Support for people with COPD should be targeted so that individuals develop the skills they need to manage their condition, says Carol Liddle

When I read research papers on chronic obstructive pulmonary disease (COPD) and its progression, I find it funny how every study assumes that we’ve had a continuous relationship with our primary and specialist teams. Or that we’ve all received the same level of input from healthcare professionals and the same pattern of interventions. Reading this new research paper in The BMJ, I had similar thoughts again.

The reality is that often different teams and specialists don’t even talk to each other, let alone us, the patient.

Increasingly, the respiratory world is recognising this. For example, the fact that NHS England is going to focus on prevention, early and accurate diagnosis, and pulmonary rehab as part of the Long Term Plan (when previously there had been no comprehensive national plan) is a step in the right direction. At this year’s ERS respiratory conference in Madrid, there were also numerous calls for more integrated services, with examples of this need being highlighted and championed throughout.

Until full assessments are less of a postcode lottery, and there’s less variation in referrals to respiratory specialists or other meaningful interventions such as wellbeing activities, then outcomes will continue to reflect this inequality. Ultimately, COPD is a very individual condition and we can delay its progression to some degree by lifestyle choices and good self-management. I think good education on your condition, medical support, and signposting to proven beneficial interventions plays a huge part in slowing its progression from the outset. It’s vital that support is targeted so that the individual person learns how to help themselves from diagnosis onwards, along with a supportive and constant medical team.

COPD typically has a fairly long path of progression so you need to build a strong relationship with both primary and specialist medical teams from the outset. For me, nothing beats being referred to a specialist respiratory team—especially if preliminary tests have established that we are in the severe stage. 

Breathlessness is a big issue for people living with COPD, whatever scale it is measured on. When you’re living with COPD it’s so very easy to give up, when every single action makes you breathless. It’s really difficult to stay motivated. This is why at every stage of the disease it’s vital that we learn how to breathe more efficiently and how to keep moving. It’s such an individual thing that I personally don’t see the standard questionnaire as a reliable source of assessment or measure of prognosis.

I would argue that a fully validated baseline exercise capability obtained from either a pulmonary rehab course or walking shuttle test is the only way of assessing our exercise status, but this requires an accredited course of pulmonary rehabilitation. As well as giving data, these courses also give the patient huge insight into their condition and a steer on how to keep active, eat more nutritious food, and how to breathe more efficiently. In my opinion, these courses should be offered at diagnosis and beyond. It’s often said that it’s difficult to get patients with COPD to take up pulmonary rehabilitation (if it’s even offered), but perhaps by making this part of the initial diagnosis journey, more people would make use of it and realise the benefits. This would also give medics a validated assessment of our individual exercise capacity, which is much more helpful than a tick box question asking, for example, how breathless do you feel while walking on a scale of 1 to 10.

Of course, smoking is a major cause of COPD, and I would agree that if you are smoking, stopping has a huge impact on prognosis, but I think perhaps it would be useful to also note the patient’s home and working environment. Do they live or work by a busy road? Do friends and family smoke? Do they have unsuitable heating sources? Recent findings about wood stoves, for example, point to these having a similar effect to smoking on our lungs.

I agree with this research paper’s finding that many of the prognostic models we have for COPD are lacking in certain ways and that some markers have more relevance than others. Yet in terms of how we monitor the disease’s progression and patients’ outcomes, it’s important to treat the person, not just the COPD. For example, if clinicians could also consider our mental wellbeing and confidence with the medicines we use. Exercise and medicine interactions can impact on both our COPD and contribute to other comorbidities developing or worsening, which is why patients would benefit from a more proactive, interactive care pathway.

If we accept that COPD is a multivariable condition, then surely we need to look at the multivariable lifestyles of patients and the skills they have to manage their condition.

Carol Liddle lives with severe COPD (emphysema). She is a patient panel member on the National Asthma and COPD Audit Programme (NACAP), which is collecting data on hospital stays for exacerbations and referrals to pulmonary rehab services. She is a patient expert on behalf of the British Lung Foundation and attends conferences and breakout meetings for various projects where a patient perspective is requested. She is also a member of the COPD Foundation’s global advocacy group and presented at their conference in Milan in 2017 on the isolation and potential decline in patients without meaningful access to activities. Twitter @LiddleCarol

Competing interests: Nothing further to declare.