Ms T’s and Mrs S’s Story
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Ms T, who was profoundly deaf, began to have epileptic seizures after the birth of her first child in 2002, and the seizures became worse after the birth of her second child two years later. Ms T was prescribed anti-epileptic medication, but she and her family believed that it was making her drowsy and contributing to her poor cognitive state. She asked for a second opinion on the management of her epilepsy, and in 2006 she was referred to a consultant at Barts and The London NHS Trust.
In April 2007 that consultant wrote telling Ms T that he did not favour reducing her medication because of the increased risk of seizures that involved, and pointed out that other drugs were not free of side effects. However, in October 2007, when Ms T collected her prescription, she found that the daily dosage of one of her anti-epilepsy drugs had been reduced by half. When she queried this in writing, the consultant simply confirmed her medication. The next month she was admitted to hospital with worsening seizures and confusion, and she remained there for over six weeks whilst her medication was slowly changed and a series of tests (EEGs, which record brain activity) were carried out. The last EEG, carried out on 4 January 2008, indicated that she was still having seizures leading to loss of consciousness.
Ms T was then discharged on 7 January 2008. However, the discharge summary updating her GP on her treatment and condition was not sent until 4 February. By that time Ms T had been admitted to another hospital (on 2 February), where she died later that month of peritonitis and a bowel problem.
In March 2008 Ms T’s mother, Mrs S, complained to the Trust about her daughter’s care and treatment. She asked why her daughter’s medication had been reduced in October 2007 without explanation; why her daughter had been discharged in January when her seizures were not under control; and why, when she (Mrs S) had tried to discuss with the hospital the family’s concerns about Ms T’s deteriorating health after her discharge, the nurse specialist had simply told her that the consultant was on holiday and there was no one else who could speak to her in his absence. Mrs S also complained later about the delay in sending her daughter’s GP the discharge summary and the failure to provide Ms T with someone who could use sign language. She said that her daughter’s speech had been very poor and she had found communicating with her doctors difficult. Yet her deafness had not been taken into account during her hospital stay; no assessment had been made of her communication needs, and although a sign language interpreter had been appointed on one occasion and Mrs S had done her best to act as interpreter when she was visiting, her daughter had felt increasingly isolated and had become depressed. Mrs S said that she believed that communication between her daughter and the doctors had been so poor that opportunities to diagnose and treat her daughter’s illness had been missed, and that her daughter might still be alive if her doctors had listened to her.
The Trust took over six months to respond to Mrs S’s final letter to them. They apologised for the fact that the change in Ms T’s medication in October 2007 had not been discussed with her first, acknowledged that she should have been readmitted to hospital in January 2008 when Mrs S had contacted the nurse specialist, and also apologised for the delay in the discharge summary being sent to Ms T’s GP.
What our investigation found
We found that the care and treatment Ms T received fell far so far below the applicable standard that it amounted to service failure.
Although the consultant had previously warned Ms T in writing in April 2007 about the risks attached to reducing her anti-epilepsy medication, he not only failed to discuss those risks with her when he reduced her dosage six months later, but he also failed to involve her in making the decision about her treatment. That was completely contrary to the professional guidance to doctors on effective communication with patients.
There were similar omissions when Ms T was discharged on 4 January 2008. Critically, the doctors who made that decision failed to take account of the EEG result three days earlier. Had they discussed the EEG results and their implications with Ms T and her family, they might well have decided to postpone her discharge. They should at the very least have advised her what to do if her condition deteriorated after she left hospital. That omission meant that Ms T was sent home ill-prepared, without important information about her condition. To make matters worse, the delay in sending her GP the discharge summary meant that he was equally in the dark and unable to offer her and her family appropriate support either. Then when Mrs S sought advice from the hospital, as her daughter’s health declined, the hospital failed to recognise that Ms T needed to be readmitted.
It should also have been immediately apparent to the hospital, given that Ms T was profoundly deaf, that they had additional obligations to her under disability discrimination law. Yet there is no evidence to show that any of the clinical or nursing staff considered whether they needed to treat her any differently from any other patient, or whether they needed to provide additional support, such as a sign language interpreter. This would have helped them with day to day communication with Ms T and enabled her to be able to understand, and contribute to, the decisions regarding her care and treatment. Had they recognised her legal rights and acted accordingly, although the outcome for Ms T might well have been the same, Ms T’s care and treatment might have been better planned and delivered. At the very least, she and her family might have better understood the problems she was facing and the risks involved in her proposed treatment.
In determining whether there was service failure, we referred to the Ombudsman’s Principles of Good Administration. In order to ‘get it right’ the Trust should have ensured that it had regard to Ms T’s rights as a person with disabilities. We found minimal evidence that either doctors or nurses had regards to the law or guidance relating to the provision of service to people with disabilities when they planned or delivered Ms T’s care, or that Ms T’s rights under disability discrimination law were a relevant consideration in their decision making. We concluded that in providing care to Ms T, the Trust did not have regard to its obligations under disability discrimination law. We found the Trust’s failings in this respect were so serious as to constitute service failure.
We also found maladministration in the way the Trust handled Mrs S’s complaint.
We found that Ms T suffered injustice as a consequence of the service failure in her care and treatment and that Mrs S experienced injustice in consequence of the Trust’s maladministration in complaint handling. We upheld the complaint about the Trust.
What happened next
The Trust wrote to Mrs S to acknowledge the failings in care and treatment and complaint handling identified in our report and to apologise for the impact those failings had on her and on her daughter. The Trust paid Mrs S compensation of £1,000 in recognition of the unnecessary distress she had suffered as a consequence.
The Trust also sent us details of how they intended to build on new policies and procedures already introduced to share the lessons learnt from the investigation with its clinical, nursing and complaint handling staff to prevent similar failings occurring in the future. This included a wide range of steps to improve communications between medical and nursing teams, patients and their families throughout the patient’s hospital admission, and with their GPs on discharge, and the setting up of a Communications Group to look into and try to resolve any communication problems experienced by patients. In response to recommendations by that Group, one nurse and another staff member were attending sign language training. Steps were also being taken to try and improve booking systems for appointments where British Sign Language (BSL) signers were needed and the Trust now use two dedicated booking staff who are BSL signers. The Trust had also appointed an Equality and Diversity Manager to provide training and guidance on the Equality Act for all Trust staff. Finally, a new complaints policy had been introduced which allowed greater flexibility in the handling of complaints, robust quality assurance to ensure that all issues raised were fully responded to, and which used in-depth analysis of all complaints to inform service improvement.
