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Colostomy Irrigation

Volume 620: debated on Thursday 2 February 2017

Motion made and Question proposed, That this House do now adjourn.—(Heather Wheeler.)

When I secured this debate, I had not realised that it would be so close to World Cancer Day, which is on Saturday. Given the close connection between my subject and cancer, I could not have chosen a more appropriate date.

I begin by paying tribute to the colostomy nurses at the Royal Shrewsbury hospital, particularly Tracy Lunt, my personal stoma nurse, who helped me through a difficult time in my life and who encouraged me and introduced me to colostomy irrigation 14 years ago. I also thank colostomy nurse, Julie Powell, who telephoned me late one evening this week to help me to prepare after hearing that I had secured the debate. Colostomy nurses are special people, drawn to an unglamorous job that involves helping and encouraging people at the most difficult time in their lives. I imagine the subject of this debate is not often the subject of debate in Parliament. Madam Deputy Speaker, you have been an MP for longer than I have and may remember another occasion, but I do not. As far as I know, this may be the first time that this subject has appeared on the Order Paper.

I had best begin with some explanation of why the subject is of such importance to me and to many people—we do not know how many people because the subject is not talked about much. It is difficult to know how many people are irrigators, how many could be irrigators or how many would be if encouraged and helped by a sympathetic introduction process. At this point, I should introduce the background to my interest, which derives from bowel cancer. Colostomy irrigation has given me the freedom to live a full and active life. I will mention bowel cancer quite a lot because of its close connection with colostomy irrigation.

I am an ostomate—a person with a colostomy. I have owned my colostomy for almost 15 years, since undergoing an abdominoperineal resection to remove a cancerous tumour in 2002. I did not want a colostomy, but the alternative at the time was a far less attractive prospect. It was perhaps the most traumatic event in my life. I was uncertain about the future or, indeed, whether I even had a future at all. It certainly gave me a good understanding of how others feel in the same situation. I consider myself to have been extraordinarily lucky in that I made a full recovery.

One of the key reasons for my good luck and full recovery was that my cancerous colorectal tumour was diagnosed early in its development, before the disease had spread to my liver and elsewhere, when full recovery would be much less certain. Unsurprisingly, I have been a champion of early diagnosis ever since, and played a role in promoting bowel cancer screening programmes in Wales, when they were introduced a few years ago. The campaigning charity, Beating Bowel Cancer, is currently leading a campaign to reduce the age at which screening is offered from 60 to 50, as it is in Scotland. Instinctively, I support early screening, but realise that it serves no real purpose unless accompanied by the availability of sufficient endoscopy capacity.

Colorectal cancer, or bowel cancer, as it is commonly known, is one of the most common forms of cancer, with 110 new cases diagnosed every day. It is a traumatic shock for many when the tumour is first diagnosed, but the cancer is completely curable if caught early enough. It is possible to recover and do some fairly crazy things. For example, after recovery, I initiated the establishment of the Welsh parliamentary rugby team. In passing, I should say that, rather shamefully, our first game versus the Lords and Commons parliamentary team degenerated into a full-scale brawl, which received much coverage in the national media, and that is when I first met the hon. Member for Newcastle-under-Lyme (Paul Farrelly), a Labour MP. I went training with the late, great All Black Jonah Lomu, who had also suffered life-threatening illnesses, in preparation for that game. My friends, of course, think it was even crazier to seek election as a Member of Parliament.

The final introductory point I want to make concerns the title I have chosen for this debate. Until recently, I used the term “colonic irrigation”, like most people, but it is too often associated in the public mind with a lifestyle choice available in health and massage centres—a practice I have never really taken much interest in—so I now use the term “colostomy irrigation”, which has no such associations, and which accurately describes the process.

My speech has three main purposes. First, I want to explain what colostomy irrigation actually involves—what it is. Secondly, I want to explain why I decided to become an irrigator. Thirdly, I want to explain why I am seeking to raise the profile and awareness of colostomy irrigation, which I have been doing for 14 years. This Adjournment debate is the best platform to raise awareness that I have ever secured.

First, on the actual process, I am constantly surprised by how little is known about it. Even people suffering illnesses such as colitis or bowel cancer, who face the prospect of a permanent colostomy, seem to know little about the procedure. A colleague MP with a background in the clinical profession approached me today and said that not even all colostomy nurses know about it or encourage it. It seems not to be thought suitable for polite conversation; the human mind seems to go into “block” mode if the subject crops up.

However, the process is very simple. All it involves is hanging what is in effect a polythene bag, containing 1,000 to 1,500 ml of warm water, on some convenient hook—I usually use the bathroom curtain rail. One of the problems with smart modern hotels is that there are often no convenient hooks. Luckily, I am a farmer by background, so I am quite practical and naturally given to improvisation, and a coat hanger can be quite a handy hook. The water is then allowed to run by gravity, via a polythene tube, into that part of the lower bowel that my brilliant consultant surgeon left me with after surgery in 2002. Then, the water is allowed to just run out naturally; there really is not much more to it than that. The biggest downside is that the irrigator has to remain in the same location for about 45 minutes, but with complete freedom to read, write, telephone, prepare speeches for Adjournment debates, do sudoku, watch TV and a whole host of other things.

I want to emphasise that the process is not suitable for all ostomates. There can be insurmountable physical and, indeed, mental barriers that mean irrigation is just not possible. There are additional bits of equipment, such as commercially available water pumps, that replace simple gravity, but my experience is that they are not usually needed.

There is another point of interest here—certainly to me and, I think, to the Minister. I am told that while a very small percentage of ostomates in the UK irrigate—less than 5%—a very high percentage do so in the US. That is thought to be because all the equipment associated with wearing a colostomy bag is free in the UK but has to be paid for in the US—1,000 ml of water comes free.

Secondly, why do I irrigate myself? When I am asked, I give the same answer as when I am asked why I voted to leave in the EU referendum on 23 June—it could one day become a pub quiz question: what is the connection between the EU referendum and colostomy irrigation?—and that answer is to take back control. I wanted to take back control of my own body and not allow my colostomy to rule my life, which it could well have done. I did not want to have to wear a colostomy bag. I wanted to continue my public life without being concerned about an “active” colostomy at inconvenient times. I can irrigate when and where it is convenient for me to do so. I take the decisions, not my colostomy. I have—as, indeed, have all the other ostomates who irrigate—genuinely taken back control.

Thirdly, I turn to the main reason why I am raising the issue in this debate. Having experienced the extra freedom, self-confidence and control that colostomy irrigation gives me, I want to encourage other ostomates to think about doing the same. I must emphasise that it does not work for every ostomate, and, in any case, it is a matter of choice. It is not a question of what one should do; it depends on what one can do and what one wants to do. All I want to do is to suggest to ostomates who have never thought about irrigation to consider it. There will be a few uncertain days to begin with while the body familiarises itself with the process, but, with the guidance and encouragement of their stoma nurses, they too may find the freedom and control that colostomy irrigation brings.

The background to every colostomy is some form of clinical need, involving fear, trauma, great uncertainty, great need for relief from pain or even simply a desire to stay alive. World Cancer Day is on Saturday, and I am really grateful that I have had the chance to play a small part in making life better for at least some of those who are suffering from the implications of bowel cancer.

I congratulate my hon. Friend the Member for Montgomeryshire (Glyn Davies) on his excellent speech. I want to congratulate him on three more things: first, on securing the debate two days before World Cancer Day; secondly, on rightly saying that this is the first time that we have had a debate on the subject in this place—it is good that we are doing so—and, thirdly, on talking so passionately about his personal story in such a matter of fact way, if I may use that term. He spoke candidly and clearly about a subject that sometimes carries with it a stigma, or that is a taboo.

I have been looking after the whole area of cancer for the past six months. It strikes me that when people come into the system, we are as good as anywhere in the world at treating them and dealing with the illness. Unfortunately, one problem we have is that too many people come into our system too late. As a result, first or second-stage diagnosis is not possible and their outcomes are worse. One of the reasons for that is awareness—my hon. Friend used that word—and such debates can only increase awareness, so it is good that we have them.

My hon. Friend rightly said that uptake of colostomy irrigation is low. We think that some 5% of all those who could do so use the technique, rather than an alternative. I will talk a little about why that is and what we might be able to do about it. We think that there are some 6 million people in this country with bowel incontinence issues. Of course, the majority of them are nothing like as serious as the story we heard this afternoon. Similar stories may result from bowel cancer, and perhaps also from other types, such as cervical cancer. The choice of whether to use irrigation or another technique is a personal one. There are pros and cons to each, and I will try to set them out. Before I do, perhaps I should talk a little bit about what the Government need to do, and what they are doing, regarding the prevention, screening and treatment of bowel cancer. Obviously, if we were more successful at those, we would reduce the incidence of the disease and the need for the techniques that we have heard about.

The Government’s approach is informed by the cancer strategy, which came out about 18 months ago. It included 96 recommendations, all of which were accepted. It has been fully funded, and its implementation is now being led by Cally Palmer and Bruce Keogh from NHS England. We are finding that survival rates are increasing —we know that they are increasing quite sharply for most cancer types—but there is probably still a gap between us and the best in the EU. We are determined to close that gap, and although we are doing so, there is still work to do.

Of the parts of the cancer strategy that relate most to this debate, I want to talk about screening and about living with cancer and beyond—we have heard a story about doing so over the past 14 years. I also want to talk about one of the things that I think will be most important in improving cancer awareness and outcomes: the whole area of transparency.

One of my hon. Friend’s points was that there are staffing issues in this area, particularly in relation to bowel cancer. He said that we do not have enough endoscopists—that is true. The Government are committed to training a further 200 by 2020. Indeed, we have not been able to do some of the things on screening that we want because of those staff shortages, but we are addressing that problem very firmly.

The current screening test is an FOB, or faecal occult blood test, which is in the process of being replaced by the FIT—faecal immunochemical test—from 2018. A contractor/supplier has been appointed. The expectation is that that will lead to a sharp increase in the incidence of screening, the numbers of people coming forward for screening and the efficacy of that screening, which is very important.

In parallel, we have introduced a bowel scope screening process for males and females at or around their 55th birthday. This one-off test involves a full endoscopy, as a consequence of which polyps are removed. Whether or not they are benign, that process sharply reduces the incidence and risk of future bowel cancer, which is also very important. In the interests of full disclosure, let me say that I have also gone through the procedure. It was not anything like my hon. Friend’s, but I nevertheless went through it successfully. The process is a very important part of this fight.

The second aspect of the strategy is living with and beyond cancer. When I gave a presentation to the all-party group on ovarian cancer, I was struck that a lady whom I met afterwards said that she had received a terminal diagnosis for that type of cancer, but was not receiving support. That is obviously not where we want to be. The Government’s intention is that, by 2020, everybody who has a cancer diagnosis will have an individually designed package, with a cancer nurse specialist assigned to them. We are undertaking that programme in conjunction with Macmillan. It is important because cancer is increasingly curable, so we must increasingly put in place softer packages, as it were, to help people afterwards.

The final area I want to touch on is transparency. One of the frustrations is something that I often reflect on after talking to colleagues about the NHS and its effectiveness. Many of them are very concerned—almost certainly rightly—about the bricks and mortar of their NHS establishments, because they are very visible. Changes in configuration also concern them and their electors. I have fewer conversations with colleagues who are concerned about cancer outcomes in their areas. Those statistics are now published, so we know which are the best clinical commissioning groups, which are the worst and which are average.

One way in which we will increase the overall standard and quality of outcomes is through dialogue—with Members and the public more generally to act on the pressure points—about the performance of CCGs. I would argue that whether a Member’s CCG is doing one of the best or one of the worst jobs in the country might be more important to their community than whether the accident and emergency department is open for 24 or 18 hours. However, we do not always have such dialogues in this place.

On innovations in treatment for bowel cancer, keyhole surgery is making a big difference to outcomes. There are very clever people doing very clever things, which are leading to better outcomes and successful operations.

For many, however, a colostomy is needed. Broadly speaking, there is a choice of techniques: the irrigation technique that we have heard about this afternoon; or an appliance, which is typically a bag. There are pros and cons of each but, as my hon. Friend said, the appliance route is chosen 20 times more frequently than irrigation. This must be a personal choice, and NICE guidelines state that choices should be explained, but that is an extreme difference. As my hon. Friend said, the difference is far greater than that in the United States. It might well be that there is not enough awareness, so this debate has been one way to address that.

A recent paper by Sir Norman Williams, the senior clinical adviser to the Secretary of State for Health, set out the benefits of irrigation: there is no need for an appliance; the individual has control over timing; there is some evidence that fewer drugs are required, with a consequent increase in general wellbeing; and an individual is able to have a more varied diet. Those benefits suit many people. The technique might not be suitable for people with heart or kidney diseases or Crohn’s disease, and some might find that the 45 to 60-minute process is too onerous. In addition, I think I am right to say that the best results from this technique tend to come if the process is carried out at roughly the same time every day, which might not suit everybody.

The NICE guidelines are very clear: both techniques should be offered by the clinician or stoma nurse. The choice should be based on facts and personal preference. Whichever technique is selected by the patient, the nurse is responsible for teaching the process and supporting the patient until they are up and running, because it is extremely important to get it right.

I again congratulate my hon. Friend on securing the debate and raising awareness of the issue. He has talked frankly about a process that has been a massive help for many people in their day-to-day lives.

Question put and agreed to.

House adjourned.