Case 16 Clumsiness

Mr Stephen Higgins is a 58-year-old partner in an accountancy firm. He is married with two grown-up daughters and a young grandson. He is referred to the neurology outpatient clinic with a history of reduced dexterity and clumsiness in his left hand, present for approximately a month. The referral letter states that Mr Higgins has high blood pressure for which he is taking three antihypertensive agents, and that he smokes. The GP wonders whether the presentation represents a lacunar stroke. Mr Higgins is seen by Dr Miles, an ST5 in neurology.

What other diagnoses might Dr Miles consider?

Dr Miles takes a thorough history and concludes that the clumsiness was first noted by Mr Higgins some three months ago and that it has progressed a little over that time. On direct questioning, Mr Higgins describes his left leg as feeling somewhat heavy although he has not had any problems getting around – aside from a single fall in the garden a week before the appointment. There are no sensory symptoms. There has been no weight loss, cough or shortness of breath. Examination reveals a left arm that is weaker than the right – the difference more than one might expect on the basis of hand dominance. There appears to be some wasting of the intrinsic muscles of the hand. Reflexes are difficult to elicit. On examination of the lower limbs, reflexes are generally brisk. There is no wasting but there is occasional fasciculation over the anterior thigh. Cranial nerves are entirely normal. Chest examination is normal.

What is you differential diagnosis at this point?

Dr Miles explains to Mr Higgins that the differential is broad. The most likely diagnosis is a radiculopathy secondary to cervical myelopathy. However, a space occupying lesion or a stroke is possible, and there is a very small chance of a primary degenerative condition such as motor neurone disease. Dr Miles tells Mr Higgins that he will organize a chest radiograph, a CT scan of the brain and neurophysiological tests in the first instance before reviewing Mr Higgins in the clinic in 4 weeks.

When Mr Higgins returns to clinic 4 weeks later, Dr Miles is on annual leave and he is seen by Dr Wainwright, a clinical research fellow. In a busy clinic, Dr Wainwright reviews the radiology (normal) and the report of nerve conduction studies done a week before (normal conduction velocities and amplitudes). The symptoms have not progressed over this time and Dr Wainwright reassures Mr Higgins that the tests to date have been normal and that the next step is an MRI scan of the cervical spine. Given current symptoms, it is unlikely that a cervical decompression would be appropriate – there is little urgency. He requests this investigation and another appointment is made for 6 months.

Do you have any comments about the management plan?

Seven months later, Dr Miles once again sees Mr Higgins in the clinic for review. The MRI scan, to Dr Miles’ surprise, is entirely normal with no evidence of cervical myelopathy. Mr Higgins states that he has been doing less well. He is no longer able to maintain his garden, a longstanding passion, on account of his increasing clumsiness. He has fallen when climbing up the stairs on two occasions and finds it an effort to get out of the chair. On examination, Mr Higgins’ left leg is now wasted. There is clear and widespread fasciculation.

Dr Miles goes back through the records and reviews the nerve conduction studies. He looks at the results of the electromyography (EMG) which appear at the foot of a fax from neurophysiology at the local teaching hospital. He notes that the response of the motor units was said to be ‘polyphasic with high amplitude and long duration. Conclusion: consistent…’ The remainder of the report is not legible.

Dr Miles explains to Mr Higgins that he needs to revisit the diagnosis and that taken together, all the evidence points to amyotrophic lateral sclerosis, a variant of motor neurone disease. Dr Miles takes time to explain the implications of this diagnosis, and with the nurse specialist present, answers Mr Higgins’ questions about prognosis.

Mr Higgins dies a year later. His daughter writes to the hospital and complains about the eight-month delay in diagnosis. She states that she and her family feel robbed of good quality time with her father – had he known of the diagnosis, he would have made the best of his situation, spent time getting to know his grandson rather than fretting about work, and done all sorts of things that he has planned to do in retirement. By the time he did know of the diagnosis and prognosis, it was too late.

How should the hospital respond?

Expert opinion

The Neurology Directorate should undertake an investigation into the circumstances surrounding Mr Higgins’ treatment. It seems likely that the failure to make an accurate diagnosis on the first opportunity was multifactorial: a partial report from neurophysiology likely due to a defective fax machine; unclear wording on the portion of the EMG report that was communicated; a failure on the part of Dr Wainwright to specifically seek out all the relevant test results; and, a hectic clinic which may not have been reduced in size to accommodate planned leave.

If the hospital is seen to investigate thoroughly, plan and implement improvements, and reduce the chances of a similar event occurring in the future, it is likely that Mr Higgins’ family will be satisfied. In this case, putting in place a system by which requested tests are logged and results are followed up, the potential for error could be minimized. Specialist neurophysiologists could also be encouraged to provide a more comprehensive explanation of results, not least as few clinicians will be as au-fait with the interpretation that should be placed on complex – and perhaps normal – measurements.

Many complainants are motivated by a desire to understand what went wrong for them and to prevent others from having the same experience. Relatively few seek financial recompense through a legal process.

Legal comment

The daughter’s letter of complaint will be responded to under the Trust’s complaints policy. This guarantees to acknowledge receipt within three working days and to provide a written response within 25 working days, or longer if agreed by the complainant. The complaints process aims to give a written factual explanation of what treatment the patient has received, to offer an apology for any shortcomings in care and for serious complaints, an action plan to capture any organizational learning that has been identified as necessary as a result of reviewing the complaint.

Local resolution includes the Trust’s written letter of response and the offer of a meeting with the patient or patient’s family. If a complainant is not satisfied with the Trust’s response to their complaint she can refer the matter to the Parliamentary Health Service Ombudsman (PHSO). The PHSO will contact the Trust to establish if local resolution has been completed. If it has not been completed, the PHSO will not review the complaint until it has been. If the Trust confirms that the complaint has been investigated and the Trust has completed local resolution then the PHSO will make an initial review of the Trust’s complaints file and the patient’s healthcare records to decide whether PHSO investigation is necessary. If the complaint is fully investigated by PHSO then they have recourse to their own independent clinical experts and will report back to the Trust as to whether they uphold the patient’s complaint. If the complaint is upheld, the PHSO will make recommendations in its final report for remedy, ranging from a letter of apology from the Chief Executive, to an action plan that demonstrates what steps have been taken to improve systems and procedures to prevent the same events happening to another patient (and family), to an ex gratia payment. This latter payment is not compensation, as there is no admission of liability and the payment is made directly by the Trust (and not by the NHSLA) and is designed as a goodwill gesture. The amount is not calculated in accordance with any legal precedent.

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