Gill Stewart, the Lymphoma Association's first ever nurse specialist, is working hard to raise the profile of patients with this common type of cancer.
As the NHS is put under increasing pressure to provide more specialist care for a greater number of conditions, the existence of charity-funded nurse specialists is becoming more commonplace. One such nurse is Gill Stewart, the first of five nurse specialists to be funded by the Lymphoma Association.
Lymphoma is one of the least well publicised cancers. Compared with skin, lung or breast cancer it commands far fewer headlines and yet it affects up to 11,000 people in the UK every year from 16 to 95 year olds.
Ms Stewart's post, which began in November 2004 at Leeds Teaching Hospital NHS Trust, is one of five being set up by the Lymphoma Association to improve care to patients who have Hodgkin's and non-Hodgkin's lymphoma. Another nurse specialist is already in place at the Christie Hospital Manchester and a post at St George's Hospital in London is being set up.
As the first lymphoma specialist nurse in the Leeds area, she has had to develop her service from scratch, drawing on her vast experience. Ms Stewart previously worked in haemotology and oncology and as a research nurse working with breast cancer patients before becoming gastrointestinal nurse specialist in a ready-established service.
She felt that creating her own service was the best way to take her career forward. 'This role gave me an opportunity to set up my own service from scratch something that was quite exciting - moulding it the way I wanted.'
The post is funded by the charity for the first three years, after which the trust takes over the funding. A specific commitment to continue the post after this three year period has been given by the trust, so her job security is guaranteed.
'Because it's the first post that's been funded I get quite a lot of support and backing from the Lymphoma Association,' she says, 'I'm very lucky from that point of view.'
The service that Ms Stewart has developed provides support and information to patients at clinics spread across three sites in Leeds. Patients can often miss out on this type of support while they are going through the system. She sees her role as complimenting clinical treatment such as chemotherapy. Her aim is to be a central point of contact for all patients within the service, starting at diagnosis.
'All patients that come through [the cancer service] present at diagnosis. This can be quite a distressing time and patients are often quite frightened. Often when we give patients their diagnosis it's not something they know a lot about so they tend to need a lot of explanation.
'I normally go in with the consultant or registrar it means that I know exactly what they have been told. That's really quite important.'
Since taking up the post, Ms Stewart has made a great deal of progress. She has set up a telephone helpline for patients, which has been well received although naturally some people use the service more than others.
The helpline is especially beneficial to people who are kept within the service on a 'watch and wait' basis. These are patients who have been diagnosed with lymphoma but do not yet have any symptoms, who can miss out on the support provided to patients undergoing active treatment.
'They do say it's nice to be able to pick up the phone and speak to someone. It gives them a point of contact. If something is happening, like they are waiting for a scan, they can ring to make sure that things are happening.'
Others developments include several patient information leaflets and a patient satisfaction survey - developed in close negotiation with patient groups.
'Everything we do goes through a patient forum. It takes longer now to produce information and get it to the right level. We can't just write something and give it out,' emphasises Ms Stewart. 'Sometimes it can be a bit frustrating but it's a good thing if the information you are giving out is what the patients want.'
One of the biggest challenges that Ms Stewart says she has faced is getting herself and her service known across the three sites in Leeds. The sites are more than three miles apart and this has involved a lot of travelling, especially in the early days.
'It's quite challenging working across sites,' she admits. 'One of the things you have to do is to get your face known. When you set up your own service people have their own ideas about what your role entails. You have to go out and talk to other people in the service about how they see you and how they want your role to be.
'I've worked hard to get myself around the three sites. I have made quite good working relationships with the staff that I work with. You don't get that from sitting in your office.
For nurses who are going to be taking on such a challenging role themselves, Ms Stewart suggests seeking out as much advice as possible. 'Spend some time with an experienced nurse specialist - see how they plan their work, especially nurse specialists who have a similar role.'
'You have to also look at how things are going at a strategic level. It's not just about seeing patients, you have to have a knowledge of how the system works,' she adds.
She also advocates a large amount of reading and research. She has herself acquired a degree in cancer nursing and completed a cancer and counselling course. And despite the hard work required, Ms Stewart stresses that setting up a role such as hers from scratch has been immensely rewarding.
'We do get the majority of patients into remission and for some, we actually cure their disease. It's not all doom and gloom.'
Lymphoma - the facts
- Lymphoma - cancer of the lymphatic system - causes lymphocytes to either divide abnormally or fail to die, leading to a build-up in lymph nodes causing tumours. There are two types - Hodgkin and non-Hodgkin.
- Hodgkins lymphoma is detected by finding a cell called Reed-Sternberg present in the lymphoma under a microscope - a cell absent in Non-Hodgkins lymphoma.
- 1,500 new cases of Hodgkin lymphoma and 9,200 cases of non-Hodgkin are detected in the UK every year.
- Treatment is commonly either chemotherapy alone or a combination of chemotherapy and radiotherapy.
- Up to 95 per cent of people diagnosed with early stage Hodgkins lymphoma and 70 per cent of peple diagnosed at an advanced stage will be cured. Prognosis for non-Hodgkins lymphoma varies depending on sub type and the stage of detection.