Future of Stoma Care

Janet Daby Excerpts

Wednesday 17th May 2023 Westminster Hall

[Giles Watling (Clacton) (Con)]

I beg to move,

That this House has considered the future of stoma care.

It is an honour to serve under your chairmanship, Mr Betts. In July last year, I hosted a truly inspirational event called Stomas in Parliament, which welcomed participants in a unique relay race from a London hospital to Parliament. For colleagues who might be unaware, a stoma is an opening on the abdomen that can be connected to either the digestive or the urinary system to allow waste to be diverted from the body. The race was led by people of all ages who have a stoma, including a seven-year-old girl called Jessica, and other members of the stoma community, such as incredible nurses and charities, and suppliers of stoma services and products, as well as my hon. Friend the Member for Peterborough (Paul Bristow). Sadly, I did not and do not have the legs for such running, but the event was a symbolic display of the activities that people with a stoma can do when they receive high-quality care and support. I am delighted to see representatives here today. Thank you so much for coming.

The purpose of the race was to deliver a “calls to action” statement, which was passed to me in Victoria Tower Gardens, just outside Parliament. The statement was developed by people with stomas, and it sets out the improvements needed to ensure that everyone with a stoma has access to optimal care so that they can live their life to the full. It was good to see people doing that, but sadly many individuals still receive suboptimal care, which has a significant impact on their quality of life, including their ability to work, as well as placing additional pressure on the NHS through potentially avoidable GP or nurse appointments and emergency admissions.

[Janet Daby (Lewisham East) (Lab)]

Will the hon. Gentleman give way?

[Giles Watling]

I would be delighted to give way. The hon. Lady has chosen a great moment to intervene.

[Janet Daby]

I thank the hon. Gentleman for making such a powerful and significant speech to open the debate. I had a stoma in my late 20s, so I understand and recognise the significance of having great care. Does he agree that much more needs to be done to ensure that people get the care and support they need when they have a stoma?

[Giles Watling]

The hon. Lady is absolutely right. This is the message I intend to deliver today: we need more care, and we need to get it right and give it at the right time to the right people. This is about individual cases, as I shall touch on later.

Complications with a stoma can include leakage, which in turn can lead to painful skin rashes, unpleasant odour and isolation, all of which can lead to career and relationship difficulties. I admit that before I was approached about taking part in the Stomas in Parliament event, I had little knowledge or understanding of stomas, or of how many people of all ages across the country are living with stomas. In my Clacton constituency, there are at least 300 people living with a stoma. In the UK, there are between 165,000 and 205,000 people living with a stoma.

People with a stoma face many physical and emotional challenges in their post-surgery life. However, access to specialist stoma care is highly variable across the health system. In addition, such intimate healthcare conditions are often stigmatised and under-prioritised. That leaves too many people suffering in silence, which should not happen.

As I have learned more from people with intimate healthcare needs, I have realised that patient choice and shared decision making are essential. I have with me a fantastic prosthetic, which gives some idea of what a stoma looks and feels like. People live with the condition day in, day out. Unless people are users of particular stoma care services or products, they will not realise how transformative such positive treatment can be.

That message came across strongly during the Stomas in Parliament event. The attendees gave me a strong understanding of how important personal appliance choice is, and needs to be, to help people to live their life to the full. Of course, everybody is different and bodies change over time, which means that getting the right stoma appliance is vital. I hope my hon. Friend the Minister will commit to ensuring that people living with stomas are able to access the right products for them at the right time. I know that work is continuing on the next stage of the Department’s medtech strategy.

The formation of a stoma is a lifesaving procedure for many, but it also produces difficulties. More needs to be done to address those difficulties, and providing equitable access to defined specialist pathways will improve the consistency and quality of care and patient outcomes. Getting that right will support the NHS prevention and self-care agendas while reducing pressure on emergency hospital services and, in the long run, saving the NHS money.

Great work on patient pathways is under way in the stoma community. Just this month, the Getting It Right First Time programme was formed. It is led by the industry and joined by the charities and the surgery lead for the NHS, and its work includes applying an NHS Getting It Right First Time approach. As part of that much-needed work, the group will be undertaking a national audit and developing a best practice and evidence-based stoma care pathway to address the postcode lottery of stoma care, ensure long-term, follow-up services and ensure equity of access to care.

I wish to mention that I have spoken separately with Crohn’s and Colitis UK, which is the leading charity for the 500,000 people affected by Crohn’s and colitis in the UK; I have with me a briefing note from the charity, which I will be happy to share with colleagues. I have also received representations from the Urostomy Association, which has asked me to highlight, regarding the choice of equipment, that one size does not fit all: we need the choice of a variety of products from different companies. In some cases, people can have serious skin issues with a particular type of adhesive used by one company and may therefore need to change suppliers.

I turn to the issue of access to a specialist care stoma nurse. Ideally, annual checks with a stoma nurse would be useful, but in the main that is not possible. Some people with a stoma may rarely need to see a nurse, but others may have constant leakage problems and would benefit from more regular specialist nursing advice. Finally, GP surgeries are required to approve prescriptions for stoma supplies but have been known to delete items requested on a cost basis, not realising that doing so will cause suffering for patients.

I turn to my asks of the Minister. First, I would be most grateful if he committed to a meeting with me and the Stomas in Parliament organisers, Colostomy UK, the Urostomy Association, the Ileostomy and Internal Pouch Association, and Coloplast UK, to discuss the calls to action and the possible impacts of the medtech strategy on stoma.

Secondly, many people in the stoma community and the industry are concerned that the UK is sleepwalking into a position in which our science medtech industry is so stretched that it is seriously considering not having the UK as a primary market for research and development investment. Will the Minister commit to discussing those issues with me and the stoma community?

Finally, will the Minister commit to meeting the group working on the first NHS Getting It Right First Time stoma care pathway and ensure equitable care in the UK for every person with a stoma?

[The Minister for Health and Secondary Care (Will Quince)]

It is a pleasure to serve under your chairmanship, Mr Betts. I congratulate my hon. Friend the Member for Clacton (Giles Watling), my near neighbour, on securing this important debate. He is a tireless advocate for his constituents and for patients across the country who suffer from conditions such as bowel cancer. They are fortunate to have him as their advocate.

Let me start by touching on the importance of reducing stigma. Stoma care is a topic that not everyone feels comfortable talking about, and as a Minister at the Department for Health and Social Care I want to play my part in reducing the stigma around living with a stoma. I hope that this debate and the event to which my hon. Friend referred will play some part in encouraging people to talk more about stomas and to come forward for services such as bowel cancer screening. I am hugely grateful to him for the opportunity to discuss this important issue in Parliament.

We know how important prevention and early detection are to health. Bowel cancer screening is available to everyone in England aged 60 to 74, and since 2021 we have been expanding the screening offer in England to younger patients so that everyone aged 50 to 59 will be included by 2025. We also know that the early proactive management of bowel disease is far better for patients, as my hon. Friend rightly pointed out. In many cases, it will reduce the amount of surgery resulting from stomas.

My hon. Friend referred to patient choice and the differing quality of stoma products. I know how important patient choice is, not just in this area but in so many areas across our NHS. I also know—my hon. Friend put this point eloquently and articulately—that one stoma product does not always work for all patients, which is why it is so important that there is patient choice. I recognise that having the right stoma product to support patients’ quality of life is as important as the medical need itself. My hon. Friend raised a serious point about general practitioners deleting items; I will ask my officials in the Department to investigate that point and write to him.

I am grateful for the opportunity to update the House on the levels of NHS spend. Current NHS expenditure in this field is about £350 million every year, which is predominantly used to provide stoma products to patients. Over 9,500 different stoma products are available on the NHS, and these products are prescribed to patients under part IX of the drug tariff. I am pleased to remind colleagues that one area of focus in our inaugural medtech strategy published in February this year, which has been widely and largely welcomed by industry, is medical devices used in the community, which include prescribed stoma products.

We have a stoma products consultation, which I will touch on, and the Department of Health and Social Care is leading a piece of work to review how the tariff operates in order to ensure that appropriate and effective products are prescribed to patients. I acknowledge that it is currently difficult to know the position and to compare the differences between products on the drug tariff. We will work to make things as transparent as possible so that clinicians are far better informed and can provide the right product for each and every individual patient.

We will also continue to support the provision of a range of stoma products through part IX of the drug tariff to ensure equitable access for patients, an issue that my hon. Friend touched on. We do not want a postcode lottery. I want to make sure that patients, regardless of where in the country they live, have a voice in determining the product range available on the tariff, so that the interests of patients are at the heart of how the tariff operates.

[Janet Daby]

I thank the Minister for responding to the questions that have been asked. When the Government are looking to purchase products for people who have a stoma, will there be some consultation with patients so that they can help to make a decision as to the types of product that they feel will work for them?

[Will Quince]

I thank the hon. Lady for her intervention and for sharing her personal experience, which is a hugely valuable part of this debate. As I have said, a large number of products are already available on the NHS. She is absolutely right to say that we should engage with patients, because product selection should always be based on the clinical need of individual patients, not on manufacturing brand, pressure from particular companies or relationships with individual trusts. Yes, patients will be at the heart of the decision-making process, and rightly so. We are currently engaging on that exact point with a number of patient groups and with the industry, which is an important part of this as well. We will launch a targeted consultation over the summer, and I encourage patients, charities, organisations and industry to take part; I think they naturally will. We must ensure that the tariff continues to provide effective products to patients, wherever they live in the country.

My hon. Friend the Member for Clacton touched on patient care. I, too, recognise that the patient pathway for stoma care differs depending on the model of care that commissioners have adopted, hence my reference to a postcode lottery. Stoma service delivery models have been supported nationally through past NHS initiatives such as the QIPP, the national quality, innovation, productivity and prevention programme—it is a mouthful —which published recommendations on best practice for delivering stoma services. There are already really good examples across the country, such as in Rotherham, Nottingham and the midlands, of stoma services being delivered effectively based on those fundamental principles. It is important that we share that best practice and ensure that it is rolled out across all the country’s integrated care systems.