Asthma Outcomes — [Steve McCabe in the Chair]

Part of the debate – in Westminster Hall at 10:06 am on 7th December 2021.

Alert me about debates like this

Photo of Liz Twist Liz Twist Opposition Whip (Commons), Shadow Minister (Scotland) 10:06 am, 7th December 2021

It is a pleasure to serve under your chairmanship, Mr McCabe. I congratulate Jim Shannon on securing this important debate. It is incredible that the subject of asthma has not been discussed more often in the House, given that it affects to so many people.

I would like to start with some key statistics on severe asthma: 5.4 million people in the UK currently receive treatment for asthma, including 5,282 people in my constituency of Blaydon, where we have a sad history of respiratory conditions, including asthma, affecting the lives of too many people.

Around 200,000 people in the UK have severe asthma, which is the most debilitating and life-threatening form of the condition, and which does not respond to conventional treatments. Four out of five people with suspected severe asthma, who should be referred to a specialist, are not getting the care that they need; 46,000 people are missing out on life-changing biologic treatments.

The north-east region has the highest oral steroid prescribing rate at 20%, prescribing two or more courses of oral corticosteroids in the previous 12 months compared with the 14% average. As we have heard, oral steroids can have very nasty side effects, including osteoporosis, weight gain and diabetes.

Severe asthma has a devastating impact on every part of someone’s life. Living with severe asthma is so much more than asthma attacks and occasional hospital admissions. People may feel isolated, lonely and scared, left without hope or the right support. The covid pandemic has clearly shown that for many people that is a very real concern, leaving many of them in isolation.

One person with severe asthma reflected on how it impacts on them:

“It’s really restricted me. I have suffered because there was a point when I refused to leave the house… So, it really affected my work, my lifestyle. Meet your friends, just even speaking to them, I would get really out of breath. I was trying to avoid all of that.”

Without specialist treatment and support, people with severe asthma end up in a never-ending cycle of emergency trips to hospital, relying on toxic oral steroids, which can have very nasty side effects. It has now been shown that as few as four courses of oral steroids over a lifetime can be associated with adverse effects. Another person with asthma, speaking to the British Lung Foundation and Asthma UK, said:

“Steroids made me able to breathe but they ruined my life. The insomnia, the racing thoughts, the weight gain. I have lost all confidence and self-esteem.”

Asthma UK’s recent survey of more than 2,000 people who used oral steroids in the last year revealed the devastating consequences on their quality of life, with 73% experiencing at least one side effect, and one third experiencing side effects relating to their mental health. Another person in the survey, a woman in her thirties, said:

“They affect my mental health really badly and the effects last for weeks or months after I finish the course. I dread taking them but do it to make my asthma better.”

That is not the kind of life that we want people to have.

However, there are some potential treatments. Life-changing biologic treatments offer hope, but only if people have access to them. Treatment in care for severe asthma has transformed over recent years. There are now five life-changing biologic treatments available that reduce, or even stop, the need for oral steroids. A person in another Asthma UK survey said:

“I just wish I had been put on this biologic a lot sooner. Because the period I was suffering, you can’t explain it in words. It was really, really hard for me. It was just so depressing that sometimes you think your life is just not worth living anymore.”

Access to those biologic treatments is poor. Asthma UK’s report, “Do No Harm: Safer and Better Treatment Options for People with Asthma” showed that an estimated 46,000 potentially eligible people are still missing out. Recent analysis by Logex showed that England is second from the bottom on biologic uptake in a comparison with similar European countries. Work is being done to improve the uptake of biologic therapies through the accelerated access collaborative, and Asthma UK has also developed a patient-facing tool, but much more needs to change to bring us in line with other European countries.

Nicki, from Oxford, has been able to access a biologic treatment early, in special circumstances, because she was not responding to other treatments for severe asthma. She says:

“My asthma was so bad that I spent my late twenties and early thirties being blue-lighted to hospital regularly with life-threatening asthma attacks, rigged up to machines to help me breathe and not knowing if I was going to see my 35th birthday. I couldn't walk anywhere due to breathlessness and had severe asthma attacks without warning. My plans for starting a family were put on hold because I was too ill and the only thing that offered any kind of relief was long-term steroid tablets, but these caused me to rapidly put on weight and I was still in and out of hospital continuously. My partner had begun to feel like my carer and I was losing my independence.

Since I have been on dupilumab, I feel like a new woman. I’ve taken part in cycling challenges, love walking my dogs, have a fantastic new job in health research and am able to finally contemplate starting a family.

It was a difficult process for me to get access to dupilumab but I know I’m one of the lucky ones—some people wait years for referrals and this can have a huge impact on their lives. It’s vital people get referred if they’re ever going to reap the benefits of this potentially life-changing treatment.”

That is a vivid illustration of the dramatic impact of new biologic treatments on those for whom they are suitable and available.

A lack of comprehensive guidelines can result in delays and missed opportunities for referral. Dedicated specialist services now offer a comprehensive systematic assessment, multidisciplinary team input and phenotyping. However, 82% of people who would benefit from seeing a specialist, according to British Thoracic Society guidelines, are not getting referred. Covid-19 will have compounded that; there was an 86% drop in referrals for respiratory disease during lockdown, and that has not fully recovered. People are unable to access these specialist services because there is a lack of awareness that severe asthma is a distinct condition that needs dedicated services and biologic therapies to treat it effectively. Furthermore, many health professionals do not know when to refer someone or understand the benefits that referral to a specialist could bring.

Other research from Asthma UK has shown that there is a variation in when clinicians think they should refer someone. This is because the current guidelines are confusing and conflicting, as we have heard. It is incomprehensible that a condition affecting over 200,000 people in the UK did not have a National Institute for Health and Care Excellence management guideline until the covid-19 pandemic, when rapid guidance was produced. That was a positive step, but a fully evidenced guideline with clear referral criteria is still urgently needed to address the huge unmet need and show the benefits of referring someone to specialist care. It is disappointing to see that severe asthma has been excluded from the upcoming NICE, British Thoracic Society and Scottish Intercollegiate Guidelines Network joint guideline draft scope on asthma. Including severe asthma, with clear referral criteria, within the NICE guidelines has the potential to transform care for people with asthma.

There are some clear policy recommendations regarding severe asthma. Repeated use of oral steroids must be seen as a failure of asthma management, and prompt urgent action and appropriate referral should be taken. Primary and secondary care clinicians need to be proactive in order to recognise and refer those with suspected severe asthma. NICE should develop a single, comprehensive severe asthma guideline on identifying, referring and treating people who may have difficult or severe asthma. We need to see the brilliant work by the accelerated access collaborative implemented, and the appropriate funding put in place, to allow severe asthma specialists to provide the right care and biologics to all who need them.

Before concluding, rather than concentrating only on severe asthma, I will touch on some broader issues about asthma. These are key points that need to be addressed. The SENTINEL study, which we heard about from the hon. Member for Strangford, is looking at the use of the blue short-acting beta agonist inhalers, and proper management for people with asthma that ensures they are properly reviewed. This is with the aim of reducing the use of SABA inhalers, and of using other anti-inflammatory inhalers properly to decrease the number of exacerbations. That has the potential to bring improvements for all asthma sufferers, not just those with severe asthma.

As we also heard from the hon. Member for Strangford, annual reviews are really important for all those with asthma. It is important that there are properly trained asthma nurses who can conduct those reviews, and that they feature in the new community diagnostic hubs that have been announced, so people can get access to these reviews. Not everyone gets access to reviews—too few people do at present.

We have talked about how the new asthma guidelines need to include severe asthma. Having that unified guideline would be very helpful. We need better access to biologic treatments for those who would benefit from them. Finally, I want to mention the impact of covid-19 and the recovery plan. I hope that the Minister will say something about what is being done to support people with asthma, and with severe asthma, and to make positive improvements in the wake of covid-19.