Asthma Outcomes

Liz Twist Excerpts

Tuesday 7th December 2021 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under your chairmanship, Mr McCabe. I congratulate the hon. Member for Strangford (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.

--- Later in debate ---

[Edward Argar]

As ever, the hon. Gentleman tempts me to be more ambitious. We have set 2023 as a realistic and achievable target. If it were possible to achieve it sooner, that would of course be a positive. Both in my Department and beyond, everyone will have been encouraged by the hon. Gentleman’s ambition and encouragement to go further and faster on that target, if they can. He makes his point well. I will make a little progress and then come back to several of the hon. Gentleman’s questions.

We recognise the particular effect of asthma on children and young people, which is why NHSEI’s children and young people’s transformation programme is promoting a systemic approach to asthma management. The first phase of the national bundle of care for children and young people with asthma has been developed with clinical and patient experts. A complete version of the bundle of care will be published in spring next year. The children and young people asthma dashboard, developed alongside the bundle, will be able to identify asthma care by race, geography, age and social deprivation, which goes to a number of points highlighted by the shadow Minister, among others. That will help ensure that children and young people with asthma who face the starkest health inequalities are prioritised.

The national care bundle has an environmental impact section that sets out three key standards around air pollution, which is an issue raised by Members on both sides of the House, including the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier), who is no longer in her place. We set out the Government’s clean air strategy in 2019, recognising the impact of air pollution on health and a range of other factors that affect people’s lives. In this space specifically, we recognise three key standards. First, all healthcare professionals working with children and young people with expected or diagnosed asthma should understand the sources and dangers of air pollution. Secondly, patients and their parents or carers should always receive information on how they can manage asthma with regards to air pollution. Thirdly, integrated care systems should ensure that they are linked with schools, where education around asthma should also be provided.

The NICE guidance, entitled “Air pollution: outdoor air quality and health”, provides advice for people with chronic respiratory or cardiovascular conditions on the impacts of air pollution. It is important that we recognise that there are ways that, in a health context, we can care for people who face those impacts. Going back to the 2019 clean air strategy, however, we as a society have a much broader obligation to tackle the root causes of those problems and to improve the quality of our air, particularly in our cities but across our whole country.

Given the pivotal role of respiratory medicine in treating patients with covid-19, some centres’ ability to commence patients on biologics may have been impacted at the peak of the surge. I think all Members will recognise that.

The pandemic obviously revolves around a respiratory illness. Those who treat respiratory illnesses, including asthma, have been on the frontline, along with all our health and care staff. I join the shadow Minister and others in paying tribute to the amazing work they have done. As we seek to recover elective services and get more routine services back to normal, we are ambitious but also recognise, in the face of uncertainties over winter and the new variant, that respiratory services can be some of the hardest to recover and bring back to normal operation, because those are the services affected by the disease and the nature of its transmission.

[Liz Twist]

Will the Minister be a little more specific about the opportunity for those with severe asthma to access biologic services? That is a very specific ask. Without wanting to minimise the impact of covid-19 and the size of the need for a recovery plan, that is a specific issue for a group of people.

[Edward Argar]

I always give way to the hon. Lady, occasionally with a little trepidation, because I know she will ask a measured and difficult question. That is a very important question. During the pandemic, specialist respiratory services for severe asthma have continued to run, but she asked a specific question about biologics, a subject raised by several colleagues. Prescription and access to biologics is co-ordinated through severe asthma centre multidisciplinary teams. They should ensure all treatments, conditions and options are considered when prescribing. I am perhaps less clear about that than she might want, because I would caveat that by saying it would be a clinical judgment.

We do recognise the value of biologics. That goes to what the hon. Member for Strangford said: all treatments and options should be considered by clinicians on an individual, case-by-case basis, rather than what may have happened in the past, which was a presumption in favour of inhalers as a way of managing the condition rather than treating it or getting to the root causes. Although not eliminating the condition, that could deliver the improvements that make a difference based on an individual’s condition.

[Liz Twist]

As the Minister has said he is unable to be specific, will he write to us with a little more information on that issue, and how we could attempt to put it right? We have heard about the huge impact for the better on people’s lives.

[Edward Argar]

That is one of the easier things to do, given that this policy area belongs to the Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), so I can commit to her writing to the hon. Lady. I am happy to do that, though I suspect that response will come back to the point about clinical judgment and decision making. I will also commit my hon. Friend to writing to the hon. Member for Strangford on the detailed and specific point he made about the annual review.

The use of remote consultations and biologic medication that can be taken at home mean we have been able to support most people with severe asthma during the pandemic. At the start of the pandemic, NICE published “COVID-19 rapid guideline: severe asthma”, which provided guidance on starting or continuing biological treatment. In writing that guidance, particular attention was paid to streamlining the process of moving patients on to biologic therapies, to compensate for any barriers that may have occurred because of changes to the NHS in response to covid-19.

The hon. Member for Strangford raised the subject of unified guidelines. NICE’s updated guidance is produced jointly with the British Thoracic Society and SIGN, so it will update all three key areas. They are working with other UK expert bodies to develop a joint guidance for the diagnosis, monitoring and management of chronic asthma, which will update and replace existing guidance.

Community diagnostic centres or CDCs—another theme raised by several hon. Members—which diagnose a number of conditions, are to be launched in place of asthma diagnostic hubs. Diagnostics for respiratory conditions are part of the proposed core services to be provided by CDCs. I hope that gives reassurance.

A review of diagnostics in the NHS long-term plan highlighted that patients with respiratory symptoms would benefit from that facility due to the number of diagnostic tests involved. At the spending review, we announced an extra £5.9 billion of capital support for elective recovery, diagnostics and technology over the next three years, with £2.3 billion of that to increase the volume of diagnostic activity and to roll out CDCs. The planned increase will allow the NHS to carry out 4.5 million additional scans by 2024-25, enhancing capacity, enabling earlier diagnosis and benefiting asthma patients.

I am conscious that I need to leave the hon. Member for Strangford at least three or four minutes for his winding-up speech. One point that has come up among hon. Members this morning has been about prescription charges: a challenging area. Currently, we have no plans to review or extend the NHS prescription charge medical exemption list to include asthma. I heard the points made by hon. Members, but a number of conditions are analogous to asthma, in terms not of their effects, but of their chronic or lifelong impact.

Equally, a balance has to be struck with proportionate charges and the contribution that makes to the NHS drugs budget to facilitate the provision of new treatment. Approximately 89% of prescriptions are dispensed free of charge already, and arrangements are in place to help those most in need. My hon. Friend the Member for Loughborough alluded to the fact that to support those who do not qualify for an exemption, the cost of prescriptions can be capped by purchasing a prescription pre-payment certificate, and that can be paid for by instalments. A holder of a 12-month certificate can get all the prescriptions they need for just over £2 a week.

When we started the debate, I wondered whether we would use the full hour and a half. It is testament to the hon. Member for Strangford, and the contributions of all hon. Members, that we have, and I should stop here to give him a few minutes to come back. To conclude, it is right for him to bring this debate to the House. I am grateful, as other hon. Members are, because asthma affects many of our constituents, day in, day out, and while we have made huge progress, it is right for him and other hon. Members to continue to press for even more ambition and even more progress. I pay tribute to him for that.