Meeting of the Parliament
Meeting date: Tuesday, September 24, 2019
Agenda: Time for Reflection, Business Motion, Topical Question Time, Supreme Court Judgment (Response), Common Frameworks, Decision Time, Idiopathic Pulmonary Fibrosis Week 2019
- Time for Reflection
- Business Motion
- Topical Question Time
- Supreme Court Judgment (Response)
- Common Frameworks
- Decision Time
- Idiopathic Pulmonary Fibrosis Week 2019
Idiopathic Pulmonary Fibrosis Week 2019
The final item of business is a members’ business debate on motion S5M-17948, in the name of Colin Smyth, on idiopathic pulmonary fibrosis week 2019. The debate will be concluded without any question being put.
That the Parliament welcomes Idiopathic Pulmonary Fibrosis (IPF) Week, which takes place from 16 to 24 September 2019; understands that around 2,500 people in Scotland are living with IPF and that, across the UK, an estimated 6,000 are diagnosed with it every year; acknowledges that it is an incurable and life-limiting condition, which results in a build-up of scar tissue in the lungs, restricting normal breathing; understands that current treatments can only mitigate the symptoms; notes the view that more research is needed to help people with the condition, and praises the British Lung Foundation for its “Meet the Expert” events, which allow people living with IPF to speak to specialists, and for raising awareness and funding vital research to improve diagnosis and treatment, which it believes will allow people to have the chance of experiencing a better quality of life.17:11
I thank all the members from across the chamber who signed my motion, helping to raise awareness of idiopathic pulmonary fibrosis. It is a little-known condition, but it is one that around 2,500 of our constituents across Scotland are living with today.
I used to joke that I had the only grass in my street that never got any longer; I would go out to work and when I came home at night, it had been mysteriously cut, because that is what dads did. I remember, though, that in the summer of 2011, I noticed that the grass was getting a little bit longer between those cuts. Dad was not without his health challenges—he had suffered a couple of heart attacks over the years and had been diagnosed with heart disease and diabetes—but he was a strong and active man.
When I asked him whether he was feeling okay and whether he wanted me to cut my grass, he said, “Don’t be daft. I’m fine—just a little tired. Anyway, I’ve seen the state of your lawn after you’ve cut it.” A few weeks later, Dad developed a dry cough. Again, he brushed aside my concerns. Soon the cough became a chest infection and I convinced him to go to the general practitioner, who treated him with antibiotics. However, the infections became more frequent, taking longer to treat and longer to recover from each time.
The GP also detected a build-up of fluid on Dad’s lungs. That was put down to his heart disease and doctors began adjusting his medication but to little effect. Tiredness became breathlessness when he walked even the shortest distance. Dad’s GP prescribed oxygen at home to help to ease the symptoms—a few hours a day to begin with but soon all day when he was at home.
More than a year after the first symptoms, the hospital admissions became more frequent, but there was no real diagnosis other than Dad’s long-standing heart disease. In early 2013, Dad was admitted to hospital yet again, when his breathing became more and more difficult. Then one day in hospital, out of the blue, he said to me, “Good news! They’ve got to the bottom of what’s wrong at last—I’ve got idiopathic pulmonary fibrosis.”
I had never heard of it, but I remember leaving hospital that day feeling quite upbeat. After months of frustration watching the one person who never let anything get in his way battling just to walk even the shortest distance without being out of breath, I thought, “At last—they’ve got to the bottom of the problem. They can now get on with fixing it.”
I went home and did what we all do. I did a Google search of the condition to find out what IPF was and what could be done. The results told me that IPF was scarring of the lungs. It caused the lungs to harden, making it more difficult to breathe. Then I read on and I remember feeling sick to the pit of my stomach when I did. It said that the scar tissue cannot be repaired. There is no cure for IPF. Survivability is worse than for most cancers. Few survive more than three to five years after diagnosis. There are no drugs that would make any meaningful difference. In fact, I remember Dad’s consultant prescribing steroids but openly admitting that they were unlikely to have any effect at all.
Dad continued to battle his condition, but he began to deteriorate further. The impact of IPF was simply putting too much pressure on his heart condition. Almost two years after first showing symptoms of IPF, but just weeks after being diagnosed, he passed away on 8 May 2013.
What causes IPF remains largely unknown. Researchers believe that some people may be genetically predisposed to develop the condition. They also believe that the body creates fibrosis, the scarring that I referred to earlier, in response to injury to the lung—for example, in those who have been exposed at work to dust. Certainly, Dad’s background was that he had worked in an industrial setting for many decades.
That highlights the issue of inequalities in lung disease. Incidence tends to be higher in post-industrial areas, meaning not only that rates in Scotland are higher than the United Kingdom average but that the rate of lung disease-related deaths in Glasgow, with its industrial background, is almost double that of its neighbouring local authorities of East Dunbartonshire and East Renfrewshire.
A serious shortage of data on IPF makes it difficult to get a precise idea of the impact of those regional inequalities, with neither the national health service Information Services Division nor the Scottish Government holding data centrally on how many people are diagnosed with IPF. However, from the information that we have, we know that the problem of IPF is growing, with its prevalence and mortality increasing here and across Europe.
The condition remains poorly understood; its non-specific symptoms make it challenging to recognise and the high risk of fatality that is posed by a biopsy makes it difficult to diagnose. More than a third of people with IPF have been misdiagnosed, with the condition commonly mistaken for asthma, chronic obstructive pulmonary disease or heart problems. More than half of patients waited more than six months before they were diagnosed, with one in five waiting more than two years.
The Government’s forthcoming respiratory care action plan will be a chance to change the situation and make much-needed progress in both the diagnosis and the treatment of IPF. It is critical that GPs and other healthcare practitioners have the knowledge and training to recognise symptoms and to know to run the appropriate tests. A lung cancer screening programme, at least in the form of a pilot, would help to detect lung cancer earlier, rather than the current position in which half of all lung cancer diagnoses in Scotland are at the most advanced stage. It would also detect other lung conditions such as IPF. There needs to be greater understanding of how IPF relates to other conditions and how it presents, for example, in people with heart disease.
More also needs to be done to improve treatment. I said earlier that, when Dad was diagnosed, no drugs could make a difference, but today, new medications, such as nintedanib and pirfenidone, have been shown to slow down the progression of the condition, not only extending lives but improving quality of life. However, those medications are available only to people with lung function of below 80 per cent, excluding many who would benefit from early intervention to improve their life expectancy. There is also a postcode lottery in the prescribing of such medication.
Although those medications can help to slow down the scarring process, IPF cannot be stopped entirely. That is why long-term specialist support is essential. Specialist nurses have a vital role to play in delivering the high-quality expert care that those who live with IPF need. At present, provision is woefully lacking. Only four health boards across Scotland have access to any specialist nurses who are trained in dealing with IPF. Their time is incredibly stretched; for example, just one specialist nurse covers the entirety of NHS Greater Glasgow and Clyde. The respiratory care action plan should therefore include an increase in specialist nurses for IPF across Scotland as a key priority.
As well as access to specialist nurses being very limited, access to pulmonary rehabilitation varies significantly. Pulmonary rehabilitation is typically associated with the treatment of COPD, but it can be useful to those with IPF. It equips people with exercises to improve their fitness, helps them to control the physical symptoms of their condition and acts as a source of support and information from health professionals and from peers with similar conditions. Despite those clear benefits, the referral rate in some areas is as low as 2 per cent, with capacity consistently falling short of demand. The charity Chest Heart & Stroke Scotland is campaigning vigorously for improvements in that regard.
Much more can and needs to be done to improve the diagnosis and treatment of idiopathic pulmonary fibrosis and I hope that the Government’s respiratory care action plan will help to deliver it. The outstanding work of the British Lung Foundation to campaign so effectively in all areas of lung health will also play a vital part, and I hope to play my part as the IPF champion.
In the long term, we should not settle for managing the symptoms of a fatal condition. In the past six years since my dad passed away, we have seen advances in the medicines that are available. With enough investment in research, we can turn the focus from managing this dreadful condition to better understanding its causes and, ultimately, curing or preventing idiopathic pulmonary fibrosis.
Thank you very much, Mr Smyth. I remind members who wish to speak in the debate to press their request-to-speak buttons. I call Emma Harper, to be followed by Alexander Stewart.17:19
I congratulate Colin Smyth on lodging this important motion, which welcomes idiopathic pulmonary fibrosis week. I also thank the British Lung Foundation and Chest Heart & Stroke Scotland for providing briefings, which I found very helpful, ahead of the debate.
Today’s debate allows us to raise awareness of interstitial lung disease and idiopathic pulmonary fibrosis. As the Parliament’s IPF champion, Colin Smyth laid out the issues perfectly in his opening speech, particularly by referring to his dad’s story.
The British Lung Foundation recently created a number of lung health champions. As convener of the cross-party group on lung health, I was delighted to lodge a motion that congratulated the BLF on the lung health champions initiative. The initiative aims to raise awareness of many lung and respiratory conditions, including IPF, that cause poor respiratory health and often lead to severe consequences, such as the need for hospitalisation, on-going medication and treatment and even end-of-life support. I am sure that we will all raise those specific issues in future members’ business debates, which will keep lung health high on the Scottish health agenda.
I am looking forward to the Scottish Government’s publication, before the end of this year, of Scotland’s first respiratory care action plan. The plan is being led by NHS Tayside’s Dr Tom Fardon, who has been very active in progressing the work and will present a draft plan at the next meeting of the cross-party group on lung health, in November. I would welcome the minister’s attendance at the meeting, if that is possible.
I will focus the rest of my time this evening on raising awareness of IPF and ILD by informing people specifically of the e-learning modules for respiratory learning that have been created by Chest Heart & Stroke Scotland. The e-learning resource is called RESPe—respiratory education to support professionals through e-learning—which has been created for health professionals and is aimed at staff and students who work with respiratory patients in areas including anatomy, physiology and the assessment, treatment and management of many lung conditions. The module is free and interactive, and it can be used as evidence in reregistration. At the weekend, I completed the IPF module, which I will be able to use for my portfolio of learning to show that I am keeping up my nurse registration. As I am sure members know, I am a registered nurse.
The module provides lots of information, including on ILD and IPF and on the challenges of managing breathlessness, which is associated with IPF. The module presents much of the data that has been mentioned, such as that on the assessment, diagnosis, cause and treatment of rheumatoid arthritis—which relates to the immune system—systemic sclerosis, lupus and dermatomyositis.
It is interesting to hear that IPF affects 2,500 people in Scotland and that it is more common in men and in people aged over 65, but it is not limited to those people. The module also highlights the effectiveness of pulmonary rehab. I thank Chest Heart & Stroke Scotland for creating the great resource.
In relation to IPF and ILD, I ask the minister what is being doing in Scotland regarding vaping. We hear interesting news and concerns from America regarding deaths and illnesses being linked to vaping. Are we gathering any evidence? Is any research being conducted in Scotland? I am thinking about whether particular aspects of vaping contribute to poor lung health, IPF and even ILD. I look forward to the minister’s response.
Again, I thank Colin Smyth for securing the debate on IPF.17:23
I am delighted to take part in this important debate. I congratulate Colin Smyth on securing it, and I thank him for giving a very personal account of his father’s diagnosis, which showed the live situation in which we find ourselves. As we have heard, idiopathic pulmonary fibrosis causes fibrosing, or scarring, of the lungs, and there is currently no cure, so the awareness week is to be commended.
We are in a serious situation, especially because little is known about the debilitating condition either in the medical world or among the wider public, compared with other diseases in the family of pulmonary fibrosis. That has to change. We need to increase awareness. The number of nurses who can be deployed also needs to be increased so that we can develop the process. That issue has already been raised, and I am sure that the minister will mention it in summing up.
There are very few statistics relating to IPF in the national health service in Scotland. However, I pay tribute to the British Lung Foundation and its report entitled “The battle for breath—the impact of lung disease in the UK”. That report estimated that 32,500 people across the UK have IPF, and that about 5,200 people across the UK die from it every year. I will put that into context: more people die from IPF than die from leukaemia.
The British Lung Foundation’s statistics also show that the death rates from IPF in Scotland are higher. In 2011, an average of 11.3 people per 100,000 in Scotland died from IPF, compared with 9.4 people per 100,000 in England and Wales. The mortality rate is rising throughout Europe, and the UK has seen an increase of 3.8 per cent for females and 4 per cent for males.
The British Lung Foundation has spent in excess of £2.5 million on funding IPF research, but it urgently needs more funding so that it can look into its causes and treatments and, ultimately, find a cure.
It is also important that we look at and address the care and support that are available for people who live with the disease, because it appears that there is a postcode lottery across Scotland.
As we have heard, IPF causes breathlessness and a chronic cough, and that increases. Breathing is affected in two ways. The lungs are hardened, and the individual finds it difficult to inhale. The lungs are attacked and scarred, which causes difficulty for the bloodstream in respect of oxygen passing into it.
It is clear that the condition affects many people, but it has been found that the majority of people who are affected are older—they are in the 60 to 75-year-old age group. The disease is much more prevalent among them. Younger people do not seem to have it.
We have talked about environmental factors, such as breathing in dust. Individuals who have worked with wood, metal, textiles or stone in their normal day-to-day lives have been more prone to the disease.
We also have to think about people who smoke. Emma Harper made some very good comments about vaping, which is a major issue. As has been rightly identified, some startling reports are coming out that could really change the way in which that is managed.
We have to be very upbeat about where we are, but we also have to think about the research that is currently being done. Some people believe that there are vital factors. Funding is therefore urgently needed so that we can find out distinct cures and better treatment for patients who have IPF.
At the beginning of my speech, I mentioned awareness. It is up to all of us to raise awareness, and the debate is one way of achieving that. Every member of the Scottish Parliament has the ability to ensure that awareness is raised in their constituency or across their region. Funding, research and scientific proof are vital, and we all have our part to play. As Colin Smyth said, it is vital that we do that.
Again, I congratulate Colin Smyth.17:28
I thank my colleague Colin Smyth for bringing the debate to the chamber, and for having the courage to stand up and tell us about his dad’s experience and the impact on his family, in order to raise awareness and to help other people across Scotland.
I thank the British Lung Foundation for its hard work. I know that it has worked hard to raise awareness during idiopathic pulmonary fibrosis week this year. It was great to join colleagues to support its photo call and other activities in Parliament last week, and to help—I hope—to move IPF higher up the agenda.
I agree with the points that have been made about the comparatively low awareness of IPF, which is unlike levels of awareness of other respiratory and lung illnesses, such as chronic obstructive pulmonary disease. I have to admit that prior to the British Lung Foundation’s recent work, my knowledge of the life-shortening condition was patchy. It was shocking to me that as many as 5,200 people in the UK die from the disease each year. It is equally worrying that Scotland and the UK have among the highest mortality rates from the disease in Europe.
That is why I have to commend the BLF for the work it has already done in raising awareness of the condition. The BLF-commissioned opinion poll for IPF week confirms that awareness of the condition is low, with over three quarters of respondents stating that they would not know what to do if they were diagnosed with the condition, and that more research into IPF is needed.
For a condition that affects so many Scots, it is troubling that the treatment options for managing IPF remain so narrow. It must be difficult for people who are affected and for their families. It is clear that early diagnosis is absolutely key, so that in cases in which lung function is dependent on drug prescription, people with IPF have as much time as possible with their loved ones.
As the recently appointed BLF parliamentary champion for pulmonary rehab—that news is hot off the press, as of yesterday—I assure colleagues across the chamber, and people who are watching the debate, that I will do all that I can to raise awareness of, and improve the availability of treatment for, IPF. I am delighted to be working with so many lung health champions across the chamber.
I was disappointed to learn that only 53 per cent of IPF patients have completed a course of pulmonary rehab, and that only 14 per cent receive pulmonary rehab that is specifically tailored to their needs. The interstitial lung disease pulmonary rehab classes that are delivered in Greater Glasgow and Clyde NHS have made significant improvements to patients who are managing their chronic conditions. However, it is deeply unfair that such a service is not available equally throughout Scotland. I am sure that we would all like to see that type of specialist care being developed and delivered in health boards across the country, and that we agree that it should be addressed in the forthcoming respiratory care action plan.
We know that lung diseases such as IPF cause misery for patients and their families. They remain among the biggest killers, shorten the lives of far too many people and cost our NHS billions of pounds.
It is clear that we need to take more action to improve our understanding of the diseases, and that we need to invest in treatment options for those who are affected. I would certainly like to see the proposed respiratory care action plan being brought forward as quickly as possible, and for that to contain concrete actions on how we can improve data collection and treatment for people with IPF, and increase the number of specialist nurses who are so needed.
Emma Harper made some good points about vaping—an issue on which I have lodged a number of parliamentary questions and had a few responses. It is clear that we need to be vigilant about vaping and to take a precautionary approach.
By working together with our plethora of lung health champions, we can make a difference. I cannot think of a better IPF champion than Colin Smyth.17:32
I thank Colin Smyth for securing this debate, and I welcome to the Parliament the daughter of a member of the Fife and Tayside IPF support group.
Like many people, until fairly recently I did not know very much about idiopathic pulmonary fibrosis. I had heard of it, but I did not fully understand the disease or appreciate the impact that it has on individuals and families until I headed along to show my support for the Fife and Tayside support group when it had an awareness-raising stall at the Victoria hospital. The stall was not only successful in raising more than £300, but a great opportunity to highlight the effects of the disease.
Despite a steady increase in the number of people who live with it, the disease remains poorly understood and incurable. There are two treatments for IPF, but they only help to reduce the rate at which it progresses, and they can often have significant and severe side effects. A lung transplant, which is only suitable for some people, is the only other solution.
Average life expectancy following an IPF diagnosis is only three to five years, so it is clear just how important it is to ensure that the proper support is available to patients.
The facts and figures relating to the disease are startling, but it was not until I met members of a local support group that the harsh and stark reality of living with this chronic disease really hit home. The Fife and Tayside IPF support group is one of three in Scotland and has been active since November 2017. Born of the needs of individuals and families who were desperate for information, reassurance, support, understanding and hope, it is a place where friendships are made.
The group currently has around 27 members, but as one member explained to me, due to the often rapid progression of the disease and the increase in people being diagnosed with IPF, the number can fluctuate greatly over a very short time. I was saddened to hear that that one small group alone had lost five of its members this year.
When I spoke to its members, it was clear to me just how vital support such as that provided by the group is, not only for those who have received the diagnosis but for their families and loved ones. Words that I frequently heard when members discussed that moment in the consultant’s room when they listened to their diagnosis included “shock”, “bewilderment” and “confusion”. When people are told that they have a chronic and progressive lung disease, which has no apparent or known cause, which they have probably never heard of before and for which there is no cure, that tears their worlds apart.
“How did this happen? Why did this happen? What will happen to me now? How long do I have?” Faced with such uncertainty and a multitude of unanswerable questions such as those, sufferers often find themselves spiralling into depression, which is why access to practical advice and support at that crucial time is so important.
It is vital that patients are given as much information as possible and are made aware of the support that exists. One member of the Fife and Tayside group, Alan, described the moment when he was diagnosed, following a year of being treated for COPD:
“The penny didn’t drop at first. Both my wife and myself were just relieved that I didn’t have cancer of some sort—not realising that IPF is in fact a terminal condition. I am not a fan of looking up the internet on medical matters, because it usually gives examples of the worst cases. However, on this occasion curiosity got the better of me and I looked up IPF. It’s fair to say we were both stunned into silence by what we read”.
Another member, Robert, or Bob, described his experience:
“The doctor told me he thought I had IPF. I’d never heard of it before. He printed me a 3 page article and sent me on my way. When I got back into my car, I sat and read the printout. It was only on the last page, in the last paragraph, that I read the prognosis: 3-5 years life expectancy. This completely knocked me for six.”
Both those gentleman have now sadly passed away, but their testimonies clearly illustrate the need for increased awareness and understanding of what is a debilitating disease.
I welcome the actions of Action for Pulmonary Fibrosis, the British Lung Foundation, the Pulmonary Fibrosis Trust and every support group across the country during IPF world week, as they work to advance understanding and increase awareness of the disease and the devastating impact that it has on the lives of sufferers and their families. As the research continues, I very much hope that new treatments and, ultimately, a cure, can be found.17:37
I congratulate Colin Smyth on securing time in the chamber to debate this topic. I thank him for his personal testament on his father’s and his family’s journey through IPF. In reality, that will be much more effective than anything else that we are able to add to today’s debate.
What causes idiopathic pulmonary fibrosis? It forms part of a group of conditions known as interstitial lung diseases, which cause scarring to the tissue deep inside the lungs—which, in turn, prevents proper airflow from occurring within the lungs. The condition gets progressively worse.
In several cases of interstitial lung disease, the cause is known. In the case of idiopathic pulmonary fibrosis, however, the cause is unknown. The medical term for unknown causes is “idiopathic”, therefore IPF is defined as lung scarring of unknown cause.
Although the causes of IPF are unknown, there are certain factors that might increase someone’s chances of developing it—and “might” is an important word here. To me, that says that we do not know enough about the condition. They are known as IPF risk factors.
As we have heard, they include cigarette smoking. It makes sense to me that something such as cigarette smoking would be a risk factor. The Parliament has done groundbreaking work on that issue, and it is important that we continue to drive that work forward, because it is not finished yet.
Emma Harper raised a point that has been raised before: the impact of vaping. When representatives of vaping companies came to my office, they expected me to support what they were doing, and they were taken aback. Inhaling anything foreign into your lungs has to be bad for you. It is right that we raise that point. As my colleague Emma Harper suggested, it is really important to take cognisance of that, especially given some of the stuff that is coming out of the United States.
Viral infections are another risk factor. Viruses such as the Epstein-Barr virus are quite difficult to detect—I am aware that we have a nurse in our midst, and she might be able to correct me. Influenza is another one of those viruses, as is herpes. Another one is hepatitis C, which I read it is within our gift to eradicate.
One issue that jumped out at me is that of exposure to environmental pollutants, including inorganic dust, such as silica and hard metal dusts; organic dust, such as bacteria and animal proteins; and gases and fumes. Again, the environment is an issue that is coming much more to the fore, and is something that we can make an impact on.
Certain medications are risk factors, such as the ones that can keep people’s heartbeat regular and ones that are used in relation to Crohn’s disease, urinary tract infections and rheumatoid arthritis. Some chemotherapy treatments and cancer medicines can also have a negative impact.
Gastroesophageal reflux disease is another risk factor. Scientists have found that nine out of 10 people with IPF also have GERD. As a result, some scientists think that some people who have GERD might regularly breathe in tiny drops of acid from their stomach, which might injure their lungs and lead to IPF. However, again, more research must be done to confirm that assumption.
There are many conditions that are linked, and some of the work that we are doing will impact on instances of this disease. It is progressive and debilitating and, ultimately, it will shorten people’s life expectancy. Before I sit down, I will acknowledge the impact of this debilitating condition in relation to loneliness and isolation.
There are many things to think about here, and I thank Colin Smyth for giving us the opportunity to debate the issue today.17:42
Like others, I thank Colin Smyth for bringing this important debate to the chamber. I genuinely thank him for telling his dad’s story, which shone a light on IPF and some of the issues that have come out during the debate. It is clear that not enough is known about the disease, and I hope that the debate will help to raise awareness.
I am aware from the briefing that was provided by the British Lung Foundation that 32,500 people across the UK are affected by the condition. However, the more we look into the issue, the more we see that there are clearly areas of concern around it. Only two drugs are available to treat the disease, and they are not available to everyone who suffers from it. That has to be a matter of concern.
The British Lung Foundation does a lot of work around raising awareness of lung disease, and I pay tribute to it. Recently, it hosted me when I attended a meeting at the new Victoria hospital in Glasgow with a group of patients who attend classes for people with lung disease, particularly chronic obstructive pulmonary disease. The patients explained the great benefit that they get from those classes through, for example, help with exercises for their lungs and education about their various conditions.
The debate has highlighted the fact that the Parliament must consider a range of actions, working across parties. We need to raise awareness of IPF. There is little in the public domain about the disease and its causes, as Brian Whittle and others said.
We also need to better understand the treatments for the disease. As I said, currently only two drugs are available to treat it.
Part of our approach has to involve the production of a respiratory care plan, and I welcome the fact that the Scottish Government will produce that later in the year. The plan will flush out a lot of the issues that we have talked about this evening.
I thank Colin Smyth for bringing the debate to the chamber and for sharing his personal experience. I hope that in our speeches members have identified firm action points, not just for the Government but for parliamentarians and for organisations outwith the Parliament, such as the British Lung Foundation, which campaigns so strongly on the issues.17:45
I am delighted to respond to this important debate on behalf of the Government. I congratulate Colin Smyth on securing the debate and I thank him for sharing his dad’s experience, which I know was not easy to do—I could see that sharing the experience brought things back to him. I thank him very much, because sharing such experiences helps us to understand exactly what we are talking about. I am also grateful to members of all parties for their invaluable speeches.
The debate provides us with an opportunity to highlight IPF week and reflect on this rare, poorly understood, chronic and, for some people, ultimately fatal lung disease.
David Torrance made it clear why it is so important that we raise awareness of IPF. We know about the impact that living with the condition has on individuals and their families. Members talked about that.
One of the difficulties is that we do not yet know what causes the condition. There are lots of suggestions, and it is reasonable to suggest that smoking might well be a contributory factor. As Brian Whittle said, the Parliament has a good record of doing groundbreaking work on tobacco, but that work is not finished.
Emma Harper suggested that vaping might be a cause of IPF in future and asked about our position on the issue. The Scottish Government has rightly taken a precautionary approach. We legislated to restrict the availability of e-cigarettes to young people and non-smokers, and Scotland is the first country in Europe to consider a ban on all advertising and promotion of electronic cigarettes.
I have mentioned just two potential causative factors; we are still not clear about what causes the condition.
Does the minister agree that a good starting point would be for the Government to seek more accurate statistics on the condition’s prevalence in Scotland?
I was going to come on to that. On that point, and in the context of Colin Smyth’s point about health inequalities, data is important in informing improvements to services and decision making. I agree that we need to consider how we improve the collection of high-quality data. The development of the respiratory care action plan, which I will talk about—if I have time—provides an opportunity for us to consider that issue.
Given the challenges, the work that third sector partners undertake is crucial in helping to support people who live with the condition. As James Kelly said, it is important that we raise awareness, and in that context I congratulate the British Lung Foundation for its meet the experts events, which have raised awareness of the condition and provided information to people who are affected and their families. We know that increased knowledge and skills are important for any member of the health and social care professions who works with people living with respiratory conditions, whether they do so in a health, social or private care setting. That is why the Scottish Government has provided funding of £112,000 to Chest Heart & Stroke Scotland to support the development of RESPe, the online free, interactive, e-learning tool that Emma Harper mentioned.
The Scottish Government is absolutely committed to improving the quality of care in Scotland, and one way that we will do that is by developing Scotland’s first-ever respiratory care action plan, which members are aware of. The aim of the plan is to provide a framework for action by health boards and other partners. It will set out how we—the Government and its partners—can ensure that those living with the range of respiratory conditions in Scotland can access the care and support that they need to live well on their own terms.
My gratitude goes to all those who have contributed to developing the plan but, in particular, I thank the British Lung Foundation and Chest Heart & Stroke Scotland, which have represented patients’ interests throughout the plan’s development, ensuring that patient experience is fully taken into account and that patients’ voices are heard.
Monica Lennon asked whether we could just produce the plan now. One challenge in trying to co-produce something is that it takes a little longer. As we are developing the first-ever plan, it is right that we ensure that patients’ experiences are central to it.
The minister knows by now that I am not the most patient of people. At the moment, specialist nursing support is available only in NHS Greater Glasgow and Clyde, NHS Grampian and NHS Lothian, so what can I say to my constituents in the NHS Lanarkshire and NHS Forth Valley areas?
As we have heard, the plan will be published before the end of the year. I think that specialist nursing is important, which is why we have given NHS boards more than £2.4 million extra to enhance clinical nurse specialist provision across Scotland. Some boards have used that to directly employ specialist nurses and others have used it to provide training, so there has been a bit of flexibility.
It will be interesting to hear the feedback on the action plan when it is published towards the end of the year. It will be a draft plan, so there will be the opportunity to give feedback. We have engaged to reach the point of publishing a draft plan, but members will know about my ability to listen and hear, which is what I will do if there is a need for the plan to be further amended. The plan will be a genuine draft. We will hear thoughts on it and will continue to work with the British Lung Foundation, Chest Heart & Stroke Scotland and others.
The British Lung Foundation and Chest Heart and Stroke Scotland are already planning how they will ensure that there is additional patient engagement when the draft plan is published, which is really important. In trying to improve services, it is important that we listen to the people who know best, and they are the people who currently use the services.
One final issue that I want to cover is pulmonary rehabilitation, which Colin Smyth, Emma Harper, Monica Lennon and just about everybody else mentioned. There has been good lobbying on the issue, and rightly so. There is a well-established evidence base for pulmonary rehabilitation, which clearly shows its benefits in helping to support self-management. The approach is already the subject of a key recommendation in national clinical guidelines, which we expect NHS boards to follow. However, we have all spoken to people who have raised issues with that. I have spoken to a number of people in Forfar in Angus about the issue. The feeling is that they have particularly good pulmonary rehabilitation, but they ask why it cannot be the same everywhere, which is a good point.
I have one final point—I apologise, Presiding Officer, but it would be remiss of me not to mention this. Research is important, and we support it through the chief scientist office. The Scottish Government funds an active portfolio of research. Respiratory conditions probably punch above their weight in accessing that funding, and we would welcome applications for research into IPF.
I pay tribute to all the staff and volunteers who work tirelessly in our NHS to improve prevention, diagnosis, treatment and support for people with all lung conditions. I give a huge thanks to Colin Smyth for lodging the motion for this important debate.Meeting closed at 17:54.