Summary
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The events
In February 1996 Ms J, who was 18 years old, went to see her GP because she felt faint after mid-day meals. The GP tested her blood and found signs that she had developed diabetes. He referred her to see a consultant endocrinologist at Halton General Hospital and made arrangements for Ms J's diabetes to be monitored by the practice.
Ms J saw the consultant for the first time in July 1996, when he recorded a diagnosis of mature-onset diabetes in youth (MODY). Ms J saw the nurse specialist in diabetes that day, and several times over the next nine months.
In July 1997 Ms J planned to attend a family occasion in Wales. Feeling a little unwell, she went to her GP on 16 July complaining of muscle pain and lethargy. He recorded some limb girdle weakness in her shoulders and thighs, and a 'borderline' thyroid hormone level: he contacted the consultant after this consultation. Ms J travelled with her fiancé to Wales on 18 July. Feeling much worse when she arrived there, Ms J consulted a local general practitioner, Dr B, the next day, 19 July. Ms J explained that she had MODY and said that she had had stomach pain, sickness and vomiting for a few days. The GP did not test her blood or urine: he recorded a diagnosis of gastritis and prescribed an anti-nausea medication.
Ms J continued to feel very unwell: so much so that she and her fiancé cut short their stay and drove home on 20 July. That day and the next, Ms J consulted GPs at her home practice. Both concurred with the diagnosis given by Dr B, the GP in Wales: they, too, did not test her blood or urine. Ms J's parents called the GP practice a third time, on the morning of 22 July saying that Ms J had been delirious. The GP asked them to test Ms J's blood sugar, but they were unable to do so. The GP arranged Ms J's immediate admission to Halton General Hospital.
Medical staff quickly diagnosed diabetic ketoacidosis, and identified, at the same time, an unusually low level of sodium in her body. Ms J was clearly very unwell: treatment began and Ms J was admitted to the intensive care unit. Ms J remained unwell, and later that day began to complain of a severe headache. The simple pain relief given seemed to help only for a short time and Ms J continued to complain of a very severe headache. Ms J collapsed in the early hours of 23 July, soon requiring full life support. A CT scan of her brain revealed cerebral oedema. Ms J died on 31 July, from cerebral oedema and diabetic ketoacidosis.
Complaints about Ms J's care
Ms J's family complained about several aspects of her care:
that the diagnosis of mature-onset diabetes in youth was incorrect;
that insufficient information had been given to Ms J about the management of her diabetes, and in particular the effect of minor illness. They complained that she had not been taught 'sick day rules', that is, blood should be tested more frequently in the event of even a minor illness, as it may drive sugar levels in the blood to a dangerously high level. They also said that she had been wrongly advised that she need not test her blood while on holiday;
that the GP Ms J consulted in Wales should have tested her urine, at least, and arrived at the wrong diagnosis because he did not do so;
that the GPs at Ms J's home practice should have tested her urine, at least, and arrived at the wrong diagnosis because they did not do so;
that when Ms J was admitted to Halton General Hospital, her care and treatment were inadequate, and particularly that excessive administration of fluids caused the cerebral oedema that led to her death;
that the Independent Review Panel convened to examine the complaint about Ms J's care at Halton General Hospital said that she suffered a 'denial reaction' to the diagnosis of diabetes, and that was wrong, and unjust.
The Ombudsman conducted three investigations into Ms J's care. He investigated the care provided by Dr B, and that provided at Halton General Hospital. He also investigated the way that the Independent Review Panel convened by North Wales HA had reached the conclusion it had about Dr B's care. He was not asked to investigate the care provided by Ms J's 'home' GPs: that had been done by Independent Review Panels, which had criticised the care provided to her by them on 20 and 21 July 1997.
Findings
The Ombudsman found as follows:
(a) The consultant endocrinologist had recorded the diagnosis of MODY precipitately: the diagnosis was wrong; and Ms J most probably had slow onset type one diabetes. It was not possible to determine the full extent of information given to Ms J because the clinical notes lacked sufficient detail. The Ombudsman said that, while the standard of clinical notes was not below that often found, it was clearly not good enough.
(b) It would have been good practice if Dr B had tested Ms J's urine, and his record keeping was not comprehensive enough, nor in keeping with good practice. This was not the conclusion reached by the Independent Review Panel which examined the complaint against Dr B. The Ombudsman found that the Panel failed to reach a conclusion about the standard of care provided or to explain its reasoning. It also left Dr B with no clear statement as to whether he had acted reasonably and, if not, how he might improve his practice.
(c) Ms J had the right to expect better of Halton General Hospitals NHS Trust and its staff. In particular:
Inadequate steps were taken to monitor Ms J's fluid balance, which included the failure to insert a central venous pressure line.
Her care was divided between two consultants. This led to a degree of confusion, lack of focus on a care plan, and a lack of clear leadership to doctors still in training. Nursing staff paid inadequate attention to Ms J's complaint about headache and to her family's expressed concerns about her condition. There was also evidence of inadequate monitoring, record keeping, and communication with medical staff.
While Ms J's treatment plan was consistent with the hospital's protocol for managing diabetic ketoacidosis, medical and nursing staff did not re-assess the relevance of the plan in the light of clinical circumstances. Ms J's condition did not improve as would have been expected, yet the approach to her treatment was not reviewed by a senior member of the medical staff
The Independent Review Panel was wrong to say that Ms J had a denial reaction. The Ombudsman found evidence that Ms J was not 'in denial': indeed this was a complex concept that had been treated unwisely by the Panel.
Recommendations and responses
NHS staff and organisations involved in these complaints made a number of changes to practice both in the course of, and in response to, the Ombudsman's investigations. They included routine urine testing for people with diabetes consulting with Dr B, and in respect of Halton General Hospital:
changed practice on clinical note-making on the part of the nurse specialist in diabetes and a revised education procedure for young people with diabetes
the appointment of a second consultant with a special interest in diabetes at Halton
development of a range of services for people with diabetes, including foot health, retinopathy, specialist nurse, and young persons' clinics
improvements to literature for people with both type 1 and 2 diabetes, and to nursing documentation
revised management arrangements in the Intensive Care Unit
revised policy on managing diabetic ketoacidosis
review of ITU nurse staffing levels in preparation for the Unit's transfer to a purpose-built critical care facility
changed management protocol for diabetic ketoacidosis to include reference to cerebral oedema.
All those complained about accepted the Ombudsman's findings, apologised for the shortcomings revealed by the investigations, and agreed to implement the following recommendations made by him:
Dr B
Dr B should keep full clinical notes for all his patients, including positive and negative findings from examinations.
Halton General Hospital
(a) the revised education procedure for people with diabetes should be the subject of audit;
(b) nurse specialists should include the items of information and education provided to patients in the clinical record - not for defensive purposes, but to assure effective communication between health care professionals;
(c) the Trust should ensure that all people with diabetes, regardless of type or severity, are familiar with 'sick day rules' and when to contact the diabetic clinic for advice;
(d) the Trust should reflect on nursing care provided to Ms J as part of a staff development programme.
Conclusion
In the conclusion to the third investigation, the Ombudsman said:
'There is no doubt that type 1 and type 2 diabetes are serious life threatening conditions. Equally, there is no doubt that if they are correctly managed the risk of premature death and complications can be substantially reduced. Yet Ms J died. This investigation needs to be seen in the context of those previously conducted by my office and through the NHS complaints procedure into the entire course of Ms J's treatment and care. From this it is clear that a number of mistakes were made beginning with the initial, unduly definite, diagnosis of type 2 diabetes. Avoiding any one of these mistakes would have improved Ms J's chances of survival. It is not possible for me to say that one or more of these mistakes individually led to her death: but taken together they almost certainly did. If, for example, the diagnosis had been correct, or expressed with sufficient caution; if we could be certain that Ms J received the information and education she needed; if any one of the three GPs involved in her care had tested her blood or urine; or if Ms J had had impressed upon her, in no uncertain terms, that she must test her blood daily when unwell, had done so and reported untoward results, she might have survived.
'This investigation revealed that Ms J's inpatient care could have been more expertly co-ordinated and that she had a right to expect better from the trust and its staff. I cannot say with any certainty what contribution, if any, these failings made to the tragic outcome of this case.
'An important lesson is the need for all those involved in diabetic care, not least patients themselves, to be aware that it is essential to test blood glucose and urine ketones more frequently during an intercurrent illness, whatever the type or severity of diabetes. This simple measure could have saved Ms J: I hope it will save others.'
Office of the Health Service Ombudsman
December 2000
