Meeting of the Parliament

Meeting date: Wednesday, October 4, 2023

Official Report 1073KB pdf

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Stoma Care

The final item of business is a members’ business debate on motion S6M-10345, in the name of Edward Mountain, on stoma care in Scotland. The debate will be concluded without any question being put.

Motion debated,

That the Parliament acknowledges what it sees as the importance of stoma formation in healthcare, and congratulates all those involved in supporting people with them, including in the Highlands and Islands region; notes the dedication shown by those who work in this field in ensuring that the best care is provided in what is considered a life-changing event, and notes calls for all organisations to play their part in ensuring that those with stomas are able to lead normal and full lives.

17:34  

It is a privilege to stand in the chamber to speak to the motion and, in doing so, fulfil a promise and meet a challenge. In 2022, I promised to highlight the importance of bowel cancer awareness and I committed to raising stoma awareness. Last summer, I was challenged by Brian Devlin—sadly, he could not make it here tonight—to do something to promote greater understanding of stomas in the Scottish Parliament. I hope that I will do both those things today. I thank all the members across the chamber who signed my motion to make the debate happen.

At lunch time today, a group of ostomates set out from the Parliament to walk to the top of Arthur’s Seat. They did so to trumpet loudly that there is little that they cannot do. In planning for today, I had to use all my skills to prevent a parachute drop by some of the more enthusiastic ostomates, who thought that that would make a great display. Ostomates are quietly getting on with their lives—the lives that their bags give them.

Our debate will be watched by lots of people in the chamber, including ostomates and their friends. I welcome them all. Some of them faced considerable challenges to be here, but they are a tough lot. They handle much more unpleasant things daily than most of us have to.

Our lives are a journey that sometimes has bumps in the road and diversions. When we reach those diversions, we have more often than not to embrace the route change, because not to do so can be a disaster.

On 28 January 2022—the day before my operation—a string of people visited me. One nurse, who came in with more purpose than the others, clutched a large bag and a black marker pen. With little explanation, I was told to remove my top and made to stand up, sit down, lean forward, lean back, breathe in, breathe out and do a heap of other exercises. Off came the pen lid, and a large black spot was marked on my tummy. I was told that that was where my stoma would go and that it would be a perfect fit—and it was. That was the choice not of my surgeon but of my stoma nurse.

I praise our stoma nurses, who are key to good stoma care. We need to bring more people into that profession. We need such nurses now more than ever, as there are more than 20,000 ostomates in Scotland. Many people have trouble-free stomas, but some do not.

I am grateful to—[Interruption.] My apologies, Presiding Officer.

Can we have Mr Cole-Hamilton’s microphone on, please?

I am sorry for derailing the wonderful momentum of Edward Mountain’s excellent speech. I think that I speak for the whole chamber in saluting his bravery in talking about his stoma experience and bringing light to what he calls the challenges for the many thousands of Scots who face life with a stoma but who in no way let it conquer their indefatigability.

Does Edward Mountain recognise that we, as a society, still have a long way to go to tackle the stigma of stomas and to address access to lavatories in public places for people with stoma bags, so that they can go to the shops, cinemas and bars with confidence? Will he join me in saluting not just stoma nurses for their work but everyone in the stoma community, including the companies that produce stoma kits?

I give Edward Mountain the time back for the intervention.

I will join Alex Cole-Hamilton in that, and I welcome his intervention. There is stigma, perhaps for people who face having a stoma and among people who know nothing about it. I can honestly say that, the day before my operation, I knew little or nothing about stoma care. I had been a typical male ostrich and had buried my head in the sand. My wife found out everything by googling, but I refused to let her tell me about it. However, as I came to know more about stomas, I realised how normal they could be.

I return to what I was saying about trouble-free stomas. Some ostomates do not have a trouble-free time. They face constant struggles with leaks and sores, and they struggle to get the help that they need. That is why I call tonight on all health boards in Scotland to collaborate on a “once for Scotland” approach to ensure best practice to deliver the highest quality care.

As part of that excellent care, we should offer an annual check to all those who have a stoma. It is clear that some will not need that, but some will. We should remember that, although stomas can stabilise, equipment changes and improves, which means that a review can make things better.

Prior to this evening’s debate, MSPs received a colostomy bag. There is a huge range. One size can be cut to fit all, but there are subtle differences. It is those differences that make the difference. There are 15 or so companies that bring their skills to designing and making the bags. However, there is a danger that, in future, we might end up having one bag maker and supplier. I encourage everyone, including our stoma nurses, to consider the full range, because not to do so would not be making the best use of technology.

I look forward to hearing the speeches of other members, but, before we do, I would like to make a plea. The five asks that are being promoted tonight—and, hopefully, promised by the Government at the reception—can be delivered by the Government at a very low cost, and I believe that we all can support them.

However, there is one other thing that I suggest we can all champion, and it comes back to what Alex Cole-Hamilton said. I urge every member of the Parliament, when they next go into a building, to ask the owner whether the disabled toilet has a shelf. It is a strange question, but the answer is that it should have. Why? It is because, if someone wants to change a stoma bag, they will need a variety of equipment—replacement bags, possibly scissors, a mirror, wet wipes, a disposal bag and perhaps even a stoma collar—and, if there is no shelf, the only option is to lay everything out on the floor, which is not great and is certainly not hygienic. A simple shelf costing a few quid could change that.

I would like to start the ball rolling on that tonight, Presiding Officer, by asking you if you know whether the Parliament’s disabled toilets have shelves.

Will the member take an intervention?

Yes, of course.

I call Christine Grahame—on behalf of the Scottish Parliamentary Corporate Body, I suspect.

I cannot speak on behalf of it, but I am a member of the SPCB. However, before I make my point, I must say that I have found this an emotional speech to listen to, and I commend you from my heart, Edward, for speaking in that way and for bringing the issue to the chamber.

As a member of the SPCB, I can say that I have listened to what you have said, and we will have something done about it.

Even though that intervention was not through the chair, I will allow it.

That is one of the things that would make my evening, because I asked the Parliament more than a year ago whether it would fit shelves in the disabled toilets, and the latest news is that it is still thinking about it. If the SPCB, through Christine Grahame, is going to make that promise tonight, that is welcome. I think that there might be other SPCB members in the room whose views might need to be considered, but let us go for that.

It is not only in the Parliament that there is a problem. NHS Highland’s disabled toilets do not have a shelf, and I bet that it is not the only health board where that is the case, so we have a way to go. If the Parliament installs shelves, it could make a real change and lead the way.

Frankly, I think that I have said enough. I have the greatest admiration for everyone in the stoma world: those who make the bags, those who fit them, those who wear them and those who look after the people who wear them. However, my greatest admiration is for those who wear them and prove every day that they are no different from anyone else and that, whatever the challenges that they face, life is for living.

I look forward to hearing the rest of the debate.

Thank you, and congratulations, Mr Mountain—even if you have exposed divisions in the corporate body.

17:44  

I welcome the opportunity to speak in this short debate. I congratulate Edward Mountain on securing it, and I welcome everybody to the public gallery. I recognise the work that the member has done to raise awareness of bowel cancer and stoma care in Scotland and to champion stoma care for people across Scotland. That includes hosting the reception in the Parliament this evening—unfortunately, I will not be able to attend because I am chairing a cross-party group meeting, but I wish the member well at his event.

I remind members that I am a registered nurse. During my time in the operating theatre, I assisted in many cancer and stoma-creation surgeries. I know that stomas can be created for a number of reasons, such as Crohn’s disease and ulcerative colitis, or—as I experienced when I worked in Los Angeles—even as a result of trauma inflicted on people by stab wound injuries.

Not all stomas are permanent.

I thank Emma Harper for taking an intervention, and I thank Edward Mountain for bringing the debate to the chamber and being so honest and forthcoming about his experience in his speech.

I am co-convener of the cross-party group on inflammatory bowel disease. One of the things in Edward Mountain’s speech that resonated with me was what he said about different sizes of stoma being required. We have not yet talked about the fact that, while for cancer patients, the treatment can be life saving, for Crohn’s disease and colitis patients, it is life changing. Those conditions can affect a lot of young people and children, so we should think about how they are impacted by stigma, lack of facilities in schools and everything else that has been mentioned.

I can give you the time back, Ms Harper.

I thank Clare Adamson for her intervention. That aspect is important, in my experience. I have looked after children who have had stomas created, and it is important that we highlight the associated stigma.

I will pick up on Edward Mountain’s point about disabled toilets in the Parliament. In the toilets on the fourth floor, where my office is, there was a table during Covid, but now it is not there. It would be really simple to return a table there, while the Parliament is working on the shelf issue. I absolutely support the ask that Edward Mountain has made in the chamber this evening.

I will pick up on the point about bowel screening. It is now quicker and easier to do, with one wee small sample to send instead of the three samples that were previously required. I know that people who are diagnosed with bowel cancer early are 14 times more likely to survive it.

Bowel cancer is one of the main reasons why stomas are created in the first place. The screening test is offered to people who are aged between 50 and 74. I was interested to read that the latest screening uptake statistics for Dumfries and Galloway and the Scottish Borders are as follows. A total of 60,677 people in D and G were invited for their screening test, and 38,070 were screened. That was an uptake of 62.7 per cent, which has gone up from previous years in which uptake has been noted. For the same period in the Scottish Borders, 47,389 people were invited for screening, and 30,944 sent in their samples. The Borders uptake, at 65.3 per cent, is therefore slightly better than the uptake in D and G, so there is a wee bit of competition there. Those are good figures, but we need to improve them.

The fact that we are discussing this issue in the chamber today and raising awareness about the importance of screening is really important.

Will the member take an intervention?

I note that our time is really short tonight—I will take the intervention, but I think that I am almost out of time.

I thank Emma Harper for taking my intervention. She mentioned the figures—it sounds as though almost a third of people are getting the test but not doing it. Does she have any ideas about how we can increase the figures to get them nearer to 100 per cent?

Sure. Obviously, work needs to be done to continue to raise awareness of the importance of screening, and we are helping by talking about it today. I am sure that work will be taken forward to continue to raise awareness of the importance of not only screening for bowel cancer but other screening that we do.

Finally, I want to mention the stoma care nurse specialists, because if we didnae have them, it would be challenging for people to find out about certain things. For example, Edward Mountain described the black marker on his abdomen—I have seen that being done for people. Sometimes, I can see that patients are well informed about it, but, at other times, they need really good support and information. The stoma nurse network in Scotland should be valued and supported, because those nurses do a phenomenal job.

In closing, I thank Edward Mountain again for his courage in bringing the debate to the chamber. All the people who work in stoma services should be recognised for doing a fantastic job, and I encourage everyone who is eligible to ensure that they take up their screening invite.

17:50  

I am grateful for the opportunity to speak in this members’ business debate, and I commend Edward Mountain for his courage in bringing the debate to the chamber.

I apologise to you, Presiding Officer, and to Edward Mountain and other members, because I have to leave after my speech. I will not be able to attend Mr Mountain’s event, because I am hosting another event in the building myself, but my thoughts are with him.

I echo the motion for debate, and I put on record my own sincere thanks and my commendations to all the dedicated professionals who are involved in the care of those living with stoma. It really is a big life change for individuals, and they have to be congratulated on how they manage that process with courage. They are supported by a network of individuals, including nurses, who are worth their weight in gold and who, by their very actions, give much-needed support, comfort and reassurance to people every day

As we have already heard, some people have to deal with the trauma of leaks from their bag, and have to think about how they can manage that and where they can change the bag. All that can present a major issue, day to day, for some individuals. However, the teams of stoma nurses providing support can offer reassurance. In my region, we have such teams based in the Forth Valley royal hospital and Perth royal infirmary, and I know about the work that they do to support individuals in communities the length and breadth of those areas.

However, care has become expensive, which is an issue. We cannot look away from the processes that are taking place, and some of those processes need to be streamlined to enable us to look at where we are going.

Back in 2020, Nursing Times reported that,

“Senior nurses are seeking to establish a ‘Once for Scotland’ national approach to stoma care, to end variations in practice and bring down ... costs”.

We know that some of those costs have mushroomed over the past few years: with a 65 per cent increase over the past five years, the costs have now reached £31 million, although there has been only a 10 per cent increase in the number of patients. How that is managed needs to be looked at, as the average cost for dealing with these patients should be roughly between £700 and £2,000 a year, but in some areas it now exceeds £5,000 or £6,000.

Back in 2018, the NHS Scotland executive nurse director group commissioned the national stoma quality improvement short-life working group to look into the matter. The working group made many recommendations—because of Covid, that process took some time—and highlighted that a review is required. I look forward to hearing from the minister, in her summing up—although I will not be here, so I look forward to reading it later—about how we can manage some of that, because it is vitally important that we give those individuals the support that they need.

The review flagged up issues around general practitioners, including an “over reliance” on GPs, who were “often stretched” with regard to their capacity to manage and support individuals. The groups of healthcare professionals highlighted in the review have a common denominator: they are all looking to provide support and do as much as they can for people across Scotland.

In conclusion, on a personal level, I am aware of the benefits and challenges that arise with stoma, because my mother has had one for a number of years. I look forward to the minister telling us in her summing up how the Scottish Government can ensure that the streamlining of stoma care and its costs results in resilient care. We must empower stoma care nurses as practitioners. They do a phenomenal job, but they are sometimes the unsung heroes, and we need to commend them for, and congratulate them on, what they do to support individuals, day in and day out.

It sounds like it will be a busy evening of events in Parliament.

17:54  

I thank Edward Mountain for lodging the motion and securing the debate. I was not intending to speak tonight, but, having heard Mr Mountain’s earlier question to the minister, I thought that it was important to highlight my experience as an ostomate and one of the one in 335 people across the United Kingdom who has lived with a stoma. I have learned to live with having a stoma over the past seven years. I take this opportunity to thank the staff of the Western general hospital, especially my consultants Mr Wilson and Mr Clark, and the stoma nurses Isla and Sheena.

Earlier, Mr Mountain suggested that there was a need for an annual review for all ostomates. In my experience, that is not necessary. Support is required but predominantly that support is needed when a person first finds themselves with a stoma. When a patient leaves hospital after major surgery to have the stoma formed, the stoma nurses visit them at home to provide stoma care support. The stoma nurses then invite the ostomate to their clinic, where they will receive a regular check-up until such time as their stoma settles into a regular pattern.

The Western general hospital also has a dedicated helpline, and if a patient does not manage to speak to a stoma nurse immediately, they will phone them back, no matter how trivial the inquiry is, as it is about providing reassurance.

Anyone who lives with a stoma has many questions, especially at the start, such as about the food they can eat, how much liquid they can drink and whether they should avoid anything, how they should deal with ballooning and pancaking, whether there are any activities that they should avoid, such as heavy lifting, and whether they can travel abroad.

In my experience, the current system works, given the pressures on our national health service. This Saturday is stoma awareness day, and this year’s theme is “Smash social exclusion”. Many people, including me, have that hidden condition and can, from time to time, require toilet facilities that are safe and clean to make stoma bag-changing easier. We require simple changes to facilities to make life easier, such as a hook on the door, shelf space, a mirror and a disposable bin. Research by Colostomy UK found that some people living with a stoma found that a lack of suitable toilet facilities led them to feel socially excluded, as they have concerns that clean, safe and suitable facilities will be difficult to find when out in public or at events.

Edward Mountain has said that we have accessible toilets in Parliament, but even here they are not suitable for stoma users. Minor changes would resolve that situation, and I am sure that, now that it has been highlighted in public, the facilities management team will address that shortcoming.

Those of us in Scotland with a stoma are fortunate that we do not face the prescription charge of £9.60 an item that is chargeable south of the border. For my stoma care, I require seven individual items, five of which must be ordered by prescription from my medical practice. In England, a person may qualify for free prescriptions if they have a stoma but not if they have a temporary ileostomy. Given the cost of living crisis, the UK Government should introduce free prescriptions for all those individuals living with serious health conditions, as the Scottish National Party Government did in Scotland.

17:58  

I, too, thank Edward Mountain for securing this debate and for making such a personal speech tonight, and I thank other members who have done so as well. I also take the opportunity to welcome those in the public gallery. It is called the people’s Parliament for a reason. It is really important that the public come along and bring to us the things that they want us to talk about. We in the Scottish Parliament can raise awareness of the issue of stoma care and of the team of experts helping to make life manageable for people who have been through what the motion describes—quite rightly—as “a life-changing event”.

We have heard about what a stoma is, how it affects lives, and, as Edward Mountain described, the “bumps in the road”. We have also heard that around 20,000 people in Scotland receive stoma support.

I, too, want to mention the exceptional teams around patients. There are so many different roles in those teams. I looked into what support people might need through that journey: the stoma care nurses who have been mentioned, community pharmacy and community care workers, general practitioners, practice nurses and family carers—the list is endless. We should all take the time to thank the people who support individuals through this journey and at different times in that journey.

In my career before I entered Parliament, I was fortunate enough to see many patients who had positive stories of going through this very difficult journey and reaching a place of acceptance, hope and understanding that life goes on. I want to make the point that, honestly, that was often possible through the support of the stoma care nurses, who really do help to change lives.

When we get the opportunity to raise issues with ministers, we have a responsibility to do that, so, in the short time that I have, I want to raise with the minister the need to secure that service for the future. We need to ensure that we have well-educated, skilled nurses in the future. That links to a point that Edward Mountain made earlier about ensuring that we have the skilled nurses and that we have a workforce plan for them, because, to get those extremely skilled stoma care nurses, we have to have people coming through training and into the profession.

Recently, I visited the Ayr campus of the University of the West of Scotland, in my South Scotland region, and had a tour of the absolutely cutting-edge facilities that are provided to nursing students. I also had an extremely useful discussion with the teaching team around the drop in the number of applications to nursing. With such facilities and such skilled nurses, I would hope that we could start to encourage many more students to come into the nursing profession. It is disappointing that the figures for June 2023 show a decline in the number of applicants to the Scottish programme—I think that there were 6,450 applicants as opposed to 7,930 in 2022. The Royal College of Nursing has asked the Scottish Government to work on how we make sure that nursing is seen as a valued career with good career choices, which, of course, it is. Having seen the university provision in Ayr, I think that we can all champion nursing as a profession.

Carol Mochan should be commended for encouraging folk into nursing—I say that as someone who was a nurse for 30 years before coming here. Through the comprehensive holistic care that they deliver, stoma care nurse specialists are central to enabling people to have good lives. Does the member agree that that message is part of what we need to send in order to encourage people into nursing?

That was an excellent intervention from the nurse among us. I also had a career in the health service and I believe that we need to ensure that people see all the career avenues that are available to them in the NHS. It is a wonderful workforce to be part of. The Scottish Government has a responsibility to make nursing an appealing avenue for students.

I recognise that I need to conclude, Presiding Officer. I again thank Edward Mountain for bringing this debate to the chamber and I thank all the hard-working staff and teams who are around people who receive stoma care in our hospitals and our communities. I am sure that people also want me to thank the families for their support. It is good that we have had the opportunity to discuss the issue tonight, and I commit to ensuring that, if I am able, I will ask anywhere that has a disabled toilet to please place a shelf in it.

18:03  

I begin by congratulating Edward Mountain on securing today’s debate, and I welcome everyone who is in the public gallery. I very much appreciate Edward Mountain taking advantage of the opportunity that he has as an elected member of the Scottish Parliament to raise the profile of stoma awareness. As he knows, my father had bowel cancer and, for the final three years of his life, he was accompanied by his stoma, so this is a very personal issue for me.

I also appreciate Gordon MacDonald sharing his experiences. I remember the questions that he referred to—I recall my dad asking what he could eat and drink. However, I had completely forgotten about ballooning and pancaking until Gordon MacDonald mentioned that. It is strange, what memories come back. I thank him for raising those points.

Edward Mountain has done a great service by raising this issue previously, and I have spoken to him about the subject before. He posted an amazing sequence of tweets about his experience. I remember my husband telling me when I got home one day that he had just liked one of Edward Mountain’s tweets, and I have to admit that I nearly fell off my chair. However, when I understood what the subject was, I appreciated what he—and Edward Mountain—had done, and I want to take this opportunity to support Edward Mountain’s message and encourage anyone who believes that they may have symptoms that could indicate the presence of cancer to contact their general practitioner immediately.

The sooner that cancer is caught, the greater the chance of it being successfully treated. Emma Harper and others also underlined that message. I say to Douglas Lumsden that I know that some people, like my husband, are great users of social media, and we have a responsibility to use our privileged position to ensure that we are sending out to our constituents the important message that we are talking about today. I note the Scottish Government’s “Be the Early Bird” campaign, which I think is important. If all of us in this chamber can take the time to promote it, that would be hugely useful.

I am glad that we have had the opportunity to speak about stomas here today, as it is an aspect of healthcare that is not in the public eye. As Emma Harper said, there are many reasons for having a stoma other than having cancer. It is important for us to recognise that.

On the request for shelves in disabled toilets, that is something that I am going to start looking out for. I believe that Sainsbury’s has been moving in that direction.

In the interests of harmony, I had better discuss that matter with Jackson Carlaw and the rest of the corporate body. However, I think that, collectively, we can address it. I am glad that Gordon MacDonald brought up the issue of shelves, too, because they would be useful to many people who use the disabled toilets, not just those with stoma bags. I want to put that on the record, so that Jackson Carlaw and I will speak to each other afterwards.

A sensible U-turn.

I thought, from Jackson Carlaw’s reaction earlier, that he would be willing to talk about it. Perhaps he just wishes that he had suggested it as a contribution to the debate.

The speeches that we have heard underline the importance of the support that we can give to those who live with a stoma. As Carol Mochan clearly outlined, there is a network of people supporting stoma patients and their support can come in many guises, from the surgeons and stoma nurses in our hospitals, whom everyone has mentioned, to district nurses, once the patients return home, and from third sector organisations such as Colostomy UK, to family members and partners. Of course, it is important to recognise that those family members and partners need support, too, and need help to understand how their loved one is living with this bag that gives them life, as I think that I heard Edward Mountain describe it earlier.

It is important that those with stomas have access to the support that they need, especially in the early days, as they get used to their stoma. That support need not be restricted to healthcare professionals, but can come from other people with a stoma, who can be a useful source of advice and encouragement.

I am happy to discuss with the chief nursing officer the points that Carol Mochan and Alexander Stewart raised and ask whether those points can be raised with the directors of nursing to see what progress can be made. I appreciate that Alexander Stewart is no longer in the chamber, but I thank both members for raising those points.

I, too, will be attending the event in the garden lobby and look forward to speaking to the people who will join us there tonight. I thank Edward Mountain for organising that.

In conclusion, it is important that we have debates such as this one. Since I was elected, I have felt that one of the privileges that we have is the ability to use members’ business debates to increase awareness across Scotland and further of various things that we can help with. I am clear that stoma formation is an important aspect of healthcare and that its benefits are perhaps not as widely known as they should be. I hope that tonight’s debate will have gone some way towards correcting that.

That concludes this debate. I suggest that Edward Mountain point his colleague Jackson Carlaw in the direction of the Official Report of the debate, and I wish him well with his event this evening.

Meeting closed at 18:11.