Decision Report 201903631

Summary

C complained about the care and treatment of their late parent (A) who died in Glasgow Royal Infirmary (GRI) from respiratory failure and an undiagnosed progressive neurological condition. Potential Motor Neurone Disease (MND, a rare condition that progressively damages parts of the nervous system) had been noted by a neurology registrar five months earlier but this diagnosis was never confirmed. A was admitted to GRI four times over the following months, and C complained that their rapidly deteriorating condition was not acted upon and that palliative care was not initiated.

We took independent advice from a consultant neurologist (a specialist in nerves and the nervous system, especially of the diseases affecting them), who noted that investigations planned by the neurology registrar were not followed up, and that a referral to a specialist neuropathy clinic was not fulfilled, within national waiting time targets. We found that the medical teams caring for A during their hospital admissions failed to consider a neurological disorder as the cause of their deterioration and failed to seek specialist neurological input. We considered that neurological clinical standards should have been applied regardless of the absence of a confirmed diagnosis, and this would have included a timely assessment of communication, nutritional and respiratory needs. Notwithstanding this, we found that the palliative symptom treatment offered to A in the last months of their life was of a reasonable standard and, despite the absence of a diagnosis, we saw no evidence that A suffered from a lack of care or treatment. On balance, however, we upheld this complaint.

C also complained that the family were not informed that A's condition was terminal. We did not consider that staff were in a position to predict A would die when they did, given the lack of clear neurological diagnosis, and we were satisfied that there was communication with the family when death was appreciated to be imminent. However, the failure to seek specialist neurological input meant that there was a missed opportunity to clarify the diagnosis and enable clearer communication with the family regarding the prognosis. C also complained that the board failed to explain why a post mortem (PM) was not deemed necessary when A's deterioration and death was viewed as sudden. While we did not consider that a PM would have identified the underlying cause of A's neurological deterioration, we noted that it would have been best practice to discuss this with the family and seek their views before reaching a decision regarding a PM. We upheld this complaint.

Recommendations

What we asked the organisation to do in this case:

• Apologise to A's family that the failure to seek specialist neurological input meant there was a missed opportunity to clarify A's prognosis and enable clearer communication with them. The apology should meet the standards set out in the SPSO guidelines on apology available at www.spso.org.uk/information-leaflets.
• Apologise to A's family for failing to ensure planned investigation was carried out within National Waiting Time Guidance; for the failure to seek a specialist neurological opinion during A's hospital admissions; and for the failure to apply the Neurological Standards regardless of the absence of a confirmed diagnosis.

What we said should change to put things right in future:

• An effective handover of care should take place, and planned referrals should be followed up, when a clinician moves on to a different role / their role in providing a patient's care has ended.
• The board should consider their processes for ensuring maximum waiting times from diagnosis to treatment are adhered to, where possible, particularly in regard to patients who have progressive neuromuscular disease.
• The board should provide education to respiratory and emergency physicians to ensure they are aware of the potential contribution of neuromuscular weakness to respiratory failure in emergency situations, how to recognise this and how it can be managed effectively.
• The board should reflect on the view that the Neurological Standards would have been appropriate in this case, regardless of the absence of a confirmed MND diagnosis, and feed this back to relevant staff in a supportive manner to ensure that current standards are applied, where appropriate, in future.

We have asked the organisation to provide us with evidence that they have implemented the recommendations we have made on this case by the deadline we set.