New Petitions

I thank you for the opportunity to expand on the issues that are raised in the petition, which aims to raise awareness of interstitial lung disease and home management.

Jean Watson, Ivy Dodds and I are all sufferers of ILD, and we are members of the west of Scotland ILD support group. Unfortunately, Ivy Dodds was unable to travel to the meeting because of health difficulties.

The thrust of the petition is that the Government should provide funding for the issues that are raised in the petition. I will not go over them, as members seem to be aware of them.

We find that one of the main problems is that there seems to be a complete lack of awareness of interstitial lung disease. In particular, the petition highlights the statistics for people who have sought their first appointment with a general practitioner. The delay of perhaps up to two or three years for a person’s first appointment is completely unacceptable and we think that the Government and others must address that by increasing public awareness.

As members can see from my nasal cannula, I am a sufferer of ILD. In hindsight, I should have visited my GP some two years before I did. That delay was down to the fact that I, like most people, was completely unaware of ILD and its effects. I put my increasing breathlessness down to age and asthma, which I was diagnosed as having some eight years prior to my ILD diagnosis. I still take asthma medication, so there was no possibility of any bad diagnosis there.

Another major problem is in the delay in ILD diagnosis. By its nature, ILD mimics many other diseases and ailments. It has no known cause—except, unfortunately, in a few industrial cases involving miners, for example—and there is no known trigger to start it.

A delay in diagnosis may be remedied by the particulars that are set out in the petition. When people go to their doctor, they should automatically get a chest examination if they are over the age of 60 or around that age, even if they have gone in with a sore toe. It takes only two minutes to lift up a person’s shirt and do a chest examination. That will help to diagnose ILD and many other respiratory diseases.

Other illnesses and diseases, such as lung cancer and other cancers, presently have or have had well-funded awareness programmes. Surely such programmes for ILD and similar respiratory diseases are well within the scope of Government funding, and whatever they can come up with should be implemented. That would increase public awareness and highlight that a quality of life is expected after diagnosis. It would also bring ILD out of the shadows and increase public awareness and public acceptance of what it is. We sometimes find, not that the public avoid us, but that they find it difficult to accept that we do not have a deadly illness. If I take off my nasal cannula, I hope that I look the picture of health, but I am not. That is what we have to overcome. It should never be overlooked that ILD and idiopathic pulmonary fibrosis are insidious, incurable diseases that bring debilitating breathlessness, as you can hear.

The petition highlights the benefits of home management and says how it should be provided. Again, that is within the scope of the powers of the Government and local authorities. The provision of pulmonary rehabilitation is a mainstay with regard to maintaining the quality of life of sufferers. It gets us out and about and it keeps us mobile. The petition highlights other home management necessities—there are so many that I have not got time to go through them all. We would have to write a book or talk for a few days if we started to list and discuss all the effects of ILD, from pre-diagnosis to post-diagnosis and on to living with the condition.

We understand that a national respiratory plan for Scotland has been proposed. We feel that any delay in its formation and implementation can only cause untold suffering throughout Scotland. We therefore urge the committee to consider the petition and, thereafter, urge the Government to act responsibly.

I will not say any more. Jean Watson has a lot to say.

My circumstances have been very similar to Jim’s. I was diagnosed with idiopathic pulmonary fibrosis two and a half years ago. I had always been told that my health problems were caused by allergies and stomach problems and, like a lot of people, I used standard medication for those. I retired from work four years ago, mainly due to a recurring cough and the fact that I was feeling increasingly tired throughout the working day. An exacerbation in my condition led to me being referred to hospital and I was eventually diagnosed with IPF. I had never heard of that illness, and none of my family had, either.

On joining the west of Scotland ILD support group, I met other patients who had the same condition. Talking with fellow patients has shown me that they have had very similar problems of late diagnosis, mainly due to a lack of awareness and understanding of their conditions. The symptoms that they display may be treated, but the underlying serious condition might not be identified. Most patients have other serious health problems in addition to ILD that are classed as co-morbidities and make treatment more complex.

Interstitial lung disease affects middle-aged and older people. We feel that many people put up with their health problems due to a lack of knowledge and the idea that they are just getting a bit older. The condition causes a debilitating loss of physical activity, leading to people being unable to care for themselves. The impact on their daily life is considerable. They have difficulties with the simple activities that are involved in looking after their house, and they can experience emotional problems and feelings of social isolation. As ILD is an incurable condition, we feel that there is a considerable need to raise awareness of it to assist earlier diagnosis and create a consistent approach to care throughout Scotland.

We are happy to answer any questions.

I think that it is a problem. That is why the petition calls for funding for extra training for GPs so that they can diagnose ILD. It is a difficult disease to diagnose, because it mimics many other chest infections and various other things. ILD itself covers about 200 or 300 degrees of illnesses, and it is difficult for GPs to isolate and identify it. In order to diagnose it, there needs to be an X-ray and, thereafter, hospital care.

We need GPs to be more aware of it. I was very fortunate when I went to the doctor—he must have had patients with it before, because he recognised it right away. However, we know that other patients, and an awful lot of people in our group, have had terrible difficulties in getting diagnosed by their GPs. They are told, “it is a chest infection, take this” or, “it is a cough, take that.” However, a simple chest examination would highlight a lot of it. There is a distinct noise—

There is a crackle.

ILD gives a distinct crackle when a chest is examined. That is all that is needed for the GP to say that they need to look at it further and do an x-ray and so on. Then you are in the system.

They have to know what to listen for.

The sounds of an ordinary chest infection and a pulmonary fibrosis are different. There is a crackling sound with the latter; it is a different type of sound. It has to be examined. It is no good just to be told that you have a cough or a sore throat, which tends to be what you get treated for. Although that clears it up a wee bit, it never clears it up totally and it keeps building up. That will happen anyway, but the diagnosis means that you can receive the proper treatment earlier.

If you do not know what pulmonary fibrosis is, you just think that you have a cough or a chesty wheeze all the time.

I cannot hear my chest crackle.

I am not sure whether it is misdiagnosis. I was not diagnosed, as opposed to being misdiagnosed. The diagnosis is missing. If you do not mind me saying so, I think that there is a difference there.

There are lots of websites on pulmonary fibrosis, but if you do not know that it exists, you will not look them up. If you tell the average person that you have been diagnosed with pulmonary fibrosis, they think that you will get tablets for it and that it will be okay. They do not really understand what the condition is, because we do not hear about it.

That is okay.

I had been diagnosed with asthma about six or seven years earlier, but I put my increasing breathlessness down to getting older and not being as active. The asthma treatment was working for the asthma side of it, but I was still getting increasingly breathless.

I would have. However, even before that stage was reached, I am absolutely certain that my wife would have said that my cough was getting worse and worse and that I should get to the doctor; even if I was saying that it was going away and that it was just the asthma and that I was getting older.

That is public awareness—public awareness leads to the doctor’s appointment, which leads to the doctor’s diagnosis. That is the sequence that we have to follow.

Yes, but the flu jag tends to go along with an age profile. If you are diagnosed with ILD, you get those pneumonia and flu vaccinations from your GP at a younger age than you normally would.

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If you went for your flu jag, they could do a sounding—yes, that would only take a couple of minutes. It would be very simple.

No, not when you go for your vaccinations. Usually, you book in for your vaccination and you go to a nurse; she just asks if you are feeling all right. You do not get any soundings—at least, I have not. I can speak only for myself.

For flu jags, you get an appointment at the GP surgery for Saturday between 10 and 12, for example, and you and 200 other people queue up to get your jags, so there is no possibility of any examination.

Yes.

Yes. There is not the slightest doubt about that. If you speak to the average person on the street, they know what lung cancer is, they know what COPD is and they know what asthma is. If I say I have ILD, people do not know what that is. They ask me if I have stopped smoking.

I think the word “disease” tends to put in people’s minds the idea that you catch ILD but you do not; it just develops in you.

As far as the statistics go, we have not been able to find any that say how many sufferers there are in Scotland. There was something in the parliamentary written answers that I looked at. Joe FitzPatrick’s written answer to question S5W-21025 from Colin Smyth was about the number of people with ILD who had received pulmonary rehabilitation. That written answer referred to a table in a different written answer, which I could not quite relate to the question because the table is headed:

“Number of patients discharged from an acute hospital with a diagnosis of interstitial lung disease, by year ... 2014-18”.—Written Answers, 23 January 2019; S5W-20839.

That does not relate to pulmonary rehabilitation, and it does not really reflect the number of people who are diagnosed either because, if someone has been discharged from hospital, that means that they have been an in-patient. I have never been an in-patient—I am only an out-patient. Lots of people, including me, are not included in any of the available statistics, and we have not found any other statistics that say how many people in Scotland have ILD.

We cannot find that information anywhere. One of the things that we ask for in the petition is for the people who keep those records to record the information better rather than just putting down “respiratory illness”, “respiratory disease” and so on. It would be better if they could code it properly.

The information is coded, but it tends to revolve around hospital admissions and hospital discharge. Most of us just attend the respiratory clinic although it is a chronic disease—we are on their books for ever, really. I have a three-monthly appointment, and I just keep turning up every three months for the tests and so on. However, I will not be in those statistics.

In reply to Angus MacDonald’s question, the figures are for the whole of the UK. They are certainly not split between Scotland, Wales, Northern Ireland and England.

Initially, I was X-rayed. That must have been about six years ago. You have one X-ray and, if it is not 100 per cent clear, you wait and get another one. At the end of that, I was told that things looked okay—my blood tests were okay, my cough would probably clear up, and I just had a breathing thing. I was told to take the allergy tablets and so on.

That went on for quite a number of years. Eventually, I had what is classed as an exacerbation—things became worse. It was like getting a chest infection. I went back again, and I was diagnosed at that point, but that was only because I said that I was there because of my breathing and that there was more to it than just a chesty cough. As well as seeing a specialist, you have to go through X-rays and a computerised tomography scan before you are diagnosed. GPs cannot diagnose; they refer.

The delay is because you are left with annoying symptoms that do not quite go away. They clear up a wee bit in good weather and get worse again in the winter. You are on cough bottles and various things, as everyone else is in the winter.

And the breathlessness increases.

It gets worse.

It gets worse. If you are not active and doing something a wee bit more strenuous, you do not really know that you are getting breathless. If I take off my nasal cannula, I can sit all day as long as I do not move, but as soon as I start moving, I start to get breathless. Eventually, I was cutting the grass and found that I had to rest after each time I went up and down. My wife told me that I had to do something about it. That is when you realise that you have to do something. Until then, though, unless you are pushed to the limit, you do not really know that you are breathless. When you exert yourself, the breathlessness gets worse.

My husband and I work things out between us in the house. If I was on my own, I would find it very difficult to do very basic things about the house. I do not have oxygen—I just have tablets—but everybody eventually gets oxygen. If you have oxygen, you need help most of the time.

You do need help. If you have a family, you find that you are unable to do the share that you used to do. You just cannot do it. When you reach the oxygen stage, it is physically impossible to get showered or even get dressed. It takes you longer—you just do not have the energy, and you have to stop and take a rest. It is debilitating, and there is nothing you can do about it. You get fatigued and cannot function properly. It is just a fact of life.

Although I do not have oxygen, I would say that most people at my level cannot do a lot of very basic things, such as changing a duvet cover. With simple things such as bending over to tie your shoelaces, you feel a bit dizzy and end up sitting down again. Very simple things become difficult. Although I can walk about on the level, stairs are practically impossible for me. I always look for lifts. If I am going anywhere, I plan a route that does not have a slope up the way, although I can cope with a slope down the way. Everywhere I go, I have to watch where I go and what route to take to get there and back.

I tend to wear slip-on shoes now, because I find it very difficult to bend to do things. I can hardly blow up the car tyres at the garage—I cannot bend down for long enough without getting fatigued. I have to get somebody to do it for me or buy some attachment to do it. I cannot work when I am bending down. It exacerbates the problem, and I cannot breathe or function.

I was at a course at which I spoke to and heard from a lot of people. It is evident that a postcode lottery operates to a certain extent for a lot of things—that is just a fact of life. Whether a person gets a stair lift easily—or at all—or whether they get things such as a new bathroom with grab handles and so on depends on what area of Scotland they are in. It depends very much on their local authority and on its funding. Let us face it: not all local authorities are funded well enough to do a lot of that. It all comes back to funding. We are asking for extra funds for all those things.

If I approached the local authority for assistance of that sort, I would like to think that it would send somebody out to do an assessment of my house and say yes to some things or “No, you do not need that” or “We can do this,” but as far as I am aware nobody does house assessments for such cases. Perhaps if you ask for a stair lift, someone will consider that, but somebody should come out and do a proper assessment of your house, help you to make up your mind, and provide not just what you need today but what you will need tomorrow, the next day and following that.

Because it is a breathing issue, it is not seen as being on a par with mobility issues. People do not relate the breathing difficulty to why you are not mobile. They do not understand that you cannot climb stairs and walk about because your breathing is not working. They think that you should be able to do that because your arms and legs work.

Yes, I think that it is.

I have not.

No. I suppose that respiratory specialists would deal with it. We are not medically informed enough to go into that depth.

We are just people who have the disease.

It must be the respiratory specialists—the people who eventually identify the condition.

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I have never heard anything said about that, and I have not asked about it. I have never spoken to a consultant in that way.

The condition was recognised by the doctor who dealt with me, who must have encountered it previously. Doctors must have experience of the disease before they can deal with it. There seems to be a special way of sounding the chest so that the crackle can be recognised. It is not just a quick case of the doctor saying, “Breathe in, breathe out.” It has to be done in a certain way. We do not think that all GPs are fully trained in how to do that.

I have no idea how health boards operate or how the whole system operates. We just know that there seems to be a lack of awareness and that the condition does not seem to be being dealt with. Who makes the relevant laws and arrangements is beyond us; that is above my salary scale.

I have had contact with the British Lung Foundation. It sent out something with my picture on it telling its people that they should support the petition.

That could be done, but there is a problem with restricting the approach to one that is based on age. Most people will have the condition long before they are diagnosed. Lots of people will have it before they are 60. I think that, in the past, it has been shoved to the side because it has been seen as an older person’s condition—the view has been that it is just people’s breathing going. If it were diagnosed sooner, it would not be seen in that way. It affects younger people.

As Jean Watson said, it is when you start to walk up a hill that you find out that you cannot do it. People do not walk up hills all the time. It is something that grows and grows; it is a slow burner.

Yes, of course I would—on the assumption that she was qualified to do such an assessment.

I am retired, so I cannot answer that.

That is a difficult one. Everyone is different. I stopped work and just took my pension, so I did not think about that issue at all.

The condition affects younger people, too. I was surprised to learn that one member of the support group that we attend is 39 years old—she is the youngest member. I think that she still works. Even so, she is entitled to claim some benefits.

We are not that knowledgeable on the benefits side of the issue.