The Princess Royal Recognises Butterwick Hospice
On Friday 13th January 2017 The Princess Royal Visited Butterwick Hospice in Stockton to recognise the work the Hospice is doing in collaboration with the local group of the MND Association and the MND Nurse Specialist at South Tees NHS Trust to help patients and carers suffering the effects of this incurable disease.
Just prior to the visit Peter Barron, Butterwick's Ambassador and former Editor of The Northern Echo, visited Derek and Pauline Nicholson who attend the Butterwick MND First Contact Group every Friday. Here is Peter's interview.
EVERYTHING in the garden seemed rosy for father-of-two Derek Nicholson as he lovingly tended his plants at home.
He’d enjoyed a fulfilling career as a religious education teacher, serving for 41 years at Staindrop School in County Durham, and was looking forward to a happy retirement with his wife Pauline.
But, as he reached up to tie canes together to grow beans, he knew something was wrong. He discovered he couldn’t hold up his arm. At first, his doctor diagnosed a frozen shoulder but 18 months later, in December 2012, he was given the shattering news that he was suffering from Motor Neurone Disease.
MND is a killer with no cure. It attacks the nerves controlling movement so muscles no longer work yet the senses are usually unaffected. It can leave people locked in a failing body, unable to move, talk and, eventually, breathe.
Six people per day are diagnosed with MND in the UK, affecting 5,000 adults in the UK at one time, and Derek is one of around 300 sufferers in the North-East.
The disease kills a third of its victims within a year and more than half within two years of diagnosis. Professor Stephen Hawking is a remarkable exception, having lived with a slowly-progressing form of MND for decades. In contrast, much-loved comedian Ronnie Corbett died quickly last year after being diagnosed with the disease.
As he relaxes in the Butterwick Hospice at Stockton, after having an aromatherapy massage, Derek is acutely aware that there is no cure for him. His body is limp but his brain, and his sense of humour, remain sharp – his outlook pragmatic.
“I don’t have any ambitions to go to Mars. Seeing tomorrow is my ambition,” he smiles “I had a few sleepless nights when the diagnosis was first made but, hey, I can’t do anything about it so I live for the day and make the most of what’s left.”
Derek, 66, is one of 15 patients who benefit from the innovative and award-winning MND First Contact Group hosted each Friday by the Butterwick Hospice and funded by charitable donations. The group, now in its fourth year, was an innovative extension of the services the hospice provides. It operates as a partnership between the Butterwick, the MND Association, and the MND Care Centre at The James Cook University Hospital, Middlesbrough.
Anthony Hanratty, a MND nursing specialist who regularly supports the group, explains that the service was launched to fill a gap in the care of patients with a slower progressing form of the disease.
“Before this group was set up, those patients would normally have attended a clinic maybe every five months but we saw a need for them and their carers to receive weekly support, practical help, and to share experiences with others.”
Butterwick Hospice chief executive Graham Leggatt-Chidgey adds: “As a charity, our primary objective is to do the best we can to meet the needs of the local community and we are delighted that through this innovative model we are able to make a real difference to the quality of life of patients suffering from this terrible disease and their families.”
Indeed, the Butterwick initiative has been so successful, that 2017 will see it used as a national exemplar with the model being copied to begin with in Hull, Newcastle and Preston.
As far as Derek and Pauline are concerned, it has been a godsend and that’s what they plan to tell Princess Anne, the Royal Patron of the Motor Neurone Disease Association, when she visits the hospice on Friday.
“If we have worries, we can get answers and it’s so important to be able to talk to other families who are facing the same issues,” says Pauline.
Derek also can’t speak highly enough of the support he’s received from the likes of Clinical Day Sister Kath Murphy, who sits by his side as he talks.
“We know we’re going to be amongst friends – people who understand,” he says. “I can have a treatment, which makes me feel special and gives me a sense of well-being for a while, and Pauline can go off and have a break. We both get ‘me time’ and I can’t tell you how valuable that is.”
There is a common perception that hospices are merely places where people go to die. The truth is that they are much more than that – they are places which give people the chance to have a better quality of life for however long they might have.
Derek doesn’t know how long he has left but he’s certain that it will be more bearable thanks to his treasured Friday visits to the Butterwick Hospice and the MND First Contact Group.
As Kath helps him to his feet to take him for another treatment, he gives her smile. “They do a really good job here,” he says as she takes his hand. “So good there are times when they have to kick us out.”