Meeting of the Parliament

Meeting date: Wednesday, March 20, 2019

Official Report 1053KB pdf

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Inflammatory Bowel Disease

The final item of business is a members’ business debate on motion S5M-15431, in the name of Pauline McNeill, on the prevalence of Crohn’s and colitis in Scotland. The debate will be concluded without any question being put.

Motion debated,

That the Parliament is concerned about the reported high incidence of inflammatory bowel disease (IBD) in Scotland, including in Glasgow, particularly the rise in incidence among children and young people; understands that, despite being viewed as an invisible disease, it can be severely debilitating and life-threatening; applauds the work of specialist IBD nurses, doctors and consultants who treat patients with the condition; commends the ongoing research into the root cause of the disease; congratulates Crohn’s and Colitis UK on developing the National Blueprint for IBD in Scotland to improve the quality of IBD services; notes the calls on the Scottish Government to work towards the plan by improving access to age appropriate paediatric and transition services, as well as dedicated psychological support for IBD patients; supports the work of the Cross Party Group on IBD, which raises awareness of the issues faced by people with the disease and the impact that it has on their lives; notes the importance to people with IBD of public toilets, including on all public transport; is concerned at the rate of public toilet closures; notes the calls for there to be recognition, as a public health issue and in line with equalities legislation, that more public toilets are needed, and for this to be reflected in the planning system, and further notes the calls for more work to improve awareness of the radar key scheme, which allows people with IBD to use accessible toilets.

17:10  

I thank all the members who signed my motion and those who are taking part in the debate. I also thank the Parliamentary Bureau for selecting my motion for debate. Everyone who is watching is absolutely delighted that at long last we have a debate on inflammatory bowel disease, Crohn’s and colitis.

A staggering 26,000 people in Scotland, or one in every 210 people, are estimated to be living with inflammatory bowel disease. The term is used to describe two conditions: Crohn’s disease and ulcerative colitis. In short, they cause inflammation of the colon and the gastrointestinal tract. It is a serious disease, for which two thirds of patients need emergency care before they are diagnosed.

Unbelievably, Scotland has the highest prevalence of paediatric onset, and the rate is increasing. IBD is a global disease—its prevalence is increasing around the world—and, unfortunately, it is not curable. Crohn’s and colitis are lifelong conditions and, taken together as IBD, they are often referred to as the invisible disease. Symptoms include stomach cramps, urgently needing the toilet, fatigue and joint pain. The symptoms fluctuate and their onset is rapid; they are constant and chronic. The lifelong costs that are associated with the conditions are akin to other major diseases, such as diabetes and cancer. A paper that has just been published at this month’s European Crohn’s and colitis congress notes that Scotland has the highest incidence among children anywhere in the world.

The causes of IBD are not known. Professor David Wilson, who is a gastroenterologist at the University of Edinburgh, suggests that possible causes are the western diet, factors associated with living at a northern latitude and the industrialisation of food processes. It is a global phenomenon, and it will need more research to get to the bottom of it.

It is incredible that everyone I talk to—even you, Presiding Officer—knows someone with IBD. My niece and goddaughter, Angela, was diagnosed with ulcerative colitis at the age of 15. She complained of sore legs and extreme tiredness and was spending days in bed. It is terrible for anyone at any age to discover that they have the condition, but the age of 15 is a critical time for school and growing up. Like most children with the condition, she spent weeks on end in Glasgow children’s hospital; it became part of everyday life. It is vital that those children know that their schools recognise their particular needs and how disruptive the condition is to their education.

Our family is indebted to the incredible IBD service at the children’s hospital and its staff, including consultant Rachael Taylor and nurses such as Vicky Garrick and Lee Curtis. Some would say that they have been sent from heaven to be in the lives of young people, because they have given them so much strength and support.

I also thank Crohn’s and Colitis UK and Dr Ian Arnott, who is vice convener of our thriving cross-party group. The stories of young people who are overcoming IBD are quite incredible. The number of people who are misdiagnosed is high. Last week, medics in our cross-party group told us of their view that patients, who are constantly tested for diagnosis, should be copied into all out-patient letters about their treatment. That already happens in England, and it seems obvious that we should modernise our system and do that here, too.

Joseph Logan is now 14 years old; he was diagnosed at the age of 11. His mum was worried about him, because he looked pale. She thought that that might have been due to the amount of exercise that he was doing, because he played a lot of tennis at the time. Eventually, he found it difficult to walk short distances and was admitted to the Royal hospital for sick children and diagnosed with Crohn’s disease. He plays tennis now to a very high standard and regularly wins tournaments—that shows that the disease does not hold these young people back.

The cross-party group also heard last week from Roisin, a young woman who challenged the group to think about how their morning had begun. For most of us—certainly for me—it began with coffee. She told us that her day starts with dealing with the condition: cleaning her wounds, taking her medication, making sure that her food is at the right temperature and taking pain killers. It is an extraordinary start to the day, but she gets through it and she is not angry. She speaks for a lot of people.

Many people find IBD difficult to speak about; talking about the bowel can be embarrassing. A young girl talked to the cross-party group about how she experienced bullying because of her colostomy bag.

Jenny Cook, a young IBD fighter, has been an inspiration. She has gone through numerous operations to remove part of her bowel, but she is always smiling and has been raising funds for the Catherine McEwan Foundation.

I say to the health ministers that, to fight the disease, we need a number of things. We need a greater understanding of the disease—that it is lifelong and complex to manage. Many patients just need a bit of extra help to self-manage. Three years on from the publication of “Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease in Scotland”, we are still asking health boards to recognise Crohn’s and colitis as priority conditions. I hope that that happens soon.

Scotland lags behind the rest of the United Kingdom in having a sufficient number of IBD specialist nurses. There should be one nurse to every 500 patients, but more than 33 per cent of sufferers have no contact at all with an IBD nurse. We need a service redesign led by senior clinical nurse specialists. Some hospitals have no identified IBD clinicians at all. Although the service is developing well for children, there is no identified service for adults. Access to toilets is crucial for anyone with the condition, and more must be done to recognise the whole range of conditions for which getting to a toilet is absolutely essential.

The best design would include age-appropriate services for 16 to 24-year-olds, including continuing psychological support. After the age of 16, that support drops off. At the age of 18, young people transition to the adult service. It is very hard for young adults who have been used to the children’s service to transition. In fact, most teenagers I have spoken to find it quite a shock, because the adult service is quite different.

Although the national blueprint is a good framework for better services, there is no mandate for its implementation. In June 2019, the refreshed UK-wide IBD standards will be launched. We are calling on all health boards to have a defined adult service for IBD. We make a plea to health board chief executives. We have been asking for two years for one of them to come to our group so that we can get the message across. I hope that they are listening. Similarly, I know that the health ministers are busy, but we have not had a visit in two years, and we would really like one.

Self-management is a key part of the blueprint. Crohn’s and Colitis UK has a prototype for a flare card, with basic advice for a flare-up of key symptoms.

There should be better use of technology, especially in remote areas. Dr Thomson, from Grampian NHS Board explained the open review process, where people come back into the clinic when they need an appointment by phoning the IBD helpline or the gastro reception. He noted that the majority of people with chronic disease know their disease well, and they know when they need to talk to someone. The IBD waiting list in Grampian has halved since the remote service came in. The same is true in Highland. Professor Angus Watson noted that the average travel distance saved per patient using the attend anywhere system was 120 miles.

We need an IBD service that is fit for the 21st century. We need research to be funded so that we can find out what is causing this debilitating disease, which is on the rise, and we need the Scottish Government to work with us to redesign the service for the better.

17:18  

I thank Pauline McNeill for securing the debate and for the stewardship and leadership that she has shown on the cross-party group on inflammatory bowel disease.

I make a special mention of Nancy Greig from Crohn’s and Colitis UK, who is watching the debate from the public gallery. She is simply a tour de force, not only in her role on the secretariat for the group but in everything that she does to raise awareness of Crohn’s and colitis, which included holding an exhibition outside the chamber a few weeks ago.

I pay tribute, as Ms McNeill did, to the many people who have presented to the cross-party group about their experience of their condition and its management, not least Roisin Robertson just last week. We are acutely grateful to them—especially to the younger CPG members, who have shown such bravery and honesty in order to inform our understanding.

The motion is about prevalence, and prevalence of inflammatory bowel disease in Scotland and across the world is increasing. The word that always comes to mind when I think of the disease is “invisible”—Pauline McNeill mentioned the “invisible disease”, and we keep hearing that term. How can it be that something that is so painful, that can be so debilitating and restricting and that is increasingly prevalent is invisible to us? That should simply not be so. However, that is the message that we are getting; members of the Scottish Parliament cross-party group keep using the term. They say that the disease is widely misunderstood and misrepresented.

Crohn’s and colitis, the two main forms of inflammatory bowel disease, affect 26,000 people in Scotland, and the number is rising. It is a lifelong disease. People experience IBD in different ways, but the stigmatising effect on those who have to live with and manage it remains consistent.

As we have heard, the disease affects not just the bowel and the gut but many parts of the body. As Ms McNeill said, it can lead to diabetes, anaemia and other conditions that we would associate with the body’s inability to absorb the nutrients that most of us take for granted. It leads to a lifetime of medication, coupled with an array of incapacitating symptoms that can have a severe impact on a person’s long-term mental health. However, three years on from the publication of “Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease in Scotland”, health boards are yet to recognise Crohn’s and colitis as priority conditions.

The disease might seem invisible. We cannot see that a person has it—we cannot recognise that from looking at them. However, that often means that we cannot recognise the effect that it can have on their quality of life and the impact that it can have on their family. It is therefore no wonder that people with the condition continue to feel invisible.

A lot of good work is being done to raise awareness of IBD. As deputy convener of the CPG, I have been heartened to hear the stories of those who have found a support network in the group—a group that they never knew existed—among people with the condition and their families. The relentless work of the group’s members is making the condition visible. It is visible in the Parliament this evening, and we must continue to make it visible.

We must work harder, as there is much to be done. We need to improve specialist nurse provision, ideally to the recommended ratio of one nurse per 500 patients. We need to improve the psychological and emotional support that is offered to those with the condition, particularly younger children and teenagers, who—we have heard—are being diagnosed more frequently.

We need to make the condition visible and make sure that people better understand Crohn’s and colitis.

17:22  

I thank Pauline McNeill for bringing the debate forward and for her long-standing campaigning on behalf of patients. I also thank the organisations and constituents who have been in touch ahead of the debate.

It is also right that we pay tribute to and thank all those who work in the national health service for the support that they provide to Crohn’s and colitis patients around our country. I know just how passionate and determined they are to see progress.

Like Clare Adamson and Pauline McNeill, I am a member of the cross-party group on inflammatory bowel disease, and some of the emotional presentations that we have had, especially those from young people, have really stayed with me. Crohn’s disease affects around one in 200 people, with the majority of those who are affected being young people and children. There is clearly a need to improve access to appropriate paediatric and transitional services for young Scots with IBD, as well as—sometimes most importantly—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 increase the number of doctors by a quarter just to cope. It has been estimated that, if we are to deliver the required standards of care to children and young people, the number of consultants must rise by 25 per cent, or 82 doctors.

We should look at a number of important issues that are raised in the motion, including concerns about access to toilets. That is an issue on which 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 about access to toilets in our health service, but a wider issue is the impact that council cuts are having on the provision of public toilets in public spaces. That is something that we should all look towards when we are planning public spaces and new facilities. Most important is that we should look at how NHS buildings incorporate toilets. I agree that access to toilets should be treated as a public health concern when planning legislation is being considered.

I also want to highlight some of the positive developments that we have seen. I have been hugely impressed by the examples of the use of e-health technology, such as the attend anywhere scheme, which the cross-party group has had presentations on, and how such technology is helping to address many patient access concerns. The multi-stakeholder IBD innovation workshop in December 2018, which was instigated by Crohn’s and Colitis UK and NHS Scotland, looked at many improvements in the development of digital health. I know that the Scottish Government is looking to take those forward.

Constituents in Lothian have highlighted issues with nurses and consultants not being able to communicate with families and children with IBD via email, which I believe is possible in Glasgow; some of the problems with information technology access are arising in Lothian specifically. I ask ministers to take an active role in finding potential solutions to that issue. It is important that we ensure that patients in Lothian are not left behind, and I am happy to write to the minister about the issue if he is not aware of it.

It is also important that we look to the future. Just this weekend, I read a very interesting and positive article on the development of a vaccine that is aimed at treating Crohn’s disease. Recruitment is now taking place for the Crohn’s MAP vaccine trials. There is obviously a huge amount of work being done to support patients. We should all keep striving to support people in Scotland who are living with Crohn’s and colitis and look to the innovations and health improvements of the future, which will make such a difference.

17:26  

I, too, thank Pauline McNeill for securing this important debate and pay tribute to the cross-party group on inflammatory bowel disease, of which Pauline is the convener and Clare Adamson the deputy convener, for its work on these important issues. There is a history of bowel disease in my family, so that work really is appreciated. I also thank Crohn’s and Colitis UK for its helpful briefing, as well as the constituents who have been in touch with me. I posted on Facebook that I was taking part in the debate and people have been in touch to share their personal experiences. I am grateful to them.

Scotland has the highest prevalence of Crohn’s and colitis in the UK, so it is important that we understand the impact on people’s everyday lives and ensure that our places of work and education and our public spaces are inclusive for people 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 their 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.

However, 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 number of 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 access codes. That practice must end.

One young woman with Crohn’s contacted 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 make the toilet while frantically trying to find the right change to get through the barriers. I was pleased when Network Rail confirmed to me that it would remove toilet charges at Edinburgh Waverley and Glasgow Central stations, but that has not happened yet—please, just get on with it.

Accessible public toilets can make a transformative difference and a great example of that is one that is provided in my area by a third sector organisation, the Larkhall lighthouse. However, it should not be left to charities to step in. Therefore, Scottish Labour was pleased to work on a cross-party basis with colleagues such as Alison Johnstone, Jeremy Balfour and Mary Fee on changing places toilets to ensure that toilets are not just an afterthought in planning policy and community provision.

Today I read that Kevin Stewart, the Minister for Local Government, Housing and Planning, is a wee bit upset and thinks that the Planning (Scotland) Bill now needs to be rescued because it places too great a bureaucratic burden on councils. I hope that he is not referring to the proposals on public toilets, because they are vital. Without them, people are left with no choice but to stay at home and not take part in community life because they cannot guarantee getting to the loo.

Crohn’s and colitis can be severely debilitating, or even life threatening but, as Clare Adamson said, people talk about not having visible symptoms, or about having invisible diseases. I pay tribute to Crohn’s and Colitis UK for its fantastic campaign entitled “Not every disability is visible”, which challenges that perception.

I have read about employers, including some in my area, such as call centres, timing staff members’ toilet breaks and even deducting pay for time spent away from their desks. That creates an unhealthy culture of stigma and anxiety about toilet use, which is particularly damaging for and discriminates against people who have inflammatory bowel disease.

Pauline McNeill talked about her niece and the impact of IBD on young people. Too often, young people in school have to seek permission to go to the toilet or access period products. We have to change that.

In conclusion, I again thank Pauline McNeill for securing the debate, and Crohn’s and Colitis UK for its fantastic work. I urge the Scottish Government to respond to the recommendations that are directed at it and our health boards.

I was tempted there to say, “Monica Lennon, would you please just get 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 refer to colleagues by their first names. I remind members that they should use full names, please, because that is best for the official report.

17:31  

I thank Pauline McNeill for bringing this important subject to the chamber and for her comprehensive contribution. I, too, will focus on a particular aspect of the debate: the accessibility of public toilets, which is mentioned in the motion.

As we have heard, Scotland has the highest rates of Crohn’s and colitis in the UK, and their incidence among young people has soared in recent decades. Despite the growing demand for public conveniences, we know—thanks to a story in The Press and Journal—that, on average, Scottish local authorities have closed about 45 per cent of their public toilets. That has deprived neighbourhoods and communities of a vital public service, but it particularly affects people who have conditions such as inflammatory bowel disease. Crohn’s and Colitis UK recognises that access to toilets is of great concern to people who live with such conditions. Last year, it conducted a survey in which 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. Just imagine that—it should not be happening.

The emotional impact of such conditions should not be underestimated. Having an accident in public can be profoundly embarrassing and hugely distressing. We must get to grips with the issue and ensure that people have the facilities that they need. We want to ensure that everyone is confident about getting out and about: if they cannot do so, they will avoid leaving home, which will result in isolation and loneliness.

The lack of suitable toilets on public transport must also be addressed urgently. My colleague John Finnie found that 22 per cent of ScotRail’s toilets failed an audit that was conducted in 2017. Even when toilets are provided on public transport, they are not of a suitable standard, which, again, can severely inhibit the mobility and freedom of people who have bowel conditions.

Monica Lennon mentioned the Planning (Scotland) Bill. In September 2018, I successfully lodged an amendment to that bill—in the Local Government and Communities Committee’s debate, in which Pauline McNeill and Monica Lennon were very supportive—to ensure that local development plans must include a statement of the planning authority’s policies on provision of public toilets, which could be part of a community access scheme. The City of Edinburgh Council has such a scheme, through which 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 also commend the many save our loos campaigns that have sprouted up across the country, from the Highlands to more locally. The issue is a very important one.

I was contacted by a constituent, who has given me permission to refer to her email. She writes:

“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 which affect people’s ability to control their bowel and bladder, as well as mobility issues”.

As she said, that can mean that people need more time to access facilities. However, she continues:

“in the past few months, I have witnessed two customers asking if there was a toilet they could use and both being told no—one a small food outlet with a sit-in facility, the other a large store on Princes Street.”

That is happening everywhere, and it is an issue that we have to address.

Monica Lennon is right in saying that it can be very uncomfortable to have to ask for a key or a code. Sanitation is a basic human right, and, if we are not providing that in 21st century Scotland, we need to have a good look at ourselves.

I realise that I have gone over my time, Presiding Officer. We must do all that we can to make sure that people with hidden disabilities do not feel stigmatised. I congratulate Crohn’s and Colitis UK on its not every disability is visible campaign, and I look forward to working with colleagues to address the issue further.

17:36  

I, too, congratulate Pauline McNeill on securing the debate and on her co-chairing, with Clare Adamson, of the cross-party group on inflammatory bowel disease. I am a member of the cross-party group. I do not come with any great hinterland of experience of IBD, but I have found it fascinating. It does what good cross-party groups do: it engages in the political and policy debates, but it also gives MSPs access to the expertise of clinicians and those who work on the front line. As we have heard, it also gives us opportunities to hear at first hand about the day-to-day experiences of those who live with IBD. I vividly recall hearing from Joseph, whom Pauline McNeill mentioned. If he does not make it as the next Andy Murray, I would not be at all surprised to find him in the chamber at some point in the future, articulating his powerful arguments on this and many other subjects.

I will not rehearse again the figures that we have heard, but we must not lose sight of the prevalence of IBD in Scotland. We have the highest prevalence in the UK and the trend is upward, particularly in relation to paediatric onsets, which is putting huge pressure on services. However, we should not lose sight of the positives. There are advances in research, as Miles Briggs reminded us, and there is excellence in service delivery at the present time. There is also innovation through digital medicine and the like. So, there are positives, but there are also many challenges that we are yet to get on top of.

Monica Lennon and Alison Johnstone rehearsed very well the arguments around access to public toilets, which is obviously a key issue. Other themes that come up regularly in the cross-party group and that are mentioned in the briefings for the debate include the variations in access, which concern me. We are told in one of the briefings that urban areas generally enjoy better service provision that their rural counterparts. That might not come as any great surprise, but we clearly need to tackle and overcome the geographic barriers that exist. That might require a degree of creativity in how services are delivered, but there is no reason why there should be less access to good-quality services in rural areas than there is in urban areas.

I have also been struck by the variability in access to psychological services. As Clare Adamson reminded us, we are talking about a lifelong condition that can be painful, that is certainly debilitating and that is, for many people, invisible. It should come as a surprise to no one that the need for psychological and emotional support is often every bit as great as the need for medical support, particularly for those who are diagnosed at a younger age.

I note the appeal for greater shared decision making by patients and clinicians. That is good practice in any event but, given the nature of IBD and how it impacts individuals in a very particular fashion, that seems to be not just good practice but 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 years—Angus’s knees have certainly suffered in the cause of supporting IBD sufferers—but it has clearly been well worth it not just to raise money but, as many colleagues have said, to raise awareness.

The first time that I heard about the condition was when I was working in London and a work colleague explained his experience to me. I remember feeling absolutely horrified, and it was obvious how difficult it was for him to have that conversation with me—indeed, with anyone. Things have moved on a bit since then, but, as Clare Adamson reminded us, the sense of stigma is certainly still there and IBD is still seen as an invisible disease. Debates such as this are, therefore, absolutely crucial, and it is all the more important that we keep the issue visible.

I thank and congratulate Pauline McNeill once again, and I acknowledge the tremendous work of Nancy Greig of Crohn’s and Colitis UK and everybody who is working to improve the lives of those living with the disease.

17:40  

I thank Pauline McNeill for securing the debate, and for the attention that she continues to pay to the issue and her work with the CPG on inflammatory bowel disease.

I wanted to speak in the debate after meeting a constituent who has ulcerative colitis and hearing about the difficulties that she is experiencing, particularly with her employer. She came to see me because of those problems. It is my understanding that her employment problems are, unfortunately, all too common for people with IBD. That needs to change.

When my constituent’s disease is active, it leads to intense fatigue; I am sure that we are all aware that it is a symptom. 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 her symptoms are a result of something that she ate, as opposed to the disease that she has. She has also been required to provide evidence to justify the accommodations, which she has found to be embarrassing and, frankly, unacceptable. However, her employer is unwilling to look beyond the obvious symptoms and to acknowledge other aspects of her disease, such as the intense fatigue that she suffers. Given that fatigue is a hidden part of the disease, it is something that her employer finds difficult to understand or to accommodate.

My constituent suggested, to her employer, flexible arrangements at work, but all her suggestions have been refused. She needs to work and wants to work: her work contributes not only financially, but to her sense of self. However, her employer has refused to help her to establish a work schedule that would enable her to work effectively while managing her condition. Rather than have a reduced or flexible workload, she has had to be signed off by her doctor and is now on sick leave. That serves only to increase her stress level, which in her case simply exacerbate the disease. I am sure that that story sounds familiar to many members.

Thanks to Crohn’s and Colitis UK, and in particular, the representatives from Crohn’s and Colitis Ayrshire and Arran whom I met last month here in Holyrood, we have learned that IBD can be considered to be a disability under the Equality Act 2010, and therefore employees with the condition are entitled to protection from discrimination, and employers are required to make reasonable adjustments to accommodate the demands of the disease. 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 to gain their support, and she is not particularly comfortable about sharing information about it.

It is that sort of experience that drove the Scottish Government’s national blueprint, which is changing how NHS boards treat IBD. There is good practice in NHS Ayrshire and Arran that I can share with colleagues, but I do not have time to go into it. When I spoke to the patients’ rights champion, Kirsty Gibson, regarding the Ayrshire experience, she said that there have definitely been improvements following the blueprint, including having gastroenterology specialists, more IBD nurses, an IBD helpline and patients being seen at clinics.

However, my constituent still thinks that more can be done, including ensuring that people can access the right services at the right time, and at a time of their choosing; having more IBD nurse specialists, who are always needed and always welcome; having more after-hours clinics; ensuring more uptake of mental health support, particularly for family members; and using technology so that patients can consult nurses from home, which I understand was done in the Highlands pilot.

Of course, we need to challenge public discrimination. Crohn’s and Colitis UK’s “Can’t wait” cards are dismissed by most shops and stores. I hope that debates such as this will help to raise public awareness. As I mentioned, the 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, but more can always be done, particularly to encourage a more acceptable approach from her employers. There is no doubt that people are struggling enough with the concept of having a chronic illness so early in their lives, without having those additional worries to concern them.

Once again, I thank Pauline McNeill for bringing the subject to the attention of Parliament.

17:45  

I add my congratulations to Pauline McNeill for securing time in the chamber to debate the 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. That is a benefit of having members’ debates.

Crohn’s disease was something that I was vaguely aware of but, probably like most people, I did not give it too much thought. That was until I came across a young athlete who had the condition, and whose father also had the condition. I was not the athlete’s primary coach, but I did some work with them and I knew the family particularly well. When working with athletes, it is incumbent on the coach to understand any specific issues that are pertinent to the athlete, any adjustments that might need to be made in their training programme and how it might affect their performance.

Only at that point did I begin to realise how debilitating the condition can be—the constant need to change the training programme, depending on flare-ups, and the increased focus on diet and access to an appropriate diet. It involves a constant planning cycle. When we were moving around from venue to venue and during warm-weather training, we had to know where the nearest toilet was and where the athlete would be able to access the diet that they required.

I am often accused of seeing things through a sporting prism, but sport exacerbates and highlights the issues. As Pauline McNeill said about the young lad who played tennis, IBD does not necessarily have to completely shut down a person’s life, because that young lad went on to become a Scottish champion.

Pauline McNeill said that IBD is an “invisible disease”, despite it being potentially extremely painful and, in extreme cases, life threatening. That brought the problem home to me, because that is exactly what happened to the young lady whom I talked about. She is all grown up, and is now passing on her knowledge as a coach.

It is an invisible disease, but it is surprisingly common, with 26,000 cases registered in Scotland. Furthermore, and more important for me, is that there has been a huge increase in the incidence of IBD in under-16s.

There are many issues that need to be addressed, and have been addressed very well in the debate. I will focus on a couple of issues that are of particular interest to me. It will not be a surprise that I have picked diet, which is a topic that is raised constantly in the chamber. I understand that diet is absolutely crucial in managing IBD. That applies to the sufferer, to the parents and to the education system. After all, it is highly likely that teachers will be teaching pupils who are suffering from the condition.

That is another reason why I am so keen that we continue to consider how we make up and source school meals, and meals in other public facilities. The increase in processed food in our diet is being connected to the increase in conditions such as IBD. During my time in Parliament, I will continue to pursue ensuring that the meals that we offer and serve in schools are of the highest quality.

Access to specialist healthcare professionals and education by clinical nurse specialists and specialist dieticians would be a great part of the solution. That is something in which Scotland lags behind others, with nearly a third of IBD sufferers having no contact with a specialist nurse.

The need for psychological support has been mentioned. It is draining for people to be frustrated by inability to participate in life as they would like. Access to mental health services has been highlighted in the debate.

Healthcare technology can play a major role in tackling the lack of available treatments and promoting self-management of conditions. That, in turn, empowers sufferers. Direct access to specialist advice on many conditions via technology is a direction of travel that the health service needs to take, especially in rural areas.

Cross-portfolio solutions are required. I thank Pauline McNeill for bringing the debate to Parliament.

I see that you are looking at me, Presiding Officer; I will watch the clock next time.

I am tempted to say, “Aye, right.”

17:50  

I thank all members who have taken part in this evening’s important debate, which I congratulate Pauline McNeill on securing. I thank her for her continued work with us, through the cross-party group—I know that other members here are also members of that group.

I thank members—in particular Willie Coffey—for giving a voice in this chamber to the many people who suffer from IBD; it is always important that we put such conditions in context. Like other members, I take the opportunity to thank Crohn’s and Colitis UK for its hard work, particularly in developing the national blueprint for IBD in Scotland. It was good to hear Willie Coffey say that there is a feeling that things have improved, albeit that they are not necessarily where they should be.

I also thank Crohn’s and Colitis UK for its on-going engagement with us, to make a difference for people in Scotland who have these conditions. Since the blueprint was published three years ago, we have been working closely with the charity and other third sector partners, in conjunction with NHS boards, to improve pathways and provision for people with IBD.

Successes so far under the modern outpatient programme include the introduction of a standardised dataset, which is informing service improvements and aiding shared decision making, and a series of treatment algorithms for primary and secondary care, which are supporting 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, Clare Adamson and others mentioned the provision of specialist nurses, which is an important issue. A pilot will shortly commence to introduce IBD specialist community nurses, to enable people to access scheduled and on-demand reviews and support in community-based settings—that is important in the context of Liam McArthur’s points about the more rural parts of Scotland. The pilot will include evaluation of the use of phone and video consultations, the benefits of which members highlighted during the debate. The outcome of the IBD community nurse pilot and other work around long-term conditions such as IBD will 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, which contains information for people with IBD, to provide practical support during episodes of flare in their condition, and an individual care plan, to support better, person-centred conversations during appointments with healthcare professionals. We will be piloting that work over the next few months. Again, we acknowledge the support and collaboration of Crohn’s and Colitis UK in that regard.

As part of the modern outpatient programme, an implementation plan will be developed with the clinical community to take forward recommendations in the report. Members will be interested to hear that one of the things to come out of the programme is a mobile app. The app is under development and will give the location of available local toilets, which is a matter to which I will come shortly.

Will the member take an intervention?

Is it on that point?

No.

Is it to do with toilets? I will deal with toilets later.

It is not to do with toilets.

On you go, then.

Could you two make up your minds?

I did not want to mislead the minister—my question is on the modern outpatient programme. Earlier, I mentioned that, given the number of tests that people who are diagnosed have, some would say that, as part of the programme, letters about those tests should be copied to all patients. Clinicians seem to support that idea.

While I am on my feet, I hope that the minister will address the question of what more can be done by health boards to adopt the blueprint.

On the point about letters, there is a responsibility in the Patient Rights (Scotland) Act 2011 to ensure that such information gets to patients using terminology that they can understand; sometimes, copying a letter to them will not fulfil that duty. It is important that people understand what is being decided on their behalf. The issue might be one that we can pick up on specifically later.

One of the other areas that Pauline McNeill, Clare Adamson 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 will lead to more effective diagnostic approaches and treatments. That is why we have partnered with the charities Cure Crohn’s Colitis and Crohn’s in Childhood Research Association to fund a major research project looking at the effect of environmental factors on the prognosis of Crohn’s disease and ulcerative colitis. That project has the potential to lead to the development of personalised therapy in Crohn’s disease and colitis. It has also attracted worldwide attention and is 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. It aims to take a cross-policy approach to improving the physical, mental and emotional health and wellbeing of children and young people in Scotland. Liam McArthur talked about the need for timely access to psychological support. 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, Alison Johnstone and just about everyone in the chamber, in fact, spoke about access to public toilets. Why that is a particularly important issue for people with IBD was well covered. It is an issue that is of immense concern to people, because it has a bearing on their ability to enjoy full and active education, work and social lives.

The provision of public toilets is the responsibility of local authorities, as they are best placed to prioritise the needs of their local communities. However, I am pleased that the Planning (Scotland) Bill includes reference to local policies and proposals for public toilets and mechanisms for the expansion of the provision of changing places toilets. I know that the Minister for Local Government, Housing and Planning is supportive of that and is continuing to consider how we can go further than what we are doing in the bill.

Monica Lennon also raised the fact that some private businesses—indeed, some coffee shops not far from here—have locks on their toilets. Obviously, they are private businesses, but what can the Government do to try to spread the message that people need access to those toilets?

We all have a role in encouraging businesses to understand that making their toilets accessible is good for business—that is one of the important things that we can do. I think that the mobile app that is under development might help with that, because I can see an obvious advantage to businesses that are on that map. I hope that the business community hears that message.

Alison Johnstone mentioned public transport, and my colleague Paul Wheelhouse, the Minister for Energy, Connectivity and the Islands, is keen to point out an example of good practice in that regard. He has made me aware that the refit of the MV Hrossey on the northern isles route will include, for the first time, a changing places toilet. That shows that where there is a will, there is a way. We need to consider the issue at all points, because it is clearly important.

In addition, the Government is investing £6 million in the rural tourism infrastructure fund to support public infrastructure in rural tourism hotspots, including the provision of toilets. I hope that that will help in some more rural areas where there is particular pressure.

I again thank Pauline McNeill for bringing the debate to the Parliament and I thank members for their contributions. I particularly thank the members of the cross-party group on IBD. Liam McArthur was absolutely right that the group has a positive role in helping to develop policy, representing the community and ensuring that we are all aware of what can be, as members have said, a hidden disability but which, clearly, should not be.

It is the Government’s intention to 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.

Meeting closed at 18:00.