YOU ARE gasping for breath. You cannot get enough air into your lungs. You panic, which makes it harder to breathe. You think you are going to die.
This is what it is like to have lung cancer or chronic pulmonary obstructive disease (COPD). To help patients cope with these terrifying attacks, respiratory nurse Tina Hargadon and Macmillan lung cancer nurse Joanna Lynch have set up the UK's first breathlessness clinic at Hillingdon Hospital.
The focus is on improving quality of life and educating patients about their illness. 'It's a non-pharmaceutical intervention', explains Ms Hargadon. 'We use a variety of simple techniques to help the patient control the disease rather than allowing the disease to control them.'
COPD is a progressive condition, which means that damage to the lungs is irreversible. At least 25,000 people a year die from the disease. Almost twice that number die from lung cancer.
Ms Hargadon and Ms Lynch had the idea for the clinic in 2004. They felt nothing was being done to help people in the end-stages of lung disease. 'Many patients felt that they were being dumped by the health care system. There was nothing more that could be done for them medically, so they were just left to get on with it,' say Ms Hargadon. Then the nurses heard about a study at the Royal Marsden in which patients were offered breathlessness care on a one-to-one basis. They used this as a model and created their own clinic, preferring to treat patients in groups.
'It was difficult to get everyone on board at first, but once we got them interested we held brainstorming sessions and put together a really good programme and a very strong team,' explains Ms Hargadon. They then applied for a grant from their ethics committee to fund the project for a year.
The team is multidisciplinary and there is input from a health psychologist, an occupational therapist and a respiratory physiotherapist, with support from respiratory and palliative care consultants. One of the main aims is to teach patients to relax, which helps to regulate their breathing. 'COPD sufferers often feel anxious and panicky because it's so frightening to feel that you're suffocating,' explains Ms Hargadon. Patients are given relaxation tapes and are taught breathing techniques, which they find invaluable.'
The programme runs weekly for four weeks and has an average intake of seven patients on each course. The nurses explain the disease process and advise on diet, sleep and coping with activities such as travelling.
There is a light-hearted feel to the sessions. 'One of the talks I do is on constipation because straining can cause breathlessness, and there's usually lots of giggling and joking,' says Ms Lynch. 'I can often be found with a patient explaining the intricate details of their bowel movements. It's nice to know that I can joke with them about it and get them to see the funny side.'
Most of the patients on the programme have COPD, but Ms Lynch is also responsible for assessing patients with lung cancer and identifying who would benefit from the group.
'The prognosis for a lung cancer patient is much shorter than someone suffering from COPD - on average they live for four months after diagnosis, although sadly it can be a matter of weeks,' she explains. 'Part of my job is identifying which patients should attend the group and assessing whether they are ready. It's a question of timing - they would be too upset for the first couple of weeks after diagnosis, then they have a lot of radiotherapy appointments, and by that time it may be too late. If they only have a few weeks to live the team will do a one-off visit and condense most of the course into three hours.'
Both nurses have a lot of experience in the respiratory field. Ms Hargadon has worked at Hillingdon Hospital for three years. Before that she was a nurse practitioner in the community. 'Respiratory nursing was something I fell into. I used to treat a lot of asthmatic patients and became increasingly interested in that side of things, to the point where I realised I wanted to specialise,' she recalls.
Ms Lynch trained in oncology and has been a Macmillan nurse for many years. 'One of the most common symptoms I saw when treating lung cancer patients was breathlessness and I always felt that there should be greater focus on helping patients deal with it,' she stresses. 'We were able to treat pain and coughing effectively but no one seemed to know what to do about shortness of breath. Then I heard about the study the Royal Marsden carried out and I thought it would be great to do something similar.'
The programme is important in fostering friendships between patients. 'They tend to feel very isolated and depressed, so being in a group really helps because they meet people who are going through the same thing as themselves,' explains Ms Hargadon. 'Many of them are very nervous at the start of the programme but as the weeks go by they really open up and literally pour out their feelings to each other.'
The clinic is life-changing. 'One thing I'm really proud of is that we got six patients off nebulisers,' says Ms Hargadon. 'They needed to use them at least four times a day, so it was a real achievement.' The clinic has also reduced admissions at Hillingdon and has attracted attention from other trusts who are interested in doing something similar.
Both nurses have gained a lot from the experience. 'As well as learning more about managing breathlessness it's been fascinating to work with people from other disciplines,' says
Ms Lynch. 'Our psychologist did a talk on the panic and anxiety cycle which was completely new to me, and I've learnt so much from the other team members too.'
The research grant has now run out and the team is working hard to secure more funding. They hope to expand the clinic so that people with other diseases that cause breathlessness can be treated. 'Our dream is to have a full pulmonary rehab/breathlessness programme which runs throughout the week' says Ms Lynch.
'That way, from the moment a patient is referred by a GP we can assess what stage they're at and deliver excellent care that's right for them'.
HOW TO SET UP A BREATHLESSNESS CLINIC
Link up with other respiratory nurses in your trust. Don't just stay in your immediate group.
Get people from other disciplines on board. This will enable you to adopt a holistic approach.
Look at different ways of funding. If you cannot obtain a research grant look at what is happening in your hospital and be opportunistic. Drug companies and cancer charities could be an option.
Develop your listening. Don't be judgemental, even if patients refuse to give up smoking.
Give patients information packs. This will help them consolidate what they have learnt.
Teach patients to relax. Even very simple techniques can be extremely effective.
Bear in mind the psychological aspect of breathlessness. This is not just a physical condition.
Keep sessions light-hearted. Encourage group discussion and use props and visual aids.