Ombudsman for Wales wants power to investigate hospices
The Ombudsman for Wales has called for his office to be given more power to independently investigate hospices.
It follows complaints from the family of a teenage girl who died of leukaemia about the way their concerns over her care were handled.
Peter Tyndall said the response to their complaints by Healthcare Inspectorate Wales (HIW) was muddled.
The inspectorate has apologised unreservedly and said it was changing the way it handles complaints.
The report details how the teenage girl was transferred from hospital to the hospice with a rare form of leukaemia in February 2008.
She was discharged in April and died at home in August.
During her 10 weeks at the hospice the girl's family were keen to play an active part in her care but disagreements arose with staff over her treatment.
Often we think about the privacy and dignity of patients coming to end of their lives as issues which only relate to older people. But this case shows the privacy and will of young people also have to be considered, when it comes to palliative care.
It also illustrates how a breakdown in communication can add to a family's distress. While trying to come to terms with their child suffering from a terminal illness, the family concerned were put in a position where they were also having to battle with the authorities.
The response to their complaints was 'muddled' according to the Ombudsman - who clearly feels there isn't full independent investigation in the sector.
Although hospices receive public funding to care for thousands of vulnerable patients, they don't come under the Ombudsman's jurisdiction in the same way as hospitals or council run services. While the work they do is clearly challenging, he feels it shouldn't be beyond full, proper scrutiny.
Hospice staff became concerned about their access to the patient and contacted Healthcare Inspectorate Wales (HIW) for advice.
After consultation, the hospice then warned the family that the girl would be discharged if they did not give the care team full access to her.
The family then complained to HIW about their treatment by the hospice, and about HIW's own involvement in the matter.
In his report, the ombudsman criticised HIW for focussing on the interests of the hospice staff and failing to seek the views of the teenager and her family.
He also noted a conflict of interest as HIW's expert reviewer who investigated the family's complaint had previously advised the hospice on the matter.Additional distress
Mr Tyndall also pointed out that he had no power to investigate the family's complaints against the hospice - although it received public funds, it did not fall into the same category as a hospital or council-run service.
He said it was "profoundly unsatisfactory" that there was no other independent public body that could handle such complaints, and asked the Welsh Assembly Government to look at bringing the hospice into his jurisdiction.
The ombudsman added that the assembly government's own complaints unit could have intervened at an earlier stage in the process.
In response, a spokesman for HIW said: "HIW apologises unreservedly for any additional distress that has been caused to the family by our actions in handling their complaints about aspects of their daughter's care.
"We accept the findings of the ombudsman and have made improvements to our systems for investigating and handling complaints to avoid the risk of similar issues arising again."
A Welsh Assembly Government spokesman said: "We accept the report's finding that we could have intervened at an earlier stage.
"We would like to assure the family that the recommendations will be pursued including that of introducing measures to improve our handling of complaints."
Baroness Ilora Finlay, professor of palliative medicine at Cardiff University and chair of the Wales Palliative Care Implementation Group, said the board had been very active in trying to address some of the issues which had been put into the public domain in the ombudsman's report.
And she backed the ombudsman's call for his remit to be extended to include all services receiving public money.
She told BBC Radio Wales: "He's recommended, I think very rightly, that wherever public money is going to fund any services as a contribution to those services, then that should really come within his remit - so people have the same rights of appeal if they feel a complaint hasn't been properly handled as they would if this was an NHS facility.
"I hope the assembly with their new powers might be able to do something about it."