Motor Neurone Disease (MND)

Peter & Olivia - Interview 46

Male
Age at interview: 62

Brief outline: Peter's daughter Olivia (aged 22) died within a year of developing pain and weakness in her leg, in late 2006. Diagnosis of MND remained uncertain, as aspects of her condition were unusual.

Background: Peter is a consultant (heritage projects), married, father of Olivia and one other grown-up daughter. Ethnic background/nationality' White British.

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Peter's daughter Olivia had completed her training as a nanny and had started her first probationary placement when she began to feel pain and weakness in her left leg, around Christmas 2005. By February she had given up her London placement, and got another placement with a family she already knew. She went to see a GP, who thought she was depressed, but also suggested she see an osteopath. When there was no improvement, she was referred to a consultant neurologist. The consultant suspected MND, but referred her for a second opinion as it was an unusual diagnosis for someone so young. (Olivia was only 22 at this stage).

By now (summer 2006) Olivia was having difficulty walking or getting upstairs. The second consultant was unsure if MND was the correct diagnosis, but after further tests ruled out other causes it seemed this was still the most likely explanation. The uncertainty over the diagnosis made it difficult to get the local community healthcare team near her parents' home mobilised. The local GP felt chronic fatigue was more likely, and everyone including Olivia wanted to believe it was something other than MND.

Olivia's condition was deteriorating so fast that it was hard to get equipment organised at the time she needed it. Her parents decided to pay for a downstairs bathroom to be installed, rather than wait for social services to arrange it. Peter and his wife often found they were having to do things for Olivia themselves and did not feel the professional services were able to act quickly and flexibly enough. The usual MND Association support groups also did not seem to be appropriate, partly because she was so young and partly because her symptoms were changing so fast.  

Olivia continued to weaken rapidly, although occasionally her symptoms seemed to improve before getting worse. A friend recommended Chinese medicine as part of their efforts to check for other possible causes. She showed a temporary improvement but then continued to weaken again, but her speech was never affected. In the last two weeks of her life her parents would have liked home nursing support, but none was available and nobody seemed to recognise quite how quickly her breathing was worsening. They were worried about how they would cope over the Christmas and New Year holidays. Olivia died at home on 29 December 2006. Looking back Peter feels strongly that the NHS and social services need to improve the coordination and responsiveness of services to support people with rapid progression.   

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