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Home > Publications > Selected Cases > Selected Investigations Completed December 2002March 2003 > Case no. E.1033/01-02
Complaint against the former North Essex Health Authority (now Harlow Primary Care Trust)
Summary of Case
In April 2000, North Essex Health Authority refused to provide funding for growth hormone treatment, which had been recommended for Mrs Q by her consultant. (Responsibility for funding such treatment now rests with Harlow Primary Care Trust (the PCT)). In May, Mrs Q’s husband, Mr Q, appealed against that decision but the Health Authority’s Appeal Panel rejected the appeal on the grounds that there were no ‘exceptional circumstances’. The Health Authority did not, however, define what would constitute ‘exceptional circumstances’. In July, Mr Q requested an independent review (IR). The IR panel made various recommendations, including that the Health Authority should conduct a prompt reassessment of the policy for growth hormone treatment to include a review of the opinion of the most current and appropriate publications available and of local specialist advice. In July 2001, the Health Authority’s director of health policy and public health (the director) advised Mr Q that the review of growth hormone therapy treatment in adults had been completed; it had been decided that funding for treatment would continue to be based on evidence published in peer-reviewed journals. It did not consider that there was compelling evidence from published trials of the effectiveness of growth hormone on improving patients’ quality of life (evidence favoured by Mrs Q’s consultant). As such, the director advised Mr Q that the Health Authority’s existing policy, namely not to prescribe growth hormone in adults, would stand until further guidance was published by the National Institute of Clinical Excellence; any exceptions would be made on a case-by-case basis by the appeals panel.
Mr Q complained to the Health Authority that the policy did not make clear what would constitute an ‘exceptional circumstance’; furthermore that the data on which the policy was based was inadequate.
Findings
The Ombudsman took advice from two independent professional assessors. With regard to the lack of clarity as to the circumstances in which treatment would be provided, the Health Authority had maintained that it was not possible to set out in advance what these exceptional circumstances would be. Furthermore, it did not accept that appellants were disadvantaged by not knowing what might constitute an exceptional circumstance. The Ombudsman disagreed on both counts. In their report, the assessors had made two suggestions as to what could constitute exceptional circumstances in their view, and the Ombudsman concluded that it was therefore possible, at the very least, to attempt a definition. Moreover, he was of the view that unless appellants knew what sort of matters the Health Authority were looking for, they would not know what evidence they should adduce in support of their application, and would be at a distinct disadvantage. The Ombudsman upheld this aspect of the complaint.
With regard to Mr Q’s contention that the revised policy document on use of growth hormone in adults was based on selective and inadequate data, and lacked any indication of the balance of specialist opinion, the assessors raised similar concerns. They found that on no occasion when reviewing the policy on growth hormone treatment did the Health Authority utilise the services of a regional expert in pituitary disease or seek input from such an expert elsewhere in the UK. The assessors also commented that the projected costs of providing growth hormone in adults provided by the Health Authority were confusing and inaccurately high. The Ombudsman concluded that had the Health Authority considered specialist endocrine opinion, the outcome for Mrs Q might have been very different and, by that omission, she was potentially disadvantaged. The Ombudsman upheld this aspect of the complaint.
Remedy
The Ombudsman recommended that the PCT review its policy on growth hormone treatment, taking into account the matters identified and, having done so, consider Mrs Q’s case afresh.
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