 Ie- Turn�� gaden sydd gyntafon ni'n cytuno gwelio am llwysogi hon ac rydw yn gwlad yn 2019 wrth OHC. Mae ein gotf hon εhochent i chiел y wych angen i'r etym rha Something No 4 o'rwystech byd Funbench ym gynorth diwrnod. Ewch yn hyd. Fel hyn mae mi yn eu hun i eg trabaj yr BBC yngl往 roed. Mae i'r etym rha Something No 2 o'r ffeir Actang 10-1714, dodgyrchu alles o Twitter Fant coaster Minusol Tedars i Yn frozen ond hyffLord The petition calls for the Scottish Government to provide funding to help to raise awareness of the condition and the development of a cohesive national plan for home management. We have today apologies from Jackson Carlaw MSP who has expressed an interest in this petition and will continue to attend to our conversations and discussions on the petition itself. We will take evidence from two of the petitioners this morning, James McLaughlin I welcome you both to the meeting and I would invite you to provide a brief opening statement of up to no more than five minutes between you, after which we will move to questions from the committee to assist our understanding of the condition and to be clear about the action that you are calling for in your petition. Thank you all for giving us the opportunity of expanding on the issues that were raised in the petition to raise awareness of interstitial disease and in home management. Ivi and I are all sufferers, as you can see, of IOND and members of the west of Scotland IOND support group. Unfortunately, Ivi, due to health difficulties, was unable to travel to the meeting today. The thrust of the petition is for the Government to provide funding for the issues raised in the petition. I will not go back over all the issues in the petition because you seem to be aware of them. One of the main problems that we are finding is in awareness. There seems to be a complete lack of awareness of interstitial lung disease and statistics in the petition highlighted particularly in people seeking their first appointment with GPs. This delay of up to maybe two, three years for people going to the GP for their first appointment is completely unacceptable. We feel that this must be addressed by the Government and by all and by increasing public awareness. I myself am a sufferer, as you can see, with IOND and with hindsight I myself should have visited my own GP some two years before I did go. This basically was down to be I, like most people, was completely unaware of IOND and of its effects. I put down my increasing breathness due basically to age and to asthma, which I had been diagnosed with some eight years prior to my IOND diagnosis. I still receive asthma medication so there was no possibility of any bad diagnosis there. One of the other major problems is actually in the delay in diagnosis of IOND. IOND, by its nature, mimics many other diseases and ailments. It has no non-cause, except in a few industrial cases, such as mineers and people like that, unfortunately. There is no non-cause or trigger to start it. We suggest that this may be remedied for the particulars, as we set out in the petition when people go to their doctors. They automatically get a chest examination, whether they are sore or not, after over the age of 60 or round about that. Give them a chest examination. It only takes two minutes. Lift up your shirt, lift up your arm. Let's do that. That will help to diagnose IOND and many other respiratory diseases. Other illnesses and diseases, for example, lung and other cancer, currently have or are still getting very well-funded awareness programmes. Surely IOND and other similar respiratory diseases are well within the scope for government funding and for the implementation of whatever we can come up with there. This would increase public awareness and highlight that a quality of life is expected after diagnosis. It would also bring IOND out of the shadows and open it to public awareness and public acceptance for what it is. We sometimes find ourselves not in avoidance by the public, but there is difficulty in getting the public to accept that we have an illness, a deadly illness. Sitting by and taking this off, I hopefully look at the picture of health, but I am not. This is what we have to overcome. It should never be overlooked that IOND, idopathic pulmonary fibrosis, are insidious, insurable diseases with the ability to think birthness, as you can see. The petition highlighted the benefits of granted home management side, the benefits highlighted of home management and how it should be provided were highlighted in the petition. This, again, is within the scope of the government and local authorities. The provision of pulmonary rehabilitation is a main state in maintaining a quality of life open to sufferers. It gets us out and about, it keeps us mobile and it keeps us moving. Other home management necessities have been highlighted in the petition and they cover so many things. I am not having the time to go through them all. We would need to write a book and take a few days if we started to list and discuss all the effects of living with IOND from pre-diagnosis to post-diagnosis to actually living with IOND. We understand that a national respiratory plan for Scotland has been proposed and we feel that any delay in its formation and implementation can only cause untold suffering throughout Scotland. Therefore, we urge the committee to consider the petition and thereafter urge the government to act responsibly. 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. A lot of people use standard medication for that. I retired from work four years ago mainly due to a recurring cough and feeling increasingly tired throughout the working day. An exacerbation in my condition led me to being referred to hospital and I was eventually diagnosed with IPF. That was an illness that I had never heard of 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 in late diagnosis, mainly due to lack of awareness and understanding of their conditions. The symptoms that they display may be treated with the underlying serious condition not identified. Most patients have other serious health problems in addition to ILD, which are classed as comorbidities and make treatment more complex. Intestitional lung disease affects middle-aged and older people. We feel many people put up with their health problems due to lack of knowledge and the idea that they are just getting a bit older. This condition causes a debilitating loss of physical activity, leading to people being unable to care for themselves. The impact on their day in the life is considerable. From simple activities of looking after their house to experiencing emotional problems and feelings of social isolation. As that is an incurable condition, we feel that there is considerable need to raise awareness of ILD, to assist earlier diagnosis and to create a consistent approach to care throughout Scotland. I will answer any of your questions. Thank you very much for that and I appreciate that when it is something that is directly affecting you, it is even more of a challenge to bring the petition forward. The case that you made is really interesting. I had not heard of the condition before and the challenges that go with it. If I were to open up the questioning, you have already talked about the condition that mimics others or people think that it is something else. One of the things that you suggested was that GPs would carry out chest examinations as a matter of routine. Does that happen anywhere? Are you aware of any countries where that does happen? Even if they were taking the chest examination, did GPs know what they should be listening for and is that a problem? I think that it is a problem. I went into the petition, I think that we have asked for extra training for GPs or to fund extra training for GPs so that they can help them to diagnose ILD. It is a difficult disease to diagnose because it mimics so many other chest infections and various other things. ILD covers about 200 or 300 degrees of illnesses and it is very difficult for GPs to isolate and do it. Really they need full x-ray and thereafter in hospital care to diagnose it. We need GPs to be more aware of it. I personally was very fortunate when I did go to the doctor. My doctor seemed to have had patients with it before because he recognised it right away but we know other patients and enough of people in our group are terrible difficulties with their GPs in getting diagnosed. A simple chest examination would highlight a lot of it. There is a distinct noise or crackle that ILD gives when you examine a chest. That is all that is needed for the GP to say, right? I need to look at this further. X-ray and you are in the system. It is really about A, routine chest infection tests but also knowing what to hear so your distinctive crackle would be great. Does a different sound from an ordinary chest infection to a pulmonary fibrosis is a crackly sound? It is a different type of sound. It has to be examined. It is no good just saying that you have got a cough, you have got a sore throat, which tends to be what you get treated for, which clears up a wee bit but it never clears up totally. Eventually it keeps building up, which will happen anyway. The diagnosis will mean that you can receive the proper treatment earlier. There is a delay in treatment because a lack of recognition of what it is and people explaining why they are in condition. If you do not know what pulmonary fibrosis is, you just think that you have got a cough all the time or you have got a chesty wheeze all the time. I cannot hear my own chest crackle. I mean that this is unfortunate. Okay, thank you. Rachel Hamilton? You have covered the point about awareness amongst GPs and there seems as though you go through a long stage of misdiagnosis. No, that is kind of good. I am not sure if there is misdiagnosis. It is not aware of diagnosing, not misdiagnosing. It is missing the diagnosis, I think. Okay. I do not mind you saying so, I think that is the difference there. Sure, sure. No, I am glad that you clarified that point. I just wondered what is the awareness amongst the public as well. Is there resources, is there information out there for GPs and what are your examples of awareness amongst the public as well? There are lots of websites on pulmonary fibrosis, but if you do not know what exists, you are not going to look them up. If you tell the average person, I know that I have been diagnosed with pulmonary fibrosis, they just think, oh, you have got tablets for it, so that is okay then. They do not really understand what the condition is because you really do not hear about it. Can I just clarify Jim on your point? Sorry if I call you Jim, but Jim did. You were talking there about there was a delay of two to three years in seeking your first appointment and that was because you had not realised that you thought it was your age, then eventually there was this asthma. I have been diagnosed with asthma about six or seven years before that. With my increasing breathlessness, I just put it down to really getting older and was not as active. Think about it. The asthma treatment was working for the asthma side of it, but I was still getting breathless or getting increasingly breathless. If, for example, you were successful in your petition and there was funding available and it was resourced for an awareness campaign, you would have realised that perhaps you would have got the condition and you could have highlighted that to your GP. Before that stage was reached, I was certain that my wife would have said, that cough is getting worse and worse and worse and worse. Get to the doctors and I say, it's going away, it's going away. It's just asthma. I'm getting older. This is public awareness and that is a public awareness that leads to the doctor's appointment, that leads to the doctor's diagnosis and this is the sequence that we've got to follow through. The flu jab has an awareness, it has a public health campaign behind it. Do you think that there could be merit in looking at doing the checks alongside something like a flu jab when you go for that and over a certain age, for example, say over 60s, over 65s? The flu jab does tend to go along with an age profile as well. If you were diagnosed with it, you get those vaccinations younger, you get pneumonia and the flu at a younger age than you would from your GP normally. I'm thinking in the lines of a preventative agenda. If you went for your flu jab, they'd do a sounding. That would only take a couple of minutes. Yes, it could be. So just to clarify on that, do they currently do that? Do GP's currently do checks? No, not when you go for your vaccinations because you usually go to a nurse, you book in for your vaccination, you go to a nurse and she just asks you if you feel well right to stay for your vaccination and you don't get any soundings or anything, no? Well, I haven't. With the flu jab that I've had, you get an appointment for the doctor's consultancy and just say Saturday between 10 and 12 a new and a bit 200 people will turn up and queue up to get here and you're giant so that there's no possibility of any examination. I suppose, sorry, convener, just one more point. Do you think that ILD should be put and other conditions should be put on a parity with the likes of the public awareness of COPD and asthma? No, it's the latest about that. Have you speak to the average person in the street and you say somebody's got lung cancer? They know what it is. If they say they've got COPD, they know what it is. If they say they've got asthma, they know what it is. You say ILD. Have you stopped smoking, Jim? Or have you better stopped smoking? I think that the word disease tends to put it into people's mind. You've caught it, but you don't catch it. It just develops in you. Okay, thanks. Okay, thanks, convener. Good morning, Jim. In your initial submission, you provide statistics that are taken from the British Theracic Society ILD Registry programme annual report of 2015-16 that show the elapsed time from initial onset of breathlessness to presentation. Just for the record, I'll give you the figures. It's 46 per cent waited over two years, 25 per cent waited one to two years, 20 per cent waited six to twelve months and 8 per cent waited less than six months. So can you tell us if these are the most recent figures and also do they relate to the whole of the UK? And perhaps you could tell us if you've estimated how many sufferers there are in Scotland. As far as the statistics go, we haven't been able to find any statistics that actually say how many sufferers there are in Scotland. There was something in the parliamentary questions that I looked at that were answered. It was Colin Smyth and Jo Fitzpatrick, and I looked through the questions and answered, and one of them related to the number of people that had received pulmonary rehabilitation, and it referred to the answer in the answer that it brought up on a table. And in the table, I couldn't quite relate it to the question, okay? Because the table says the number of patients discharged from an acute hospital with a diagnosis of interstitial lung disease by year 2014-18. That doesn't actually relate to pulmonary rehabilitation, and it doesn't really reflect the number of people diagnosed either, because being in hospital and discharged means you've been an inpatient, and someone like me has never been an inpatient. I'm only an outpatient. So lots of people like me are not included in any of those statistics that are available, and we've not found any other statistics. That actually says how many people in Scotland have it. We haven't found that. We can't find that anyway. One of the things I think last in the petition was for the people who make these records up if they could record it better, and rather than putting down respiratory illness, respiratory disease, or breath illness. Well, that there are codi. Thanks for that. It does tend to revolve around hospital admissions, hospital discharge. Most of us are actually just people who attend the respiratory clinic, although it's a chronic disease. We're on their books forever, really. It's a three-monthly appointment I get, and I just keep turning up every three months for the tests and all the various things, but I won't be in those statistics. OK. In reply to your first question, it asks, we think that British thing is a UK. Uh-huh. We think it's a UK. It's a UK. It's certainly not split up between Scotland, Wales, Northern Ireland, and anywhere else. With regard to the breakdown, if we're moving this petition forward, we can, hopefully, request a better breakdown if it's available. OK, that's Brian Whittle. I can hear you, actually. Good morning, Jane and James. Just to go back to the annual report and further to Rachel Hamilton's question, I'm really interested in this idea, the suggestion that people are delaying going to their GP. Presumably, you understand that something's amiss. I just want to understand why that, why you would then delay going to the GP. Initially, it was x-rayed, much more than six years ago now. You have one x-ray, and if it's not 100% clear, you wait, and you can have another one. But at the end of that, I was told, well, it looks OK, and if not, your blood tests are OK, and this is OK, and that's OK. So it'll, yeah, cough will probably clear up, and it's just a kind of reason thing you've had. So it kind of goes on like that, and take the allergy tablets, take the stomach tablets. So that actually went on for quite a number of years, as I said earlier on. And eventually, you have what is classed on exacerbation, where it just becomes worse. It's like getting a chest infection. So you go back again, and at that point, I was eventually diagnosed. But only because I did actually say, look, I'm here because of my breathing. It's not just the chesty cough, it's much more to it. And eventually, I went through all this. You have to go through x-rays and a CT scan, as well as seeing the specialist, then you're diagnosed. The GP himself can't diagnose, they refer. The delay is actually because you're left with kind of annoying symptoms that don't quite go away. But they'll clear up a wee bit in the good weather, and then they'll get worse again in the winter. So you're on cough bottles and various things, as everyone else is in the winter. And as in breathless, it does grow on you. It gets worse. It gets worse. But if you're not active in doing something a wee bit more strenuous, you don't really know you're getting breathless. If you're sitting about, and if I take this off, I could sit all day, basically, as long as I don't move. But as soon as I start moving, I start to get breathless. And when I eventually had to go, it was when I found myself cutting grass and things like that, when I just used to go up and down and up and down. I was going up and down, and then I was taking the rest. Then I was going up, then I was taking the rest. Then I was going down, and I was taking the rest. And it's like, nope, I'll have to do something. Or I'll say, hey, do something about this. You realise then you have to do something about it. But up till then, unless you're pushed to that limit, you don't really know you're breathless unless you're exerting yourself. And that is when you find you are breathless, and then it gets increasingly, and it grows. I mean, it just grows on you. I just thank you for clarifying that, because I was, when you initially said this, I thought it was a man thing that we just don't go to the doctors. But what you're actually saying is that it's not the initially going to the doctors, it's following up on that zone. You go to the doctors, you get some kind of diagnosis, and then you accept that diagnosis for a period of time before returning again to the doctor to say that you feel that there's something more going on. That's what that report means. Thank you very much. Thank you, convener. Good morning, Jeane and James. In relation to home management, the information provided in your petition appears to suggest that principally comes from friends, family and relatives. Can you expand on this? I'm not at the stage of, we work between as I'm married and I've got a husband obviously, and we just work things between us in the house. But if I was on my own, I would find it very difficult to actually do very basic things about the house. I think at the later stage, as in, I don't have oxygen, I just have tablets, but everybody eventually gets oxygen. And I think if you had oxygen, you would really need to help most of the time. You do need to help. You find yourself unable to, if you're in a family, you're unable to do your share of what you used to do. You just can't do it. It's physically impossible to do it. Getting showered or even dressing and things like that, it takes you longer. You just haven't got the energy to do it. You've got to stop and take a rest. When you reach the oxygen stage and places like that, but you generally are working towards that, it's debilitating and then you can do about it. You just cannot function properly and you get fatigued. Just a fact of life. Although I don't have oxygen, I would say that most people at my level have a lot of very basic things you would do, like changing a duvet cover, I can't do. Simple things like bending over to tie your shoelaces. You feel a bit dizzy and you end up sitting down again. It's very simple things that become difficult. Although I can walk about on the level, stairs are practically impossible. So I always look for lifts and I'd look for a planar route. If I'm going anywhere, I plan a route that doesn't have a slope up the way, but I can cope with a slope down the way. So everywhere I go, I'm watching where I go and what the route is I take to get there and back. I now tend to wear slip-on shoes, et cetera, because I just find it very difficult to bend and do something. I can hardly blow up the car tyres if I go to the garage. I can't bend down long enough and stay without getting fatigued. I cannot do it. I've got to get somebody to do it for me or buy somebody that can attach it. I just cannot work when bending down and bending down is average. You just cannot breathe and you just cannot function. In your petition you say that there's not a uniform service from local authorities across Scotland. Have you got any examples of this and how much help do you actually get from local authorities? I was at a course thing and speaking to a lot of people at it and hearing all them, and it's quite evident that a postcode does operate to a certain extent for a lot of things, and that's just a fact of life. I think it depends on what area in Scotland, whether you get a chair lift easily, or whether you even get one at all, or whether you get minor things like a new bathroom or anything like that, or even grab handles put on somewhere, it depends very much on your local authority. It depends on their funding, because let's face it, they're not all well-funded enough to do a lot of that, and it all comes back down to funding, and that's what we're asking for, is extra funds for all these things. Brian Whittle. Just follow on from that. I'm presuming what you're discussing here is obviously once you have a diagnosis and specific requirements you've mentioned, stair lifts, presumably walk-in showers or toilets, et cetera. Given that you've said that it's a condition that's not readily recognised, or long-term recognised, I'm presuming then that that exacerbates that difficulty in accessing those extra items that you need, and also what other items would you include in there? Are those things that you want to see included in that sort of cohesive national management policy that you've suggested that you would like to be established? A lot of questions, yes, right? I would think that if I approached the local authority for assistance like that, I would like to think that the local authority would maybe send somebody out to do an assessment of my house and say, yes, yes, yes, oh no, no, you don't need that or we can do this, but nobody does that. As far as I'm aware, nobody does a house assessment for cases like that, and maybe if you ask for a chairlift, someone will look at that. Maybe if you ask for one thing, that somebody should come out and actually do a proper assessment of your house and help you make up your mind and provide not just what you need today, but what you're going to need tomorrow and the next day and the following day. Is that perhaps along the lines that you've suggested before that it's a condition that's not recognised? So when you approach local authorities, it's not in their book, so to speak? I think that it tends because it's a breathing issue. It's still not seen as being in a par with mobility issues. People don't quite relate the breathing to why you're not mobile. They don't quite understand why you can't climb stairs and walk about because your breathing is not working. They think, well, your arms are legs are working, so you should still be able to do it. It's just lack of knowledge. Yes, I do think that. You talked about extra training for GPs, the fundamental issue that even if they were listening they're not hearing, they don't know what they're listening for. Who do you think should conduct that training? Have you had any discussions with bodies that represent GPs? I haven't. No, but I suppose it would be respiratory specialists to deal with it. Beyond that, we're not medical enough to really be into that depth, you know. We're just people who have got a disease. Yes, I think that that would be the respiratory specialists too, who are the ones who are against buying things. Have any of the clinicians that you've come across talked about this as an issue about the lack of awareness among those that are referring to them? Do you think that this is something that the medical profession itself, at the level where they do understand it, are aware that it's a disconnect? I don't have anything said, and I've never spoken to a consultant in that way. The consultant has asked what answers are, so then my own experience, I was recognised by that doctor who had experienced, must have had, experienced of it beforehand, but it's a thing they've got to experience before they can deal with it, and there seems to be a way of even sounding the chest to recognise the crackle. It's not just a quick breathe-in, breathe-out, you've got to do it a certain way, and we don't think that all GPs are fully trained for this. I'll bring Rachel in a minute, but the other question that I wanted to ask you was, from those questions that Colin Smyth asked and Joffith Patrick responded to my understanding is, basically, Joffith Patrick has said that, as the minister, there's a matter for clinicians and for health boards. I'm assuming that you think that's how there needs to be a more central direction than that, that it can't simply be left to the health boards themselves to decide how much for priority they give the condition? A person, I have no idea how health boards operate and how the whole system operates, we just know that there seems to be a lack of awareness and a lack of what it's been dealt with who makes these laws and who makes these arrangements is beyond us, as you say, it's not my salary scale. I think that the other point that you make about keeping people at home makes sense for the health service and, therefore, people managing the condition is actually relieving resources within the health service. Rachel? That was just a supplementary question to your question, Joanne. I would imagine that it would be determined by the prevalence rate compared to other conditions. Obviously, there's a competing demand across many conditions to raise awareness and prioritise certain conditions. First of all, I think that it's important that the statistics are right, because there is a lack of Scottish statistics. However, have you worked at all with the British Lung Foundation? I have had some contact with them, yes, and there was something put out with my picture on it to all sufferers or their people anyway, showing that they should support the petition, etc. Just another point that Joanne made about GPs, is there any merit in looking at other healthcare professionals such as practice nurses doing the check and becoming part of a package of... I know that you said it, the age thing. Perhaps it's not relevant to this condition. However, Jim said differently and said that he thought it was because of its old age. Could there be some checks? That was my point with the blue jab rolling it into that, so that you're reaching more people. It could be, but the problem with restricting it and saying it's age... If you take into account that most people have it longer than they're diagnosed, lots of people will have it before they're 60. That's one of the issues that is being seen as older, so it's been kind of... I think in the past that we should have decided it because it's an old condition and it's just your breathing going. If it was diagnosed sooner in some way, it wouldn't be seen like that. It does affect younger people. As Joanne says, it's when you start to walk up a hill, you start to find out you cannot do it, and you're not always walking up hills. It's something that grows. It's a slow burner within you. It's just growing and growing and growing. Sorry, Jim. If you had got the opportunity to go to another healthcare professional such as a practice nurse in a more informal manner than to make an appointment with a GP, would you have done that? Yes, of course. On the assumption that she's qualified to do it, yes, of course I would. I wonder if you... Given that there's a lack of awareness of the condition, how it's felt, how it's experienced, how it's then treated, is there an issue about people who have the condition not then being given the relevant support within the benefit system, the social security system? Everybody's different. When people are older, certainly by the time I start work, I just start work through my pension, so I didn't actually think of anything like that at all. Obviously, if you were younger, and there are some younger ones in the support group that we attend, I was surprised at the youngest 39, but I think she still works, but they are still entitled to claim some benefits, but we're not that knowledgeable on the benefits side of it. It may be one that the condition itself might flag up that the system more general. I appreciate it. I think we've come to the end of our question, so thank you very much for that. In terms of how we want to take this forward, Angus made a point about whether it would be possible to get a breakdown in statistics. We should, I think, be asking for that, Brian. Two things jump out from your data gathering, which seems to be a theme that runs through quite a lot of these kinds of investigations. The other thing that strikes me is that, if I was a GP watching the Petitions Committee on a regular basis or the Health and Sport Committee on a regular basis, the call for them to retrain across what we did with ME last week, we've had Lyme disease, now we've got ILD, I'm wondering whether there's a bigger piece of work around it. Two recurring themes are GP knowledge and data gathering, and I'm wondering whether there's a bigger piece of work here. Maybe not for this committee, but for the Health and Sport Committee. If I was a GP watching this, I would be hiding under the desk that the number of things I've now got to retrain on that we continually hear about. I'm just wondering whether he's putting it out there. It could be nothing. It's something that we could do in contacting the GP's association. I'll just strike me that there will be very few GPs that will be watching this, given the amount of pressure that's under them. If you don't know about conditioning and you're not aware of how to identify it, the gap is not in the GP, it's the gap in the system that's not making sure that they're informed of that. I certainly think that we should write to the Scottish Government to ask its views. The fact that Joe Fitzpatrick and his responses said that there's a matter for health boards and clinicians probably isn't sufficient if there's a lack of awareness. Anything else that we should be doing, Rachel? I'll write to NHS Education Scotland to look at what they're doing in terms of the information that is out there for awareness. I also wonder whether we should ask ISD what they're doing with regard to reporting on ILDs for the statistics. There was mention earlier about the national respiratory plan, but I need some clarification on where that is. Has it been completed or has it still been worked on? I don't think that from what I read, it's been started. I don't think that there's anything on. I think that there's an intention to do it, but I don't think that I've got the point of bringing even people together with terms of reference, but I certainly could ask the Scottish Government about that as well. It would be good to get an update on that. In the first instance, it is about perhaps contacting stakeholders who have an interest and is hearing me being able to add to the information, but particularly to the Scottish Government itself, what is its view on prevalence of the condition, awareness of the condition, training for the medical profession and supports to people who have the condition, and this question about whether it feels to me to fall into preventative medicine. That is that people, if they're supported to manage their condition at home, they're less likely to be having to go into hospital or whatever, so it kind of fits in with all of that. Anything else, specifically, that we're doing at this stage? I think that's a good start. What are some of the charities that are involved? We can identify what those are, and we can contact them in terms of the obvious ones being the Chest Heart and Stroke Bridges Thoracic Society, Bridges Long Foundation, which were mentioned, but if there are others that you're aware of, then you can let us know. It was mentioned around what would happen if you approached the local councils, and the cause law would be something that we would consider speaking to what the local councils approach would be to this. How do you think that they deal with it? Obviously, the home management was mentioned, and that would be a part of how much treatment in NHS setting or home management, and that balance. I think that if we stick with cause law and just simply contact them to see if there's something that they're aware of and what is their any guidance on it, that would be a good starting point on that. There's quite a lot to be done. The most critical one probably is the Scottish Government itself, because we're asking them to think about what appropriate training is, what the awareness is amongst the profession, but also for people in the community who may have the condition. That is significant. When we get responses back, the petitioners will be informed of what those are, and you'll be able to give further comment before it comes back to us, so you'll be able to put your stamp and view on what we're getting back, and that would be immensely helpful to our next consideration. I think that we recognise the importance of what you've brought here today and the significance of it, partly because nobody knows about it, which tells you something in itself, and therefore, as a consequence, there are things happening, which are probably making it more difficult for people to live with their condition, but it's also probably ending up being more costly to the system as well. I want to thank you very much for that. We have found that very useful, and I think that there's a lot of useful information that we'll now seek. As we've said, once we have that and you've had to look at it, you'll be able to give us your further views on what that says. I thank you very much for your attendance and can I suspend the meeting briefly to allow the witnesses to leave the table? If we can call the meeting back to order. We're now moving to the next petition, which is petition 1715 on closed containment for salmon farms in Scotland. The petition was lodged by Mark Carter on behalf of Marine Concern and seeks action to ensure that the salmon farming industry in Scotland uses only a closed containment method of farming. The note prepared by the Clartons and Spice outlines a number of steps that have already been taken in this area, including separate inquiries undertaken by the Environment, Climate Change and Land Reform Committee and the Rural Economy and Connectivity Committee. Those committees recommended that independent research and the benefits of closed containment farming methods can be undertaken as a matter of urgency. In its response to the Rural Economy and Connectivity Committee report, the Scottish Government stated that the industry was already undertaking research in this area. Are members of any comments or suggestions for action based on the information that is set out in their meeting paper and further to yesterday afternoon's debate on the issue? Okay, thanks convener. Well, certainly as a veteran of the 2012 Aquaculture Bill, I have certainly learned more about salmon farming and world fisheries than I ever thought I would. In yesterday's debate in the chamber on the Rec and the Clear Committee's joint report, there was unfortunately little mention of closed containment, although it was highlighted that they are moving forward at a pace with it in Norway. It is clear that closed containment would have a massive environmental benefit, but there was no indication yesterday from the cabinet secretary that that is a direction that the Scottish Government is keen to move forward at a pace, or certainly not going at a pace to the extent that the petitioner is looking for. It may well be that the closed containment is the answer to the majority of the environmental problems that the industry is facing, and I personally am keen to see it move forward. Given that we did not get a lot of clarity on it from the Government yesterday in the debate, I would certainly be keen to write to the Scottish Government to ask exactly where they are with regard to supporting it in the industry, and that would allow us to decide what next steps we can take with the petition. Any other comments? I would agree with that. I have only been on this committee for this term, and, like my colleague, I now know more about salmon fishing than I could possibly know, but I think that there is certainly an interest around closed containment, and I think that there is an interest to see what the argument against it is around this cost prohibitive at the moment, but I would be interested to see what the Norwegian model is. Again, like others, I do not have a lot of expertise and experience in the area, although I am conscious that it is something that the Parliament has looked at since the very early days. I am interested in recognising economic significance in some remote communities of some very high-skilled jobs, and whether closed containment has animal welfare issues can feel to me that being in a box on land is something natural or even akin to what a salmon would experience, but, as I said, that is not something that I have any experience on, so the idea that we would get clarification from the Scottish Government if there is something that they are actually looking at, because I think that it does not sound as if that was what I had thought that the debate and the report from the committee would really address the issues that have been highlighted, but maybe that is one area that we want to look at a wee bit further. Yes, and I think that it would be good at this stage to hear from the industry as well. Righting to the Scottish Salmon Producers Organisation and possibly some of the main players, such as Marine Harvest or Scottish Salmon Farming Company, who may well be developing these. The problem is that the joint report that was conducted by Sam's and the resultant report by the two committees was done about a year ago, and things are moving forward, so it would be interesting to see where they are now. Ask Angus on that. The inquiry that was done into salmon farming was quite extensive, and are you saying that you believe that technology and advancement has moved on so much so that the closed containment was not looked at at that point? No, it was looked at. There is reference to it in the report. What I am saying is that it was not discussed in much detail yesterday during the debate in the chamber. But no, there is certainly development in Norway with regard to closed containment, and we could find out exactly where the Norwegians are with it as well. If that is agreed, we would, as Angus suggested, write to the Scottish Government in particular, but perhaps to those others who have an interest in the industry around the specific question of closed containment. If that is agreed, we can move on to agenda item 3, which is consideration of continued petitions. The next petition is petition 1700 on progression of the process for a section 30 order to hold Scottish referendum on independence from United Kingdom. The petition was lodged by Martin James Keatings on behalf of Forward as One. We considered this petition in September last year and agreed to write to the Scottish Government for clarity in its position on a possible referendum. The response from the Scottish Government states, quote, The First Minister has made clear that she will provide an update on the issue of an independence referendum when there is greater clarity about the terms of Brexit. And as recently as a day or so ago in a speech in the USA, the First Minister confirmed, quote, I as First Minister have said I will outline my thoughts and the timing of another independence referendum in the next few weeks. The committee has received around half a dozen emails in recent days urging the committee to support the petition. I think that, as we have said in previous meetings, the Public Petitions Committee is a cross-party, so it is not expected that it will agree on the merits or otherwise of a referendum on independence. The briefing note includes a comment on engagement with the public as the petitioners seem concerned that the public's views on this issue had not been adequately heard. I wonder if members have any comments on this aspect. In terms of the petition, do members feel that there is anything further to be gained in keeping the petition open? I do not want to get into the merits for or against a referendum, but I cannot avoid strain into a political comment here, convener, as a member of the SNP. I can fully understand the petitioner's keenness to see a section 30 order requested, however. The petitioner will be fully aware of the First Ministers and the Scottish Government's stance, which you have alluded to in your remarks, convener. The petitioner will have seen the most recent utterances from the First Minister that she will be making. Her position and the Scottish Government's position is clear in a matter of weeks. However, although Brexit saga continues and develops into what I would class as a nightmare, it is clear to me that we need to see what transpires over the next few weeks, first and foremost, before we hear what the final position is of the Scottish Government. I think that the Scottish Government's position could not be any clearer at the moment, given the turmoil that the country is experiencing. Again, I am not going to stray into party politics here. We must respect anybody's opinion and whatever that opinion happens to be. The only issue that I have for this petition is that it leaves it open for another petition to come in to speak against it. What we would then be doing is taking the independence debate an issue from the wider population into a committed debate. I think that we understand that it is the Scottish Government's responsibility to bring this forward if it is their wish and for that debate then to happen. I completely respect the petitioner's views here. I am not sure how, in petitioning the Government or petitioning this Parliament, that forces the Scottish Government or encourages the Scottish Government to do something that it is already considering. Let's face it, it is your resident debtor. It is already your resident debtor, so I am not quite sure where the petition lies within the whole debate, to be honest. I suppose that the test for me around the effectoriness of the petition's committee is highlighting something that people are not aware of. Is it giving an opportunity to have a debate that would not happen otherwise, or is there a lack of clarity on the part of those in authority about what their position is? All those grounds, the petition, in my view, is not one that we would gain a lot from continuing because it is clearly going to be debated. People around this room will be in different positions on that petition, even though we are often very much agreed on the impact of Brexit and so on. It is something that is going to be debated, whether I want it to be debated or not. It is very much part of the political debate across the country, and the Scottish Government has made very clear what its position is, which is that it will not pursue it to a later stage, but it is clearly something that is continuing. In a sense, the debate for me is something that Scotland continues to wrestle with, but I do not believe that the Public Petitions Committee is where we will wrestle with it, because it will continue anyway. It is not that we are putting a block on it, it is not that we are preventing that debate happening. I am very conscious that it is something that runs like a current still through Scottish politics, whether some of us are like that or not, and, certainly from the point of view of the Scottish Government, they have made clear their position. I suppose that my own view is that we should close the petition, and I am interested in other people's views, but it would be because I am absolutely certain that that is not the end to the debate, and the Petitions Committee will not be where the difference that we have on the question will be resolved. I do not know if that is David, if you want to say it. Convener, the Scottish Government has clarified its position, and I am quite happy about you on this. This debate will be carried out elsewhere, and it is not for the committee to take it forward like that, so I will be happy to support you to close the petition. Does that agree then? Okay, we agree that we would close the petition in the grounds that the Scottish Government has clarified its position. There are likely to be many opportunities of the Parliament to debate the issue and for constituents to engage with members. There are many channels through which the petitioner continues to raise the issue. I want to emphasise again that it is not about having a view on what the petition calls for, but whether that is the best place for that conversation to continue. We would want to thank the petitioner for bringing the petition forward and for this opportunity to clarify the view of the Scottish Government on the matter, so that is agreed. In that case, if we can move on to the next petition, which is petition 1463 on the effect of thyroid and adrenal testing, diagnosis and treatment. I welcome Elaine Smith MSP for attending during the consideration of this petition. The petition was lodged in December 2012. It was first considered by the Public Petitions Committee in session 4, with consideration continuing in session 5. On 29 March 2018, the committee published a report on the petition 1463. A debate in the petition was held in the chamber on 4 December 2018. There were several issues that came out of that debate that we may want to consider. There was a ministers confirmation that NICE intends to develop a guidance, a guideline on thyroid disease, with publication expected in November 2019. The minister also highlighted that the Deputy Chief Medical Officer, Dr Gregor Smith, has met representatives from NHS Education Scotland and that an endocrine learning module has recently been produced for GPs. The Chief Medical Officer's speciality adviser for endocrinology has been asked by Dr Smith to review that in light with issues raised through the petition. In relation to the prescribing of T3, the minister has undertaken to write to health boards to confirm that patients who need access to T3 under an endocrinologist can obtain it. I also asked all members to make them aware of any instances where patients cannot access this as a treatment. There were also a few calls for a short inquiry to be carried out by the Health and Sports Committee. Obviously, any such inquiry would be a matter for the committee and it would need to take into consideration its other work programme commitments. The cost of T3 was also raised as a possible barrier to treatment, and, as was mentioned in the debate, the pricing of medicines is a reserved matter. I wonder if members have any observations that might be helpful to hear from Elaine first, given that you had participated in the debate and have pursued those issues over a significant amount of time. Thanks very much, convener, and thanks for allowing me to come along to the committee. First of all, I will start by thanking the committee for their work and the debate in the chamber. Obviously, the committee knows what the issues are very well. It can be quite difficult at times to get to grips with, but I think that the committee did manage to do that. I can also just on the record thank Dr Toff, who is retiring, I have just heard. He himself has been known as a thyroid journey over the past decade, often against some intelligent establishment views and just also because he saved my own life, the lives of others. I can also most of all thank Lorraine Cleaver, who had hoped to be here today, but unfortunately she could not be. T3 was not really her issue, but it kind of took over the debate to some extent because of the massive price hike, meaning that the boards were refusing to prescribe it. What Lorraine wanted when she started out with the position was to help other people to avoid the horrors that she had been through, but hopeful that an outcome might be that she could get her own discarded thyroid hormone on prescription here, rather than having to buy it over the internet. We have obviously not really reached that stage, despite it being the only treatment and extremely effective until T4 was invented and made money for the pharma industry. We know that it still remains unavailable in this country. It is not something that can make money out of and that is unfortunate. I think that the paper today and the way you have outlined it, convener, if I might say, is very informative. It highlights some of the remaining outstanding issues at one of them is the possible health inquiry and was supported, as you said, by some health members in the committee. I think that the main reasons for the health inquiry would be that it is an ongoing issue. It is directly affecting health and wellbeing of patients who are mainly women. Although the petition has helped to raise the profile of that issue, it has not been a resolution to all of the issues. We need some more clarity on the guidance by government and health organisations. There are inconsistencies, and I think what the health inquiry might do is, if we think about the mesh inquiry, if it could hear directly from women who are suffering and what the issues are, then that is really, really powerful. Perhaps even from endocrinologists who are prescribing T3 and have seen the differences. In some ways, it is important to support that because they are also up against the establishment. Obviously, it is up to the health committee. I have written to them, and I think that I have sent you all a copy of the letter that I have sent to the health committee. Unfortunately, you pointed out that the minister has said that he would write to health boards. He may have done, but unfortunately, nothing has changed. I sent some examples to Jo Fitzpatrick, and the reply that I got was rather worrying. It said that it is important to emphasise that clinicians can prescribe T3 or recommend prescribing T3 for an individual patient if their symptoms are not adequately controlled with T4. That decision is ultimately for the clinicians involved in the case, but it then goes on to say that it is the relevant NHS board to take. Unfortunately, the relevant boards—specifically the three that I have been dealing with at the moment are NHS Tayside Grampian and Ayrshire and Arran—are still refusing to prescribe T3 to patients. I am not going to take much longer, I know that committee members may want to come in, I would imagine they would. However, if I could just share with you some of the words of one patient to yourself, in fact, I said that the words spoken by Ms Fitzpatrick gave me real hope that my fight for T3 was finally over, while NHS Tayside has removed T3 from their formulary. That is the procedure on prescribing T3. I cannot put into words how angry, disgusted and frustrated and upset I am. She says that it is a cruel blow and that it was hard to bear. That was just dated 2 January, so it is very recent. She is not getting her T3. Another one is saying that she has been on a combination T4, T3 for 10 years. Without T3, I am unable to function properly, struggling with mental health at the moment as it is, only just starting to plan for my future. Basically, if my T3 is stopped, it might as well just give me a loaded gun. That was dated to say that the end of last year was after the debate. That is another on-live case. Again, another one that a woman couldn't get it, but she is getting it, buying it privately. She has doubled her kidney function on her own and she can breathe without inhalers and steroids. She is having to do that on her own because she is not getting the T3. Unfortunately, the committee's work has been excellent. The debate was really good. I was really heartened by the minister, but this clause, if you like, in his letter that it is up to health boards. Unfortunately, health boards are taking that to mean that they do not have to prescribe it, even when clinicians are. I think that it is essential that the Government addresses this, the genuine experiences and concerns of patients and sufferers. I think that, if I might suggest that the committee keeps the petition open just now, simply because there are so many outstanding factors, not least that the health boards are still not prescribing it. I think that there is a lot of follow-up to be done from the committee's debate. I am certainly trying to go through it at the moment and pick up things that I want to write about myself of interest, but I think that some of the committee might want to do as well. For instance, Dr Smith's comments and maybe just getting some feedback on what has happened with that, but the most worrying thing is that health boards are just basically ignoring what the minister said. They are ignoring clinicians, and they are certainly ignoring women whose lives depend upon their treatment. Thanks for that, Elaine. I think that what I took from the debate and was reassured by and had some constituents' cases was that they got a diagnosis, they got a prescription by the clinician, but then the system was saying that we do not have to prescribe that, we are not going to prescribe it, even though it has been identified as what you need. I think that the reassurance that we got in the debate was that that was not the case, and you are saying that in a quite emotive and powerful language, people are talking about the impact on them. The question for the petitioners committee is not that those issues remain and are significant is whether we can help or whether, in fact, we should be passing on to the health committee, given the minister's commitment and the question of accountability. From the petitioner's point of view, we have to think about how productive we can be and also be alive to the fact of how long the petition has been on our books, if you like. Brian? Interestingly, a lot of my information came from a man who is a friend of mine, who is suggesting that T3 has changed his life around, so I know that it is predominantly women, and it is not exclusively women. I think that the debate in which I took part, and I thought that I was very hopeful, having sat through it and taken part in that debate, and listened to the reply from the minister, and that perhaps we were getting ourselves to a position where the committee could step back from this. There are a couple of things that, as I said, the inconsistency around the health boards that still nag away at me here. I know that the Health and Sport Committee is considering doing an investigation, and perhaps we should write to them to ask them whether that is something that they are going to do. I would also like to hear from Joe FitzPatrick about having written to all the health boards what the responses have been. If we have highlighted certain health boards who are recognising that there are patients who require T3 as a treatment, but they are not prescribing it, why do not we just ask them directly why not? That in itself, to me, would put a little bit of pressure on them. It is important that we get the clear reasons established, because within the debate it was very much teased out that it was due to cost and supply issues of T3. I am wondering whether it still is the case within the health boards that it is not clinical reasons that they are not allowing this essential drug to come forward, but it was due to the cost and supply issues. I do not know how this committee can take that forward if that is a reserved matter. I think that it is quite a weak position if we say why do not the petitioners take this forward with their local MPs? If there was anything to add to Brian's letter to Joe FitzPatrick to find out what is the true reason why the local health boards are not releasing this, is it really due to cost or is it really due to choice and the clinical reasons? If you look at the actual cost to the health budget, although T3 in itself is comparatively expensive, the overall cost and the number of patients that have actually been treated by it does not actually amount to a huge amount of money. That is why it nags away at me this idea that it could be cost, because the actual cost to the health budget is not that high. I am just wondering if it is more appropriate now, because I think that the public petitioners are probably taking it as far as it could go, especially if the debate in Parliament that the health and support committee is having an inquiry in it. We could ask him if he would do it, as both me and Brian are on the health and support committee. I think that they would probably be able to take it a bit further than they have what we can now. I would share the comments made by other members regarding the minister's reassurances or the disappointment that the minister's reassurances have not been followed through at health board level. Like everyone else who was in the debate, I left the chamber feeling quite heartened with the response that we would have got from the minister, but if there are still on-going issues, they clearly have to be addressed. The best way to do that would probably be a health and support committee inquiry, but, following on from David Torrance's suggestion, we would need to get confirmation from the health and support committee that they were going to go ahead with that first before we could close the petition in all fairness to the petitioners and Aileen Smith, who followed us from day 1. I think that we need to get confirmation first that that would be the course of action that they would be happy with before we close it because there are clearly unanswered questions remaining. We have the option of referring the petition to them, but I think that I detect a bit of a niche that we simply do not have any certainty that the inquiry would be conducted. However, there is a particular role for the health committee in holding the minister to account and the health board's account in a way that perhaps we cannot do. Really, the outstanding question then is—I think that my sense is—that we do not want to close it, but we want to contact the health committee and get confirmation of their interest in doing inquiry. The only outstanding point then is whether we want ourselves to do anything in relation to the health boards at this point, in the lines that Brian has outlined. Rachel? I know that we had the debate and Aileen Smith was very keen that the recommendations of the inquiry were put forward to the health and support committee. I know that Miles Briggs said the same thing. However, I have got a niggle that we should really speak to Jo Fitzpatrick prior to giving this to the health and support committee. I do not know how onerous that would be for the committee, but just to say that we have done the inquiry, we have had the debate and there are still unanswered questions, so I do not feel that it has been properly rounded off. We are not suggesting that it would be rounded off. I think that everybody recognises that more work has to be done. In my view, the best place for that to happen is within the health committee, but what we are saying is that the work needs to be done, and if the health committee is not going to do it, we do not want to let go of the petition in case that is the decision that has been made. In either event, Jo Fitzpatrick is going to be in front of a committee, is not he? I suggest that what we do is that we recognise that there are issues that we had thought had been identified and clarified in the debate that are still questions for us. I think that the correspondence that Elaine Reads out would trouble anybody that people feel that they have been left in that position. Our preferred position is that the health committee would conduct an inquiry, but we recognise that that is out with our gift to determine what happens. We would write to them, and if it is not going to be done through the health committee, we need to reflect further on what we would do. At that point, that might mean that we would be bringing representatives of the health boards or Jo Fitzpatrick back in front of us. People's agreement then. In that case, we are agreeing to write to the health committee, urging them to conduct a short inquiry, reflecting not just on issues in the debate but issues that seem to have emerged from the debate that we hadn't expected. If that's great, I would thank Elaine Smith for her attendance today. If that's all on that petition, I close the formal part of the meeting and move into private session.