Motor neurone disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.
MND can affect how you walk, talk, eat, drink and breathe. Although there is currently no cure, symptoms can be managed so that people with the disease can achieve the best possible quality of life.
Alan Clough was diagnosed with MND in December 2011. The following year he was referred to Woking & Sam Beare Hospices.
“I’ll admit, the first time I heard that word I thought ‘Oh-oh, you don’t come back out of there’. But in fact they came out to our home and arranged for me to have the equipment I’d started to need – things to help me breathe and be more comfortable,” Alan explained.
“I was very nervous when I came into the hospice for the first time. But they were so lovely, so welcoming and made me feel so comfortable. It was like being in a hotel!
“We travelled the short journey by ambulance and when we arrived some of the nurses were waiting outside the building to welcome us and help us inside – that’s a moment that will stay with Linda and I.
“While I was in, the staff came out to the house and arranged a bedroom for me downstairs at home with a profiling bed, special mattress and a hoist.
“From then on, they’ve been a constant part of our lives. Their community clinical nurse specialist comes out to see me regularly and I have visits from their physiotherapists and occupational therapist as well – we always look forward to seeing them.
“I also go in to the hospice day care for a few hours every fortnight to have an enjoyable soak in their Jacuzzi bath – which is the only bath I have access to now. Then, I’ll have some reflexology. I find it really helps me relax and I come home in the afternoon very chilled out.
“That day is also very important for Linda, it gives her a break from looking after me, which she really appreciates and gives the opportunity for the hospice to provide some care for the carer.
“I also know that they will support Linda for as long as she needs them. That’s real peace of mind.”
Woking & Sam Beare Hospices actively seek to support individuals with progressive neurological conditions and, with partners, have set up and developed a North West Surrey Palliative Neurological Multidisciplinary Team (MDT).
Dr Fiona Bailey, medical director at the hospices, explained: “We host and chair the MDT which includes other healthcare professionals and organisations from the area. The patients discussed have a wide range of complex neurological conditions including MND.
“With our skill base in the hospices and as a result of cross organisational working enhanced by the forum, we believe patients get better care as a result of this seamless way of working.”