About 5,000 people in the UKhave motor neurone disease, which causes wasting of muscles, leading to severe and unpredictable forms of paralysis. Three people die of it every day.
It is a very difficult condition to manage. With MND, patients never really become an expert in their own disability – changes occur too rapidly.
Around the UK, professionals meet regularly to discuss people in their care, in order to provide a high quality service. The Kingston MND Partnership, south west London, includes occupational therapists, social workers, the MND Association regional care adviser and other health professionals.
The case of Charlotte Simpson* illustrates the challenges we face. Charlotte was referred to social services for an occupational therapy assessment. She had just bought a bungalow and wanted some advice about how to make it suitable for her. She was still managing most activities well, although her speech was slurred. We provided the advice she wanted and kept her case open for regular reviews.
About nine months later, Charlotte noticed that some activities were becoming more difficult as she started to lose strength in her arms and legs. Wanting to plan ahead, Charlotte asked for information about how she might get help to support her to live at home in the future.
At an MND partnership meeting, the team agreed to an environmental control system, so that Charlotte could maintain some independence with the likes of operating lights and using the telephone.
Over the following months, Charlotte’s abilities steadily declined. A care manager put together a package of care to enable her to remain at home. Suddenly, her condition changed quite dramatically. She was finding it difficult to stand from her bed and her swallowing got worse.
Charlotte was admitted to hospital for a gastrostomy (a small feeding tube into the stomach), so that she could get nutrition without the risk of choking. When she returned home, she needed a hoist to get up. The MND partnership group agreed that she would benefit from a mobile arm support.
During the last couple of months of Charlotte’s life her muscles controlling her breathing began to fail. She died peacefully in hospital.
Charlotte’s case showed us that we should assess for a mobile arm support at the earliest opportunity, so equipment can be supplied while it is useful. It also showed that we should discuss end of life decisions early on, involving the community palliative care team while the person is able to communicate well and before a crisis point is reached.
* Not her real name
James Lampert is senior occupational therapist, Kingston Council.