Obstructive Sleep Apnoea

Rosie Cooper Excerpts

Tuesday 2nd September 2014 Westminster Hall

[Julie Hilling]

I thank the hon. Gentleman for that intervention. I absolutely agree that we need to do more and I will go on to talk about what the Government should be doing.

[Rosie Cooper (West Lancashire) (Lab)]

Before my hon. Friend gets to that, I congratulate her on securing the debate. Does she agree that with 80% of OSA cases not being diagnosed and the economic and social aspects of that being so dramatic—it costs so much to deal with strokes and heart attacks—we must do more to ensure that the National Institute for Health and Care Excellence regulations are implemented? The Government and the Department of Health cannot walk away from the health and social costs and the costs to the patient.

[Julie Hilling]

I thank my hon. Friend for that intervention. It feels as though she has looked at my speech, because I am going to cover in detail a number of the aspects that she has raised.

OSA can reduce a person’s ability to work and impair the quality of life of the person and their family. The story of Steve, one of my constituents in Bolton West, shows only too well what can happen when OSA is not diagnosed. When Steve was 36, he started to get lots of daytime sleepiness; indeed, he was sleeping all the time. He became very aggressive and went to his doctor, who treated him for depression. The first medication did nothing, and the second medication made him even more aggressive. He managed to maintain his job, but with great difficulty, often having to slope off for a sleep, and he was being threatened with dismissal. He did not have a relationship with his young daughter; between the ages of four and six years old, she had no relationship with her dad at all. He could not play with her or interact with her, except to snarl at her. Indeed, he did not have a relationship with his wife or anyone else at that time. The family went on holiday, but his wife said that she would never go away with him again because he slept the whole time. Eventually, he had to take sick leave from work, and for five months he never left his bed. He was so bad that his wife had to change the bedclothes around him. He had a constant headache and felt worthless as he was not contributing anything to society or his family. He could not eat properly and just could not function. He attempted suicide twice.

Steve was referred to a mental health consultant at Royal Bolton infirmary who immediately asked whether he had been tested for sleep apnoea and he was referred to Wythenshawe sleep clinic. There are three stages of sleep: a top layer, a lower layer and deep sleep. The sleep clinic discovered that every minute and 43 seconds, Steve went back to the top of the sleep cycle and was never getting into a deep sleep. He was given a continuous positive airway pressure—CPAP—machine. He went home, slept for 11 hours and was back at work the next day. Eight years later, he still uses the machine every night and has never looked back. It does have its downsides. He will not go abroad because he has a great fear of electricity cuts and he cannot sleep in the same room as his wife because of the noise of the machine, but he believes that that is a small price to pay for getting his life back. Steve feels like he suffered two years of torture. Let us not forget that sleep deprivation is listed as a proscribed method of torture. However, with a very low cost treatment, he can now function and live life to the full.

My friend’s sister, 52-year-old Jean, also had difficulty in getting her GP to take her issue seriously. She went to him because she was very tired all the time and kept falling asleep in work and on the bus home. She would go to bed and sleep all night, but wake up feeling just as drained and tired. After three visits, her GP started to take her problem seriously and, after running a number of tests with no result, referred her to Wigan infirmary. She got an appointment within three weeks, had her sleep monitored and then got a CPAP machine. It has not solved her problem completely, but it has much reduced the number of times she wakes up and she is able to enjoy life again.

[Julie Hilling]

I thank my hon. Friend for that intervention. She is right. We need to make both the public and medical practitioners aware. Also, we need to ensure that the services are in the right place. I will talk more about that in a moment, but first let me tell hon. Members about one more person. My office manager, Noelene, also surprised me by saying that she suffers from OSA; I never had any inkling that she did. She has an underactive thyroid and was extremely tired and forgetful. She would have no recollection of doing something or no memory of how she had got somewhere. She just blamed her thyroid, but her endocrinologist told her that her thyroid levels were fine and that she could not keep blaming everything on her thyroid. He referred her to his friend the sleep specialist. She collected a monitor that afternoon and less than four weeks later was given a CPAP machine. As the specialist said, if the mask works, it is OSA, and if not, it is something else and they will have to continue to investigate. She had problems with the mask initially and found it very uncomfortable but persevered. She could not get on with the full mask, because, as she said, a full mask and hot flushes are not a great combination, so she tried two other masks and now has a nose mask. Occasionally she does not use it, but immediately feels bad. She is now four years on from diagnosis and treatment.

I guess I am not surprised that I did not know that people had the condition, because snoring and falling asleep all over the place are still treated as a great joke, and the first reaction of most of us when we are told that we snore is immediately to deny it. The cost of undiagnosed sleep apnoea is enormous, however. Up to 80% of cases of OSA remain undiagnosed. Awareness of the condition is poor, and the risks associated with it are underestimated even by doctors. The British Lung Foundation led a three-year project to raise awareness of the condition and to campaign for the setting of quality standards for the treatment and care that OSA patients can expect. The OSA patients’ charter, published in 2012, was designed to do that, and it calls on the Government to prioritise OSA by increasing awareness, ensuring adequate data are collected for good service planning and investing more research into the condition.

Progress has been slow, however. The British Lung Foundation commissioned a report on the health economics of OSA, which will be published later this week, to demonstrate the economic and social arguments for greater focus on, and treatment of, the condition. The report finds that treating OSA can generate direct health benefits to OSA patients, and reduce costs incurred by the NHS, in comparison with not treating the condition. Currently, only 22% of OSA patients are treated across the UK, but increasing diagnosis and treatment rates to just 45% could yield an annual saving of £28 million to the NHS, as well as 20,000 quality-adjusted life years. That includes savings that result from reductions in road traffic accidents, heart attacks and strokes, as well as the positive impact on patients’ quality of life and improved survival rates over time. Other sources suggest that NHS expenditure on undiagnosed patients is estimated to be approximately twice that of people of the same age and the same gender. It is estimated that if everyone in the UK with moderate to severe OSA was treated, approximately 40,000 road traffic accidents could be prevented—accidents that not only affect sufferers of OSA, but cause injury and death to so many others.

The main treatment for OSA, continuous positive airway pressure, is very cost-effective. NICE usually values a treatment as cost-effective if it costs £20,000 to £30,000 per quality-adjusted life year gained, but the main treatment used for OSA costs the NHS only £5,000 per quality-adjusted life year gained. Because OSA is associated with other conditions such as heart disease, stroke and diabetes, some savings may also be made in the reduction of medication for those conditions. A Canadian study found that 38% of patients being treated for OSA reported a reduction in their intake of medicines to manage their other conditions.

What do we need to do? In July 2012, the Department of Health set up a working group on OSA to look at areas for improvement in care and services for the condition. However, the group was disbanded early in 2013 during the NHS restructure, and no one is responsible for taking forward the recommendations from the group’s work. The Department of Health should appoint a body to take forward those recommendations. In 2012, NICE was asked to produce a quality standard on sleep-disordered breathing. That has not been developed, and it should be taken forward as an immediate priority so that those with OSA know what to expect from their care.

Everyone who has symptoms of OSA should be diagnosed quickly and accurately, and they should receive the highest standard of care. That will help to reduce NHS costs and improve patients’ quality of life, and it could reduce the number of road traffic accidents that are caused by sleepy drivers. The level of risk of OSA varies across the UK depending on the prevalence of risk factors, and there is a mismatch between the geographical distribution of need and the regional distribution of services. Local commissioners must ensure sufficient availability of services in areas such as Bolton West that have a high estimated OSA prevalence. OSA screening and specialist referral should be introduced into the quality outcomes framework. Doing so would allow for more accurate data on the number of referrals being made from primary care and provide an immediate financial incentive for early intervention that would reduce costs and improve outcomes in the long term.

Finally, let me return to where I started on my journey of interest in OSA. Those who drive for a living, frequently on monotonous roads and motorways, are at risk of falling asleep at the wheel. Their lifestyle also puts them at increased risk of developing sleep apnoea. Those who fear that they have the disorder are often worried about seeking treatment, because they are concerned about losing their livelihood. I hope that the Minister will support the call of the sleep apnoea partnership group to expedite the treatment of vocational drivers so that they can be driving again within four weeks of referral.

[Rosie Cooper]

Before she reaches the end of her speech, will my hon. Friend emphasise that it makes absolutely no sense not to raise awareness of the condition, diagnose sufferers and provide treatment to improve the health of individuals, save the NHS money and reduce the number of sleep accidents? That is a no-brainer.

[Julie Hilling]

My hon. Friend has kindly done so for me. Clearly, OSA is a major issue, and one that is as serious in Bolton West as it is throughout the UK. The Minister assured me in February 2013 that a model care pathway and service specification to reduce variation in diagnosis and treatment would be developed, but we are still waiting. The time for talking is over. Research has been done and professional groups have informed the Government, so it is now time to take action. I will listen with great interest to the Minister’s response.

--- Later in debate ---

[Norman Lamb]

In accordance with the request of the hon. Member for Sheffield, Heeley (Meg Munn), I will write to the Health and Safety Executive. She made a good point, and I am happy to raise it directly with the HSE. Those are serious issues, and they deserve to be taken seriously.

The case studies provided by the hon. Member for Bolton West clearly demonstrated the benefit of accessing treatment, and the impact that treatment can have on someone’s life. I agree with the hon. Member for somewhere near Liverpool—

[Rosie Cooper]

West Lancashire.

[Norman Lamb]

I apologise; I agree with the hon. Member for West Lancashire (Rosie Cooper) that that is a no-brainer. As other hon. Members have said, we must raise awareness and understanding not only among the general public but among clinicians and general practitioners, because a problem with diagnosis may arise because a GP does not recognise the need for a referral. As the hon. Member for Strangford (Jim Shannon)—I think I have got his constituency right, at least—has said, we must work with the devolved Administrations and ensure that we raise awareness of the condition across the United Kingdom.

As the case studies demonstrate, OSA can have a huge impact on the quality of life of those who suffer from the condition and their families, which the example of Steve demonstrates so graphically. OSA can contribute to other long-term health conditions, such as high blood pressure, stroke, diabetes and, critically, mental health issues. The hon. Member for Bolton West made a point about Steve contemplating suicide, and we often forget about the close connection between many long-term conditions and the mental health issues that can go with them. People suffer depression because of an inability to escape their condition.

As we have heard, OSA can also lead to serious, even fatal, accidents. The statistic that there may be 40,000 preventable road traffic accidents is extraordinary. The issue is driver fatigue. Sleep apnoea sufferers are thought to be seven times more likely to cause crashes than drivers without the condition. The challenges posed by OSA should not be underestimated. In the UK it is thought that some 4% of middle-aged men and 2% of middle-aged women suffer from OSA, which in many cases requires lifetime treatment of the sort described by the hon. Lady. A further complication is that, as she describes, OSA is often left undiagnosed because people with the condition usually have no memory of some of the key symptoms, such as interrupted breathing during sleep, so they may be completely unaware that they have a problem unless a partner happens to raise it with them.

The NHS outcomes framework for 2014-15 sets out the Department’s priority areas for the NHS and includes reducing deaths from respiratory disease as a key indicator. Additionally, the mandate sets out the requirement for NHS England to improve outcomes in a range of areas, including preventing premature deaths from the biggest killers, which include respiratory illnesses, and supporting people with long-term physical conditions such as sleep apnoea. Incidentally, it will be interesting to see the economic impacts that the report will set out. I am happy to take that up with the national clinical director, too.

Our “Living Well for Longer” report, which was launched in April 2014, sets out what the health and care system will do to achieve the Government’s objective to be among the best in Europe at reducing levels of premature mortality. The report brings together in one place the national actions taken by the Department and the wider Government, NHS England and Public Health England on prevention, early diagnosis and treatment, focusing on the five big killers, including lung diseases, and showing how they will support local leadership and interventions.

Local clinical commissioning groups are responsible for assessing the needs of their local populations and for commissioning services to meet those needs. For patients with OSA, NHS England expects CCGs to take the NICE guidelines into account when deciding what services should be made available. NICE has recommended continuous positive airway pressure as a treatment option for adults with moderate or severe symptomatic OSA or hypopnoea syndrome, where certain clinical criteria are met. NHS commissioners are legally required by regulations to fund that treatment, where clinicians wish to use it.

Continuous positive airway pressure is currently the only technology recommended for OSA in NICE technology appraisal guidance. The hon. Lady mentioned a referral to NICE for a quality standard, and I am happy to write to NICE. She will understand that NICE is independent, and it is important to respect that independence, but I am happy to ask NICE where that issue is in the work stream of quality standards that are waiting to be addressed. That work will be completed by 2017, which is the long-stop date. I will check, and I am happy to write to her to confirm the position.

Although it is not always possible to prevent OSA, making certain lifestyle changes may reduce a person’s risk of developing it. Those changes include losing weight, limiting alcohol consumption and stopping smoking. The Government are acutely aware of the damage being done to the population’s health through smoking and harmful drinking, which is why we have set out clear ambitions for driving down the prevalence of smoking and reducing the incidence of alcohol-related disease in our tobacco control plan and our alcohol strategy respectively.

We have ensured that NHS health check, a key programme to address systematically the top seven causes of preventable mortality, includes identifying and helping people to take action to quit smoking, maintain a healthy body weight and reduce alcohol consumption. All those issues, of course, have an impact on a range of conditions, including vascular dementia and heart disease, but they are also relevant to sleep apnoea, and we ought to be doing more to address the issues that could prevent the condition.

Through the responsibility deal, we are actively working with business to take voluntary action on calorie reduction and food labelling to help people make healthier eating choices. That is already delivering change and making a real difference. The Change4life social marketing campaign is encouraging individuals to make simple changes, such as reducing their calorie consumption and being more active. One of the key challenges in tackling OSA, as several hon. Members have said, is raising awareness of the condition. It can be difficult for sufferers to detect OSA themselves, and it often goes undiagnosed as a result. In fact, it is estimated that in this country up to 3% of adults across all age groups have undiagnosed OSA, which is an extraordinary number. There are then the associated accidents.

Surveys carried out by the British Lung Foundation in 2011 and 2014 to measure awareness of OSA show that awareness of the condition has risen significantly, which we should applaud. Awareness has especially risen among men, who are most at risk, and in areas with a high risk of OSA. I pay tribute to the British Lung Foundation, which has worked collaboratively with the hon. Member for Bolton West, and the important work of its obstructive sleep apnoea project that aims to improve diagnosis and raise awareness of the condition. The project’s successes include the largest survey of OSA sufferers ever undertaken, a UK-wide mapping tool of sleep services and prevalence of known OSA risk factors and a media campaign that reached at least 48 million people.

It was a privilege for me to attend the recent opening of the Breathe Easy North Norfolk group. Breathe Easy groups have the potential to be incredibly powerful, and they are run by their members with help and support from the British Lung Foundation. Breathe Easy groups provide support and information to people living with a lung condition, as well as those who look after them.

Those are all examples of highly valuable initiatives led by the British Lung Foundation that have a huge impact on the lives of a great number of OSA sufferers in the UK. The effects of sleep apnoea are potentially devastating, and the condition affects thousands of people in this country, many of whom are not aware of the problem even when they are feeling its effects. It is vital that the NHS continues to work hard not only to reduce the number of premature deaths from all respiratory illnesses, including OSA, but to support people with long-term conditions better, regardless of where they live. I assure the hon. Lady that the Government will continue to work hard to improve outcomes for all those in society who have, or are at risk of, a long-term condition such as sleep apnoea.

I reiterate the point made by other hon. Members that the analysis of the economic case demonstrates that much better preventive work ultimately saves money, as well as having a massive impact on individual lives. I strongly feel that we need a shift of emphasis to focus much more on prevention.