interviews

The role of specialist societies in the treatment of rare conditions

Professor Mike Morgan, chair of the British Thoracic Society, talked to NHE about the ‘Cinderella’ of lung diseases – bronchiectasis – and how specialist societies can produce guidelines for treatment of rare diseases that might fly below NICE’s radar.

Bronchiectasis is a little-known, littlerecognised lung condition that passes under the radar of patients and clinicians alike. It suffers from a dearth of research and treatment options due to its low profile and is often misdiagnosed as COPD.

The British Thoracic Society (BTS) is hoping to change this, with the launch of its new quality guidelines to help doctors correctly diagnose and treat the illness.

Those who suffer from the chronic condition do not create a large burden on the health service; there are few deaths and hospital admissions connected with bronchiectasis. Instead they have been faced with a lifetime of suffering – too low-key to be noticed by key organisations such as NICE – but which the entire profession could do more to care for.

NHE spoke to Professor Mike Morgan, chair of the BTS, about creating new guidelines for the condition, helping to raise awareness and increase understanding of bronchiectasis.

In the small print

Prof Morgan described bronchiectasis as a common but unrecognised condition. He said that the quality guidelines were meant to provide the type of clinical advice normally dispensed by NICE, but for less well-known specialties.

“We have clinical guidelines and NICE quality standards for the common things like COPD and there’s one coming for asthma, but they’ve never done one on bronchiectasis and they’re very unlikely to because it’s quite small print for them. But in fact it’s a very common condition – and there isn’t much of an evidence base to treat it.”

Bronchiectasis is actually the third most common chronic lung condition, causing regular coughs and flare-ups, requiring antibiotics and physiotherapy treatment. But since it does not lead to many deaths or hospital admissions, it remains relatively unknown.

“There isn’t a cure for it and it’s something that doesn’t kill people so it just sort of drags on and it’s pretty miserable. It hasn’t achieved any national prominence to develop any NICE guidelines and I can see it would be way down their shopping list,” Prof Morgan acknowledged.

“It’s not a very well-researched field, there isn’t any drug industry sponsored interest; for conditions where there aren’t drug solutions, the evidence is often quite slim.

“So for people who are unlucky enough to have a chronic condition where there isn’t any effective drug therapy, the evidence isn’t there to support it. That’s a real catch-22, because the research isn’t generated by the people who have got the money, via the pharmaceutical industry.”

The adoption of these standards will reduce variation across the board, Prof Morgan said, which will inevitably improve care.

Translating quality

Publishing guidelines is only the first step for the BTS, and Prof Morgan described the campaign to take the guidance from simple advice to ensuring a better a quality of care.

He said: “Having guidelines requires a health professional to read them and practice what they say. That doesn’t always translate so it’s important to have further steps in the quality agenda.”

Describing a good service through guidelines is as relevant to the health professional as it is to the patient, Prof Morgan said, and pointed out the lay guidelines available to help the patient recognise whether or not they’re receiving the best care.

To encourage clinicians to take up the guidelines, he suggested that patients could provide pressure, and that commissioners could integrate the standards into service contracts.

He said: “You can’t rely on people to spontaneously read these things; you get bombarded with a lot of stuff.

“I think the pincer movement for ensuring these things are acted on is firstly to ensure that patient organisations distribute them, so patients with bronchiectasis know what to expect and make sure they’re available to patients.

“It is after all a consumer world and patients should approach their provider with an expectation of what they should be receiving and why they do or do not get what they should do.

“The other thing is to look through the commissioning quality agenda. Things like COF (Commissioning Outcomes Framework) and CQUINs (Commissioning for Quality and Innovation payments) can support good practice in this area by setting standards and ensuring people keep to it. That’s one area.

“The other is looking at the care bundle model, where you can set a CQUIN around a care bundle for a particular condition and demonstrate to the commissioners that you have achieved a sufficient quality standard in those episodes of care, by signing off and taking responsibility for the quality standards.”

Prof Morgan noted that commissioning care for bronchiectasis should involve some specialised areas, within a multidisciplinary team. This means some of that will be decided outside the CCGs, perhaps in regional centres.

Misdiagnosis

A major aim of the campaign is to raise awareness, both inside and out the health service, about bronchiectasis. He said: “It is a bit of a Cinderella condition: it’s silent, but it’s really troublesome to people who’ve got it.”

Prof Morgan explained that the condition is often misdiagnosed as COPD, and recommended that any patient with a persistent cough and a recurrent need for antibiotics should “trigger a thought in the GP’s mind that they might have it”.

He suggested the guidelines for bronchiectasis should be used as “a model for other rarer conditions, where the specialist societies like ourselves will take the lead for the quality agenda that NICE can’t ever take up.”

There will be similar areas where the BTS can do that, he added, and reiterated that the patient should be driving choice for treatment of their condition.

Balancing act

For conditions like bronchiectasis, Prof Morgan suggested that specialist opinion may be valuable, but acknowledged that this would not always be possible.

He said: “In the future, we’ve got what will be a difficult balance between generalists and specialists – the acknowledgement that much of the work will be done by GPs or primary care but they have to be aware too that there are rare conditions where expert contacts will benefit the patient.

“If you’re a patient you want to see the expert, you don’t necessarily want to be fobbed off with a general opinion even if they can manage it. That’s going to be a real tension in the future. If you offer people choice but deny them access, that’s going to be a tricky situation.

“But the consumer is in the driving seat and we want people to be aware of what should be available for whatever condition they’ve got, once it’s correctly diagnosed.”

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