Motor Neurone Disease (MND)

Bev - Interview 47

Age at interview: 40

Brief outline: Bev's mother died about a year after developing speech and swallowing difficulties and being diagnosed with bulbar onset MND, aged 72. Her family were unhappy with many aspects of the care received.

Background: Bev is a community and education consultant, living with partner. Ethnic background/nationality' White British.

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Bev's mother started developing speech and swallowing difficulties about 18 months ago, in early 2006. Bev was asked to go with her to the appointment at which she was told her diagnosis, and felt it was not sensitively handled. Although her mother had suspected she might have MND, for her daughter it was a complete shock. She was unhappy that there were medical students present, and she felt they were told the diagnosis very bluntly. She felt overwhelmed by the amount of information given to them by the MND care co-ordinator after they had seen the consultant. She would have preferred to go away and let it sink in, and be given a number they could call when they felt ready for more information. They chose to have a second opinion, which took four months to arrange.

In the meantime, the family decided to arrange some trips abroad for their mother while she was still able to enjoy travelling, although Bev found it quite stressful to organise. After returning from a second trip, her mother decided to have a PEG and the woman performing the procedure was excellent. However, other staff were less helpful, and did not seem to listen when they were told that lying flat was distressing for her mother because it made her choke. She was shocked and upset when she was shown what she would need to do to maintain her mother's PEG. The district nurses did not know enough about how to care for someone with a PEG. For Bev, becoming her mother's carer was not only practically demanding but also very emotional to have their roles reversed.

Her mother eventually moved into Bev's home. She felt she and her partner had to coordinate her mother's care, and fight all the time to get the right equipment and services. They tried paid carers, but felt most of the staff who turned up were inexperienced and insensitive. After much discussion with the agency they managed to get two regular carers they were happy with.

Her mother had a day a week respite care at the local hospice. Again, Bev felt some of the staff and volunteers behaved insensitively. She and her partner reluctantly agreed to a week of respite so they could take a holiday, but felt her care during that week was managed very badly and her mother's condition deteriorated significantly. Having previously planned that she would go to the hospice for end-of-life care they decided to manage at home instead, but arranging adequate continuing care was very difficult and distressing. They had a string of agency nurses, district nurses, Marie Curie nurses and care assistants, some of whom were better than others. Her mother was given increasing doses of morphine, which Bev felt made her quite agitated. She died at home of respiratory failure. She, her sister and their partners planned a beautiful and moving funeral service involving a small group of people from different stages of her mother's life.


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