Does the name Tom Wakefield mean anything to you? In the context of the 2gether Trust? Someone asked me that recently, and I had to admit the name didn’t ring any bells. Here’s a brief outline of the story, or anyway, of the story so far.
Just over ten years ago, in May 2004, a young man called Tom Wakefield died in hospital after a long and distressing illness. The cause of his death was pneumonia, complicated by other medical conditions including cerebral palsy — he had what we are now taught to call learning disability, so as coyly to conceal the actual disability. Tom had what reports later described as “profound and multiple” disabilities, including difficulty communicating:
“He used self-harming behaviour (tearing his face and scalp) to communicate and as a means of getting what he wanted.”
The report goes on:
“From 2002 Tom’s health deteriorated and from early 2003 he was displaying increasing signs of distress and was losing weight… His parents were convinced that his behaviour represented his attempts to communicate pain.”
Although Tom was seen by consultants with expertise in pain management and in children’s health, he wasn’t seen by anyone who could make sense of his increasing distress:
“His GP tried unsuccessfully to obtain psychologist or psychiatrist input to help assess Tom’s behaviour.”
Some months before his death, Tom was admitted to the Windrush Unit near Charlton Lane in Cheltenham, where he stayed for about three months. The unit was run by the predecessor of the 2gether Trust. (Back then, in 2003, it was called Gloucestershire Partnership NHS Trust, but I’ll just call it “the Trust”.) The unit closed shortly afterwards, and the site was later sold. A private dementia care home now stands there.
Tom died in Cheltenham General Hospital of complications of oesophagitis, a condition that he had suffered from since infancy and that should have been well known to those caring for him. His family made complaints against the GP surgery, the primary care trust (since abolished), the County Council, the acute hospitals trust, the Healthcare Commission (since abolished), and the Trust.
The reports (well, some of them)
In 2007, Mencap, a leading learning disability charity, published Tom’s story as one of six case studies in a report, Death by Indifference, which was part of a wider campaign called Treat me right!
In 2008 the House of Commons debated NHS treatment for people with learning disabilities. The MP for Cheltenham, Martin Horwood, told the House Tom’s story, saying:
“…the system failed in the most horrific way imaginable. In practice, competent staff, whatever their intentions, discriminated in the care that they gave… I am in absolutely no doubt that Tom Wakefield would be alive today if he had not had a disability.”
In a joint report of 2009 by the Local Government Ombudsman and the Parliamentary and Healthcare Ombudsman, many of the complaints of service failure, maladministration and injustice were upheld, including complaints against the Trust. Even so, Tom’s death was found to have been unavoidable, not a consequence of the widespread service failure and maladministration. The complaints against the GP surgery were not upheld.
As a result of the ombudsmen’s recommendations, Tom’s family received apologies from the chief executives of the organizations concerned, and compensation payments in recognition of the injustice suffered.
The joint report was published as one of six case studies of the treatment of people with learning disabilities under the collective title Six Lives. (The quotes in this post are from Part 7 of this collection, unless otherwise stated.)
Mencap and Tom’s family disagreed with some of the findings, taking the view they had taken all along that Tom’s death had been avoidable, and that the GP was also at fault, but even after reconsidering and obtaining more evidence, the Ombudsman didn’t change her mind.
Reports have continued to be published. In 2010, the year I started this blog, the Department of Health published a Six Lives Progress Report, which was to be the first of a series, but by then there was no mention of Tom Wakefield. Other deaths had taken centre stage.
The complaints upheld against the Trust by the Ombudsman in March 2009 were that there was service failure causing unnecessary distress, suffering and injustice:
“[T]he plans set out for [Tom] were not implemented. He was not provided with reasonable nursing care. The arrangements for his discharge to his adult care home were inadequate. This service failure by the Partnership Trust contributed to the injustice of unnecessary distress and suffering for Tom and his family. The Health Service Ombudsman concludes that some of the service failures by the Partnership Trust in terms of managing his discharge and his care and treatment were for disability related reasons. She also concludes that the Partnership Trust’s acts and omissions constituted a failure to live up to human rights principles of dignity and equality.”
And there was maladministration of the family’s complaints. For example:
“[I]t is clear from the Chief Executive’s responses that investigation of some matters, especially discharge arrangements, was inadequate. On this matter the Chief Executive was defensive and provided excuses rather than explanations. I was not convinced that the Partnership Trust had recognised and acknowledged its failings on this important issue. In contrast, my investigation has revealed significant failings in discharge arrangements.”
The Ombudsman went on to add:
“Moreover, partly due to failings in the Partnership Trust’s complaint handling, Mr and Mrs Wakefield have had to wait four years to learn the truth about Tom’s care and treatment in the Windrush Unit.”
The Trust accepted the Ombudsman’s recommendations and said it would take action beyond them:
“Furthermore, in 2009 the Chief Executive intends to commission an independent review of progress against the action plan and he will make this available to Mr and Mrs Wakefield and the wider public.”
I wasn’t able to find any information online about the action plan or the review, though.
In July 2009 the Trust published its Annual Report for 2008-9, including a statement on service quality, but there was no mention of Tom Wakefield or of the Ombudsman, no mention of learning disability in relation to service quality, and no mention of any independent review.
In the Trust’s next Annual Report, for 2009-10, in the list of “Priorities for Improvement 2009/10” there’s no mention of learning disabilities at all. The plans for 2010-11 do mention learning disabilities, but the focus is on blood clots, health checks and smoking.
Tom’s story had, by this time, petered out.
There is, however, a kind of postscript. The story I’ve told of what happened following Tom’s death is one of complaints, investigations, reports and recommendations. We have a sense that, through these official processes, lessons are learned by organizations even if we, as individuals, forget. Even if Tom’s story petered out and we can’t easily identify the lessons learned by the organization, we have a sense that lessons must, surely, have been learned.
Non-executive directors have for years been auditing the complaints made to the Trust, partly with a view to establishing whether the organization does learn lessons, and whether the people who complain are satisfied with the outcome.
In January this year (2014) they formally gave up trying. The minutes of the Board meeting record that:
“…it is not possible to track actions completed within individual complaint files”
“Satisfaction by complainants on the outcome of complaints…is not measurable for individual complaints”
So they excluded both these measures from their future audits. Cool, eh?
Do organizations learn? Is it, perhaps, better that we all individually remember how Tom Wakefield came to lose his life? And what about how Jenny Young then came to lose hers? And then Dorothy Shepherd? And the others about whom I don’t have reports to hand, or about whom the reports remain hidden from public view, or about whom no report was ever written?