Samantha was a 29 year old woman with cerebral palsy who was in the sole care of her mother. It is thought that she died as a result of being unable to care for herself or to call for help when her mother died suddenly. This was in 2010. There had been concerns since 1998 after Mrs Wolf, Samantha’s mother, was admitted to hospital with mental health problems, after which support from GPs and social services was increasingly denied. Mrs Wolf, apparently, was afraid that Samantha would be taken away from her. (St Albans Review inquest report)
I can understand this. I work in an integrated health and social services team and I see this kind of situation from both sides. Parents desperate to hold onto care even when they know they are not able to deliver; services ham strung by legislation that, as adult protection, is less robust than its child protection predecessor. One parent once told me that she could not bear to think of her intellectually disabled (adult) child having to survive without her because ‘no one loves her like I do’. Not the first time I worried about a sequence of murder and suicide. Colleagues, on the other hand, have turned themselves upside down and inside out to help families who were not coping, but in the end, were rendered impotent by legislation that seemed to put family wishes ahead of the person with the disability. This has often been complicated by the difficulty in getting a clear view of the service user’s needs as an independent opinion, so often are they trapped within a co-dependent relationship with their care givers.
In 2005, the new Mental Capacity Act came into effect. This meant that everyone should be ‘presumed to have capacity’ unless there is good reason to believe otherwise. It also says that capacity is decision specific’ and not linked to cognitive ability, diagnosis, or condition. In other words, it is no longer possible to assume that someone lacks capacity to decide for themselves because they have a learning disability, you have to ask them or you have to demonstrate that they lack capacity IN THIS INSTANCE and in this instance ONLY.
What I am wondering with this case is, who asked Samantha what she wanted in terms of her care? Was she seen independently? Did she have an advocate? Was anyone speaking for her so that there was a clear mandate for medical and social services to leave her in her mother’s sole care? And critically, did anyone know how to interview her in such a way as to avoid leading her responses or relying on acquiescence?
Wherever possible, vulnerable adults should be accorded advocacy and expert assessment using a modified cognitive interview (see Clinical Psychology Forum 2006) to ascertain their views without risk of interviewer contamination of those views. I have seen no evidence that this kind of approach was offered to Samantha Backler, and while there is no guarantee that this would have saved her life, there would at least have been documented evidence of a clear mandate from her to be left alone, in full appreciation of the risks. Either that or she would have been the subject of a ‘best interests’ multi disciplinary meeting which would then have taken the appropriate decision on her behalf in accordance with the evidence.
Sometimes it seems we are a little too ready to accede to family wishes and to fail to hear our service user’s voice. Samantha may have been a tragic victim of everyone’s genuine wish to do no harm. We have to learn how to discriminate between what is wanted and what is right, and to stand up strongly for the latter even when the former is screaming correctness and blinding us with loving best intentions.