Could Olu’s story reveal the learning disability equivalent of racism in our services? asks Sarah Reilly
Olu, 47 years old, black, powerfully built and over 6 feet, is non-verbal, has a profound learning disability and is on the autistic spectrum. He came to England when he was very young becoming, by his 10th birthday, a ward of the London Borough of Islington when his parents returned to Nigeria.
Olu has lived in residential care outside London for approximately 20 years. His home consists of several bleak buildings surrounded by beautiful scenery, miles from a town or village. The unit has a multi-disciplinary clinical team, including a consultant psychiatrist, clinical psychologist, clinical nurse specialist, occupational therapist, and support team; all care, residential, social and medical, is supplied ‘in-house’ by the provider.
Olu was referred to The Elfrida Society by a social worker who was concerned about him being so far away and about the quality of his care. As Coordinator of the Circles of Protection (CoP) Project it was my role to visit and assess Olu to see if he was suitable for a befriender.
Docile and sleepy
In December 2014 I visited Olu and found him docile and sleepy with an open sore on his head that he kept picking. Afterwards I met the home manager and health liaison nurse but despite the coffee and sandwiches provided I did not feel welcome. Issues I raised were met with sugary reassurance. I was told that Olu did not need a communication passport as the staff knew what he needed; his bedroom was locked for his own benefit and he could indicate to staff when he wanted private space; he does not go out more than once a week as, due to his ‘behaviours’, he requires several staff to keep him safe.
Olu’s medication, I was informed, is regularly reviewed by the ‘in-house’ medical team and needs no changes. I left the meeting my mind boggled by pharmacological terminology. I managed to get the manager’s agreement that Olu’s bedroom would no longer be locked and he would be referred to the speech and language team for an assessment of his communication needs – but I was not reassured.
The isolation of this service and lack of independent involvement really worried me. Winterbourne View demonstrated that these are the exact conditions that can enable poor care and abuse to go undetected.
I referred Olu to a local independent advocacy service that could visit regularly and feedback to me and Islington Social Services. The OT produced ‘objects of reference’ suitable for Olu. The advocate told me that when they were presented to him Olu was only interested in the foam car keys – he pushed them into the OT’s hand and tried to pull her to the outside door. For me his communication was absolutely clear: ‘I want to go out’.
Over the years Olu had been prescribed a cocktail of psycho-tropic medications: anti-psychotics, a mood stabiliser, a sedative and anti-convulsing medication, taken at near or over the maximum recommended dose. With help from the Islington Learning Disability Team pharmacist I began pressurising the provider to answer questions about Olu’s medication. The answers were unsatisfactory and when the pharmacist requested Olu’s medical records from the ‘in-house’ GP, it became clear that once a drug had been prescribed it continued to be administered.
Finally, in April 2015, after three months of emails and phone calls, the psychiatrist reviewed Olu’s medical history. He recommended a systematic reduction of all psychotropic medications. At present the diazepam is gradually being eliminated; the SSRI will follow and, since he could find no epilepsy diagnosis, he recommended a neurology review.
It took another six months of work, a safeguarding alert and two visits from the Care Quality Commission for the neurologist to review Olu. After looking at the records, he conceded that although Olu had been given 3,000mgs daily of anti-convulsive medication since 1998, there was no record of any seizures. He recommended the slow reduction of the anti-convulsive medication.
Motivated
There have been other improvements: the residents go out more often as there are now 6 staff to 4 residents, rather than 4 to 4; according to Olu’s advocate the new staff are more motivated and organise genuine activities in the home; Olu is more alert, seen bouncing a ball across a room, and he has started using single words with staff; he has even been on holiday this year. The social services have decided that Olu should remain in this residential placement at present.
I referred above to Olu’s colour, size, and gender. Since coordinating the CoP Project and investigating service user’s medications, I have found that black service users, particularly men, have been over-medicated. Although this sample is small, we know that our mental health institutions and prisons contain a disproportionate number of black men and women. Could Olu’s story be revealing the learning disability equivalent of racism in our services?
Sarah Reilly is Coordinator of the Elfrida Society’s Circles of Protection Project. (Names and identifying features have been changed).
