Health: Drug Tariff Part IX

Part of the debate – in the House of Lords at 5:36 pm on 24 January 2008.

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Photo of Baroness Wilkins Baroness Wilkins Labour 5:36, 24 January 2008

My Lords, I am extremely grateful to the noble Earl, Lord Howe, for initiating this important debate and for his excellent opening speech. I declare an interest: along with nearly everyone with a spinal cord injury, I have had to use continence products—in my case for 40 years, after I broke my neck while a student at university. Sadly, this debate was announced at short notice, so not as many people were available to speak as would have liked to. There is deep, widespread concern about what is proposed. I hope the Minister will do all she can to ensure that these concerns are addressed.

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 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,

"it dominates 99.9 per cent of my time".

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,

"the Directorate is continuing to ignore the needs and views of patient users of continence/urology appliances".

They continued:

"Healthcare professional and patient use of products is different and education is a two way process".

They also said:

"Most long term patients rarely see a specialist nurse and therefore the latter are often not fully aware of the need for some products. Most professionals only know of a limited number of appliances/catheters".

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 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.