HC Deb 30 January 2004 vol 417 cc504-10

Motion made, and Question proposed, That this House do now adjourn.—[Ms Prentice.]

2.31 pm
Dr. Jenny Tonge (Richmond Park) (LD)

This may seem a strange topic on which to end the week, but I assure you, Madam Deputy Speaker, that it is important.

When I was preparing for the children's Bill in my former life, I read the Victoria Climbié inquiry report—Victoria Climbié was born in the Ivory Coast in 1991 and died in this country in 1998. It is harrowing reading, as I am sure the Minister knows. I was approached by a voluntary organisation called ERIC—the Enuresis Resource and Information Centre—which was concerned about the Victoria Climbié report, as I was, and wanted me to raise in this House the question of incontinence services. As I had some experience of the matter when I was in medical practice, I thought it appropriate to do so.

In the UK, about 750,000 children over the age of five wet or soil themselves. It causes great distress to children and parents alike, yet some children simply cannot grow out of it. They need proper, sympathetic treatment to avoid child abuse, in some cases, and bullying at school. Bedwetting—or nocturnal enuresis, to use the medical term—affects half a million children between five and 16 years old—yes, as old as 16. Daytime wetting affects a smaller number—120,000 children—and more than 100,000 children in the same age group, five to 16, experience soiling problems. The cause is often physical. It can be caused by a lack of control between the bladder and the brain—an overactive bladder, as it is commonly described—or can be due to a lack of a hormone called vasopressin, which suppresses urine production at night. It can also be due to serious or minor kidney and bladder disease, which is often undiagnosed. Soiling is often due to constipation, which is itself caused by poor diet. We have heard a lot about poor diets in recent weeks, and low fluid intake in many children is an increasing worry.

Children who have had disturbing events in their lives, such as bereavements, removal from home or school trauma can also develop these problems, and any further trauma or punishment makes matters worse, so it becomes a vicious circle. It causes acute embarrassment and stress; those affected feel isolated, different and guilty, terrified of being found out by other children, and they become socially excluded and terrified of the usual childhood treats, which my children all enjoyed, such as school trips or sleepovers in their friends' houses.

The consequences for family life and for the child affected can be dire. Most parents and carers are patient and concerned, but others—especially if they have social or partner problems, or live in very cramped accommodation—punish their children, thus starting the vicious circle of increased stress, more bedwetting and worse punishment. It can lead to child abuse.

That was what led me to bring the problem to the attention of the House. When reading the Victoria Climbié inquiry report, I tried and tried to understand why that tragic little girl had died such an agonising death after months of torture, in this country. She had been given no attention, no love, no affection.

A major trigger in Victoria's terrible abuse and death was bedwetting. It started, presumably, when she was given to an aunt to be brought to Europe and start a better life, far from her family on the Cote d'Ivoire. I want to refer to the inquiry, because I feel that this child should be remembered.

Victoria was bedwetting, which was a great nuisance to her aunt and her aunt's boy friend. She was taken to a local church. The priest was told about her incontinence, and he formed the view that she was possessed by an evil spirit. He advised that the problem could be solved by prayer… The incontinence appears to have continued… the sofa bed Victoria had been sleeping on was thrown out", and she was made to spend her nights in the bathroom of the couple's flat. This child was seven years old.

When Victoria was in the bathroom, the door was kept closed and the light was switched off. She began to spend her nights alone, cold and in pitch darkness. Later, she was tied up inside a black plastic bag in an effort to stop her from soiling the bath", so she lay in her own urine and faeces in the cold. Her hands were "bound with masking tape", and she was forced to eat by pushing her face towards the food, like a dog… As well as being forced to spend much of her time in inhuman conditions. Victoria was also beaten on a regular basis by her aunt and her aunt's boy friend.

I am sorry to have subjected the House to that, but it started with bedwetting, which is why I wanted Members to concentrate on the subject, if only for half an hour. If only someone had intervened and saved Victoria. That is why the subject is so important.

I have tried to quantify the costs to family and society. A bedwetting child probably costs a family more than £1,000 a year in extra washing, bedding, nightclothes and disposable nappies. A child who soils is even more of a problem. A child with both problems—and perhaps other special needs, for children with special needs often suffer from these problems—costs parents far more than that. Sadly, many parents are still not taken seriously by some doctors, who are much too busy to investigate further, and simply say "Do not worry, they will grow out of it". However, parents of a child living in an area with a proper incontinence service will receive full advice, guidance, treatment and follow-up enabling them to manage the problem. There are many products on the market that can help, apart from advice

I know of only one voluntary organisation that gives advice and guidance, and that is ERIC, the aforementioned Enuresis Resource and Information Centre. It has its own website and a telephone advice centre. It knows which primary care trusts have catered for the problem, but it is of course chronically underfunded.

There are 814 primary care NHS treatment centres for the problem in the UK, with 50 per cent. treating bedwetting and daytime wetting and a lower percentage dealing with soiling; and 63 per cent. of the clinics are nurse led, as they should be. The cost of treatment is minimal and the impact on families and children could save huge sums of money for the NHS in the longer term.

We can also use existing personnel to set up an effective paediatric continence service. That is perfectly feasible; I have seen it done in my professional life. Before the Minister tells me that the Liberal Democrats are calling for yet another spending commitment, I am not. Existing staff can do it at no extra cost. I can assure him of that and, if he wants to see it done, I shall take him somewhere and show him.

Links can be forged with schools and other professions allied to medicine, which would hugely help to develop the whole network that we want to build up to prevent child abuse. It would mean a broader network, with more people talking and looking after one child. All primary care trusts should surely be asked to provide that service for GPs in the area. If health visitors are being devolved to GP surgeries, there is no reason why one of them should not train for and run a continence clinic for several practices in the trust.

The children's national service framework should surely include clear standards for paediatric continence and urge every primary care trust to provide access for a proper integrated paediatric continence service. I plead with the Minister to consider the issue very seriously in order to prevent the suffering—and often the tragedy—that the problem can cause.

2.41 pm
The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman)

I begin by congratulating the hon. Member for Richmond Park (Dr. Tonge) on securing the debate. As she said, this is an important subject. This has been an exciting parliamentary week, but she has no need to apologise for finishing the week in this way, on a subject that is so important to many people. It helps to remind us what Parliament is really all about.

The hon. Lady should not fear that Victoria Climbié will be forgotten. The Government's Green Paper, "Every child matters", was at least partly inspired by the need to ensure that there are no more Victoria Climbiés, and when the children's Bill eventually comes before the House it will, I hope, be an appropriate epitaph for her short and tragic life. The hon. Lady is right that incontinence played a significant role in what led to the events that ended Victoria's life.

Paediatric continence issues cover the whole spectrum of bowel and bladder problems, ranging from infants born with life-threatening congenital bowel and bladder abnormalities to the adolescent who feels totally alone and socially isolated because of persistent wetting or soiling problems. As the hon. Lady said, it is estimated that continence conditions affect more than 500,000 children and young people over the age of five, and such conditions also continue into early adulthood and may even persist into later life.

It is well established that bedwetting reduces children's social opportunities. It causes them to feel "different" from others and to fear teasing and bullying by their peers. Children with learning and/or physical disabilities experience particular problems, and they need specific help and support, particularly at school. There are also associations, as the hon. Lady identified in the case of Victoria Climbiê, between continence problems and child abuse. All in all, continence problems can create every gradation in distress from the quiet desperation of unfulfilled life opportunities to the extremes of misery and abuse.

That is why the Department issued the document "Good practice in continence services" in April 2000. It provides guidance to primary care trusts on continence services. The guidance includes the advice that primary care trusts should have specialist continence services that provide patients with an individual assessment of their needs. In the past, those services have been fragmented. That is unacceptable because it leads to poorer, less effective care for patients. People need skilled assessment and treatment, with early identification of their problems That is why the guidance stresses the need for locally provided continence services that include a director of continence services, continence nurse specialists including paediatric continence nurse specialists, continence physiotherapists, designated medical and surgical specialists, investigation and treatment facilities, and national or regional units for specialist surgery. Those arrangements should cover all aspects of continence management raised by a urologist or gynaecologist, a physician for older people or a paediatrician for children.

I am also glad that clarity has been brought to incontinence aids and supports such as the provision of pads, which should be equally available to anyone in a geographical area, regardless of where they live and according to need. Flexibility should be allowed for special cases such as very young children with multiple handicaps, and decisions should be made by liaising with the designated paediatrician. Pads should be provided in quantities appropriate to the individual's continence needs—arbitrary ceilings are wholly inappropriate.

Continence poses particular educational concerns, and it is associated with difficulties with school attendance, school trips and other essential parts of childhood and growing up—again, the hon. Lady alluded to that point. It is vital that those concerns are addressed and action is taken. Therefore all schools in England were made aware in June 2000 of the guidance in the Department of Health publication "Good Practice in Continence Services", which includes dedicated sections on school and pre-school institutions, covering targets and interventions.

As I have indicated, provision of continence services in England is a matter for primary care trusts, which are responsible for determining the level of services required to meet the needs of their local populations. However, we must clearly ensure that primary care trusts have the necessary resources. That is why we have ensured that every PCT budget will grow by a minimum of 29 per cent., with the average PCT budget growing by almost £42 million by 2005–06.

None of the growth money has been identified for specific purposes. PCTs will be able to use those extra resources to deliver on both national and local priorities. More than 75 per cent. of the NHS budget will be in the direct control of local PCTs. That is about devolving power and resources direct to the NHS front line to decide service provision and levels. We want to see the NHS—primary care, community health services and hospitals—working together to tackle problems and improve services.

The good practice guidance on continence services sets out a range of actions, and we expect to see significant improvements for patients and their carers as a result. That is reflected in the national service framework for older people, which states that by April 2004, all local health and social care systems should have established an integrated continence service". Progress by NHS and social care organisations on implementing NSF standards will be measured so that good practice is shared and immediate action can be taken where necessary further to improve services. A review will therefore be carried out during the course of this year by the Commission for Healthcare Audit and Inspection and the Commission for Social Care Inspection. It will build upon existing work—for example, the Audit Commission NHS plan review and the Audit Commission study of services that promote independence and well-being.

Dr. Tonge

May I assume that the guidance will also be built into the national service framework for children's services?

Dr. Ladyman

I was just about to discuss the national service framework for children's services, but it would clearly be inappropriate to confirm or deny what will be in a document that we have not yet published. Suffice it to say that I would be extremely surprised if the guidance were not included.

We must ensure that all parts of the NHS are involved in improvements. PCTs must highlight the issues relating to service provision specifically for the management of paediatric continence, and focus on the core and essential aspects of care in delivering a quality continence service for children. That is why I welcome the Modernisation Agency's recent publication "Good Practice in Paediatric Continence Services—Benchmarking in action". The document is the result of an NHS commitment to address the key factors and improve service provision.

I am particularly glad that paediatric continence advisers and other NHS staff nationwide have been closely involved in working up that initiative. A number of trusts around the country have looked at and scored their practice against the continence benchmark. They have examined benchmarking paediatric continence services with best practice statements from the point of view of children and their families. From that, it becomes possible to highlight examples of good practice and to discover variability and inconsistency. The exercise also served to highlight evidence of the key factors that can help to reduce the cost to the NHS of issuing products inappropriately, and of inappropriate referral to the acute sector.

In essence, the Modernisation Agency's benchmark exercise sets out that services should be based on and evolve from local continence advisory services; ensure that users and carers are involved in the planning, provision and audit of services; ensure that systematic efforts are made to identify cases of incontinence; enable treatment based on assessment to be delivered in the most appropriate setting, which is usually primary care in the first instance; be cohesive and comprehensive, covering urinary and faecal incontinence, adults and children, people resident in their own homes and people who live elsewhere; and, finally, allow easy access to specialist care when it is needed. It is important that services be fully inclusive and accessible to all children regardless of age or disability, and that they include children with special needs who should have the same access, where appropriate, to all investigation and treatment programmes.

The children's national service framework is a broader-brush initiative to set standards for a range of health and social care services for children and young people. Rather than address specific conditions, the generic standards are likely to outline what support should be available to children and their parents in managing a wide range of conditions and problems, such as paediatric incontinence. In so doing, the NSF will emphasise the promotion of evidence-based clinical guidelines and provide examples of practice.

No consideration of those matters could possibly be complete without reference to that most focused and dedicated voluntary organization, to which the hon. Lady has already referred, the Enuresis Resource and Information Centre, otherwise known as ERIC. ERIC has been involved in producing the Modernisation Agency's paediatric continence guidance, and in discussions on the children's national service framework, as well as running a series of very informed and productive campaigns targeted at providing the interventions necessary and the considerations essential to addressing this problem.

The national bedwetting awareness week gives particular focus to those activities. That campaign, primarily run through school nurses and enuresis specialists in schools across the country, aims to educate children, as well as parents, about the condition and the support mechanisms available to them both in and out of school. Activities during and around the awareness week include school nurses, health visitors and enuresis specialists speaking to children in and out of school about bedwetting; open clinics, which are held to offer advice to parents and children about bedwetting and to suggest appropriate steps; and a regional and national print, radio and television publicity campaign raising awareness of the condition and the existence of information sources.

All that activity is geared to emphasise the fact that bedwetting is not necessarily a reaction to stress and worry, which will fade away, nor just a passing phase that all children will grow out of without intervention. Bedwetting is a condition that can be treated successfully, but which if left untreated can have a huge and long-lasting psychological and social impact. Things do not have to be that way, and ERIC is very much in the vanguard of explaining why not.

To conclude, we are continuing to learn and to implement what we learn. By applying the good practice guidance on continence services, PCTs have both guidance on provision and a means of comparing their performance. By looking at local service provision in line with the Modernisation Agency's paediatric continence benchmarking best practice tool, trusts will be able to identify service provision deficits and remedy them. By sharing best practice with other areas and working together to improve services, the NHS will achieve an overall consistently high quality of service.

Once again, I thank the hon. Lady for raising this important matter. I imagine that it is one to which we shall return from time to time, but I hope that when she studies my words in the Official Report she will be reassured that the Government take it as seriously as she does, and that we are doing our best to address it.

Question put and agreed to.

Adjourned accordingly at six minutes to Three o'clock.