Mr L’s Story
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Mr L, who was 21 years old at the time of these events, had severe learning disabilities and epilepsy. On 20 July 2008 he was vomiting and had abdominal pain and was admitted to Luton and Dunstable Hospital NHS Foundation Trust, where two days later a polyp was found in his stomach and removed. On 24 July Mr L’s consultant reviewed his condition. The consultant noted that he understood from speaking to Mr L that he had stopped vomiting and was keen to go home. Mr L was discharged the next day but his father, Mr G, brought him back to hospital as Mr L was still vomiting. On 28 July, a CT scan revealed a tumour in Mr L’s colon. This was removed and Mr L’s condition initially improved, however by 30 July he had begun to deteriorate again. A further scan suggested that there was a leak from the site of the tumour surgery. On 1 August Mr L had further surgery, and was then transferred to the intensive care unit, but his condition worsened and he died on 4 August. On 23 August the consultant wrote to inform Mr L’s GP of his death. The consultant said that he had not suspected a bowel obstruction during Mr L’s first hospital admission ‘because [Mr L] was a poor historian and I really could not tell what was going on. [He] was mentally subnormal..’.
Mr L’s father subsequently complained to the Trust about a range of matters relating to his son’s care and treatment. During the local resolution process the Trust apologised for shortcomings in some aspects of Mr L’s care, including failures in documenting care and in communicating with Mr L’s family about his condition and arrangements for his care. The consultant also apologised for using the term ‘subnormal’ to refer to Mr L and said he would not use it again. In the Trust’s final letter of 28 April 2009 they referred to a discussion at the local resolution meeting when Mr L’s parents had told the consultant that prior to his first admission Mr L had been experiencing symptoms that could indicate bowel cancer. They said that the consultant had not been aware that Mr L had those symptoms because ‘this was not communicated to him by Mr L at any time…’. The Trust acknowledged that the consultant should have made time to speak to Mr L’s parents.
Mr L’s father was dissatisfied with the outcome of his complaint as he felt that the Trust had not identified Mr L’s disabilities as a key factor. He was not convinced that the Trust had learnt from what had happened to Mr L, or done anything to prevent a recurrence. He specifically wanted the Trust to make changes to involve families and carers of patients with learning disabilities in a more structured way. Mr L’s father pointed out that, had anyone told them how sick their son was on 3 August, he and his wife would not have left their son alone and would have been with him when he died.
What our investigation found
We found several instances where, in view of Mr L’s learning disability, hospital staff could and should have involved Mr L’s family to ensure the proper planning and delivery of his care and treatment, but failed to do so. This omission was contrary to the Department of Health’s guidance, professional standards and the Trust’s own guidance.
Mr L’s family were the experts concerning their son and his needs, and yet the nursing staff failed to seek information from them when assessing Mr L’s needs and planning his care. Nor did they seek the input of the learning disability nurse or any other specialist adviser, contrary to the Trust’s guidance.
Similarly, by failing to consult the family when Mr L was first admitted, the surgical team were unable to evaluate Mr L’s clinical history fully, which meant that their decisions about Mr L’s care and treatment were not based on all relevant considerations. We found it astonishing that the consultant, knowing of Mr L’s learning disability, could have expected Mr L to be capable of providing all the relevant history of his presenting illness without his family’s help. Yet it is clear that that is what the consultant did, as he described Mr L as ‘a poor historian’, and he commented at local resolution that Mr L had failed to tell him about symptoms which might have indicated bowel cancer. We also found it extraordinarily inappropriate that a consultant should refer to Mr L as ‘mentally subnormal’ in writing to the GP.
Staff had also failed to follow the relevant guidelines in respect of consent to Mr L’s surgery. As Mr L was judged to lack capacity to give consent himself, it was proper for the clinical staff to decide on his treatment based on his best interests. However, close relatives and carers should have been involved in discussions about such treatments, and those discussions should have been recorded. Again, that did not happen here.
Sadly, the failure to communicate effectively with Mr L’s family about his clinical condition continued throughout, and as a result, the family had gone home for the night and were not with Mr L when he died. This undoubtedly remains a source of continuing and profound regret for them.
Although the Trust had acknowledged that there had been some failings in communication, they missed the point that, in view of Mr L’s learning disabilities, communication with the family was not simply good practice, but was of vital importance and Mr L’s right.
Mr L’s rights under disability discrimination law were engaged and should have been a relevant consideration in the Trust’s decision making. However, we found no evidence to demonstrate that either doctors or nurses had regard to the law or any guidance relating to the provision of services for people with disabilities when they planned and delivered Mr L’s care. They failed to ‘get it right’. The Trust’s actions fell significantly below the applicable standards, that was service failure.
The Trust’s failure to involve Mr L’s parents appropriately in his care and treatment meant that Mr L suffered the injustice of being denied the opportunity of an appropriate standard of care, and his parents were caused considerable additional anxiety and distress, compounding their natural grief at their son’s illness and death.
As injustices arose to Mr L and his family in consequence or service failure we upheld the complaint about the Trust.
What happened next
The Trust wrote to Mr L’s parents acknowledging the service failings set out in our report and apologising for the injustices thereby caused to them and to their son. The Trust paid compensation of £3,000. They also told us what they had done to ensure that they and the consultant had learnt lessons from the failings we had identified and what they planned to do to prevent a recurrence of them in future. This included setting up a Learning Disabilities Focus and Task Group, made up of care providers, relatives and hospital staff to discuss how to ensure that the Trust provided the best standards of care for vulnerable patients. A range of relevant training programmes was also being undertaken. One example of these was that the Learning Disabilities Liaison Nurse was running study days for Trust staff, using specific case examples to make nursing staff aware of the need to work with families to understand the person they are caring for and to involve families in care. The Trust had also commissioned an external review of the care they were providing to patients with learning disabilities.
