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Volume 465: debated on Wednesday 24 October 2007

I want to use this debate to raise awareness of incontinence, which MPs, Ministers and the public at large still find embarrassing and difficult to talk about. Well, we are going to talk about it today, not least because everyone needs to get the message that it is not an inevitable consequence of ageing and that, in most cases, it can be treated and cured, not just managed. I also have some questions for the Minister. First, will he ask his colleague who has responsibility for this area to meet the small group of experts, individuals and others who helped me to pull this debate together at such short notice, so that we can do more work together on finding a way forward?

Millions of people in the UK suffer from incontinence, and one in three adults will suffer from it at some point in their lives. In the average primary care trust, 5,600 people have urinary incontinence and 900 have faecal incontinence. Will the Minister let me know the latest statistics? Absorbent products such as pads cost the average PCT £750,000 a year, and the cost to NHS purchasers alone is about £80 million. I have written separately to the Minister about the current review of costs for incontinence aids, so I shall not go into that now. However, the biggest cost is that a failure to deal promptly and humanely with incontinence problems in older people can cause embarrassment and lead rapidly to humiliation, the loss of morale, hopelessness and the loss of the will to live, all of which are avoidable.

Incontinence is a personal and private condition, and studies reveal that it can take the average woman five years to go to her general practitioner for help. One health professional, Ruth Wint, told me:

“I saw women in my continence clinics who were so embarrassed that they hadn’t even discussed it with their partners or husbands”.

Immobility and the constant daily washing of soiled clothes, bedding and oneself becomes a depressing routine.

What are the bigger policy results of continence problems? They delay hospital discharge and might be a reason for admission to hospital or long-term care. Incontinence was a precipitating cause of nursing home admission for 89 per cent. of elderly people who received a substantial amount of care at home, and it is second only to dementia as the reason why older people enter residential care. It is a major factor in falls and has an impact on other long-term conditions. Informal carers are essential to keep people at home, but incontinence, especially faecal incontinence, might be the factor that prevents them from continuing as carers. Such cases place another burden on the taxpayer and NHS residential provision.

I know that the Minister cares deeply and personally about this issue, and I ask him to proclaim that incontinence is both a priority and a clinical governance issue, and that care benchmarks on what patients should expect from services regarding their incontinence are essential. This is a key health issue, but it is also one of those quiet and unknown health issues that will get a higher profile as time goes by and demographics change. There is a policy framework in place, but practicalities on the ground mean that it often falls short.

The Royal College of Physicians report “National Audit of Continence Care for Older People”, which was published in November 2006, produced a damming verdict that conforms to many of the individual cases that have been brought to my attention in preparing for the debate. The royal college found:

“Only 30 per cent. of services have a person with leadership responsibility for continence…Where a continence problem is identified, assessment or management of that problem is still not guaranteed…Whilst most of the structures required to provide continence services exist, the provision of true integrated services is incomplete…Documentation of continence assessment and management is inadequate…Management consists predominantly of containment rather than active treatment of the problem.”

Does the Minister accept the accuracy of those findings? What can Parliament and the Government do to put some of those things right?

I want to touch on several key areas, the first of which is public understanding. The antidote to people suffering in silence and the myth that incontinence is inevitable is public knowledge. That can be facilitated in a small way by debates such as this and, far more importantly, by Government programmes and the use of television, radio, leaflets and posters. More than 30 years ago, Kimberly-Clark broke the taboo and advertised Depend products on television in America. In the UK, we are still very shy about talking about this issue.

Not many people know that the immediate treatment for urinary and faecal incontinence is usually a disposable pad held in place by elasticated net pants. The construction of the pad is similar to that of a disposable nappy. If either of those items is wrong, the result is urinary and/or faecal leakage—and misery. A key part of public understanding is access to advice. Family members are often worried, but do not know where to turn, especially regarding older relatives who live alone. An effective partnership between health and adult services is essential, especially with regard to a good, confidential delivery and collection service for pads, and domiciliary help with household cleaning and hygiene, which is often a problem for confused or older people, or those who live alone.

Easy referral pathways to confirm a diagnosis and to rule out more serious conditions are needed, and self-referral systems need to be implemented to allow suffers to access specialised clinics without having to be referred by their GPs. Good access to confidential advice is also needed, not necessarily via a GP, but using pharmacies, NHS Direct or primary care staff in the community.

The second key issue that I want to raise is whether incontinence should be managed or treated. A good assessment should mean that clients are provided with the product that is most appropriate to their need in sufficient quantity—about four or five pads a day—but in areas where budgets are tight, the number provided is restricted and the quality of care is compromised. Effective assessment can often lead to a cure or an improvement in symptoms, but, sadly, those avenues are not always explored and the patient is parked and remains unnecessarily incontinent for the rest of their life. Permanently managing incontinence with pads is much more expensive than treating the problem and working towards a cure.

Proactive treatments such as pelvic floor exercises and bladder retraining should be used much more widely. There is a lack of awareness among the public, families and, indeed, some health professionals, that the condition can be treated and not just contained. According to a 1998 community nurse survey, 27 per cent. of people with incontinence were told by their GP that the condition was not serious enough for treatment and 26 per cent. were told to learn to live with it. However, 70 per cent. of people with continence problems will show a good response to treatment, which leaves only 30 per cent. with an intractable problem that they would have the right to have treated effectively so that they could be clean and dry.

The third key area is managerial accountability, starting with the priority that is given to incontinence. Many professionals to whom I have spoken have talked about managerial apathy. As incontinence is a quality-of-life issue rather than a life-threatening or acute medical condition, there is a tendency for it to be overlooked in preference to targets such as the reduction of waiting times. It seems that managers’ main concern is the cost of the pad budget, yet investment in the continence service would allow for good assessment and appropriate treatment and management that could not only improve a client’s quality of life, but massively reduce the cost of continence provision. Given the massive expansion of health budgets over past decade, surely PCTs can set up more continence clinics with more specialist nurses with knowledge of the problems. In Mansfield, in my shire, only two continence advisers cover the huge area of north Nottinghamshire. Is the Minister satisfied that continence services receive the priority that they deserve at PCT level?

The second managerial issue, which is probably even more important, is co-ordination and accountability. The interaction between the NHS and social services in this area is often incomprehensible to sufferers and their families, and I am told that it is often not understandable to managers and front-line staff. Examples of duplication or an absence of service have been abundant in my research for this debate.

Separate social services and health assessments often centre on other problems, or involve a multiplicity of agencies and sub-groups within the NHS and social services, none of which take direct responsibility for the well-being of the person. The inconsistent organisation of specialist services and line management, with variable priorities and progress in service developments, has been identified in academic studies, not least by Thomas in 2004. That was referred to over and again by sufferers and families during the few days that I had to prepare for this debate. Will the Minister look again at the working of the NHS-social services interface, particularly as it affects elderly people and such people who are incontinence sufferers?

The fourth issue is staff training. Several studies have criticised some staff as being uninterested in the problem or believing that it is beneath them. In Nottingham city, a programme of continence training for all social care staff—those in home care, residential care and so on—has raised staff awareness, understanding and competence when dealing with people who may be incontinent. Such widespread training for social care staff might be unique. Education for higher-level continence specialists is provided at diploma and degree level to ensure that specialist nurses have up-to-date knowledge. Does the Minister believe that there should be a properly funded national strategy for training for both social services and health staff?

Lack of time means that I cannot go into all the details, and I shall write to the Minister about other groups. It is not just the elderly who are affected. Other groups include pre-schoolers, school children, children with special needs, and older people with mental illness. I apologise to those many people. I have had many debates such as this and I have never had such a response from the public and people in the professions to bring cases to my attention.

My hon. Friend is well aware that there is a review of the pricing of urology and stoma products—it is the fourth review. Some of the proposals arising from that review involve major changes, including making dramatic reductions in costs. Does he agree that they must be examined carefully before they are implemented?

I have been in contact with many people who supply and use products, and the issue is of great concern. I have deliberately referred to it only in terms of writing to the Minister, because I do not want that to be the subject of today’s debate. It is a more general debate, and I am sure that my hon. Friend—he takes a close interest in these matters—will work with me and visit our colleague who has ministerial responsibility for the matter, and perhaps take a small delegation of people to raise those specific issues, so that we can maintain focus on the general issues.

I said that we could do far better for the 70 per cent. of people who could be cured, but we must also do better for the 30 per cent. whose condition needs management. Many thousands of patients suffer total loss of bladder and/or bowel control as a result of neurological injuries or diseases, such as spinal cord injuries in the young, multiple sclerosis in the middle-aged, and strokes or dementia in the elderly. Many of those people are extremely vulnerable and debilitated, and require the most time-consuming nursing care. For many of them, a catheter and bag might provide the only universal urine collection system. That is considered to be a last resort by health professionals, but there is no acceptable alternative. The system is associated with at least a 40 per cent. risk of complications, some of which may be life threatening. At some point, 100 per cent. of patients develop a urinary tract infection, and up to 50 per cent. of catheters block recurrently at any time of day or night as a result of encrustation. That leads to a heavy burden of work on district nursing services.

Some patients develop bladder stones. Others continue to leak urine, thus remaining incontinent and at risk of bed sores. Some might develop fatal septicaemia while others might develop a severe form of bladder cancer. That is the ugly, morbid aspect of incontinence, which is rarely mentioned but is so fundamental to the care of many older and seriously disabled people.

The urinary catheter in routine use today was introduced in 1937 and the basic design has not changed. Surely, in the 21st century in a society with an increasing number of elderly and disabled people, modern science and technology should make a greater contribution to researching and developing a more efficient, user-friendly urine collection system for palliative care. Does the Minister accept that his Department should have a 10-year plan for research into the development of techniques to alleviate chronic incontinence?

To a layman in this area, it seems that the work programme of policy should follow on from the Royal College of Physicians’ report to raise public awareness and break the taboos on incontinence; to keep people talking; to make treatment the first port of call, rather than management or containment of incontinence; to ensure that we treat in the 70 per cent. of cases when that is possible; to have clear local leadership and clarity of case management in specific personal treatment, so that everyone knows who is responsible for the whole treatment in any case; to have front-line staff trained and proud of their work with this group of people; and, finally, to research updated treatments. Will the Minister consider appointing a named person, to be responsible to him, to make that happen?

The issue is serious, and one that people do not like talking about because it causes embarrassment, but I know that the Minister cares deeply about the issue. I hope that his reply will help millions of people who can and should benefit from better and earlier intervention. Incontinence is a plague that affects one in three adults, particularly in later life. I hope that the Government will tackle the problem effectively.

I congratulate my hon. Friend the Member for Nottingham, North (Mr. Allen) on securing this Adjournment debate, and I pay tribute to him for bringing our attention to an issue that affects so many people in our country.

We in Parliament should be debating and highlighting the very real everyday issues that make a difference to the quality of people’s lives. Let me also say that my hon. Friend has done a tremendous job of providing leadership in his own city on promoting regeneration and tackling social exclusion and social inequality.

My job today is not simply to say that the system is not working or that it fails everybody, because that would not be the case. My job is to explain many of the things that the Government have done, specifically nationally, to ensure that incontinence is taken far more seriously in local health economies and that people get the sensitive and professional treatment and support that they deserve.

Having said that, I begin by recognising that the system is simply not working in the way that it should in too many parts of the country. Too many patients and, indeed, family members describe a system that is neither sensitive nor effective. We therefore have a responsibility to work with my hon. Friend and my hon. Friend the Member for Stroud (Mr. Drew), who raised an important issue, to see whether we can ensure that the aspirations, ambitions and policies that are set out nationally become a reality in every local community, and identify the individuals and organisations that should take leadership and be held to account for the relevant services. Together, we must seek over time to ensure that the vast majority of people receive the service, sensitivity and support that they deserve.

Following this debate, I will ensure that the Under-Secretary of State for Health, my hon. Friend the Member for Brentford and Isleworth (Ann Keen), meets my hon. Friends and a group of interested and experienced professionals to talk about the practical measures that we can take to make a real difference. We need to place that on the record. We would then need to agree a programme of work that we could monitor not only at ministerial level but through continued debates in the House.

Let me deal now with some of the points that my hon. Friend the Member for Nottingham, North has made. I will not necessarily be able to deal with them all, given the time available, but I will do my best. As regards the cost to the NHS of absorbent continence products, we do not collect information about the number of continence pads and pants supplied by the NHS or about NHS expenditure on such items. However, research has shown that dealing with incontinence costs the NHS about £425 million a year and that the UK market for pads and appliances to contain incontinence is estimated at £143 million.

In 2000, the Department of Health published “Good practice in continence services”, which outlines the Government’s vision for integrated continence services. The guidance set out a model of good practice to help achieve responsive, equitable services, with an emphasis on primary care teams being proactive in identifying all people with incontinence and offering initial investigations and treatment. Early intervention is therefore important.

The guidance called for cohesive and comprehensive continence services that encompass urinary and faecal incontinence in all age groups—from children to older people—in hospital, at home and in care. It described how services should be based on agreed evidence-based policies, procedures and guidelines—that would be good—with group audit and review. Furthermore, it emphasised the importance of identifying and treating the underlying problem, rather than managing the incontinence with pads—the point that my hon. Friend reiterated throughout his contribution.

The achievement of the good practice envisaged in the guidance is being supported by the NHS essence of care scheme. My hon. Friend referred to benchmarking, and the scheme is a benchmarking tool designed to help practitioners take a patient-focused, structured approach to sharing and comparing practice to improve the quality of patient care. The relevant benchmarks reflect those aspects of care that are crucial to the experience of patients and carers and deal with the things that really matter to them, including continence and bladder and bowel care. Nationally, NHS organisations have embraced the principles of the essence of care scheme as fundamental to the implementation and delivery of good clinical governance. As my hon. Friend suggested, the application of benchmarks to practice can result in a real difference to the quality of care.

The Department also commissioned the National Institute for Health and Clinical Excellence to develop specific guidance on this issue. NICE has published clinical guidelines on the care and management of faecal incontinence in adults, although it did so only in June, and there is always a time lag before such things take effect. Furthermore, NICE has published guidance on the management of urinary incontinence in women only this month. That indicates that the Government take the issue seriously, but the time lag between the introduction and delivery of national policy is always significant, which is why we need to engage with my hon. Friend and others to accelerate progress.

In 2001, the Government published the national service framework for older people, which is the first comprehensive strategy to ensure fair, high-quality, integrated health and social care services for older people. It is a 10-year programme of action, which links services to support independence and promote good health. It highlights the importance of services for key conditions, including incontinence—it is an important lever in that respect. It also highlights the need for culture change so that all older people and their carers are treated equitably and with the dignity and respect that they deserve.

Standard two stresses the importance of person-centred care—that is very technical language, but it means seeing each older person as an individual and asking professionals to shape assessments of needs and services around that person’s views and wishes, not the other way round. The development of integrated continence services was a key objective of standard two, with all local health and social care systems expected to have established integrated continence services by April 2004. That illustrates that we still have a long way to go.

My hon. Friend raised the issue of true integration between different agencies. The Government increasingly talk about personalisation, which means that individuals should not be treated as part of a system of mass production and that the system must focus interventions on the needs of every individual and, where there is a carer, every family. That is a major challenge for the health and social care system, and it has been identified by my colleague Lord Darzi, the Secretary of State and, indeed, the Prime Minister. Personalisation must be the next stage on our way to achieving world-class public services.

Some have made a case for targets, but we cannot have targets for everything, as my hon. Friend knows. He has been a great proponent of local devolution—of pushing power down to the most local level—to re-empower professionals and managers on the front line. We must therefore get the balance right and put in place systems and pressures that will hold people to account and support them in providing the necessary services, but that does not necessarily mean that we can impose things in a top-down way. We need policies and national leadership to enable people on the front line to take the issue far more seriously and to ensure that the services for which managers or practitioners are responsible are responsive and sensitive to individuals’ needs. As my hon. Friend said, services must seek to treat incontinence, not contain it.

I have been leading a big campaign to put respect for dignity at the heart of all care services for older people—in hospital wards, nursing homes, home care services and primary care services. We must position the issue before us right at the heart of the non-negotiable need to treat older people with dignity—in that regard, no issue is more central. We all know of the embarrassment that people feel—as my hon. Friend said, they will not disclose their problem for a long time because it is embarrassing and has a stigma attached to it. That embarrassment is only reinforced when they seek support and services and have the indignity perpetuated, rather than receiving the sensitive and expert response that they need and deserve.

I am also happy to consider including the issue before us in my dignity campaign. We now have 1,200 dignity champions up and down the country, who champion the needs of older people in different care settings. It might be useful for me to go away and look at whether we can do more about continence. We are doing a lot on nutrition for older people and we will announce plans on that next week.

My hon. Friend has raised a crucial issue and he has my cast-iron guarantee that the Government will take the issue seriously and work with him and professionals to improve services for people who experience this incredibly difficult condition.

Sitting suspended until half-past Two o’clock.