“The best care I have ever experienced”
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 for MND, symptoms can be managed to help you achieve the best possible quality of life and Woking & Sam Beare Hospices would like to highlight how we support MND patients with this disease within our community. People perceptions tend to be that Hospices treat patients with cancer and only at the very end of life, but Hospice care is so much more. We provide care in people’s homes, in the hospice building, in our day care unit, for many other life-limiting conditions and over long periods of time.
Alan Clough explains what Hospice care means to him.
“It was 12 months after I was diagnosed with Motor Neurone disease that it was first suggested that my wife Linda and I talk to the hospice. 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 and Linda coped well at home for over a year, but after a couple of falls, we advised that Alan come into the Hospice while we sorted out more support equipment at his home.
“I was very nervous when I came in 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, their staff came out to our 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. The nurses are always pleased to see me and we have a good old natter and a laugh, which I really enjoy. 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 know all the implications of having MND. It’s a progressive and fatal condition and there’s no getting away from that. The hospice staff have been so supportive in allowing me to talk about what I want to happen when the time comes. They are understanding and compassionate – but wholly professional. I’ve been able to make difficult decisions in a way I feel comfortable with. I have that security of knowing I’ll be looked after in the best possible way; but I also know that they will support Linda for as long as she needs them. That’s real peace of mind.
I’m talking publicly about my experience like this because I want everyone to know how incredibly lucky we all are to have a local hospice to care for us. Their care is the best I’ve ever experienced – and it’s free. Now, as they try to create their new service I really think that we must all get involved and support them if we can. Not for me – but for all those who will come after me who will need their wonderful care.”
You can help us support more patients like Alan, by donating here