Health support group makes a difference
UNTIL six years ago little help was available for families in South Yorkshire trying to cope with the emotional, physical and psychological effects of a brain tumour.
But since Helen Lee started her role as Macmillan Clinical Specialist Nurse at Sheffield Teaching Hospitals in 2003, that has changed.
She has made a huge difference to the lives of many patients and their families as part of the Neurological Oncology team, which covers a population of over two million patients from across South Yorkshire, North Derbyshire and Lincolnshire who are treated at the specialist unit in the Royal Hallamshire Hospital.
Helen supports patients from initial diagnosis and beyond, offering psychological support and answering questions along the way.
"When a brain tumour is diagnosed it is like a rock being thrown into a pool. The ripples spread far and wide," Helen said.
"It isn't just the patient that feels the impact, everyone around them is affected – particularly the patient's main carer who can be a partner, a parent, a son, daughter or sibling."
In 2001 Helen helped to run small support sessions for patients and carers in her own time.
But, after securing support from a number of charities, she worked alongside Karen Holmes, manager of the Cancer Support Centre at the back of Weston Park Hospital, to successfully launch the Brain Tumour Support Group last October, which runs fortnightly to support brain tumour patients and their carers.
"It has been a great success," said Helen. "As much as my team can sympathise with patients and the carers supporting them, we cannot appreciate fully what they are going through.
"The support group is an opportunity for them to support each other and provides a safe environment to share experiences and concerns.
"The group discusses everything that impacts on their everyday lives.
We offer advice on maintaining a positive lifestyle, as a tumour can restrict many aspects such as driving, working and relationships.
READ MORE: 'You've got to get up in the morning and be positive'
"The sessions are varied – one week a guest speaker could be offering financial or occupational advice and another week we may have physiotherapy or complementary therapies."
Among the patients feeling the benefits of the support group is Dwynne Percival, aged 27, from Parson Cross, who has an incurable brain tumour.
"It was a big shock when I was diagnosed," said the dad- of-one. "I'd been healthy until then and I never thought anything like this would happen to me. I get on with it as well as I can."
Day to day life has many challenges as Dwynne's memory has been affected. He finds it impossible to shop for more than three items at once and does not feel confident enough to take his four-year-old son Connor out alone.
But he retains a positive attitude and is determined to do what he can to highlight the support of the group, which means so much to him and his family.
"When you come to the group you don't feel alone, you feel supported, and it is good to meet others in the same situation," he said.
Dwynne had to give up his job as a bus driver for Stagecoach and now works for the company as a customer support adviser.
He raised 600 for the Brain Tumour Support Group by dressing up as an Easter bunny on Good Friday.
Helen and her team are also constantly working to raise the group's profile and the importance of funding for research and care for anyone affected by a brain tumour.
She said: "I feel it is a 'poorer cancer'. There is not as much money for research because brain tumours are perceived as rare.
"I am delighted by the enthusiasm of the patients and the efforts they go to, to give something back."
FACTFILE
More children and people under the age of 40 die from a brain tumour in the UK than any other form of cancer.
As many as 65 per cent more women die from a brain tumour than from cervical cancer.
Brain tumour research is seriously under-funded and has not received the same attention as other cancers.
Very little is known about the causes – and therefore treatment – of brain tumours and, without more funding for research, experts will be no closer to understanding the rise in incidence and mortality.
Latest figures show that in 2006-7 Government funds dedicated to brain tumour research amounted to just 970,000.
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