The Management of Chronic Breathlessness Workstream Group was formed in response to the NHS Long Term Plan (launched in 2019) which set out a range of ambitions for the NHS over the next 10 years and included respiratory disease. There are six respiratory workstreams and the diagnosis and management of breathlessness are two of them. Our workstream deals with the chronic management of breathlessness, (which is breathlessness that lasts more than eight weeks).
Who belongs to the workstream group?
It's a multidisciplinary group made up of about 30 members including respiratory consultants, palliative medicine consultants, physiotherapists, respiratory nurses, cardiology clinicians, commissioners and GPs. We also have representatives from the voluntary sector including Action for Pulmonary Fibrosis, The British Heart Foundation and Asthma + Lung UK.
We have three task-and-finish groups within the group: one looking at clinical service development, one at information available for patient and carers, and the third looking at healthcare professionals and their education. The main workstream group meets every couple of months, it’s an active group. We are trying to achieve a lot and it takes a long time to effect change at a national level.
What is the main purpose of the group?
As a group we are trying to raise awareness of the issues around breathlessness and what we are doing to tackle it. A big part of this is education. We want to provide more information about how clinicians should be assessing breathlessness. We are also trying to encourage healthcare professionals to help patients by using the right words when talking to patients about breathlessness, referring them earlier for confirmation of diagnosis or management of their symptoms and helping them cope better by knowing what self-help methods are available.
We found there is little information available for patients and carers in terms of advice to manage their breathlessness, other than the information produced for patients by their relevant charities. The education of healthcare professionals is minimal, with only a small amount of training coming from one of the tertiary centres in Cambridge and some models from colleagues working in palliative care. Basically, we are starting almost from zero, in our attempt to improve this.
Tell me about the work you are doing at a service level
We want to encourage and support healthcare systems to bring together all the elements needed for effective chronic breathlessness management services. We need to become more effective at co-ordinating services for patients, so they get a better journey, and can access everything that's available to help them.
It’s also about trying to encourage people to work collaboratively with their palliative medicine teams and other teams involved with the management of chronic breathlessness, and we know this is challenging because of staff shortages and work pressures. I was lucky enough to have a palliative medicine consultant who has an interest in respiratory. We did a joint MDT together and then we formed a joint clinic together for breathlessness. It's about encouraging people to find out what other people are doing and having those conversations.
We recently attended the Dyspnoea conference and BTS Summer Meeting to talk about breathlessness - we're constantly talking about breathlessness as much as possible to raise its profile.
What other challenges affect the treatment of chronic breathlessness?From a service point of view, it’s important to have the right data to show the prevalence of chronic breathlessness at baseline prior to implementing any interventions or changes in pathway/service.
We have an idea of the prevalence through people doing spot audits/research, but we don’t have any live data that is currently easily accessible.
This has led to us campaigning to encourage clinicians to code ‘chronic breathlessness for more than 8 weeks using one specific SNOMED code 870535009 (SNOMED is a structured clinical vocabulary for use in electronic health records) to record any patient with chronic breathlessness, whatever the cause.
If a patient has COPD, breathlessness can be coded at a patient’s annual review using a Modified Medical Research Council (mMRC) dyspnoea score, but this is only for patients with a definitive diagnosis of COPD.
Of course, getting one specific code for chronic breathlessness is one thing, but getting it out there and encouraging clinicians to use it will be another challenge in itself!
What other factors do you think will drive change?
We are trying to talk to regions about how they work in a collaborative way to develop a breathlessness service. Most people have the right elements needed for a service within their region but need to work collaboratively to bring all these elements together.
Within the group, we have been discussing the feasibility of a Breathlessness Awareness programme – a public health type forum where people could be advised about the type of breathlessness symptoms and encourage them to discuss with their GP. To complement this, we want to contribute questions to the annual patient survey that Asthma + Lung UK do, to find out about their experiences of breathlessness and the management and diagnosis of breathlessness.
Tell us a bit more about the videoThe video formed part of the BTS Summer Meeting mini-short course on the management of chronic breathlessness and was shown to delegates during our session. We wanted to show breathlessness from a patient’s point of view and the impact the condition has on people’s lives. It features two people with experience of breathlessness – a lady who has asthma and a gentleman with pulmonary fibrosis – in a conversation facilitated by someone who has undergone lung transplantation.
We wanted to show clinicians how people feel about and experience breathlessness, the struggles they face in getting the right support and the impact breathlessness has on their day-to-day lives.
As well as highlighting patient perspectives, we want clinicians to think about how we should be assessing breathlessness and how they could bring all the different aspects together to provide treatment.
What’s next on the horizon for the group?We are delighted that NICE has agreed to support the development of a chronic breathless management guideline (timeframe to be determined) and there is the potential for developing a training module with Health Education England. We are at the point where things are beginning to move – making progress with education and coding and getting our baseline right.
Our biggest challenge remains to find ways to bring the right service elements together, but we are working on it!
Watch the patients’ experiences of breathlessness video on Vimeo.
Photos from Hull York Medical School’s ‘Bringing breathlessness into view exhibition’ accompanied the video at the BTS Summer Meeting. View the exhibition on their website.