Patients with Motor Neurone Disease (MND) have praised a unique service providing complementary therapies – plus the opportunity to make new friends with others who have the condition.
The Butterwick MND First Contact Group, brainchild of Anthony Hanratty, MND nurse specialist at The James Cook University Hospital, was highly commended in the Innovation in Primary Care category at the Bright Ideas in Health Awards, run by NHS Innovations North and the Academic Health Science Network for the North East and Cumbria.
The service, based at Butterwick Hospice in Stockton, offers therapies like aromatherapy massage, which assist with symptoms and side effects of medication such as leg cramp and others.
“It’s been more successful than we could ever have expected,” said Anthony, whose survey of patients in 2010 identified a gap in care services for those who were stable and living relatively well with MND.
“It really got to me that people who were living reasonably well with the condition but still requiring some sort of support couldn’t access it,” he said.“On paper, their cases weren’t complex enough or they didn’t have any immediate needs, but actually, when I spoke to those people, even if they didn’t have any physical needs, they certainly had psychological and emotional needs that weren’t being met.
“We found from talking to them they would like some kind of massage or complementary therapies. They wanted something practical.”
This prompted Anthony, along with Colin Pearson, Regional Care & Development Advisor with the MND Association, to establish the group.
Kath Murphy, a colleague at Butterwick Hospice, in Stockton, agreed it was a great idea, and she would give her time and staff over to the service on a Friday afternoon.
“Soon, we found patients were coming in for complementary therapies, and then sitting in the conservatory with one another – they were developing their own support group out of it,” said Anthony.
Mick Johnson, 60, a musician and retired police officer with MND admits he was initially sceptical when he first went for aromatherapy.
He was also apprehensive about mixing with other people living with MND and “seeing people in wheelchairs”.
However, the first time he tried aromatherapy, Mick, from Billingham, says he was a “total convert”.
“It’s not just the feel good factor you get from the treatment, it genuinely helps medically with the side effects,” he said.
“I suffer with swollen feet and the aromatherapy helps keep it at bay a little bit for the following week.”
Mick says the signs of MND were there for about a year before he was diagnosed and describes “tripping over” his own feet often.
“At work, I had to do a fitness test that involved running up and down the gym and although I didn’t feel any pain, I kept slowing down and didn’t feel comfortable with my balance,” he said.
“I went to the GP and he realised there was something wrong with the nerves in my legs. I was referred to a consultant and after extensive tests, I was diagnosed, but it took about a year.
“I have a non-aggressive form of the condition and it doesn’t come with any pain or discomfort. In fact it causes the opposite problem in that you can’t feel pain in the legs.”
Mick says the support he received from other people with MND also helped him overcome a “psychological barrier” that saw him refuse to use a walking stick.
As walking became more difficult for him, others in the group convinced him to try one – and he is now known for the many different sticks that have become his statement fashion accessory!
Anthony says other hospitals and MND teams are now taking the idea of a first contact group on.
Meanwhile, The James Cook University Hospital is soon to become the first centre for MND patients with its own community outreach practitioner starting in September.