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Surely there is no condition that is more humiliating than incontinence. Few afflictions make you more depressed, more isolated and less socially acceptable than not being in control of your bladder or bowels. Imagine being at a party and suddenly finding a pool beneath your chair—or the horror of a man who goes up to accept an award in his wheelchair, leaving a trail of diarrhoea behind him. If you cannot control your bladder and bowels, you are condemned to a life sentence of housebound isolation. It is impossible to lead a normal social life, let alone go out to work. Incontinence can place a far greater limitation on our life than not being able to walk, yet such is our embarrassment about the subject that it is rarely mentioned.

About 20 years ago, I was one of a group of 16 tetraplegic and paraplegic women who wrote a book called Able Lives: Women’s Experience of Paralysis. It was based on responses from 205 women with spinal cord injuries. We each wrote a chapter on one aspect

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of the condition and mine was incontinence. Reading it again for this debate was encouraging, in a way, because the range of provision has improved so much. The chapter set out the way in which incontinence could rule our lives. Katharine, one of the contributors, said,

The book also reminded me how little help was available then. Twenty years ago, if you wanted a discreet and efficient pad, you had to make your own, which meant spending countless hours wrapping cotton wool and cellulose wadding into squares of gauze. Innovation and investment by the market has transformed the products and appliances available—and that is what is so worrying about the Department of Health proposals, which threaten to return us to the embarrassing uncertainty of relying on products that do not properly meet our needs.

The clear message from the book Able Lives was that what worked for one person did not work for another. The struggles that each woman went through in finding a method and products that worked for her meant that, once a satisfactory solution was found, it was a devastating prospect if for any reason that had to change. It is this hard-won security that is being threatened by the drug tariff proposals.

The Department of Health Commercial Directorate has been conducting this review over two years with five consultations, yet there remain major concerns about the latest range of proposals and the negative effect that they will have if implemented. There has been a shameful lack of user involvement in conducting this review, as the three user organisations—the Spinal Injuries Association, the Urostomy Association and Incontact—pointed out in the letter that they sent to the Minister last July. They said that,

They continued:

They also said:

As we have heard, there are many concerns. The Urology Trade Association warns that the size of the proposed cuts will make many products economically unviable to produce and will stifle innovation. People who have used the same trusted product for decades are likely to find that it has gone out of production and they will be thrown back to the early days of utter insecurity while they try to find a product that suits them. Again their continence will dominate 99.9 per cent of their time. What hope is there of maintaining your social life, let alone your employment, in the mean time?

There are further major concerns with the way in which goods have been classified within the proposed category-based system, as we heard. Products have been misclassified, with the result that high-quality, specialist appliances have been classified alongside inferior items at a low price. That could lead to serious medical complications for some users, let alone humiliating

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embarrassment. For instance, superficially similar urine bags may be more or less vulnerable to splitting depending on the materials that are used in their construction.

User groups such as the Spinal Injuries Association have been assiduous in providing feedback on the Commercial Directorate’s proposals, yet the proposals remain full of errors. For example, latex and latex-free products are confused, which could have devastating and potentially life-threatening consequences for anyone with an allergy to latex.

One of the most worrying of the industry’s concerns about these proposals is its warning about their effect on the help and support that will be available. The Department of Health has proposed a capped and banded payment structure for remunerating service provision. The industry warns that suppliers will no longer be able to provide those services that are essential in giving users reassurance and peace of mind in managing their condition, such as the telephone helplines and nurse advisory services. Other services that are threatened are those that help to reduce your frustration, to maintain your dignity and to save invaluable time, such as prescription collection, the wonderful discreet, fast and efficient home delivery services and provision of all the necessary complementary items such as wipes and disposal bags. These services enable you to deal with your incontinence as just an inconvenient but minor facet of your life. Take them away and incontinence once again becomes a major issue of organisation and management that dominates everything that you do.

Will my noble friend tell the House whether any work has been done to assess the impact that these proposals will have on other aspects of government policy? If these proposals are implemented in their present state, as user groups fear, patient choice, which is rightly at the heart of government policy, will obviously be dramatically reduced. What about the impact on employment policy and the drive to reduce the numbers of disabled people dependent on benefit?

I have concentrated on the experience of spinal cord injured people whose ability to find employment is certainly dictated by whether they can manage their continence. You do not see the people who are not managing, because they cannot leave their homes. The difference between two catheters may seem immaterial to people who do not use them, but if one of them leaks and the other does not, that changes your whole life.

Finally, what assessment has been made of the impact on the health service, with the inevitable increase in repeated medical consultations, the resulting health complications and hospital admissions? I hope that my noble friend the Minister will do all that she can to ensure that these concerns are properly understood and comprehensively addressed, and bring some hope after the misery of this interminable, unsatisfactory review.

5.45 pm

Lord Addington: My Lords, the noble Earl, Lord Howe, deserves an unusually large pat on the back for bringing this subject forward. It is one of those unpopular, unsexy subjects that has to be addressed.



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As I was thinking about what to say, I found that most of what I thought of had already been mentioned. The noble Baroness, Lady Royall, and I have a little game in which we talk about the follow-on costs of government spending. They were mentioned by everyone involved in the debate today. The noble Baroness, Lady Wilkins, gave the best example when she summed up her remarks by saying how what we were doing tied in with the rest of government policy. The Government are spending a great deal of money on welfare to work interviews and so forth for disabled people, which was in the last Welfare Bill. If you remove a product that works, that means people are not mobile. Are you not then counteracting another part of government policy? I will leave that point there because I have made it dozens of times.

The last time we spoke about this I mentioned kicking through the Chinese walls in Westminster to try to get the Government to realise what was happening. That still applies. To concentrate purely on the Department of Health, has the department assessed what it would cost to change a product that is satisfactory at the moment to something does not work in 10 per cent of cases? That is a reasonable question.

If the department finds itself having to provide other services, such as emergency services and admissions to hospital, what would that do to the pricing structure? The general consensus from the briefing that I have received—and people have been on their toes—seems to be that the system is delivering happy customers, patients, clients; call them what you like. There seems to be a degree of satisfaction with the current system. The phrase, “If it ain't broke don't fix it” comes to mind.

Whatever criticisms have been made of the Conservative Benches, being wasteful of public money as a matter of principle is not one that we can readily throw at them—certainly not in theory. One’s normal allies in cost-cutting are saying, “Wait a minute, there may be a problem about the implementation of this. It may stop the innovation. Patients who are stable and able to carry on with the rest of their lives will make fewer demands”. Has that been factored in? Is that on the balance sheet and, if so, where?

If the Government can answer these questions and address some of these concerns most of us will say “fine”. If some of the other services that are provided—the follow-on costs in this process—can be factored in, the answer would probably still be “fine”. How will the Government address these concerns? Please let us know, because I have very seldom received, for any debate, briefing that says, “Please don't touch it: it's working reasonably well”.

I advise the Government to tread very carefully here because they may incur greater costs further down the line and affect people’s lives in a negative way, which would counteract many of their other areas of activity. Can we please be assured that those considerations have been factored in? If they have not, a well intentioned step may counteract good activity in other areas. Can the Government make sure that they address these fears up front in future? At the very least they would save time and energy in Parliament by

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making sure that parliamentarians—if not people in the outside world—know what is coming. Either the Government’s policy or their presentation is wrong. Can they please tell us exactly what is the thinking behind this measure and how they factored in the considerations to which I referred, if they did so? If they did not, I advise them to back off and think again.

5.50 pm

Baroness Royall of Blaisdon: My Lords, I am grateful to the noble Earl, Lord Howe, for enabling us to debate some crucial issues today. Until very recently, and through gross ignorance, I was not aware of the vital importance of these matters to thousands of people—the individuals who use stoma and urology products but also, as my noble friend Lady Pitkeathley so eloquently pointed out, their carers and their families. I pay tribute to the noble Lord, Lord Roberts of Conwy, and to my noble friend Lady Wilkins for the honesty with which they dealt with this rather difficult subject today. That certainly helps us, and I hope helps the Government, to appreciate the problems that have to be overcome. Those of us who do not suffer these problems do not realise how much we have to be thankful for.

I have spoken to colleagues in this House who use stoma and incontinence products every day, and to those who have used them for months or perhaps years. No matter how long or short the period of use, people require products that suit their needs, fit, do not cause skin problems and are user friendly. They want a choice of products and follow-up care.

I reassure noble Lords that no decisions will be made as an outcome of the Part IX review that compromise the quality of care. Part IX is complex. It consists of more than 5,000 items and there is no transparency between what is reimbursed to dispensing appliance contractors for these items and the moneys that they receive for service provision. Dispensing appliance contractors and pharmacists also have different terms of service. The review seeks to unbundle these costs, define services and ensure that the NHS, and taxpayers, are receiving value for money from the £240 million that is spent in this area. However, I, of course, acknowledge that the review has caused a great deal of concern not only among users of the appliances but also among dispensing appliance contractors and those who manufacture these products. The noble Lord, Lord Addington, said, if it ain’t broke don’t fix it. That is an attractive idea but I understand that Part IX has not been reviewed for 20 years and I think that it is beholden on government to look into these things from time to time.

Bladder and bowel problems and incontinence are common problems, particularly among older people, people with disabilities and many children. They are of a very sensitive nature and impact significantly on a person’s quality of life. The department estimates that about 450,000 individuals use stoma and urology appliances. Some will need them intermittently but the majority will be dependent on them. Quality of life is of primary importance to these patients. All want to

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be as independent as possible and to contribute fully to the overall well-being of the economy. As the noble Earl said, these appliances ensure that patients can lead regular lives and reduce demand on primary and community care, and as my noble friends said, that makes good economic sense to individuals and families.

Noble Lords are, of course, aware that my noble friend Lord Darzi is leading a wide-ranging review of the NHS to ensure that a properly resourced NHS is clinically led, patient-centred and locally accountable. His vision for the NHS is that it should be fair, effective, personalised and safe. The overarching aims of the Part IX review are fully consistent with that, and every effort has been made throughout the review to engage with patient groups to reassure them and to listen to their concerns.

My noble friend Lady Wilkins expressed concern that there has not been adequate patient and stakeholder engagement. Such engagement is vital and there can never be enough, but I assure noble Lords that officials have met representatives from the Ileostomy and Internal Pouch Support Group, the Spinal Injuries Association, InContact and the urology association. My right honourable friend Dawn Primarolo, the Minister for Health, has agreed to meet with a consortium of patient organisations representing users of urology appliances. Officials have also met representatives from the NHS, particularly those specialised in the area of stoma and incontinence care, such as the Royal College of Nurses and the World Council of Enterostomal Therapists. They have also met nurses who specialise in childhood incontinence, as such patients have very special needs. The noble Earl cited the specific problems relating to paraplegics and children and the advances that have been made so that their lives can have real quality. He is right that this review must not only be about value for money but about valued lives for individuals. I will certainly ask the department to look into the cases that he raised. Officials have also met trade bodies representing the dispensing community and manufacturers.

Given our understanding of patient concerns, the department has sought to reassure patients and industry that the maintenance of their care is a key aim of the review. We want to ensure that, no matter where in England a user of stoma or incontinence appliances lives, they are all offered the same standards of service. Such services include home delivery and home visits made by specialist nurses employed directly by dispensing appliance contractors—DACs—and pharmacists. While we recognise the important contribution that these individuals make to patient care, we believe that their role is to complement the work of NHS specialist nurses. As such, we need to ensure that they are suitably qualified to deal directly with patients.

Currently, the invaluable services provided by DACs and pharmacists are not service requirements, so they are not provided by all and to all, and, where they are provided, it is not necessarily to the same standard. Our proposals seek to embed in legislation agreed standards of service delivery and ensure fair remuneration, thus creating a level playing field and a

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wider choice for patients. Standards of service must include proper information about the product and advice thereafter.

However, dispensing appliance contractors have expressed concerns that there is not enough money currently in the system to cover the services that we propose that both they and pharmacists should provide. They are concerned that services could be at risk. Such views are being taken very seriously, given our aim to maintain and, where appropriate, improve patient care. Given the role of specialist nurses employed directly by providers to complement the work of NHS specialist nurses, we will discuss that with interested parties when we meet shortly.

Noble Lords have referred to the proposed classification of items that the department put forward for comment. Our aim was to make it easier for prescribers to identify the appropriate product to match a patient’s medical need. I fully understand that each patient is an individual with individual needs. In order to arrive at a proposed classification, officials worked with specialist healthcare professionals. The overriding criterion was not one of price, but was to ensure that items were classified according to their ability to meet similar medical needs. I note the concerns expressed by the noble Earl. The review is certainly not intended to stifle innovation and new technologies; quite the opposite. I will take up those important issues with the department.

A key aim of the review is to ensure that the NHS is receiving value for money; hence the proposed reduction in reimbursement for items. Some manufacturers have told the department that the proposed reductions in reimbursement for items could lead to a large number of items being discontinued. Items are routinely de-listed by manufacturers from Part IX; in fact, 379 items and 121 ranges were deleted in 2007. I understand that patients are anxious to ensure that their preferred products are maintained on the list and that they have real choice. We are therefore in discussion with industry to identify a level of adjustment that is affordable to industry.



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The department acknowledges that the Part IX review in respect of stoma and incontinence appliances seems to have gone on for a long time. This is because Part IX is a complex sector. Given the highly sensitive and personal nature of the conditions for which these products are used, we needed to take time to arrive at new arrangements that are right not only for the NHS and providers but, most importantly, for patients.

The last consultation closed on 28 December and officials are analysing the responses. However, my right honourable friend Dawn Primarolo, the Minister for Health, has agreed that officials should sit down with dispensing contractors and manufacturers to discuss the best ways in which to conclude the review. These meetings have begun and are due to conclude by the end of February. Once the discussions have concluded, the department will publish a full impact assessment and interested parties will be given an opportunity to comment.

I note all the concerns that have been expressed about the assessment and the desire that it should cover issues such as the impact on other government departments and on employment, for example. I do not know what the assessment has covered, but I will certainly look into this and come back to noble Lords with further information.

In conclusion, we welcome this short debate. I regret that it has been so short. The Government recognise the importance of the issues raised and truly are committed to ensuring that patient care is not compromised because of the review. I hope that this debate will assist not only in reassuring patients, but will encourage others to speak out about these issues, which are intensely personal, but about which there should be no embarrassment. In the mean time, I will ensure that the people undertaking the review are given a copy of the report in Hansard of this debate and I will ask them to take into account all of the points raised. This is a complex issue, but essentially it is about dignity and quality of life for patients as well as about value for money for taxpayers.


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