning difficulties who give us feedback on our use of language, images and anything to do with publicity for the helpline and website. Members of the Action Group also designed our webpages on abuse and are involved in our outreach program.

Helpline Resources

Information is an important part of what the helpline provides. We have tried to develop a specialised resource relevant to people with learning difficulties and abuse, which includes:

" A databse of counsellors and therapists around the country who have experience of working with people with learning difficulties

" Information sheets on issues such as sex education resources and adult protection sites on the internet

" All the relevant legislation and government guidance

" Specialised voluntary and statutory provision

Although our intention is to keep the most relevant information, we are constantly working to expand and improve the information we have available. We hope also, depending on funding, to make most of this information available on our website.

Working with other agencies

Both the therapy that Respond provides and the work on the helpline are done in the context of working with other agencies. This is seen as an essential part of our work. Most clients coming to Respond rely on someone to accompany them on their journey and our experience is that, unless relationships with those supporting our clients in the outside world are nurtured carefully, the work can easily find itself under attack. Appointments are missed and punctuality suffers, often because of an ambivalence felt not by the client but by the client's support network.
Similarly helpline clients often call at the suggestion of their keyworker, community psychiatric nurse of career and may need their support to continue their contact with us. Disclosure of abuse may take place over a number of calls and it is important that any practical needs such as remembering an agreed time to call, can be supported during that time.

However, we try to ensure that contact with support networks are kept as separate as possible from the therapeutic work. As a rule, a different member of Respond's staff to the therapist / counsellor will maintain contact with the people surrounding the client.

We hope that through our collaborative work with other agencies the idea of therapy and counselling being made available to people with learning difficulties will become more prevalent in both the psychotherapy and learning difficulties arena.

Acknowledgment

The psychotherapeutic needs of people with learning difficulties who have been sexually abuse, Alan Corbett, The Journal of Adult Protection, Vol 5, Issue 3 September 2003

Reference

No Secrets: Guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse, Department of Health, 2000

Respond