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Lesley's story: a case report, and discussion of challenges faced in end-of-life care for progressive neurological disease
  1. Peter Foley1,
  2. Justine Hampton,
  3. Andy Hampton,
  4. Ruth Hampton,
  5. Danny Oleksy,
  6. David Oliver2,,4,
  7. Belinda J Weller1
  1. 1Department of Clinical Neurosciences, Western General Hospital, NHS Lothian, Edinburgh, UK
  2. 2Department of Palliative Medicine, Wisdom Hospice, Rochester, Kent, UK
  3. 3Neurology Taskforce, European Association for Palliative Care, Milan, Italy
  4. 4Centre for Professional Practice, University of Kent, Kent, UK
  1. Correspondence to Peter Foley, Department of Clinical Neurosciences, Western General Hospital, NHS Lothian, Edinburgh; peterfoley{at}nhs.net

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Introduction

Lesley Ruth Hampton was 42 years old when she died in hospital from complications of multiple sclerosis (MS). Her story, related by her family in their own words, demonstrates many of the challenges faced in optimising care in the last years of life for thousands of patients living with progressive, incurable, neurological conditions.

We aim to reflect upon just a few of the challenges seen in Lesley's story, rather than attempt to resolve them. These issues may already be demanding and thought-provoking for many neurologists.

Lesley's story—in her family's words

Lesley was a feisty, fun-loving, sociable and immensely loyal character who made a success of most things she turned her hand to. She built herself a successful career in hospitality management, and worked very hard indeed, running some of the most well-known pubs in Edinburgh and Aberdeen.

Following visual problems in 1997, Lesley was diagnosed with MS at the age of 29. At the beginning it seemed to be benign MS, and her character was such that letting MS dictate to her was not going to happen! Her consultant advised her to enjoy her life—a candid piece of advice that she took care to follow.

Occasionally, something would happen that made her stop in her tracks. For example, a fall while crossing the high street gave Lesley quite a shock. But she just didn't let it get in her way. Over the next 10 years, Lesley developed some bowel and bladder problems, but she remained determined not to let MS get in the way of her life. We sometimes wondered, though, how much she acknowledged her problems—to others and to herself.

When Lesley was 40 years old, however, there was a rapid change in her MS. She developed a severe, debilitating tremor. She was told that she now had progressive disease. The tremor continued to worsen, and, to …

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