Pioneering aftercare nurses land top award
They're the team of nurses who have been making a huge difference to cancer survivors all over Northern Ireland - by transforming how they rebuild their lives with a personal touch.
And now they're the toast of their profession after lifting a prestigious award in recognition of a pioneering project which has inspired a complete rethink on how patients are cared for as they face recovery.
The Transforming Cancer Follow Up (TCFU) project team was awarded the Nursing Standard Award at a special ceremony in London. The annual event identifies exceptional nursing professionals who have improved the quality of patient care through innovation and clinical excellence.
The TCFU team - which is made up of Mary Jo Thompson, Edel Aughey, Moyra Mills, Caroline Lynas, Annie Treanor and Martha Magee - has been the driving force behind moving away from a traditional "one size fits all" approach to aftercare, which has largely been based around routine follow-up appointments.
Cancer survivors have spoken of how coping with their recovery has been transformed by the new approach which is centred on a tailor-made package for each patient. For example, as part of the new 'recovery package', every patient within the new breast cancer programme has access to a clinical nurse specialist (CNS), who discusses their needs in the form of a care plan which they can take away with them. Patients are advised of the signs to look out for and told who to contact, should any problem arise. If necessary, a hospital appointment is scheduled without delay.
The TCFU programme has been implemented by the five Health and Social Care Trusts as the new model for breast cancer care. Progress is being made in aftercare for prostate and colorectal cancer.
The programme is funded by Macmillan Cancer Support which has invested more than £1m.
The charity's general manager in Northern Ireland, Heather Monteverde, said cancer care is undergoing radical changes.
"Without a complete transformation of the way people are supported after their treatment ends, there is no way patients will get the aftercare they so desperately need, whether that's practical help at home, financial advice, or even emotional support. The role of the Cancer Nurse Specialist is key to the success of the Transforming Cancer Follow Up programme," she said.
"I'm delighted that Mary Jo Thompson and the team of Macmillan project managers have got the recognition they deserve."
According to an evaluation report, completed by advisors PwC in February 2015, 58% of newly diagnosed breast cancer patients are now taking up what is known as "self-directed aftercare".
It also found patient confidence in the new system has been demonstrated by 12% of patients using the new rapid access system to highlight their concerns. The impact of the programme has resulted in a 28% fall in breast surgical review waiting lists, allowing clinical teams to spend more time with patients with more complex needs.
Case study 1: ‘It gave me chance to work things through’
Cancer-free 56-year-old Beatrice Ferguson is feeling confident about her future and making some big changes in her life.
This time last year she was undergoing surgery after a routine mammogram had shown a lump in her breast.
A course of radiotherapy left the Lurgan civil servant suffering from chronic fatigue.
“I had no energy and couldn’t concentrate on anything,” she said.
“My friends and family were very supportive but, once my treatment was over, they were expecting me to get back into my normal routine. I just couldn’t. Cancer had knocked me for six.”
Beatrice was keen to be part of the Transforming Cancer follow-up programme. She says having a cancer care review at her local GP practice means she’s not sitting worrying and waiting for a six-monthly or yearly routine hospital review appointment to come around.
In the meantime, she knows what signs to look out for which could indicate her cancer has come back and knows who to contact with any concerns.
What worried Beatrice most was work, which was why she was advised to consider signing up for a course for cancer patients. She decided to “give it a go”.
“I’m not into self-help jargon or anything like that. This was different. It gave me a chance to work through things in my head,” she said.
“I suddenly realised that, while I wanted to carry on working, I didn’t have to go back to my old stressful job.
“I wanted to volunteer and help in the Macmillan Information Centre. I wanted to give up smoking. I wanted to be in control of my recovery. And now I am.”
Case study 2: ‘Knowing there’s somebody there to deal with my concerns allows me to get on with my life’
Nicky Du Toit is confident the new system of aftercare works, now that she’s put it to the test.
The 54-year old PE teacher from Victoria College, Belfast, underwent surgery for breast cancer in 2013.
At the time, she says she didn’t really think what is known as ‘Self Directed Aftercare’ would actually mean for her, until she finished her treatment and had her last appointments with her consultant and clinical nurse specialist.
“I felt reassured having been shown how to check for signs and symptoms, which could indicate my cancer had come back. Particularly, when you realise that the majority of cases of recurrence are first spotted by patients — not picked up during routine review appointments,” she said.
“I think if I’d had to go back for a hospital appointment every six months or so, it would have been a constant worry, or at least a regular reminder of what I’d been through.”
Nicky went back to work on a phased return and was soon able to resume her active lifestyle. But then she spotted a mark and felt a slight “bump”, which didn’t go away.
“I phoned and went to see my GP and got an appointment to see a consultant. It was nothing but I needed that reassurance.
“As long as I know there’s somebody at the end of a phone who’s going to listen and deal with my concerns quickly, I’m happy. This system of aftercare works for me and helps me get on with my life.”
Case study 3: ‘I can now phone my specialist for advice’
Seventy-five-year-old Roy McCullough from Londonderry was diagnosed with prostate cancer 12 years ago. He is one of many people in Northern Ireland now living with cancer as a long-term condition.
Back in 2002, the retired grandfather-of-three had to travel to Belfast for two months of intensive treatment, after which he says he felt “abandoned”. He says cancer care and aftercare has been transformed over the past few years and patients now have more and more support to get back into their normal routine.
“Consultant oncologists aren’t available at the drop of a hat. You may only see them once a year,” he said.
“The rest of the time I know now that, if I have any concerns, I can phone my clinical nurse specialist and she’ll talk things through or get things rolling.
“I don’t want anyone thinking I’m on the phone all the time but knowing there’s an expert there to talk to is what’s important.”
Roy, who is widowed and has two daughters, believes the role of clinical nurse specialists is key to the success of the new system of aftercare and has joined a local support group for men going through treatment and living with prostate cancer.