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Motor Neurone DiseaseArrow
Bulbar onset
Sue - Interview 31  

Sue - Interview 31

Age at Interview: 63
Sex: Female
Age at Diagnosis: 62
Background: Sue is a retired business administrator, married with 4 children aged 37, 33 and twins aged 22. Ethnic background/nationality: White British.
Brief outline:Sue was diagnosed with bulbar onset motor neurone disease less than a year ago (2006). She is now unable to speak and uses a laptop with voice software. Her arms and legs are still relatively strong.

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Her hospice is a place of kindness, giving practical and emotional support, including home visits, advice on benefits and making a Living Will. [Voice software interview].

 



The local Hospice has been marvellously supportive; within a matter of weeks after diagnosis I had a call from the specialist nurse for palliative care at the hospice. She described herself as a 'cage rattler'. She came to visit, and has done so every three weeks to give medical and moral support. I very quickly learned about the ethos behind the hospice and why I had been put under their care. It is NOT a place to die, as I had thought. It is a place where there is immense kindness and support for anyone with a life-threatening condition. They offer emotional support to the patient, their carer and families, and respite care and, ultimately, palliative nursing care. It was a revelation to me that they work in conjunction with the whole patient team - the specialists, the GP and community nurses. The nurse suggested I have a weekly visit at home from the hospice's aromatherapist to help my weak face muscles. Then she arranged for a representative from their Welfare Department to talk to us about finance and a Living Will, which is something I was keen to set up. The Living Will is put into the Emergency Services database, so that if they are called out they will be informed of my wishes regarding resuscitation. These are all areas of the patient support network at the hospice. The welfare assistant was able to 'spearhead' the benefit system through the maze of forms and jargon, which would have defeated us. Because the applications are made on our behalf by the hospice, the Pensions Department hurry the decisions through. All the benefits have kicked in and were backdated some months.
Jonathan Miller - Motor Neurone
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