Rehabilitation can get patients with lung disease back in action and enjoying life. Janet Wright looks at the options.
There are now 230 Breathe Easy groups in the UK
When a patient says you’ve given them their life back, you know you’re doing something right. This is what physiotherapist Ruth Barlow loves about pulmonary rehabilitation (PR) for patients with chronic obstructive pulmonary disease (COPD).
‘With chronic conditions, people cannot be cured, so it is easy to feel nothing can be done. When patients attend rehab they become fitter, more able to do their activities of daily living, more able to self-manage,’ says Ms Barlow, who is pulmonary rehab lead with Provide Community Interest Company, a social enterprise delivering health and care services.
Researchers are no longer even asking if PR works better than usual care for people with COPD. The case has been conclusively made, according to an independent Cochrane review (see Physio Findings, page 18). In just a few weeks, patients can become fitter and less fatigued, walk farther, breathe more easily and, importantly, feel more in control of their symptoms than before.
Programmes vary in length and content. But the basis is at least four weeks’ regular aerobic exercise sessions, under the care of a specialist trainer.
Ms Barlow runs PR in a dozen venues in different parts of Cambridgeshire and Essex. Patients are encouraged to attend twice a week for seven or eight weeks. They are assessed at the beginning and end of the programme, with a walking test and quality of life scale among other outcome measures.
‘You feel a great satisfaction when people reach a goal, such as walking to the local shop,’ says Ms Barlow. ‘One patient told me that after rehab she had the confidence to go out – she just needed that support to see that she could be more mobile. She said she felt she had her life back.’
The National Institute for Health and Care Excellence (NICE) calls for PR to be made available, and easily accessible, ‘to all appropriate people with COPD’.
Guidelines produced by the British Thoracic Society (BTS), accredited by NICE, state that PR should be offered with a view to improving exercise capacity, breathlessness, health status and psychological wellbeing (Bolton CE et al. Thorax 2013).
Yet the Cochrane researchers noted that PR ‘has long been underused in patients with COPD’. Why is such a valuable treatment not available for all those who need it?
‘It depends whether commissioners want to pay for this service,’ says Helen Jefford, specialist physio and PR lead on the COPD team at Greenwich Community Health Services in south east London, part of Oxleas NHS Trust.
Both provision and quality of PR vary around the country, she says. ‘We’ve got minimum standards across the country so we should be following these. But people aren’t always getting the basics right. There’s huge variance across the country depending on resources, experience of the team, what commissioners are prepared to pay for.’
Mrs Jefford’s one of an 18-strong specialist team in Greenwich, which has invested heavily in pulmonary rehabilitation. In contrast, she says, some other areas farm their services out to private companies that run them on a shoestring budget with hardly any staff.
‘It drives me mad,’ she says, ‘because we know that PR works and it’s evidence-based.’ Even in areas with reasonable PR provision, she says, many patients aren’t being referred. Sometimes this is because healthcare professionals don’t know what is available.
That’s something the British Lung Foundation (BLF) has addressed. It has developed a wallet-sized ‘COPD passport’, a 10-point plan to help patients to engage with GPs and healthcare professionals. However, not all patients take up a referral, and COPD symptoms such as breathlessness may deter some.
This is something Ruth Barlow addresses before anxious patients start a course. ‘I explain that I know patients often are fearful of their breathlessness and that they will be treated as an individual, with the exercises tailored to their needs,’ says Ms Barlow. ‘Some patients find visiting the class helps, others want to talk to people who have attended the classes. So I try and arrange what suits each one.’
She has also introduced cognitive behaviour therapy to her classes to help patients cope and make the changes they need. PR programmes should supporting people in behavioural change, Mrs Jefford agrees, for example helping them set goals. ‘Behavioural change is a tricky thing,’ she admits.
Then there’s the question of encouraging patients to stay with the programme even when they’re not feeling up to it. Fatigue is a common effect of COPD, along with frequent debilitating infections. ‘It’s difficult for patients to stay motivated when they’re unwell so often,’ says Mrs Jefford. ‘We’re lucky here in Greenwich, we’re part of a team so nurses look after people when they’re unwell. Then they come to us when they’re well enough for rehab.’
Taking the next step
The BTS guideline recommends: ‘Patients graduating from a pulmonary rehabilitation programme should be provided with opportunities for physical exercise beyond their rehabilitation programme’ and encouraged to continue exercising.
Ms Barlow offers her patients a choice of options for exercising in the community. ‘We access the different exercise groups, such as walking groups, and in some areas there are follow-on classes for patients who have attended pulmonary rehab,’ she says. ‘In Mid Essex we can directly refer to the health trainers who have a good knowledge of all the activities available to patients and they work closely with our team.’
However, says Mrs Jefford, the chance of follow-up care depends very much on where you are. Her patients can use sports and leisure centres run by the non-profit Greenwich Leisure Ltd.
‘There’s a lovely menu of choices for people who come to us,’ she says. ‘But not every PR provider has anywhere for patients to go on to. We know what best practice is, but what’s available is a postcode lottery.’
That’s where the BLF’s Breathe Easy groups come in, as the emphasis in health education shifts from set exercise to an increase in everyday activity. Having an invisible disability deters many COPD patients from socialising or taking part in physical activities. In a Breathe Easy group, everyone’s in the same boat.
Run by members with back-up from the BLF when needed, there are now 230 Breathe Easy groups in the UK, providing companionship and psychological support. Monthly meetings include talks, health advice, activities or outings. New members are welcome: find out more from the BLF.
‘People with COPD often feel very socially isolated, so Breathe Easy groups are a fabulous place to signpost people to,’ says Mrs Jefford. ‘We’re really pressing not just exercise but physical activity, and Breathe Easy plays a vital role encouraging people to be active.’
- British Lung Foundation:
73-75 Goswell Road
London EC1V 7E
Tel: 03000 030555
- Breathe Easy groups
- COPD Passport
- NICE guidelines
- British Thoracic Society guideline
- Guidelines and quality standards
- Want to know more about respiratory physio? Visit the website of the Association of Chartered Physiotherapists in Respiratory Care
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