Tom Wakefield
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Summary report of a joint investigation by the Health Service Ombudsman and the Local Government Ombudsman of a complaint made by Mencap on behalf of Mr and Mrs Wakefield in relation to their late son, Mr Tom Wakefield.
Complainants:
Mr and Mrs Wakefield
Aggrieved:
Mr Tom Wakefield (Mr and Mrs Wakefield’s late son
Representative:
Mencap
Complaint against:
West Street Surgery (the Surgery)
Gloucestershire County Council (the Council)
Cheltenham and Tewkesbury Primary Care Trust – now Gloucestershire Primary Care Trust (the PCT)
Gloucestershire Partnership NHS Foundation Trust – now 2gether NHS Foundation Trust for Gloucestershire (the Partnership Trust)
Gloucestershire Hospitals NHS Foundation Trust (the Acute Trust)
Healthcare Commission
How the Ombudsmen investigated
What the Ombudsmen found and concluded
The Ombudsmen's recommendations
Introduction
This complaint was investigated jointly by the Local Government Ombudsman for England and the Health Service Ombudsman for England in accordance with the powers conferred by amendments to their legislation due to The Regulatory Reform (Collaboration etc. between Ombudsmen) Order 2007. With the consent of the complainants, Tom’s parents, the two Ombudsmen agreed to work together because the health and social care issues were so closely linked. A co-ordinated response, consisting of a joint investigation leading to a joint conclusion and proposed remedy in one report, seemed the most appropriate way forward.
Background
Tom Wakefield was a sociable young man with profound and multiple learning disabilities and kypho-scoliosis (progressive curvature of the spine which caused problems with his posture). Since he was an infant he had had gastrointestinal problems for which he had undergone surgery as a child. Tom’s posture and gastrointestinal problems gave him pain which appeared to have been well controlled by medication until 2001. He could understand speech and was able to communicate using facial, hand and arm movements. He had a history of self-harming behaviour.
From the age of 6 years Tom attended Penhurst School (the Residential School). In July 2003, when he was 19 years old, he should have been transferred to suitable adult accommodation, but no place had been found for him so he remained at the Residential School. His behaviour and health deteriorated and the school felt unable to accommodate him. In November 2003 he was admitted to an NHS Assessment Unit managed by the Partnership Trust, where he spent 3 months until he moved to an adult care home. By that point his health had deteriorated further and in April 2004, shortly after moving to the Care Home, he was admitted to the Acute Trust where he died a few weeks later, aged 20. His death certificate records the causes of his death as aspiration pneumonia, reflux oesophagitis, scoliosis and cerebral palsy.
The complaint
Tom’s parents complained to the Ombudsmen that their son should not have died. They said that if staff at the Surgery, the Council, the Partnership Trust, the PCT and the Acute Trust had acted differently, he would have survived. They believed their son had suffered unnecessarily and had been treated less favourably for reasons related to his learning disabilities.
Tom’s parents were also dissatisfied with the way their complaint about NHS services had been handled by the Surgery, the Partnership Trust, the PCT and the Healthcare Commission. They were also dissatisfied with the way the planning and provision of their son’s care had been investigated by the Council. They felt the NHS and Council complaints processes had failed them and they asked the Ombudsmen to find out the answers to their questions about the service provided for their son.
What should have happened
The staff who looked after Tom should have been mindful of the overall standard governing their work. This standard is made up of two components: the general standard which is derived from general principles of good administration and, where applicable, public law; and the specific standard which is derived from the legal, policy and administrative framework and the professional standards relevant to the events in question.
In Tom’s case, legislation and policy about disability and human rights, in particular the Disability Discrimination Act 1995, the Human Rights Act 1998, Valuing People: A New Strategy for Learning Disability for the 21st Century (2001) and Once a Day: A Primary Care Handbook for people with learning disabilities (1999) were especially relevant to the overall standard.
Tom’s care should have been organised within the legal and policy framework for integrated health and social care as set out in key documents including the National Health Service and Community Care Act 1990 and the Care Standards Act 2000.
In terms of professional standards, the doctors and nurses should have followed the standards set out by their regulatory bodies. Tom’s care and treatment at the Partnership Trust and the Acute Trust should have met national and professional standards regarding nursing care and discharge arrangements.
The responses to Tom’s parents’ complaint about NHS services should have followed the National Health Service (Complaints) Regulations 2004 and their complaint about the Council should have been handled in line with the Complaints Procedure Directions 1990.
How the Ombudsmen investigated
The investigator met Tom’s parents to gain a full understanding of their complaint. It was important to carefully consider their recollections and views. Evidence about what happened to Tom and how his parents’ complaints about NHS and Council services were handled was considered. The bodies complained about provided additional information in response to specific enquiries, and specific clinical staff involved with Tom’s care were contacted.
Several professional advisers provided expert clinical advice to the Ombudsmen. They were: a hospital nurse; a learning disability nurse; two consultant gastroenterologists; a consultant psychiatrist; a professor of pharmacy; and a GP.
Tom’s parents, their representative and the bodies complained about had the opportunity to comment on the draft report, and their comments were carefully considered before the final report was issued.
What the Ombudsmen found and concluded
The Health Service Ombudsman’s investigation of the complaint against the Surgery
Tom’s parents complained that the care and treatment provided by the Surgery was inadequate. In particular, they said the Surgery failed to deal appropriately with their son’s pain and weight loss and failed to act on medical advice from a hospice to refer him for an endoscopy (an examination of the gullet and stomach using a telescopic instrument) and prescribe morphine for his pain. Tom’s parents were also dissatisfied with the way the Surgery handled their complaint.
The Health Service Ombudsman could appreciate why Tom’s parents found it difficult to accept that the Surgery offered reasonable care and treatment to their son during his last years at the Residential School, given that it appears he was in pain and losing weight at this time. However, she found that the care and treatment provided by the Surgery, including the management of Tom’s pain and weight loss, and the decision not to refer him for an endoscopy did not fall significantly below a reasonable standard in the circumstances.
The Health Service Ombudsman found no evidence of service failure by the Surgery and no evidence that Tom was treated less favourably by the Surgery for reasons related to his learning disabilities. Furthermore, she found no maladministration in the way the Surgery handled Tom’s parents’ complaint.
Therefore, the Health Service Ombudsman did not uphold the complaint against the Surgery.
The Local Government Ombudsman’s investigation of the complaint against the Council
Tom was still living in the Residential School when he was 19 years old and should have been living in adult accommodation.
Tom’s parents complained that the Council had failed to plan for, or commission, new provision for their son or to deal appropriately with his transition into adult accommodation. They said a Social Worker failed to pass on information about an offer of a suitable permanent placement for Tom. They also said the Council failed to investigate their concerns adequately or respond properly to their complaint.
The Local Government Ombudsman found that the Council’s arrangements for Tom’s transition to adult accommodation fell significantly below a reasonable standard in the circumstances. He found there was no commissioning strategy in place, there were gaps in plans for people with profound and multiple learning disabilities and challenging behaviour, and transition arrangements, including communication, had been poor. He also found that in relation to finding a placement for Tom, Social Services did not work on a person-centred basis. Rather, they worked in an unplanned and unstructured way. They failed to liaise or communicate properly with colleagues and Tom’s family about a potentially suitable placement which became available. Furthermore, the Council did not respond appropriately to Tom’s parents’ complaint or provide adequate reassurances about changes in practice. The Local Government Ombudsman concluded that these failures in service provision and complaint handling amounted to maladministration.
The Local Government Ombudsman said it will never be known if, had appropriate arrangements been in place, Tom would have lived longer or if he could have had more enjoyment from his life in his last year. He found that the Council’s actions contributed to the injustice suffered by Tom and his family and concluded that some of the Council’s maladministration in its arrangements for Tom’s transition to adult accommodation was for disability related reasons.
Therefore, the Local Government Ombudsman upheld the complaint against the Council.
The Health Service Ombudsman’s investigation of the complaint against the PCT
Tom’s parents complained that the PCT failed to liaise appropriately with the Council in planning their son’s transition to adult accommodation and did not provide a reasonable response to their complaint.
The Health Service Ombudsman found there were shortcomings in the way the PCT fulfilled its responsibilities with regard to planning for the health needs of people with profound and multiple learning disabilities. She concluded that these shortcomings amounted to service failure which was for disability related reasons.
She also found maladministration in the way the PCT handled Tom’s parents’ complaint.
The Health Service Ombudsman recognised the Council had lead responsibility for planning for Tom’s transition to adult care and took into account improvements the PCT had made since the events complained about. Nonetheless, she concluded that it was impossible to know what difference it would have made to Tom and his family in terms of his transition to adult accommodation if the PCT had fulfilled its responsibilities in this regard. This unanswered question was an injustice which remained a cause of distress for Tom’s parents. Furthermore, maladministration in the way the PCT handled Tom’s parents’ complaint led to further delay and distress for them.
Therefore, the Health Service Ombudsman upheld the complaint against the PCT.
The Health Service Ombudsman’s investigation of the complaint against the Partnership Trust
The Residential School decided it could no longer care for Tom because he was an adult and because his behaviour was becoming more challenging. The Residential School served Tom with notice to leave the home where he had lived for 13 years and the Partnership Trust arranged for him to be admitted to an Assessment Unit.
Tom’s parents complained that their son’s admission to the Assessment Unit was inappropriate. They said his care and treatment there was inadequate, he was at risk because the environment was poor and his discharge to the Care Home was badly managed. They were also dissatisfied with the way the Partnership Trust handled their complaint.
The Health Service Ombudsman found that it had been appropriate for Tom to go to the Assessment Unit for assessment for an onward placement. However, she found that the environment was not suitable for Tom’s needs and the care and treatment he received fell significantly below a reasonable standard in the circumstances. In particular, a good plan was developed for Tom’s care, but this was not implemented. Furthermore, the standard of nursing care was poor and the way in which Tom was discharged to the Care Home was not in line with national guidelines on discharge. The Health Service Ombudsman concluded there was service failure in the care and treatment provided for Tom at this time which was at least in part for disability related reasons.
The Health Service Ombudsman found shortcomings in the way the complaint was handled, for example, some aspects were inadequately investigated and the approach and tone of some responses was inappropriate. She concluded that, overall, these shortcomings amounted to maladministration.
The Partnership Trust told the Health Service Ombudsman about actions it had taken to improve services for people with learning disabilities. However, at the time Tom needed help from the Partnership Trust he did not receive a reasonable standard of service. We cannot know whether the outcome for Tom would have been different had he been provided with better medical treatment and social and nursing care. This service failure contributed to the injustice of unnecessary distress and suffering for Tom and his family. Moreover, partly due to failings in the Partnership Trust’s complaint handling, Tom’s parents had to wait four years to learn the truth about his care and treatment in the Assessment Unit. This undoubtedly contributed to their distress which remained an unremedied injustice.
Therefore, the Health Service Ombudsman upheld the complaint against the Partnership Trust.
The Health Service Ombudsman’s investigation of the complaint against the Acute Trust
Tom’s condition was already deteriorating when he moved from the Assessment Unit to the Adult Care Home. It was soon after this move that he became so ill that he was admitted to the Acute Trust.
Tom’s parents had not previously complained about the Acute Trust, but to ensure they had a full picture of their son’s care and treatment during the final months of his life, the Health Service Ombudsman used her discretion to investigate their complaint. They complained that Tom’s care and treatment at the Acute Trust, particularly pain management, hydration and nutrition, were inadequate.
It was clear that given Tom’s complex health needs, poor nutritional state and disabilities, providing him with appropriate care and treatment represented a significant challenge for the Acute Trust. Tom’s condition had deteriorated to a point where his recovery was unlikely.
Nonetheless, the Health Service Ombudsman found significant failings in the care and treatment the Acute Trust provided. In particular: medical co-ordination and supervision of his care fell below prevailing standards; nursing assessments, planning and interventions were inadequate; arrangements for managing Tom’s medication were inadequate; incident recording and reporting were poor; and it seemed Tom’s parents were not made fully aware of his prognosis. The Health Service Ombudsman found that staff did not act in line with prevailing professional standards and they did not know how to make reasonable adjustments in their practice to meet Tom’s needs. This was service failure for disability related reasons.
This service failure contributed to the injustice of unnecessary distress and suffering for Tom and was an unremedied injustice.
Therefore, the Health Service Ombudsman upheld the complaint against the Acute Trust.
The Health Service Ombudsman’s investigation of the complaint against the Healthcare Commission
Tom’s parents were dissatisfied with the way their complaint was handled by the Healthcare Commission.
The Health Service Ombudsman found maladministration in the way the Healthcare Commission reviewed Tom’s parents’ complaint. The Healthcare Commission did not look at the NHS services as a whole and failed to address significant aspects of the complaint. Also, the clinical advice it obtained was inappropriate and inadequate which meant its decisions were unreliable and unsafe. Furthermore, the Health Service Ombudsman found the Healthcare Commission did not explain its decision adequately and did not keep in touch with Tom’s parents during the review. These shortcomings resulted in an injustice to Tom’s parents in that they did not receive the standard of review to which they were entitled and their experience fell far short of their reasonable expectations.
Therefore, the Health Service Ombudsman upheld the complaint against the Healthcare Commission.
Was Tom treated less favourably for reasons related to his learning disabilities?
From the evidence she received the Health Service Ombudsman concluded that the failings in the service provided for Tom by the PCT, the Partnership Trust and the Acute Trust were at least in part for disability related reasons. Similarly, the Local Government Ombudsman’s consideration of the actions of the Council led him to conclude that the maladministration he found had been for disability related reasons.
The Ombudsmen concluded that the service failure and maladministration identified at the different organisations constituted a failure to live up to human rights principles, especially those of dignity and equality. They also concluded that there was no positive intention to humiliate or debase Tom. However, they considered the standard of service he received did raise the question of whether the actions of the Council, the PCT, the Partnership Trust and the Acute Trust constituted a failure to respect Tom’s dignity. Maladministration and service failure touched upon and showed inadequate respect for Tom’s status as a person.
Furthermore, the Health Service Ombudsman concluded that service failure by the Partnership Trust and the Acute Trust resulted in unnecessary suffering for Tom in the final months of his life.
Was Tom’s death avoidable?
Tom’s parents said that had Tom received appropriate and reasonable service from the bodies they complained about his death could have been avoided. They said they accepted Tom had a life-limiting illness but not that his condition was life-threatening. They said doctors did not give them any indication their son was likely to die.
The Ombudsmen found there was public service failure by the Council and NHS bodies and that those combined failures resulted in significant unremedied injustice for Tom and his parents. Tom’s parents will never know if, had appropriate arrangements been in place for their son’s transition to adult care, his life would have been longer or if he could have had some extra enjoyment in his last year of life.
However, on balance the Ombudsmen could not say that Tom’s death was in consequence of the service failure or maladministration we identified. Rather, they saw evidence that Tom’s condition had been declining for many years and that this decline began before the events complained about. Therefore, they could not conclude that Tom’s death was avoidable.
The Ombudsmen’s recommendations
The Ombudsmen recommended that Tom’s parents should receive apologies and compensation totalling £30,000 from the various bodies against which complaints were upheld. This compensation was in recognition of the injustice suffered in consequence of service failure and maladministration identified.
In response to these recommendations all of the bodies acknowledged their failings, apologised to Tom’s parents and offered information about improvements in service since Tom’s death. They also agreed to pay the compensation recommended. The Healthcare Commission agreed to apologise to Tom’s parents.
The complainants’ response
Tom’s parents were dissatisfied with the outcome of some aspects of the investigation. In particular, they disagreed with the Health Service Ombudsman’s decision not to uphold their complaint against the Surgery. They said they believed that the ‘actions of the GP were pivotal’ to what happened to Tom. Furthermore, they strongly disagree with the decision regarding avoidable death. They believe Tom’s death was avoidable and they do not accept that their son was at the end of his life.
