 The final item of business is members' business debate on motion 15431, in the name of Pauline McNeill, on the prevalence of crones and colitis in Scotland. That debate will be concluded without any questions being put. May I ask those who wish to speak in this debate to press the request to speak buttons, and I call on Pauline McNeill to open the debate for around seven minutes please. Thank you, Presiding Officer. May I begin by thanking all members who signed my motion and those who are taking part in the debate today, and also the bureau for selecting it for a debate. I think that all those who are watching the debate today are absolutely delighted at long last that we have a debate on IBD, crones and colitis, because a staggering 26,000 people in Scotland are estimated to be living with inflammatory bowel disease. That is one in every 210 people. It is a term used to describe two conditions, crones disease and ulcerative colitis. In short, they cause inflammation of the colon and the gastrointestinal tract. It is a serious disease and two-thirds of patients need emergency care before they are actually diagnosed. Unbelievably, Scotland has the highest prevalence of paediatric onset, and the rate is increasing around the world as a global disease. Unfortunately, IBD is not curable, and the prevalence of crones and colitis collectively known as IBD is a lifelong condition. It is often referred to as the invisible disease. Symptoms include stomach cramps, urgency of needing the toilet, fatigue, joint pain. Symptoms are fluctuating and rapid, and they are constant and chronic. The lifelong costs associated with it are akin to other major diseases such as diabetes and cancer. A paper just published that the European Crones and Colitis Congress this month notes that Scotland has the highest incidence among children anywhere in the world. The causes of IBD are not known. However, Professor David Billson, who is a gastroenterologist at Edinburgh University, suggests that possible causes are the western diet. Fact is associated with living in a northern latitude and the industrialisation of food processes. It is a global phenomenon. What is sure is that we need more research to get to the bottom of it. It is quite incredible that everyone that I talk to, even our own Presiding Officer, knows someone with IBD. My nasing goddaughter, Angela, is diagnosed with ulcerative colitis at the age of 15. She complained of sore legs, extreme tiredness and the spending days in bed. It is terrible at any age to discover this, but at age 15 it is a critical time at school when you are growing up. Like most children with the conditions that she spent weeks on end in the children's hospital, it is part of everyday life. However, it is very vital that those children know that their own schools recognise their particular needs and how disruptive it is to their education. Our family are indebted to the incredible IBD service at Glasgow Children's Hospital, consultant Rachel Taylor and nurses like Vicki Garrick and Lee Curtis. Some would say that they have been sent from heaven to be in the lives of the young people, because they give them so much strength and support. I thank the Crohn's Inclitus UK and to Dr Ian Arnaw, who is the vice convener of a thriving cross-party group. The stories of young people overcoming IBD are quite incredible, and the number of people who missed diagnosis high last week was an interesting point. The medics in our cross-party group said that patients who are constantly being tested for diagnosis should be copied into all patient letters without their treatment. That has already happened in England. It seems obvious that we should modernise our system and have it here, too. I want to talk about Joseph Logan, who is now 14 years old. He was diagnosed at the age of 11. His mum was worried about him because he looked pale and thought that it might have been due to the amount of exercise that Joseph was doing because he plays a lot of tennis. Eventually, Joseph found it difficult to walk short distances. He was eventually admitted to the Royal Hospital for Sick Children, diagnosed with Crohn's disease. Joseph plays tennis now to a very high standard, and I can see he is regularly winning those tournaments. What it shows is that it does not hold those young people back. Last week, we heard from a sheena, a young woman, who challenged the cross-party group to think about how their morning began. Most of us with coffee are certainly with me, but she tells us how her day starts, dealing with the condition, cleaning our wounds, taking our medication, making sure that our fridge is at the right temperature, taking painkillers. It is an extraordinary start to the day, but she gets through it. She is not angry, but she speaks for a lot of people, because many find it difficult to talk about it. Talking about the bowel can be embarrassing for people. We had a young girl who came to the cross-party group and she talked about the experience of being bullied because of her colostomy bag, so it is difficult for many people to talk about it. Jenny Cook has also been an inspiration as a young IBD fighter, and she has gone through numerous operations to remove part of her bowel, but she is always smiling and raising funds for the Catherine McEwen Foundation. What we would like to say to health ministers is that there are a number of things that we need to fight this disease. We need a greater understanding of the disease, that it is lifelong and that it is complex to manage. A lot of patients just need that extra help to self-manage. Three years on from the publication of the blueprint, we are still asking for help boards to recognise Crohn's and Colitis as a priority condition. I hope that that will happen soon. Scotland lags behind the rest of the UK in having the sufficient number of IBD specials nurses. It should be one nurse to every 500 patients, but more than 33 per cent of sufferers have no contact with an IBD nurse at all. We need a service redesign led by senior clinical nurse specialists. Some hospitals have no identified IBD clinicians at all, and although the services are developing well for children, it is not an identified service for adults. Access to toilets is crucial for anyone with a condition, and more must be done to recognise a whole range of conditions of which getting to a toilet is absolutely essential. Age-appropriate services for 16 to 24 is the best way to design a service, which includes continuing psychological support. After age 16, that support drops off at an 18, age 18, when that person transitions to the adult service. It is very hard for young adults who have been used to the children's service to transition. In fact, the most teenagers I have spoken to find it quite a shock, because the adult service is quite different. Whilst a blueprint is a good framework for better services, there is no mandate for its implementation. June 2019 will see the launch of the refreshed UK-wide IBD standards. We are calling on all health boards to have a defined adult service for IBD, and we would put out a plea to health board chief executives. We have been asking for two years for one of you to come to our group, so we can get this message across. I hope that you are listening similarly to ministers. I know that health ministers are busy, but in two years we have not had a visit, and we do really like one. Self-management is a key part of the blueprint for clones and colitis. It has a prototype for a flare card, which is a basic advice for those who have got the key symptoms when they flare up. Better use of technology, especially for remote areas. Dr Thomson from Grampian explained the open review process, where people come back into the clinic when they need an appointment by phoning the IBD helpline or the gastroreception. He noted that the majority of people with chronic disease know their disease well, and they just need to talk to someone. However, using the IBD waiting list has actually halft since they used the remote service. The same is true of Highlands, when Professor Angus noted that the average travel distance per patient for the attend anywhere system was 120 miles. We need an IBD service fit for the 21st century. We need the research funded to find out what is causing this debilitating disease, which is on the rise. We need the Scottish Government to work with us to redesign the service for the better. We move on to the open debate. Speeches are around four minutes, please. Claire Adamson followed by Miles Briggs. Thank you, Presiding Officer. I thank Pauline McNeill for securing the debate this evening. I also thank her for the stewardship and leadership that she has shown in the Crohn's and Colitis cross-party group. I also have a special mention for Nancy Gregg, who is in the chamber this evening and watching. She is from Crohn's and Colitis. She is simply a tour de force, not only in her role as the secretariat to the group, but in everything that she does to raise awareness of Crohn's and Colitis, including holding an exhibition just outside the chamber a few short weeks ago. As well as Ms McNeill has already mentioned, I want to pay tribute to the many people who have presented in their experience and management of their condition, not least of which was received in Robertson only just last week. We are acutely grateful, especially to the youngest CPG members who have shown such bravery and honesty in order to inform our understanding. The motion this evening is about prevalence. We have seen an increasing inflammatory bowel disease prevalence in Scotland and across the world, but the word that always comes to mind when I think of this disease and the one that we keep hearing has been mentioned by Pauline is invisible. How can that be? Something that is so painful can be so debilitating, restricting, increasingly prevalent, something that simply should not be invisible to us. That is a message that we are getting. The members of the Scottish Parliament cross-party group keep using it. They say that the disease is widely misunderstood and misrepresented. Crohn's and Colitis are the two main forms of inflammatory bowel disease that affect 26,000 people in Scotland, and that number is rising. It is a lifelong condition, a disease that people experience IBD in different ways, but what remains consistent is the stigmatising effect on those who have to live with and manage that condition. As we have heard already, it does not just affect the bowel and the gut, but it affects many parts of the body. It can lead to, as Ms McNeill said, diabetes and other conditions, anemia. All the things that she would associate with the body's inability to absorb the nutrients that most of us take for granted. It is a lifetime of medication coupled with an array of incapacitating systems that can have a severe impact on someone's long-term mental health. Notwithstanding three years on from the publication of Scotland Leading the Way, a blueprint for IBD services in Scotland, health boards are yet to recognise Crohn's and Colitis as a priority condition. It may seem invisible to us, but you cannot see a person who has this condition. You cannot recognise it from looking at them, but that often means that people cannot recognise the effect that it can have on the person's quality of life and the impact that it can have on their wider family. It is no wonder that people with this condition continue to feel invisible. A lock of woodwork has been done to raise awareness of IBD, and the deputy convener of the ABG has been heartened to hear the stories of people who have found a support network within that group, to the families, to the people with the condition themselves. It is relentless work of the group's members that is making it visible in the Parliament this evening, and that is what we must continue to do. We need to work harder. There is much to be done. We need to improve specialist nurse provision, ideally to the recommended one nurse per 500 patient ratio, and we need to improve psychological and emotional support offered to people with this condition, particularly to the younger children and teenagers that we are hearing are being diagnosed more frequently. We need to make this condition visible and not give up informing and making sure that people understand better Crohn's and Colitis. I thank Pauline McNeill for bringing the debate forward and for her long-standing campaigning on behalf of patients. I also thank organisations and constituents who have been in touch ahead of the debate. It is also right that we pay tribute and thank all those who work in our NHS for the support that they show and provide to Crohn's and Colitis patients across our country. I know just how passionate and determined they are to also see progress. As Claire Adamson and Pauline McNeill have outlined, as a member of the cross-party group on inflammatory bowel disease, I have to say that some of the emotional presentations that we have had have really stayed with me, especially those from young people. Crohn's disease affects around 1 in 200 people with the majority of those being young people in children. It is clearly a real need to see improvements around access to appropriate paediatric and transitional services for young Scots with IBD, as well as, I think, most importantly, sometimes improving access to psychological support as they go on their journey. It is therefore concerning that a recent study by the Royal College of Paediatrics and Child Health found that the paediatric workforce in Scotland is on the brink of a recruitment crisis and needs to see an increase in numbers and doctors by a quarter, just to cope. It has been estimated that, to deliver the required standards of care to children and young people, the number of consultants will have to rise by 25 per cent or 82 doctors. There are a number of important issues that I think are also raised in this motion, which we really should look at, specifically with concerns around access to toilets. That is an issue that I have had significant correspondence from residents across Edinburgh and Lothian. I have raised concerns with ministers and NHS boards specifically about changing place toilets for disabled people and access to toilets within our health service. However, there is clearly a wider issue in relation to the impact to which council cuts to public toilets are having and the provision of toilets in public spaces. How we plan our public spaces specifically is something that we all should look towards, and how NHS buildings, most importantly, also have those incorporated, and how when we are planning new facilities. I agree that access to toilets should be treated as a public health concern when planning legislation, for example, is being taken forward. I also want to use the debate tonight to highlight some of the positive developments that we have actually seen. I have been hugely impressed by the examples around the use of e-health technology, such as attend anywhere that we have had presentations on in the cross-party group, and how that is helping to address many of the patient access concerns. The multistakeholder IBD innovation workshop in December of 2018, instigated by Crohn's and Colitis UK and NHS Scotland, looked to many improvements in the development of digital health, and I know that the Scottish Government has been looking to take those forward. Specifically, there have been issues highlighted to me by constituents in Lothian with regard to nurses and consultants not being able to communicate with families and children via email, which I believe is the case in Glasgow. We are seeing some of the IT problems specifically here in Lothian with regard to access. I ask that ministers take an active role in this and finding potential solutions to the issue. It is really important that we make sure that patients here in Lothian are not left behind. It is an issue that I am happy to write to the minister about if he is not aware of it specifically. It is also important that we look to the future today. Just this weekend, I read a very interesting and very positive article regarding the development of a vaccine aimed at treating Crohn's disease, with recruitment now taking place for the Crohn's map vaccine trials. There is a huge amount of work going on around how we support patients. We should all try to make sure that we keep striving to support people today in Scotland living with Crohn's and Colitis and look to the innovations and health improvements of the future, which will make such a difference. I would like to thank Pauline McNeill for securing this important debate. To pay tribute to the cross-party group on inflammatory bowel disease, which Pauline is a convener of and Claire Adamson is a deputy convener for, there is work on these important issues. There is a history of bowel disease in my own family, so your work is really appreciated. I also thank Crohn's and Colitis UK for their helpful briefing. For constituents who have been in touch with me, I posted on Facebook that I was taking part in this debate tonight, and people have been in touch to share their own experiences, so I am grateful to them. Scotland has a highest prevalence in the UK for Crohn's and Colitis, so it is really important that we understand the impact on people's everyday lives and ensure that our places of work, education and public spaces are inclusive for people who are living with those conditions. People with Crohn's and Colitis can find themselves planning their days around the availability of toilets, so adequate provision can make a dramatic difference to people's lives. The need to go to the toilet can come on very suddenly, and, like Miles Briggs, I believe that access to toilets is a public health priority, especially for people with inflammatory bowel disease. Last year, it was found that austerity hit councils have had to close 161 public toilets across Scotland since 2010. Disability Equality Scotland described the declining public toilets as a health risk. I was shocked to learn from Disability Equality Scotland that some businesses, including well-known coffee shops, are locking their accessible toilets with standard keys and codes. That practice must end. One young woman with Crohn's got in touch with my office about the facilities at Glasgow Central Station. She is sometimes forced to make her way down two flights of stairs in pain, desperate to get to the toilet and frantically trying to find the correct change to get through the barriers. I was pleased when Network Rail confirmed to me that they would remove toilet charges at Edinburgh Waverly and Glasgow Central Station, but it has not happened yet, so please just get on with it. Accessible public toilets can make a transformative difference. A great example of that in my area is Larkhall Lighthouse, a third sector organisation, but it should not be left to charities to step in. Scottish Labour is pleased to work on a cross-party basis with colleagues such as Alison Johnstone, Jeremy Balfour and Mary Fee on changing places to make sure that, in terms of planning policy and community provision, toilets are not just an afterthought. I have read today that the planning minister Kevin Stewart is a wee bit upset and thinks that the bill now needs to be rescued because there is too much bureaucracy and burden on councils. I hope that he is not talking about the proposals around public toilets because this is so vital and people are left with no choice but to stay in the house and not take part in community life if they cannot get to the loo. Crohn's and colitis can be severely debilitating and even life-threatening. As Claire Adamson said, people talk about not having visible symptoms and they talk about invisible diseases. I pay tribute again to Crohn's and colitis UK for the fantastic campaign not if the disability is visible, which challenges those perceptions. I have read about some employers, including in my area, for example call centres, where they time people in terms of their toilet breaks and even they do not pay for time away from their desks. That creates an unhealthy culture of stigma and anxiety about toilet use and that is, again, particularly damaging and discriminating against people with inflammatory bowel disease. Pauline McNeill talked about her niece and about the impact on young people. Too often we have young people in school having to seek permission to get to the toilet and to ask for access to period products. Again, we have to change the policies. In conclusion, I thank Pauline McNeill for securing this debate to Crohn's and colitis UK for their fantastic work and I urge the Scottish Government to respond to the recommendations that are directed at them and our health boards. I was tempted there to say Monica Lennon, would you please just go on with it? On a serious note, I know that everyone is getting on very well tonight, but I have heard a couple of members just refer to colleagues by their first names. Can you use full names please, because that is best for the official report? Alison Johnston followed by Liam McArthur. I would like to thank Pauline McNeill for bringing this important subject to the chamber this evening. I thank her for the comprehensive area that she covered. I, too, am going to focus on a particular aspect of the debate, and that is the accessibility of public toilets. It is an issue that is raised too in Ms McNeill's motion. Scotland has, as we have heard, the highest rates of Crohn's and colitis in the UK. Rates in young people have soared in recent decades, but despite the fact that there is a growing demand for public conveniences in Scotland, we know—the press and journal have found out that, on average, Scottish local authorities have closed about 45 per cent of public toilets. That is depriving neighbourhoods and communities of a vital public service, but it is particularly affecting—there is a real question of equity here—it is particularly affecting people with conditions such as irritable bowel syndrome. Crohn's and colitis in the UK recognises that access to toilets is of great concern to people living with the conditions. A survey that they conducted last year showed that 75 per cent of people said that they or a family member with Crohn's or colitis had had an accident in public because they could not reach a toilet in time. Can you imagine? That should not be happening. The emotional impact of the condition should not be underestimated. Having an accident in public can be profoundly embarrassing and hugely distressing. We have to get to grips with that and ensure that people have the necessary facilities that they need, because we want to make sure that everyone is confident about getting out and about. If they cannot get out and about, they will avoid leaving home, and isolation and loneliness can be the result of that. The lack of suitable toilets on public transport has to be urgently addressed to my colleague John Finnie. He found that 22 per cent of ScotRail toilets failed an audit in 2017, so that, even where toilets are provided on public transport, they are not of a suitable standard. That, too, can severely inhibit the mobility and freedom of people with irritable bowel disease. Monica Lennon was discussing the planning bill. In September last year, I successfully lodged an amendment to the planning bill, and Pauline McNeill and Monica Lennon were very supportive in that committee. Just to ensure that local development plans must include a statement of the local planning authorities policies regarding provision of public toilets. It could be part of a community access scheme. City of Edinburgh Council has a scheme where businesses are paid £500 a year to allow free access to their toilets. New developments could be encouraged to plan for their toilets to be accessible to the public in a similar manner. I would also like to put on record my thanks to the many Save Our Loose campaigns that have sprouted up across the country from the Highlands to more locally. That is a really important issue. I was contacted by a constituent who has given me permission to refer to her emails. She said, I work in the health sector and I know that there are many people who plan their outings around where they know they can access public toilets. There is a growing elderly population and a long list of health issues that affect people's ability to control their bowel and bladder, as well as mobility issues. She said that that could mean that people need more time to access those facilities. She also said that, in the past few months, I have witnessed two customers asking if those toilets could use both being told no, one in a small food outlet with a sitting facility and the other in a large store on Princes Street. That is happening everywhere, and it is an issue that we have to address. Monica Lennon is right. It can be very uncomfortable having to go and ask for a key or a code. We have to make sure that sanitation is a basic human right if we are not providing that in 21st century Scotland. We have to have a good look at ourselves. I realise that I am over time, Presiding Officer. We have to do all that we can to make sure that people with hidden disabilities do not feel stigmatised. In closing, I congratulate Crohn's and Colitis on their not-every-disability-is-visible campaign. I look forward to working with colleagues to address the issue further. I congratulate Pauline McNeill on securing the debate and on her chairing of the cross-party group in conjunction with Claire Adamson. I am a member of that group. I do not come with any great hinterland of experience of IBD, but I find it fascinating. I think that it does what good cross-party groups should do. It engages in the political and policy debate, certainly, but it gives us as MSPs access to the expertise of clinicians and those who are working at the front line. It also provides, as we have heard, an opportunity to hear first hand from those who live with IBD, the day-to-day experiences that they have. I vividly recall Pauline McNeill referring to Joseph that we heard from. If he does not make it as the next Andy Murray, I would not be a tall surprise if we were to find him in this chamber articulating his very powerful arguments on this and many other subjects at some point in the future. I will not necessarily rehearse a lot of the figures that we have heard, but the prevalence is a factor that we cannot lose sight of. We are the highest prevalence anywhere in the UK, and the trend is an upward trend, particularly in relation to paediatric onsets. That is putting huge pressure on services, but we should not lose sight of the positives. I think that there are advances in research, as Miles Briggs reminded us. There is excellence in the service delivery at the present time. There is innovation through digital and the like. There are positives there, but there are also many, many challenges that we are yet to get on top of. I think that both Monica Lennon and Alison Johnstone have rehearsed the arguments around access to public toilets very well indeed, and that is obviously a key issue. The themes that come up regularly in the cross-party group have been referred to in the briefings for the debate. The variations in access are a concern for myself. In one briefing, we heard that urban areas generally enjoy better service provision than that of rural counterparts. That might not come as any great surprise, but they clearly need to tackle and overcome the geographic barriers that exist. That might need a degree of creativity in terms of the way that the service is delivered, but there should be no reason why the access to good quality services is any less in rural areas compared to urban areas. I was struck by the variability in access to psychological services. As Clare Adamson reminded us, we are talking about a lifelong condition, one that can be painful and certainly debilitating and is, to many people, invisible. It should come as a surprise to no-one that the need for emotional and psychological support is often every bit as great as the medical support that is needed, particularly for those who are diagnosed at a younger age. I also note the appeal for greater shared decision-making between patient and clinician. That is good practice in any event, but, given the nature of IBD, given the way that it impacts individuals in a very individual fashion, that is not just good practice, that seems to me essential. I was prompted to join the cross-party group by a friend who has had the condition for many years and has been an absolute hero in raising money for Crohn's and Colitis charities. I dread to think how many miles he has put in over the two years, but Angus's needs have certainly suffered in the cause of supporting IBD sufferers. It has clearly been well worth it, not just in raising money, but, as many colleagues have already mentioned, in raising awareness. I recall the first time that I heard about the condition was when I was working in London and a work colleague explained to me his experience. I remember feeling absolutely horrified. It was obvious how difficult a conversation it was for him to have with me, indeed with anyone. I think that things have moved on a bit since then, but, again, as Clare Adamson reminded us, the sense of stigma is certainly still there. It is still seen as that invisible disease. Debates like this are absolutely crucial and all the more important that we keep this visible. I thank and congratulate Pauline McNeill once again and acknowledge the tremendous work of Nancy Gregg of Crohn's and Colitis UK and everybody working to improve the lives of those who live with his disease. Willie Coffey, followed by Brian Whittle. I thank Pauline McNeill for securing the debate and for the attention that she continues to bring to the issue and her work with the CPG on inflammatory disease or IBD. I wanted to speak in the debate after meeting with a constituent who is also a relative colitis and the difficulties that she is experiencing particularly with her employer. She came to see me because of problems that she was having with her employer due to her colitis. It is my understanding that her employment problems are unfortunately all too common for those with IBD, and that is something that needs to change. When her disease is active, it leads to an intense fatigue, as I am sure all of us are aware. She says that her employer has been somewhat accommodating as far as the more obvious symptoms of her IBD are concerned, although she confessed that she has been made to feel that she is somehow to blame for her disease, that it is something that she ate as opposed to the disease and condition that she has. She has also been required to provide evidence to justify these accommodations, which she has found to be embarrassing and frankly unacceptable. However, her employer is unwilling to look beyond the obvious symptoms and acknowledge other aspects of her disease, such as the intense fatigue that she suffers. Since fatigue is a hidden part of the disease, it is something that her employer finds difficult to understand or to accommodate. My constituent suggested flexible arrangements at work to her employer, but all were refused. My constituent needs to work, she wants to work, her work contributes not only financially but also to her sense of herself, of course. However, her employer has refused to help her to establish a work schedule that would enable her to work effectively whilst managing her condition. Rather than working a reduced workload or a flexible workload, her doctor has now had to sign her off and she is now in sick leave. That only serves to increase her stress levels, which in her case simply exacerbates the disease. I am sure that story sounds familiar to many members. Thanks to Crohn's and Colitis UK, in particular the representatives from Crohn's and Colitis Airshire and Arn whom I met last month here in Holyrood, we learned that IBD may be considered a disability under the Equality Act, and therefore employees are entitled to protection from discrimination like that. Employers are required to make reasonable adjustments to accommodate the demands of the disease, and I am frustrated on behalf of my constituent that her employer has refused to do so. If she wants to continue working, she now has to speak about her disease to external organisations for their support, to gain their support, which is not something that she is particularly comfortable in sharing. It is this sort of experience that drove the Scottish Government's national blueprint, which is changing the way that NHS boards treat IBD, and there is some good practice to share with colleagues from Ayrshire and Arn, but I do not have time to go into that, Presiding Officer. Speaking to the patient rights champion, Kirsty Gibson, regarding the Ayrshire experience, she said that there have been definitely been improvements following the UK blueprint, including gastroenterology specialists, more IBD nurses, an IBD helpline and the ability to be seen at clinics. However, my constituent still thinks that more can be done, including some of those. The ability to be able to access the services at the right time and the time of choosing. More IBD nurses are always welcome and needed, of course. More after-hours clinics are needed. More uptake in the provision of mental health support, and particularly for family members as well. Also, as I mentioned earlier, using technology to be able to consult with nurses from home, as I understand has been done or was done in the Highlands pilot. Challenging public discrimination, of course. Crohn's and Colitis UK's can't wait cards are often dismissed by most shops and stores, and hopefully debates such as this will help to raise public awareness. Of course, as I mentioned, possible discrimination by employers needs to be addressed. My constituent agreed that her interactions with her doctor, nurses and health staff have all been excellent, Presiding Officer, but more can always be done in particular to encourage a more acceptable approach from our employers. People are struggling enough with the concept of having a chronic illness so early in their lives without having additional worries to give them concern. Once again, Presiding Officer, thank you to Pauline McNeill for bringing this subject to the attention of Parliament. The last of the open debate contributions is from Brian Whittle. Thank you, Presiding Officer. I also add my congratulations to Pauline McNeill for securing time in the chamber to debate this topic. In doing so, Ms McNeill is helping to raise awareness of Crohn's and Colitis, which is one of the key asks from Crohn's and Colitis UK, so the benefits of our members' debate, Presiding Officer. I have to say that Crohn's disease was something that I was vaguely aware of, but probably most people didn't give it too much thought, and that was until I came across a young athlete with a condition, whose father also had that condition. I wasn't the athlete's primary coach, but I did some work with them, and I knew the family particularly well, but when working with athletes, it's incumbent upon the coach to understand any specific issues pertinent to that athlete, any adjustments that may be needed to be made in their training programme and how that may affect their performance. At that point, I began to realise how debilitating that condition can be. They need to constantly change the training programme depending on flare-ups or that increased focus on diet and access to an appropriate diet. It's a constant planning cycle, and even when we were moving around from venue to venue and we went warm weather training, that need to understand where the nearest toilet was and where they would be able to access the type of diet that they require now. I know that I often get accused of seeing things through a sporting prism, Presiding Officer. For me, what it does is highlight the need to—well, it's an unsported kind of exacerbates some of the issues that are required, but, like Pauline McNeill said about the young lad who is playing tennis, it doesn't necessarily have to completely shut down their lives because that young lady actually went on to become a Scottish champion. Pauline McNeill also suggested that this invisible disease, despite IBD being potentially extremely painful and in extreme cases life threatening, would really brought home to me because that's exactly what happened to that young lady. I have to say now that she's all grown up now and is passing on her knowledge as a coach as well, but it's an invisible disease that's been said before, but it's surprisingly common condition with 26,000 cases registered in Scotland and, furthermore, I think more importantly for me is there's been a huge increase in the incidence of IBD in the under-16s. There are many issues within this debate that do need to be addressed and have been addressed very well within this debate. I would like to focus the little time that I have left here on a couple of issues that are of particular interest to me. I'll not be surprised to you, the Presiding Officer. I'm going to pick diet. I think that it's a constant topic that's raised in this chamber, but in managing IBD, understanding diet is absolutely crucial. That applies to the sufferer, to the parents and also in the education system. After all, it's highly likely that teachers will be teaching pupils who are suffering with this condition. This is another reason, Deputy Presiding Officer. I'm so keen that we continue to consider how we make up and source school meals in other public facilities. I think that the increase of food in our diet is starting to be connected to the increases in incidences of conditions-like IBD. That's something that I'm going to continue to pursue in my time in this place around ensuring that the meals that we serve and offer in schools are of the highest quality. Having access to that specialist healthcare professionals and education by clinical nurse specialists and specialist dieticians, I think that that would be a great part of that solution. I think that this is an area where Scotland lags behind with nearly a third of IBD sufferers having no contact with that specialist nurse. As I've mentioned again today, the need for psychological support and mental health, that draining part of your life when it is often that sort of frustration of not being able to participate in life the way that we would like to. I think that the access to mental health again has been highlighted today. Finally, I think that healthcare technology should certainly play a major tool in tackling the lack of available treatments and promoting that self-management of those conditions that in turn empowers the sufferer. Direct access to specialist advice via technology for many conditions is a direction of travel that the health service is going in, and we need to continue that especially in rural areas. Once again, I think that it's a cross-propfolio solution that's required here, Deputy Presiding Officer, and thanks again to Pauline Cunningham for bringing this to the chamber. I'll watch the clock next to you. I'm tempted to say, I write. I now call on Joe Fitzpatrick to respond to the debate for around seven minutes, please. I want to start by thanking all members who have taken part in this evening's important debate, and I specifically like to congratulate Pauline Cunningham for securing the debate and for her continued work with us through her role in the cross-party group and other members in the chamber who are clearly members of the cross-party group, too. I also want to put on record my thanks to members, particularly Willie Coffey, for giving a voice to the many people who suffer from IBD to the chamber. I think that that's always very important for us to put any of those conditions in context. I also add to others my opportunity to thank Crohn's and Colitis UK for their hard work, particularly in developing the national blueprint for IBD in Scotland. It was good to hear Willie Coffey say that there had been a feeling that things had improved, although still not where they should be, necessarily. Crohn's and Colitis UK's on-going engagement with us to make a real difference for the people with those conditions in Scotland. Since the blueprint was published three years ago, we have been working closely with them and other third sector partners in conjunction with NHS boards to improve pathways and provision for people with IBD. Succes has been realised so far under the modern out-patient programme, including the introduction of a standard dice set of data that is helping informed service improvements and aiding shared decision making and a series of treatment algorithms for primary and secondary care that supports the timely diagnosis, management and referral of people with IBD. Those measures have laid the foundations for improvements in care and are enabling the clinical community to consider the effectiveness of changes to services. Pauline McNeill, Claire Adamson and others mentioned the specialist nurses. This is an important area and a pilot will shortly commence to introduce IBD specialist community nurses that will enable people to access scheduled and on-demand reviews and support within community-based settings. That is probably important to some of the points that Liam McArthur made in relation to rural parts of Scotland. The more rural parts of Scotland will include evaluation on the use of phone and video consultations and the benefits of which have been highlighted by others during the debate. The outcome of the IBD community nurse pilot and other work around long-term conditions such as IBD will continue to assist NHS boards in making decisions based on local needs to ensure that access to specialist nursing services is enhanced. Other developments include the introduction of a flare card containing information for people with IBD to provide practical support for episodes of flare in their condition and an individual care plan to help to support better person-centred conversations during appointments with healthcare professionals. We will be piloting that work over the next few months and again we would like to acknowledge the support and work of Crohn's and Colitis UK for their collaboration around that work. The modern outpatient programme will develop an implementation plan with the clinical community to take forward the report and recommendations that are coming from that. I am told that one of the things that is coming out of the modern outpatient programme that people will be interested in is a mobile app that is currently under development, which will include the location of available local toilets, which I will come to shortly. Is that okay if I come to toilets later? Could you two make up your mind? It is just on the point about the modern programme. I mentioned earlier in my speech that, given the number of tests that those who are being diagnosed have, some would say that it should be part of the modern programme for all patients now that letters should be copied about them to them. The clinicians seem to support the idea, and, although they are on my feet, I hope that you will address the question of what more can be done for health boards to adopt the blueprint. The specific thing about letters is that there is a responsibility within the patient rights Scotland act to make sure that that information gets to patients using terminology. Sometimes copying a letter will not be that way, but it is important that people understand what is being decided on their behalf. It is not necessarily copying the letters, but it might be something that we can pick up on specifically later. One of the other areas that Pauline McNeill, Claire Ameson and Miles Briggs talked about was research. It is essential that we are able to develop a better understanding of the causes of Crohn's and Colitis, which in turn will lead to more effective diagnostic approaches and treatments. That is why we have partnered with the charities Cure Crohn's and Colitis and Crohn's and Colitis in Childhood to fund a major research project looking at the effect of environmental factors in the prognosis of Crohn's disease and ulcerative Colitis. The project has the potential to lead to the development of personalised therapy in Crohn's disease and Colitis, and it has also attracted worldwide attention in placing Scotland at the forefront of research in this area. In terms of supporting children and young people living with IBD, members may also be aware that we are developing a 10-year child and adolescent health and wellbeing action plan that aims to take a cross-policy approach to improving the physical, mental and emotional health and wellbeing of children and young people within Scotland. Liam McArthur talked about the need for timely access to psychological support, and I think that that is vital, given the link between long-term conditions and mental health problems and the impact of those on disease outcomes if they go untreated. Miles Briggs, Monica Lennon and Alison Johnstone, and everybody else in the chamber, also talked about access to public toilets. That has been well covered in terms of why that is particularly important and of a man's concern for people with IBD, and they will have a bearing on their ability to enjoy a full and active education work in social life. Although the provision of public toilets is the responsibility of local authorities as their best place to prioritise the needs of their local communities, I am pleased that the planning bill, currently under consideration, includes reference to local policies and proposals for public toilets and mechanisms for the expansion of changing-place toilets. I am absolutely sure that that is something that I know that the planning minister is very supportive of, and is continuing to look at how we can go further than we are doing in the act. Miles Briggs. One of the issues that Monica Lennon raised is the fact that some private businesses, some coffee shops not far from here, have locks on toilets. Obviously, they are private businesses, but in terms of trying to spread the message that people need access to them, what can the Government do around that? Joe FitzPatrick. I think that we all have a role to encourage businesses that making their toilets accessible is good for business, so I think that that is one of the important things. However, I think that the mobile app that is under development might help with that, because if those businesses are potentially on that map in telling people where they can use toilets, I can see an obvious business advantage there, so I hope that that is something that can be heard out there in the business community. Alison Johnstone, in particular, mentioned public transport, and my colleague Paul Wheelhouse, the Minister for Energy, Connectivity and Islands, was keen to point out a particular example of good practice and made me aware of the fact that the refit of the MV Hrossy ferry for the Northern Isles will include a changing places toilet for the first time. I think that that is an example that shows that, where there is a will, there can be a way, and so I think that that is something that we need to consider at all points, because clearly it is important. In addition to that, the Government is investing £6 million in rural tourism infrastructure fund to support public infrastructure in rural tourism hotspots, including the provision of toilets, so hopefully that will help in some of the more rural areas where I know that there is a particular pressure. Finally, in summary, I again thank Paul Wheelhouse McNeill for bringing the debate to Parliament and for members for their contribution, particularly to thank the members of the cross-party group, because I think that Liam McArthur was absolutely right in saying that this is one of the cross-party groups that has a particularly positive role in helping to develop policy, in representing the community and making sure that we are all aware of what could be a hidden issue, but a hidden disability, as members have said, but clearly should not be closing. It is the Government's intention that we continue to work together across Government with our partners and with health and social care services to ensure that everyone living with IBD in Scotland has access to the best possible care and support. That concludes the debate and this meeting is closed.