Respiratory Health - Q4 - Nov 2018

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Respiratory Health NOV 2018 HEALTHAWARENESS.CO.UK

“Air pollution is a national health crisis that leads to thousands of premature deaths” Sadiq Khan P2 What the future holds for people with Idiopathic Pulmonary Fibrosis Professor Gisli Jenkins P6

PHOTO: GREATER LONDON AUTHORITY

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We need a national plan for lung disease Over 10,000 people are newly diagnosed with a lung disease every week in the UK. The Taskforce for Lung Health brings together the most influential voices from across the lung health sector. Chair of the Taskforce, Dr Penny Woods, explains why they’re calling for urgent change.

At least one in five people will have a lung condition at some point in their lives. It is a debilitating condition, preventing people from living life to the full at work, at home and in their communities.

It reduces the productivity of our economy and requires considerable NHS resources.

Y

et, despite its high prevalence, people with lung disease are being let down. Delays in diagnosis, variable quality of

treatment and patchy access to services known to have the best outcomes all contribute to death rates not having improved for more than 10 years.

A united approach The Taskforce for Lung Health was created to address these urgent issues, uniting 30 groups from across the lung health sector. The Taskforce is preparing a single, five-year plan for improving lung health in England, endorsed by the whole respiratory community.

The plan, which will be published at the end of the year, will start with

What is the current state of air pollution in London?

Air pollution is a national health crisis.

It leads to thousands of premature deaths and is putting the lung development of our children at risk.

I inherited a shameful toxic legacy where millions of Londoners live in polluted areas, and 360 primary schools and our major hospitals are in areas that exceed legal pollution limits.

Poisonous gases and particles impact us over the course of our lives, from Follow us

The missing millions who could have undiagnosed COPD The Taskforce will address stark health inequalities, an issue

particularly poignant on World COPD Day. Depending on your postcode or your income, you could be more likely to get a lung condition like chronic obstructive pulmonary disease (COPD).

Around 1.2 million people have had a COPD diagnosis, but millions more are living with the disease who don’t know they have COPD. This means they miss out on treatment and care.

Early diagnosis, better access to treatments and identifying high risk patients are all crucial steps to improving COPD diagnosis and care.

It’s time for change By coming together as a Taskforce, we’re sharing knowledge and practical experience to make the best possible case for how and why change can be achieved, so that everyone experiencing lung disease gets the information, care and services they need.

We welcomed the news that respiratory disease, along with cardiovascular disease is, for the first time, an official priority in NHS England’s long-term plan.There is a real opportunity to deliver change now.

Government need to stop burying their heads in the sand over this invisible killer

Sadiq Khan Mayor, London

Sadiq Khan discusses the harmful effects of air pollution and what steps he is taking to combat this within the city of London.

prevention and cover diagnosis, treatment and end-of-life care. We also aim to raise public awareness and understanding of lung health.

Alongside the publication, the Taskforce will carry out a range of activities to inform and involve the public. We’ll also be influencing government, NHS England and other bodies to support the recommendations we come up with.

Dr Penny Woods Taskforce for Lung Health, British Lung Foundation

harming our children’s respiratory development, to exacerbating asthma, and leading to a greater risk of stroke or dementia as we get older.

As someone with adult-onset asthma, I know from personal experience that our city's air is damaging people's health. The stark reality is that 7.9 million Londoners – nearly 95% of the population – live in areas that exceed World Health Organization recommended guidelines by 50% or more.

What are you doing to tackle air pollution within the city?

At City Hall, we’re taking bold action to tackle toxic vehicle emissions by MediaplanetUK

delivering the world’s first toxicity charge, the T-Charge, in central London for the oldest polluting cars.

We’re cleaning up older buses and have set strong new standards for taxis.

In five months, we will see the introduction of the Ultra Low Emission Zone in central London, which will operate alongside the Congestion Charge, 24-hours a day, seven days a week, and is set to reduce toxic NOx emissions by 45%.

We’ve delivered audits to help our most polluted schools and given boroughs £11 million to tackle local air quality hot spots. City Hall are also investing record amounts in cycling and walking infrastructure @MediaplanetUK

to encourage healthier and cleaner ways to get around.

‘Quietways’ routes for cyclists have been established away from busy main roads and, during high pollution episodes, we display air quality alerts across our transport network to help Londoners plan their journeys and reduce their exposure to pollution.

What action still needs to be taken by government?

Government need to stop burying their heads in the sand over this invisible killer. It is shocking that they have been taken to court three times over their inability to bring pollution down to safe levels - and have lost every time.

We need real leadership and action @MediaplanetUK

now, starting with a new, modern Clean Air and Environment Act fit for the 21st century. We need a targeted national vehicle renewal scheme that helps those on low incomes and in small businesses get the most polluting vehicles off the road now. Cities need access to more funding and powers – for example, powers to help target nontransport pollution from construction and rivers – to tackle this problem once and for all and ensure Londoners live heathier, happier lives.

Please recycle

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Thousands with asthma are missing out on lifesaving treatment Severe asthma is a life-threatening condition, but thousands are still undiagnosed and unable to access treatment, explains Dr Samantha Walker, Director of Research and Policy at Asthma UK.

Dr Samantha Walker Director of Research and Policy, Asthma UK

Imagine how terrifying it would be to spend every day fighting for breath, to be constantly in and out of A&E because you’ve had a lifethreatening asthma attack.

Imagine how frustrating it would be to find your medication wasn’t working or left you with debilitating side-effects like diabetes or osteoporosis.

T

hat’s the reality for an estimated 200,000 people in the UK who have severe asthma and may not even know it, according to Slipping through the net: The reality facing patients with difficult and severe asthma, a new report by Asthma UK.

Severe asthma: an unknown term The term ‘severe asthma’ refers to a specific type of asthma1 that is uncontrolled and doesn’t respond

to usual medicines. People living with severe asthma often take numerous courses of oral steroids that, when used in the long-term, can leave them with toxic side-effects. They can also struggle with life-threatening asthma attacks and be in and out of hospital.

The lack of understanding about severe asthma by patients and healthcare professionals means the condition is not being effectively diagnosed. There are just 894 people registered as having severe asthma, but Asthma UK estimates 200,0001 people in the UK have the condition.

Without an accurate picture of how many people need support and treatment, it’s impossible for the NHS to provide enough services for care.

Getting breathless changing bed sheets We know of one woman, called Vickie, who is just 29 and has severe asthma that has prevented her from working for three years and left her confined to her house. She can’t walk to the end of her road, she gets breathless just changing her bed sheets and has daily asthma attacks.

At times she’s had an ambulance called to her home three times a day.

Waiting as long as 20 years for diagnosis Vickie isn’t alone. We often speak to people with asthma who are shunted from one course of medication to another and bounced between GP, hospital and back again. Their condition might be so severe and disruptive that it has cost them jobs, relationships and their social life.

People with severe asthma can

wait years to get a diagnosis, meaning they waste years on ineffective treatments. We know of one patient who waited 20 years for a diagnosis!

The delay in being diagnosed is deeply distressing for patients and costly to the NHS. People with uncontrolled severe asthma cost the NHS four times more to treat than the average patient. The cost can be pushed upwards by the combination of delayed referral, treating sideeffects of oral steroids and the increased need for patients to use GP surgeries, hospitals and A&E.

We’ve made strides – but more changes could transform lives Thanks to ground-breaking research, diagnostic tests are being improved and new biologic drugs called monoclonal antibodies (mAbs) have been developed. They have lesser side-effects than longterm oral steroids and are giving severe asthma patients hope.

But people living with severe asthma need to be identified, referred and treated quickly. There need to be clear guidelines on when patients should be referred to specialist clinics, and healthcare professionals need to follow them.

Patient care records should be shared among care settings so clinicians can properly assess a patient’s health. We want to support health bodies to make these changes that could transform the lives of people with severe asthma.

Read more at asthma.org.uk/severeasthmareport

1: SLIPPING THROUGH THE NET: THE REALITY FACING PATIENTS WITH DIFFICULT AND SEVERE ASTHMA, ASTHMA UK, 2017. HTTPS://WWW.ASTHMA.ORG.UK/GLOBALASSETS/GET-INVOLVED/EXTERNAL-AFFAIRSCAMPAIGNS/PUBLICATIONS/SEVERE-ASTHMA-REPORT/AUK-SEVERE-ASTHMA-GH-FINAL.PDF

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How your home can trigger asthma attacks Dr Andy Whittamore Clinical Lead, Asthma UK

When people think about air pollution it probably brings to mind smoggy, over-populated cities full of traffic fumes, but indoor air pollution can also be harmful, particularly for people with asthma.

Dr Andy Whittamore, Clinical Lead at Asthma UK, explains how to protect against indoor air pollution.

W

hen you have asthma, all kinds of things lurking in your home can cause indoor pollution and trigger an asthma attack.

Many cleaning and DIY products as well as new furniture and carpets contain volatile organic compounds (VOCs), which trigger asthma symptoms. Scented products such as candles or air fresheners, and the smoke from wood-burning stoves are also culprits.

Top tips to improve air quality at home Alison Cook Director of Policy, the British Lung Foundation

How to protect yourself from triggers It's impossible for people with asthma to get rid of all the triggers in their homes, so the best way to stay well is to regularly take your preventer inhaler (normally brown). This builds up protection in your airways over time, so that, if you come into contact with asthma triggers, they are less likely to cause an asthma attack.

Everyone with asthma should also make sure they keep their blue reliever inhaler with them at all times for on-the-spot relief. If you are regularly getting symptoms, you should see your GP for a review of your asthma.

Keep your home safe There are some things you can do to minimise indoor pollution in your home, such as making sure that, if you have a wood or coal fire, any flues are in good condition and working well so the smoke can escape.

You should also ensure your chimney is swept regularly.

If you know that scented products trigger your symptoms, you should consider using unscented ones. If cleaning products are an issue, you can avoid breathing them in by using solid or liquid cleaning products instead of sprays.

We’d suggest that when people are decorating that they use paints low in VOCs, and if you are getting new carpets, you should ask the shop to roll them out before they are delivered. When people are cleaning, decorating or getting new furniture or carpets, it’s important that the area is well-ventilated.

Get help If you are worried about indoor pollution triggering your asthma, you should speak to your GP. Stay well by making sure you attend your yearly asthma review and follow your written asthma action plan.

Read more at asthma.org.uk/triggers

Do you know the facts about indoor air pollution?

Alison Cook, Director of Policy at the British Lung Foundation, explains.

a house is made of. Tobacco smoke indoors remains the biggest threat, but there’s increasing evidence that other sources of pollution need to be taken just as seriously.

O

Some simple steps to protect yourself

utdoor air pollution is gaining ground as an urgent health issue, however indoor pollution is often overlooked.

Breathing in any kind of air pollution has an impact on our health, especially for those living with a lung condition.

We spend roughly 90% of our time indoors so it’s important we take action to look after our lungs, even in our own homes, active or asleep.

Breathing in polluted air can make you feel short of breath or wheezy and has been linked to an increased risk of pneumonia, chronic obstructive pulmonary disease (COPD) and lung cancer. Pollution in your home can also increase the risk of heart disease and stroke.

The quality of the air we breathe indoors depends on a number of factors including; the type of heating we have, how we cook food, the cleaning chemicals we use and what

There are some simple steps you can take to improve air quality indoors.

Keep your home well aired and watch out for condensation, which encourages mould and fungi to grow.

To keep condensation at bay, use an extractor fan when cooking or showering, wipe down windowsills if damp and dry your washing outside if you can.

It’s also important to keep your home at a comfortable temperature, as low or high temperatures can affect breathing. The recommended temperature is 18 degrees. .

Try to use liquid cleaners instead of sprays; certain products may cause respiratory irritation and symptoms if you have a long-term lung disease.

Sprays get into the air, which means you can breathe them in more easily and they can get further down into your airways.

Your workplace can be affected too Indoor air pollution is not just restricted to the home but can also be a problem in the workplace. In some jobs, you might be exposed to much higher concentrations of certain air pollutants and more dangerous substances than you would find at home.

You have the right to work in a place where the risks to your health and safety are properly controlled by your employer, so it’s important you raise any concerns.

United effort While we can all do our bit, we need the government to publish ambitious policies in the Environment Bill that will look at all sources of air pollution to protect the nation’s health. We might need government action on the use of different fuels and chemicals indoors to make the air we breathe safe.

Read more at healthawareness

‘Pollution levels can be up to 5X higher indoors.’

European Respiratory Journal, 2012

Mould spores Thriving in the damp, mould releases thousands of spores into the air we breathe.

House dust Combining dead skin flakes, hairs and dust mite excreta, house dust is a common allergen.

Nitrogen dioxide Burning wood logs gives off harmful nitrogen dioxide as well as heat.

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Idiopathic pulmonary fibrosis is a devastating lung scarring disease that kills more people than many cancers

Professor Gisli Jenkins NIHR Research Professor and Consultant Respiratory Physician, Nottingham University Hospitals

Idiopathic pulmonary fibrosis develops insidiously and is often misdiagnosed as more benign conditions. There are anti-scarring drugs, but they do not cure or stop the disease from getting worse. There is hope on the horizon with new drugs and patient advocacy playing a leading role.

I

diopathic pulmonary fibrosis (IPF) is a form of progressive scarring disease of the lung.

Progressive pulmonary fibrosis (lung scarring that gets worse over time) is an uncommon condition and can be associated with inhaled dusts such as asbestos, exposure to parrots or pigeons and diseases such as rheumatoid arthritis. However, the most common form of lung scarring has no obvious cause and is therefore called idiopathic pulmonary fibrosis.

IPF is a devastating lung disease that leads to progressive disability and ultimately death on average three years after diagnosis. Only 25% of people survive with the condition for five years. The prognosis is worse

than most cancers. Although less common than most other lung diseases, it affects approximately 30,000 people in the UK and it is the fourth biggest killer after lung cancer, COPD and pneumonia.

Only 25% of people survive with the condition for five years

Strong genetic trends with IPF While the precise cause of IPF is not known, risk factors associated with its development include exposure to cigarette smoke, dust and pollution.

Furthermore, there is a strong genetic component to the illness and 6% of people with IPF have a parent or sibling with the condition.

Screening studies have shown that approximately 7.5% of the population have evidence of lung scarring on a CT scan. Fortunately, only a minority of patients will go on to develop progressive, symptomatic IPF. Unfortunately, at the current time, it is not possible to predict who will get progressive IPF. The excess scar tissue in the lung starts gradually and most patients don’t realise that their symptoms of breathlessness on exertion are anything serious. As the disease progresses, patients are often treated for other conditions such as

chest infections, asthma or heart failure before being diagnosed with IPF, on average, three years after the onset of symptoms.

Treatment cannot stop or cure IPF Anti-scarring drugs are available that have been shown to slow down loss of lung function as IPF progresses. Anti-scarring drugs are expensive and have a number of side effects. The National Institute of Health and Care Excellence (NICE) has approved anti-scarring drugs for patients with advanced IPF based on lung function criteria (forced vital capacity between 50 and 80% of the predicted value), but the best time to start therapy is not known.

Unfortunately, these drugs do not stop or cure the fibrosis and patients will still get worse on treatment

but more slowly than without the medication. However, the speed at which the disease progresses for individual patients is difficult to predict.

As well as anti-scarring drugs, people with IPF should be offered supportive care such as pulmonary rehabilitation, cough suppressants and oxygen therapy as this can help alleviate some of the severe symptoms such as fatigue, cough and breathlessness associated with IPF.

What does the future hold for people with Idiopathic Pulmonary Fibrosis?

Despite the grave prognosis, there is considerable hope for patients with IPF. There are a large number of new, anti-scarring drugs that are being developed to treat this condition. Furthermore, the genetic insight into this condition has raised the prospect of precision medicine using targeted treatments tailored to patients with specific genetic or molecular abnormalities.

Artificial intelligence as well as wearable, and other smart technologies may help identify

patients earlier, who may then gain more benefit from starting these new or conventional therapies sooner.

Patient charities, such as Action for Pulmonary Fibrosis, have galvanised the community by raising money, funding research, helping to set up over 65 local support groups and providing educational resources for patients, carers and healthcare professionals.

This is a time of real optimism to be involved in treating people with progressive pulmonary fibrosis, not only because of the scientific advances, but due to the real collaboration between doctors and patients with a desire to end the suffering associated with this devastating illness.

“IPF is a deadly disease killing more and more people each year, but the increased collaboration between doctors, scientists and patient advocacy groups is leading to real improvements in patient outcomes that I am sure will get even better in the future.”

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Patients suffering from pulmonary fibrosis lack the kind of support cancer patients receive Pulmonary fibrosis is an incurable lung disease, with a prognosis worse than most cancers. Action for Pulmonary Fibrosis is developing a national network of groups to support patients on their difficult journey.

Steve Jones Chair of Trustees, Action for Pulmonary Fibrosis

The idea of people affected by illness or loss coming together to form groups to help each other was spearheaded by Donald Macmillan, after losing his father to cancer in 1911.

The society he formed grew into MacMillan Cancer Support. Donald Macmillan was a trailblazer who realised that peer support could hugely improve outcomes for patients.

C

ancer support is now well developed across the UK, yet, for those suffering from many incurable diseases, there is little support available. Pulmonary fibrosis, a progressive lung scarring disease, affecting over 70,000 people in the UK, is one of those diseases.

This is why the charity Action for Pulmonary Fibrosis (APF) is spearheading the development of

pulmonary fibrosis support groups across the UK.

Pulmonary fibrosis support groups are becoming more accessible Working with healthcare professionals and patients, APF has helped grow the number of groups from five in 2013 to 65 today.

It aims to have 100 support groups up and running by 2020, so that no pulmonary fibrosis patient will live more than an hour away from a support group.

Average life expectancy after diagnosis is threeyears To be diagnosed with pulmonary fibrosis, is devastating. The prognosis for idiopathic pulmonary Fibrosis (IPF), the most common form of the disease, is worse than for many cancers with an average life expectancy of only three years. As

Joining my local support group transformed my life.

I felt less alone

the disease takes hold, you become more and more breathless – unable to climb stairs or walk more than 50 or 100 metres on the flat, without resting. You become dependent on supplementary oxygen. Your world closes in on you and you feel isolated.

Who can you turn to for help?

When your world is shrinking, you need support I speak from experience in saying that the impact of support groups, for many patients, can be lifechanging. I lived with IPF for many

years. Joining my local support group transformed my life. I met other patients and their families and felt less alone. I felt supported by other patients and could, in turn, support them. I learnt more about my disease and felt empowered to manage it better. In the end, I was extremely lucky and received a lung transplant. Sadly, few patients are so fortunate.

Although progress is being made in treating pulmonary fibrosis, we are a long way from really effective treatments or a cure. Patients must battle on in the knowledge that the best they can hope for is that current drug therapies may delay the inevitable. A support group can do so much to help them cope well with that reality.

One of APF’s founding trustees was Wendy Dickinson whose father, Nottingham Forest Football Manager, Peter Taylor, who won two European Cups with his partner

Brian Clough, died from IPF in 1990.

She says: “When I visit support groups, it is wonderful to see new people walk out of the room after a couple of hours with a smile on their face, even though they may have felt desperate when they walked in.

Groups offer advice, information and friendship and, most importantly, the chance to talk to people who are sharing your difficult journey.”

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How can you help yourself when living with pulmonary fibrosis?

HEALTHY LIFESTYLE

EXERCISE

JOIN AN IPF SUPPORT GROUP

Have a healthy, balanced diet with plenty of fruit and vegetables. These contain antioxidants, which may be beneficial to your lungs as well as your general health. Try to keep your weight optimum, as you will feel more breathless if you are overweight.

Regular exercise is important for maintaining muscle strength, improving sleep and general wellbeing. But exercise can be difficult to do when you are breathless. Getting slightly short of breath when you exercise is safe; however, you must stop if you feel dizzy or have chest pains.

Join a pulmonary fibrosis support group and meet other people living with the disease. Support groups provide mutual support and helpful information about how best to live with pulmonary fibrosis. It can be invaluable for your physical and mental wellbeing. See the APF website to find your nearest group.

PULMONARY REHABILITATION Ask your doctor or nurse to refer you for a course of pulmonary rehabilitation. Originally set up for people with chronic obstructive pulmonary disease (COPD), many patients with pulmonary fibrosis benefit from this programme and it is recommended

by NICE. Typically, it involves a six-week course and includes exercise classes to improve muscle strength and fitness, advice on managing breathlessness and other aspects of living with the condition.

Start with gentle walking around the house or garden on a regular basis. As you feel stronger, you can increase the distance you walk. You may find it helpful to set yourself targets or discuss an exercise programme with your doctor or physiotherapist.

GET VACCINATIONS People with lung disease are at an increased risk of infection. Having the seasonal flu vaccine may help to reduce your risk. Check that your pneumonia vaccine is up to date, too. Your GP or hospital doctor will be able to advise.

STOP SMOKING If you smoke, the most important thing you can do is to stop. There are many resources available to help with smoking cessation. A good place to start is discussing this with you or GP or local pharmacist. For more information visit the NSH smokefree website1.

1: NHS.UK/SMOKEFREE

Lung cancer screening saves lives Paula Chadwick There is currently no national screening programme for lung cancer. Stop for a second Chief Executive, Roy Castle Lung Cancer Foundation and think about that – biggest cancer killer, kills more people than breast, prostate

and pancreatic cancers combined, and no screening programme.

U

ntil til now, th there h has nott been enough evidence to prove what we at Roy Castle Lung Cancer Foundation already know – that lung cancer screening works. But this isn’t the case any more.

26% reduction in lung cancer deaths after scans In September this year, the results of the NELSON study were announced.

It reported a 26% reduction in lung cancer deaths when high-risk patients had a CT scan.

Put simply, the results are a game changer. They provide categorical evidence to support what we have been saying for the last 28 years – that lung cancer screening can save lives, the lives of one in every four people.

To be diagnosed with pulmonary fiThis foundation, set up by Professor Ray Donnelly MBE FRCS in 1990,

b ilt with ith the th aim i to t secure was built a national lung cancer screening programme.

For the past 28 years, we have funded essential research into the early detection of lung cancer and, most recently, our own lung health check in Nottingham where we witnessed, first-hand, how offering high-risk patients a low dose CT scan saves lives.

Bill’s story Bill Simpson, from Bulwell in Nottingham, attended our programme in 2017, where he was diagnosed with early-stage lung cancer.

Bill had a cough but said he would never have gone to the doctor because he didn’t feel ill.

Although progress is being made in treating pulmonary fibrosis, we are a long way from really effective treatments or a cure. Patients must

bbattle ttl on in i the th knowledge k l d that th t the best they can hope for is that current drug therapies may delay the inevitable. A support group can do so much to help them cope well with that reality.

Bill didn’t ‘feel’ ill That’s one of the scariest things about lung cancer – symptoms are vague and non-descript and can easily be attributed to something far less sinister. People can also be asymptomatic for years. This all contributes to the high number of late stage diagnoses and why, for far too long, lung cancer survival rates have lagged significantly behind.

Sliding doors In Bill’s case, his cough was a sign of lung cancer. The CT scanning project meant it was caught early.

Without it, the likelihood is that

Bill’s cancer would have remained Bill’ ld h i d undetected until it was too late.

We know NHS England is working on the roll out of lung health checks like this and we look forward to its announcement on locations and timeframes for its implementation soon. These programmes will save more people like Bill and continue to provide further evidence of the impact of lung cancer screening.

We need a national programme.

We recognise it won’t save everyone, but it is a very big and very important step forward.

Too many people have already died from lung cancer and will continue to do so until this change happens. Now is the time for action.

Now is the time to save lives.

My cough was a sign of lung cancer.

The CT meant it was caught early.

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