What the complainant had to say
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Mrs S said that they had not been keen for Miss S to be transferred to the Welsh Consultant’s team as they understood that she would have no treatment or support available there, other than on a general psychiatric ward, which had not been a successful approach in south west England. She noted that the Welsh Consultant had also advised against it as an ‘unsafe transfer’.
Mrs S said that they were told in December 2006 that Miss S’s condition was becoming critical, and that her life was at risk. She said that HCW’s decision in January 2007 not to provide funding left her with no choice but to arrange a private admission. Mrs S said that she needed to ensure her daughter’s survival and could not wait while the various organisations argued over who would pay. She said that the English Consultant agreed with the course they chose to take, and said she was led to believe that NHS funding for the costs of the placement would – eventually – be established as their legal right.
Mrs S said that HCW’s position seemed to suggest that funding would be refused if follow-up facilities were not in place. She wondered if this was a tenable position. Mrs S said that she had used around £20,000 of savings which she had built up for her retirement, and her daughter had used about £11,000 (which she had saved towards a house deposit) to pay for treatment at the private centre. Mrs S said that once their money ran out, the private centre agreed to provide the rest of Miss S’s treatment at no cost to the family.
In a written statement, Miss S said that she was told that HCW had refused to fund her treatment as she was not in a Welsh hospital. She said she could see no benefit in transferring to Wales as the only option given to her was to transfer to an acute psychiatric ward, which was inappropriate for her needs. Miss S said she was not coping on a similar ward in south west England, but at least there she had the support of her mother and friends, which would not have been available in Wales. Miss S said she had not refused the option of a short assessment in south Wales as this was never suggested to her. She noted that in any case, when the Welsh Consultant was approached about the possibility of her being transferred, he had refused on the grounds that it would be unsafe.
Miss S said she questioned why HCW felt unable to accept the recommendations of several consultant psychiatrists in England, one of whom was a specialist in eating disorders, and what the clinical benefit would have been to move her whilst in a very frail physical and emotional state. She noted that HCW had suggested that the Welsh Consultant could have travelled to south west England to assess her, but she was not sure what would be gained by that, given that she had already been assessed in detail by two consultants.
Miss S said she contested an assertion made by HCW that she was ‘in a place of safety’ in the English hospital. She said that the ward staff were unable to offer adequate support, and she continued to lose weight. Miss S said that by the time of her discharge, her BMI had dropped further to 13.5, which is considered to be ‘critically ill’. She questioned therefore why HCW did not treat her case as an emergency.
Miss S noted that the main reasons given by HCW not to fund treatment at the EDU were that there had been a lack of input from the local (Welsh) services and, in particular, a lack of a care pathway and discharge planning. Miss S said that it seemed sensible for there to be close liaison between specialist treatment centres and local services; however, she questioned whether this was essential before admission to the specialist centre. Miss S said this could have been sorted out after she was admitted, rather than trying to do so while her condition was rapidly deteriorating and she was in an inappropriate placement. While she noted that HCW had said that not having a clear treatment pathway could have led to a risk to her continuing health, she considered that her current state of health should have been a more important consideration than something that might happen in the future. Miss S said that, in fact, HCW’s decision not to fund her treatment had now made discharge planning more complicated as she had been forced to give up her rented property to pay for her care. Thus, she was not sure where in the Cardiff and Vale of Glamorgan area she would be living on discharge, and consequently which GP or community mental health team she would come under. Miss S concluded:
‘In summary, I was admitted to psychiatric care in October 2006, and by December my condition had worsened and I required intensive lifesaving treatment for anorexia in a specialist centre. Throughout December and January Mum and I were left in an unacceptable position in which I was refused funding by [HCW] because I was not in a Welsh hospital or under a Welsh consultant and [the Welsh Consultant] being unable to accept my transfer to Cardiff as he could not manage my care appropriately there. Hence, although I was reluctant to be transferred to Cardiff as it appeared to have no clinical benefit, this is almost an irrelevance as I was not offered a bed.
‘By January my health deteriorated to a critical condition, which was being made worse by the constant terror of what was going to happen to me. There appeared no way past the apparent impasse with [HCW’s] apparent determination that I should be transferred against medical advice to Wales where there were no specialist services available and [the Welsh Consultant was] unwilling to accept the transfer. Mum made the only possible decision available to her and paid for me to transfer to the [private centre] for lifesaving treatment rather than risk my life while bureaucrats continued to decide what, if anything, my life was worth. … Mum and I have spent a significant amount of money in saving my life when there was no other way forward. Surely [HCW] have a duty to reimburse us for our expense? I was lucky so much that Mum was able to fund my healthcare when it seemed as if I was being left to die. I am concerned that there may be other people trapped in similar situations who are unable to be supported in this way by their families.’
