Future of Stoma Care

Giles Watling 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?

--- Later in debate ---

[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.

[Giles Watling]

In the rush for equity, which I am asking for so that everybody has equal access to the best possible care, we must not lose sight of the fact that each individual is individual and requires specialist care. There cannot be a one-size-fits-all answer.

[Will Quince]

I totally agree. It has to be based on clinical need and on the choice of the individual patient. However, when we look at the examples of the areas that do this really well and get those pathways so right, we can see that patients are followed up with regularly, receive annual reviews and have a wide range and choice of products. As my hon. Friend rightly points out, it is based on independent clinical advice on the best product for their need that they know best suits them as a patient. That is the exemplar, if you like—the model that we want to see across the country.

My hon. Friend talked about medtech and research and development investment in life sciences, a passion of mine. Colleagues may previously have heard me speaking about the Department’s work to ensure that the UK has a flourishing life sciences sector with a focus on innovation. I want to make sure that we always bring the best possible medtech, medicines and therapies to UK patients as quickly as possible.

The Medicines and Healthcare products Regulatory Agency is currently updating the medical devices regulatory regime, which is designed to support innovation and improve patient access to innovative medical devices by improving the regulation of novel and growing areas such as artificial intelligence, which we know will play such a big role. The medtech strategy is a meaty document, but I recommend that hon. Members look at it: it sets out a clear ambition to provide a streamlined pathway from pre-registration products through, ultimately, to adoption within the NHS.

My hon. Friend is right to say that we must work with industry to make sure that the UK is its launch platform or country of choice, because we want UK patients to be the very first to get access to the most cutting-edge and innovative medtech. We work closely with industry and across the system to implement actions to address the barriers to adoption in the UK. That predominantly involves removing duplicative evaluations to ensure that procurement processes are as streamlined as possible for companies, thus making the UK a best-in-class destination.

The medtech community is a key focus area for implementation of the strategy. As part of my Department’s engagement with industry and patient groups on its upcoming consultation on part IX of the drug tariff, officials have planned various roundtables and engagement points with stakeholders. That engagement will include industry and patients, which speaks to the point that the hon. Member for Lewisham East (Janet Daby) made about the importance of putting the patient voice at the heart of everything we do. As my hon. Friend the Member for Clacton knows, the Government’s medtech strategy sets out how we will ensure that the health and social care system can reliably access safe, effective and innovative medical devices. I am pleased to assure my hon. Friend that it is absolutely a priority for me, for the Department and for the Government.

I thank my hon. Friend the Member for Clacton and the hon. Member for Lewisham East once again for bringing this issue to the Government’s attention and for flagging particular areas. I look forward to continuing to work with charities and hon. Members across the House on the matter. Finally, on my hon. Friend’s most significant ask, I would be absolutely delighted to meet him, charities and Coloplast to take this forward.

Question put and agreed to.