A personal experience of The John Taylor Hospice
Margaret Nipper would be the first person to admit that the idea of visiting a Hospice was frightening.
When specialists told her she had motor neurone disease in 2012, Margaret was already facing the huge changes in her life brought by a palliative diagnosis. The word ‘Hospice’ seemed like a step too far.
But she would also be the first to admit that once she overcame her initial reluctance, Margaret, aged 64 of Boldmere, realised that staff at Birmingham’s John Taylor Hospice helped make every moment matter.
Within the Hospice’s community teams there are community nurse specialists, dietitians, occupational therapists, a social worker and patient and family support worker, physiotherapists and pharmacists – all dedicated to making every moment matter for the hundreds of people they care for.
It was a tightness and restricted movements in her jaw which led Margaret and her husband, 63-year-old Roger, to specialists who told her she had developed MND.
A progressive disease which results in weakness and wasting of the muscles, MND can affect every level of movement. There is currently no cure and no definite pattern of progression of the disease – different people can develop different symptoms at different times.
As Margaret experienced symptoms of reduced mobility, difficulty with daily living activities, neck and back pain she was advised to access the support of specialists at John Taylor Hospice. Although initially nervous, she has found the information and support provided to be very reassuring.
“Contacting John Taylor Hospice was first mentioned to me by a specialist but I didn’t want to go there as I was scared,” recalls Margaret. “I realise now that it is also about help and support and not that you are about to die.”
Among the Hospice specialists supporting Margaret are neuro palliative care nurse specialist Louise Stone, occupational therapist Lesley Connor and clinical specialist physiotherapist Vis Ramasamy. While most of the team visit Margaret at her home, she also visits the Hospice once a week to see the physiotherapist for pain management.
“All of the staff I have seen from John Taylor Hospice have been very helpful,” she says. “Louise has reassured me and given me advice about medication and self-help.
“Lesley got equipment for us and has helped us apply for help from the MND Association. And Vis has been helpful with pain relief. He is very caring and professional.”
Vis says a combination of physiotherapy, acupuncture and medication can be an effective method of combating the pain which can occur with conditions like MND.
“It is really a gentle physiotherapy techniques and acupuncture which helps to relieve pain and it can help ease some activities which can become a struggle,” he says. “It helps to maximise quality of life.”
Vis is trained in medical acupuncture and has combined physiotherapy and acupuncture in the treatment programme for Margaret.
“Margaret is responding quite well to the acupuncture and physiotherapy,” he says. “We are really focussing on managing the symptoms of pain.”
Margaret is grateful for this support. “I had tried acupuncture before and so I was all for it when Vis suggested it,” she says. “And if you have it privately it is very expensive.”
For Margaret, who is mum to two grown-up children, her decision to call on the support of John Taylor Hospice was the right one. “I would encourage anyone to come to the Hospice when it is suggested,” she says. “I feel reassured.”
www.johntaylorhospice.org.uk. 0121 465 2000.