Part 9 - Complaint about Berkshire Healthcare NHS Trust (the Trust)
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Remedy for poor treatment of an adolescent girl suffering from anorexia nervosa
Background to the complaint
Miss G was 15 years old when she was referred to the Berkshire Adolescent Unit (the Unit), because of weight loss and self-induced vomiting, in November 2002. She was assessed at the Unit in January 2003, and admitted to a re-feeding programme in February. Miss G used laxatives and diuretics and made herself sick in order to lose any weight gained. She left the programme in March, and a week later took an overdose, having felt guilty about eating something at a barbeque.
In May 2003 Miss G was readmitted to the programme, but continued to lose weight. On 14 May the Consultant Psychiatrist, Dr Z, met Miss G for the first time. Because of Miss G’s poor progress at the Unit, her mother asked about a transfer to a specialist unit within the NHS or to the private sector. Following this meeting Miss G attended the Unit as an in-patient on weekdays, but she still felt distressed if she put on weight.
Miss G absconded from the Unit four times in June 2003. On the first occasion she telephoned her mother to let her know that she had left the Unit; Unit staff were unaware that she had gone. Miss G took another overdose in July, following which Mrs G asked Dr Z if her daughter could be transferred to a named private clinic (which specialised in treating anorexia nervosa in children and adolescents) as an NHS patient because she felt that her daughter had deteriorated.
In mid-July, at a time when Miss G was in a poor state, Dr Z and others who might have advised Mrs G about her daughter’s ongoing care were all on leave. Feeling she had no alternative, she asked her GP to refer Miss G to the private clinic.
Mrs G took out a loan of £45,000 to pay for the treatment. All the other patients at the clinic were said to be NHS-funded. Miss G put on weight and was discharged in December.
Complaint to the Trust
Mrs G complained to the Trust in August 2003 and received the Chief Executive’s response in November. Amongst other things, the letter said that the matter of Miss G having absconded would be followed up in the Unit. Mrs G was dissatisfied with the response and approached the Independent Complaints Advocacy Service for help. They referred her complaint to the Ombudsman in May 2004.
What we investigated
We investigated Mrs G’s allegations that the Unit had not provided adequate care for Miss G; that there were failings in the care provided by the Unit, in that she was able to abscond from there; and that Miss G was not seen personally by the Consultant Psychiatrist until May 2003. Mrs G told us that she did not want any other family to have the same experience. She had sought help from the private sector, when she thought her daughter’s life was in danger, and wanted to be reimbursed for the loan.
A Consultant and Professor of Adolescent Psychiatry and two Psychiatric Nursing Assessors provided us with advice on clinical issues and nursing matters.
As the National Institute for Clinical Excellence (NICE) did not issue its guidelines about eating disorders in adolescents until 2004, we relied on our clinical advisers to indicate the care standards that Miss G and her family could reasonably have expected in 2003. We were advised that the response to treatment of young people with anorexia nervosa is very variable and tends to be poor when laxative and diuretic misuse and self-harm are involved. Some aspects of progress would be expected within six months, however, and it would be of concern if none of these were apparent. These include some engagement with treatment aims and development of good relationships with one or two key staff; and some containment of the young person’s maladaptive eating and associated non-eating behaviours.
We expected the Unit to have policies on observation and assessment, and an approach to the planning of care consistent with the Care Programme Approach (CPA). Further guidance was set out in ‘Modernising the Care Programme Approach’, issued by the Department of Health in 1999, which noted that risk assessment and management are integral components of CPA, and that contingency planning should be an element of risk management as a means of preventing and responding to crises. Arrangements for handling crises are expected to be included in care plans.
What our investigation found
We found that the Unit had no adequate systems in place for care planning, communication, risk assessment and risk management to provide Miss G and her parents with a sense of engagement and containment, nor did it give them a clear sense of direction about Miss G’s care. She lost weight and her health and safety were compromised by a lack of effective arrangements to manage the risk that her behaviour presented. Miss G and her parents were not offered other choices, nor given a clear sense of direction when all local options seemed to be ineffective, inappropriate or unavailable.
Although the Chief Executive told Mrs G in November 2003 that the issue of Miss G having absconded would be followed up in the Unit, the letter was dated some five months following the event. It was not apparent that an urgent investigation had been carried out immediately following Miss G’s undetected absence.
The gap between Miss G’s admittance to the Unit and being seen by Dr Z was unacceptable, given her clear lack of progress, a moderate to high level of risk and high parental concern.
We concluded our investigation in November 2007, and upheld Mrs G’s complaint. The service failures described above, together with the fact that she was left without any clear guidance about when a decision might be made about referring Miss G elsewhere left Mrs G fearing for her daughter’s life.
Outcome
The Trust agreed to apologise to Mrs G for their failures and for the distress caused to her, and to pay her compensation of £500; to reimburse Mr and Mrs G the full cost of the private treatment and to pay the interest on the loan; to ensure that they have a clear policy on out-of-area treatment that can be shared with parents and patients; and to implement the NICE Clinical Guideline 9 (‘Eating disorders – Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders’).
