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Westminster Hall

Wednesday 7 September 2011

[Mr Philip Hollobone in the Chair]

Disabled Young People (Support)

Motion made, and Question proposed, That the sitting be now adjourned.—[Mr Dunne .]

9.30 am

Stephen Lloyd (Eastbourne) (LD): It is a privilege to serve under your chairmanship, Mr Hollobone. I am delighted to have secured this debate on support for disabled young people. I have called for this debate today because I have had serious concerns for some time about the inadequate transitional arrangements for many disabled children, particularly those with learning disabilities in the key period from childhood to adulthood. Having spoken to a number of disability charities such as Mencap and the National Autistic Society, as well as others, it is clear that problems with transition, as many of us in the Chamber know, have been going on for many years. I wished to secure the debate so that the Minister could reassure me that the coalition Government understand that there is a problem with transition and can outline how they propose to tackle that problem.

I should like to outline the common challenges that many parents of disabled children, and the young men and women themselves, experience once they are over the age of 17 or, in some cases, 16. Preparation for adulthood is a time of challenge and celebration for all young people, but for disabled young people, more often than not, it is a time of particular challenges. The Transition Support Programme and the wider Aiming High for Disabled Children programme, 2008-2011, resulted in improved consistency of support to young people and families across the country, including greater expectations that disabled young people would achieve their goals for adult life, so I am disappointed that those programmes are no longer running and would welcome the Minister’s comments on what will replace them.

As many hon. Members know from their postbags, parents of disabled people have to deal with numerous statutory services, from local councils in relation to disability access and provision in the home, to social services with regard to helping them to manage and providing respite care. Parents often have a great deal of contact with the local hospital or NHS to help the family with whatever the disability may be, particularly if it is a profound disability. For each disabled child, there is supposed to be a social worker who helps to co-ordinate all the different services. However, that key worker service ceases once the child reaches adulthood—if they were fortunate enough to have had a key worker.

Tussie Myerson, who contacted my office to share her daughter’s story, told me about one such case. Her daughter Emmy is 20 and profoundly disabled. Incidentally, Emmy’s story was first told in Parliament eight years ago, when the right hon. Member for Witney (Mr Cameron) was her MP. Since then, regretfully, her story has not much improved. Emmy, and her mother and father,

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have not had contact with a social worker for six years and have never had any contact with a key worker or benefited from any transition arrangements.

In 2006, the National Autistic Society surveyed its members on their experience of transition. It found that only 53% of young people with statements received transition plans during the course of their education, with the figure falling to 34% of students in mainstream schools—and that is a legal obligation. Unsurprisingly, 45% of those who participated in transition planning were dissatisfied with the whole process. One issue has crept up again and again as I have delved into the provision of support for young disabled people: the lack of—forgive the cliché—joined up, co-ordinated provision and a failure to share best practice between different authorities, leaving many parents to feel that the transition is something of a postcode lottery.

Emmy also had the misfortune of moving from one local authority to another, which her mother deemed to be a fiasco, to put it mildly. Emmy is now in her eighth year of legal wrangling with the local authority. She receives legal aid. I dread to think what the total cost of her legal fees might be, not to mention those of the local authority, but I am certain that without legal aid Emmy and her parents would not have been able to fight her case.

That is just one example. There are plenty more like it. When we get it wrong, disabled people suffer, their families suffer and, sadly, it can and does often lead up to the break-up of families.

Mark Tami (Alyn and Deeside) (Lab): I, too, have had parents of disabled children come to see me. It puts a terrible stress on them. Parents worry very much about the future. They do not know what the future holds for their child, particularly when they are no longer with us.

Stephen Lloyd: I agree. Sometimes the parents split due to the sheer strain—and not just of looking after a severely disabled child, which is a challenge, no matter how much the parents love them. The situation often leads to irrevocable strain between parents, which is one of the saddest things that I have seen. Like all hon. Members, I have seen a lot of desperate cases. Often, the reason why parents split up is because statutory authorities, though they often try to be helpful, are clunky, and lack consideration and co-ordination. That, as I will go on to explain, makes it much worse. It also costs a great deal of money for the family, local authorities and all the agencies. It is therefore imperative, particularly for disabled children going into transition, that we get it right first time. I am sure that the Minister and hon. Members can appreciate how complex and challenging such a scenario must be for both the disabled young adult and the parents.

I have been liaising for the debate with Mencap, which has been very helpful and supportive. It has put together a document that defines what a good transition must look like. In its view, which I share, it is defined by three stages: planning, process and destination. To be a successful transition, each stage must be followed effectively and, most importantly, tailored to the individual, but there are general principles that can be applied to each stage. It is recognised that all young people should be at the centre of their transition planning—that is incredibly

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obvious. That is important for parents, uncles and aunts, and children without disability, but is doubly important when working with a disabled young adult. For young people with a learning disability, a plan will be achieved only if it is timely, accessible and diverse. To be ready for the start of their transition, young people should be encouraged to think about their options in year 8, so that they are adequately prepared for their review in year 9. In the run-up to and following their review, young people should have access to appropriate information about their rights and their options regarding their future. Ideally, the options presented to young disabled adults should be limitless. For all of us and for all disabled children, transition should be an exciting time for exploration, not a restricted choice of a predefined future.

No particular Governments or Government are at fault here; this has been a challenge for a long time. Even well before I was elected, I had people in my constituency come to see me who were absolutely petrified because their child was getting to the end of teenagedom and going into young adulthood. They knew that the key worker was going and that the services that supposedly, and often do, come automatically with young disabled children would disappear. It is no exaggeration to say that they were petrified.

If choice is to be at the heart of young people’s transition, it is crucial that they be given the opportunity to explore their aspirations with the aim of reaching their potential. For young disabled people to have such aspirations, those around them must be aiming to achieve the highest quality of life for them. None of that is complicated or different—it is exactly the same for non-disabled young adults as for those who are disabled.

Throughout a young person’s transition, the process should be co-ordinated and resourced. Although young disabled adults must be the director of their transition journey, it is crucial that the services supporting them be aware of each other’s role in the process. The position of key worker for a young disabled adult is therefore vital, to keep all the professionals in the loop. Obviously, within that, it is about working very closely with the parents of someone who has a profound learning disability, because as well as the work done with the young disabled adult, the parents are best suited to help and guide the child to decide what is best. Often, profound learning disability is accompanied by communication challenges.

For each service to play its part, adequate resources must be provided, mainly that of time. Each professional involved must be prepared to work alongside the young person regularly, to offer support and advice. The transition process should, however, be as unobtrusive as possible, to allow the young disabled person to enjoy as best as possible an ordinary teenhood.

Jim Shannon (Strangford) (DUP): I am sure that the hon. Gentleman and many others in the House are aware of the good work of some voluntary organisations, such as the Prince’s Trust, which I have visited and where I have spoken to some of the young people. Clearly, organisations out there are giving of their effort, time and commitment to help young people. Does he feel that the work of the Prince’s Trust ought to be recognised and complimented in this Chamber today?

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Stephen Lloyd: I agree totally. The Prince’s Trust does outstanding work in this area throughout the United Kingdom. I am delighted to add that compliment into Hansard. The Prince’s Trust does a fantastic job.

The final stage, which is the destination, is the most important. Young people’s quality of life, as does everyone’s, depends on satisfaction with their destination and opportunity to thrive in the future. The best outcome of a transition is for the young people to be living in a place that they have chosen and to be doing what they want to do, with the support that is right for them. If the transition planning and process are followed in the way that Mencap describes and that I have been delighted to outline, in our view the outcome can be expected to be positive.

On other challenges with older disabled children or young disabled adults, a report published by Ofsted last month has highlighted some significant failings in the system. Too many children in further education with disabilities are failing to gain the qualifications needed to get a job or to continue with their education. The report also highlights the reduced support available once such individuals reach 19, which means that they are often burdened with insufficient advice about personal budgets, the requirement to pay fees and uncertainty about benefits entitlement. In fact, a recent study reported that in 2009 an estimated 30% of young people who had a statement of special educational needs when they were in year 11 and 22% of young people with a declared disability were not in any form of education, employment or training when they reached the age of 18, compared with 13% of their peers. Current figures from the labour force survey for the first quarter of 2011 show that 41% of men and 43% of women designated longer-term disabled were economically inactive. Surely such a high figure historically shows that little progress has been made in recent years. It is time that we all do more to do better by our young disabled fellow citizens.

Although since 2008 local authorities have been required to carry out multi-agency assessments for pupils with statements of need or in receipt of support before their transition to a post-16 provider, inspectors found that those arrangements were not working effectively. Providers had received a completed learning difficulty assessment in only a third of the case studies in which one should have been made available.

Kate Green (Stretford and Urmston) (Lab): I am delighted that the hon. Gentleman secured this important debate. Does he agree that there also is a problem earlier in the process, in the through-planning as children move from primary to secondary school? The assessments often take place after the child has arrived in secondary school, rather than in advance to enable preparation to be made for it.

Stephen Lloyd: Yes, I agree. I will touch on what the Green Paper says about SEN, but the problem that the hon. Lady raises is clearly of long standing.

The learning difficulty assessments were found to be not always timely or adequately completed, and did not form a reliable basis on which to plan support or an appropriate programme of learning. The transition at age 19 from children’s to adult services, and from the Young People’s Learning Agency to the Skills Funding Agency, created barriers for learners when they encountered

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different criteria for funding. Learners and their parents or carers identified that they would have welcomed more advice and careers guidance when they received a personal budget for purchasing a learning programme, care and support.

I am conscious, as I am sure the Minister is, that I am covering a range of responsibilities which is perhaps broader than her remit, but that is the reality of disability, in particular in the transition for disabled children or young adults, because so many different areas of Government and statutory services are touched. As I was drafting my speech, I half envisaged five different Ministers from the different Departments attending today because the subject covers such a wide area, but somehow I knew, even with my delusions of grandeur, that that would be unlikely.

Too little is known about the destinations of learners once they leave post-16 provision. A more systematic national approach to the collection and analysis of data about learners’ destinations would help to ensure that limited public resources were deployed effectively to support learners in making a successful transition to adult life.

Finally, I come to the Government’s proposed welfare changes, such as the transfer from the disability living allowance to the personal independence payment and the reforms to housing benefit. I am a member of the Select Committee on Work and Pensions—I am delighted to see some colleagues are present—and I support the direction of travel of many of the changes being proposed by the Department for Work and Pensions, in particular the Work programme. We are discussing young adults and children, but about 2 million children today are growing up in households in which no one works. That is a national scandal which I hope that the Work programme will address rationally and productively—I think that it is doing so.

David Simpson (Upper Bann) (DUP): I congratulate the hon. Gentleman on obtaining the debate. Many of us in the Chamber have in our constituencies special needs schools and schools dealing with children who have disabilities and learning difficulties, and I agree entirely with what he said about the dearth of activity for young people with special needs post-16 and post-19. He mentioned multi-agency work to help those young people, but does he agree that the CBI, the Federation of Small Businesses and their like should be encouraging their members to employ young people who might have learning difficulties or some form of disability?

Stephen Lloyd: I thank the hon. Gentleman for making that important point, which I will discuss when I talk about the Work programme and the black box principle, which I am excited about. Having been in business for many years before coming into politics, I passionately support more businesses employing and recruiting disabled people, because more often than not they are very good employees, but I am conscious that because many small businesses lack understanding of disability, they often will not let disabled people through the door, irrespective of the Disability Discrimination Act 1995.

Mark Tami: The hon. Gentleman makes a crucial point. Many employees make assumptions that disabled young people are capable of doing only certain jobs.

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That is wrong, and is a particular problem when dealing with mental health issues. Many employers make assumptions and do not want to employ such people.

Stephen Lloyd: I thank the hon. Gentleman for his intervention. Again, he makes a good point about mental health, which still causes fear in people. As vice-chair of the all-party parliamentary group on mental health and having grown up with a mother who had bipolar disorder, I have experience of and am familiar with mental health issues. I know that they may be a real challenge, but I also know that anxiety, fear and lack of understanding on the part of many people stop many of their fellow citizens contributing very effectively in jobs. Most people with mental health incapacity manage their incapacity.

The challenge of persuading the Federation of Small Businesses, the CBI and so on to take on more disabled people needs a push, and it will be underpinned by the Work programme. Some specialist small charities and training companies understand mental health and learning disability, and part of the opportunity of the black box principle and the Work programme is that there should be enough money for those smaller organisations to engage with local employers to help to break down that barrier. I would like the major trade associations to take more responsibility and to step up to the plate. I would like them to make a commitment. I am a parliamentary champion of the FSB, and I have a meeting with it tomorrow when I shall remind it of that. I appreciate the hon. Gentleman’s intervention.

I have specific concerns about the welfare changes involving young adults and children, and the change from disability living allowance to personal independence payment. I shall be grateful if the Minister puts them to rest. The Government have stated clearly that they intend initially to migrate working-age people to the new PIP, which means that until all age groups are migrated on to PIP, there will be two very different benefit systems for disabled people. The Every Disabled Child Matters campaign group, with which I have worked closely, is calling for under-16s not to be brought on to the PIP system before full public consultation and analysis of how the new system works for over-16s has taken place.

Although I welcome the Government’s decision to have a different commencement date for children and working-age adults on PIP, I share with the Every Disabled Child Matters campaign group its concern about the impact that the two systems may have on disabled young people who turn 16 in 2013. We are both concerned that the migration to PIP may result in those disabled young people testing out the new system. The Minister has responded to such inquiries in the House, but to my knowledge she has yet to give a firm acknowledgement that young people turning 16 in 2013 will not be the first to go through the new assessment. I shall be grateful if she provides an update.

That brings me to the proposed benefit cap and changes to housing benefit. We all want an end to taxpayers having to foot the bill for some of the absurd and astronomical rents for some families living on housing benefit. I do not have a problem with the broad thrust of that narrative, but we must be careful about unintended, disproportionate and unfair changes to the circumstances of disabled people and their families. The changes to the shared-room rate and the

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implementation of an overall cap on housing benefit cause me concern in relation to young disabled adults. Let me explain why.

The Government propose to increase the age limit for the shared-room rate from 25 to 35, so single people without children aged up to 35 and claiming housing benefit will be restricted to the rate for a single room in a shared house, instead of the rate for a self-contained, one-bedroom property. I shall give an example of why that causes me concern from the disability perspective. The disability of someone with high-functioning Asperger's syndrome—autism—more often than not makes it very difficult for them to share with strangers. A constituent who is a tremendous volunteer, and who helped me during the election by delivering Lord knows how many leaflets, has high-functioning Asperger’s syndrome and finds it difficult to go into a room where there are people he does not know—let alone to share a house with people he does not know, which the benefit changes may lead to. He struggles to go into a room where there are people he does not know, and frankly he will not unless I am right next to him. The Government’s proposal is a real problem for those with some disabilities, and I ask the Minister to take that on board.

David Simpson: The hon. Gentleman said that there will be two systems for disabled young people or people with disabilities, but my understanding is that by 2013 there will be one universal benefit. Will he please clarify that?

Stephen Lloyd: I am seeking clarification from the Minister on that point, which I thank the hon. Gentleman for raising. On the one hand, we have been told that there will be one universal system from 2013, but on the other, the Minister has said in the House that she understands that there may be a problem, and my understanding is that she will return with clarification. I too am a little confused, but I am cunningly fleshing it out—at least, that is the plan.

I emphasise that the equality impact assessment of a benefit cap shows that approximately 50,000 households, approximately half of which have a disabled member, stand to receive lower benefit payments. The Minister knows that I have general concerns about some of the housing benefit changes, but today I am focusing on the disability perspective, because I believe that if the changes are handled incorrectly, they could be catastrophic for some young disabled adults and their families. Some 52% of families with a disabled child are at risk of experiencing poverty. With more than 40% of disabled people aged 16 to 24 already living in accommodation that does not meet their needs—there is a long history to the problem—we must be careful of any resettlement as a result of a cap on housing benefit and an overall cap on benefits that disproportionately affect young disabled adults.

The SEN and disability Green Paper has been heralded by many who are hopeful of developing a more transparent, less conflict-ridden and more family-friendly system of support that gives parents a greater say in decision-making processes. I am hopeful that the White Paper will set out detailed proposals for radical legislative and policy changes. I mention the Green Paper because I think it contains

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some good and progressive potential protocols. I urge the Minister to continue to work closely with my hon. Friend the Minister of State, Department for Education (Sarah Teather), who is leading on that Green Paper. Disability never affects one Department, but involves a range of statutory bodies.

The Government have taken some positive steps, which I applaud. I have already mentioned the Work programme and emphasise that I am keen on the funding model, with its inherent black box principle. Over the years, I have worked with many disabled people. I know that too many large companies do not really understand disability and that the best people to work with young disabled people and help them to get into jobs are often specific groups and organisations, such as the Prince’s Trust, that not only understand disability but have a passion to make things better. The principle behind the Work programme and its funding is that much of the money and many of the resources should be downstreamed from prime providers to subcontractors which have a greater understanding of disability. I am hopeful that that approach will work.

I remind the Minister of what I said at the start of my speech about the main thrust of my anxieties. The system for the transition from childhood to the cusp of young adulthood is inadequate and has been for many years; support for young people on that cusp is poor, lacks joined-up thinking and provision for teenagers. I am also concerned about possible unintended consequence of changes to the welfare programme disproportionately affecting young disabled people. I am grateful to the Minister for listening to my remarks. I am aware that her Department has to cover a wide range of issues, and I look forward to her response.

Mr Philip Hollobone (in the Chair): Three hon. Members are standing up—a wealth of talent before me. I want to begin the winding-up speeches no later than 10.40 am. Three people wish to speak, so you can work that out and will all get a reasonable amount of time if you are fair to one another.

10.2 am

Sheila Gilmore (Edinburgh East) (Lab): I thank the hon. Member for Eastbourne (Stephen Lloyd) for securing this debate because the issue is important. I do not intend to speak at length, but I want to touch on some issues that have come to me as constituency problems. They concern individuals but show some areas of policy where the situation could be improved. One issue concerned a young disabled lad who had just left his special school. He had stayed in that school until he was nearly 20, but to be honest he would probably be described as a three-year-old in a 20-year-old’s body. In many ways he is very happy and friendly, but he has no language. He suffers from Down’s syndrome and is severely autistic so his capacity is obviously limited. I am not an expert, but on meeting him and his mother I could quickly tell that the likelihood of someone like him being able to consider any form of employment was no more probable than my three-year-old grandchild entering employment.

The specific issue raised was his mother’s great concern about what had happened as soon as her son left his special school. When I first saw her, she was in the midst of filling in a form for employment and support allowance—she had to fill that in because he clearly

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could not, and she found it quite difficult. She also made inquiries to the Department about the possibility of a face-to-face assessment she had been told about. When she made contact, she was told that there were no exceptions, that there would have to be a face-to-face assessment, and that she would have to bring in her son. She explained that one aspect of his condition means that he finds it difficult to go into strange places, to the extent that even with all her powers and being used to the situation, she sometimes cannot make him do it.

As it turned out, I am glad to say that, on the basis of the forms and medical report it received, the DWP decided to award employment and support allowance in the support group without a face-to-face assessment. However, the family—the mother in particular—suffered unnecessary stress because of information she had received previously when her son’s circumstances were not fully taken into account. It occurred to me that such cases could be dealt with more quickly and effectively, and with less stress, if the DWP undertook outreach work in schools where young people are about to leave that form of education. The Department could have carried out its assessment quickly and easily within the school setting because nobody, other than his mother, knew better of what that young man was capable than the school. A great deal of stress and time would have been saved, especially had other forms of appeal become necessary. That is a matter of process where, with a little thought, a more humane system could be adopted.

That young man currently receives DLA, but when we look at the transition that will be made from DLA to the personal independence payment, we must think about the processes involved and the fact that we do not necessarily need to put everybody through a complex process if it is manifestly unnecessary. However much the Minister may feel that it would be useful for many people to go through such a system, there will be some cases in which, on anybody’s analysis, that should not be required. I urge her to give that issue some special thought before we get embroiled in the system and people are given conflicting messages about what is likely to happen. Even at the point of applying for ESA, my constituent was given certain information over the phone by officers in the DWP that increased her stress levels considerably.

Another minor aspect that my constituent raised—I accept this is not new and has been in the system for some time—was the financial position in which the family found themselves. That is obviously an important issue when it comes to purchasing the additional help and assistance that is often necessary outwith the local authority care package. Because my constituent’s son has been placed in a support group, once the first 13 weeks are up, a non-dependant charge will be placed on his mother in respect of housing benefit. She is over 60 and retired, but I think that even in earlier years she found it difficult to remain in employment, given her son’s condition.

At the moment, her son is on the lower rate of ESA because it is still within the 13-week assessment period, although it has been agreed that he will move into the support group and receive the higher rate of ESA. At the end of that period, he will be regarded as a non-dependant, and his mother’s housing benefit and the finances available to the family will in effect be reduced. Since the higher rate of ESA is supposed to meet a

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family’s additional needs, it seems somewhat perverse to take that support away because the mother is over retirement age, even if she is not working. I accept that that situation is not new, but it is perhaps something we should look at if we seek to improve the situation for families.

The mother said something else that I felt was worth pursuing. She has done a little research on this issue and talked to other people. She felt that, when her son suddenly became an adult for the system, the attitudes towards him and her suddenly became more difficult. That was not just about the benefits issues. She gave me another example. He has been given a care package and a place at a day centre and she was trying to get him used to the idea of that. He had been at a very good special school in Edinburgh, but the day centre is obviously a completely different environment. He was to have transport to go there but, given his particular difficulties with strangers, she asked whether he would have an opportunity to meet beforehand the person who would be doing the transportation. She was told, “No, because he is now an adult.” When he was a child and his arrangements changed, that opportunity was always given, but now she was just told, “No. Under the adult system, we don’t do that sort of thing.”

Stephen Lloyd: I thank the hon. Lady for making an incredibly powerful point about disability. The system does not appreciate that, for many disabled people, the nature of their disability means that in terms of age they may be an adult, but in terms of intellectual capacity and their ability to manage things, they are not. The system cannot cope with that. It is a very strong point. Does she agree that more needs to be done and understood in that area?

Sheila Gilmore: I certainly do agree, which is why I was trying to bring out that point. Sometimes there are unintended consequences from the important breakthrough whereby a lot of people with disabilities started to be treated as people with the right to make their own decisions and as an adult, like any other adult. Many people had been campaigning for that for a long time, and for many disabled people it has been a huge breakthrough and beneficial, but there are some people—my constituent and others whom I have come into contact with would fall into this category—for whom it does not work. All it does as far as the family is concerned is make life slightly more difficult. They do not see any purpose in it. Sadly, the young man to whom I have been referring will never grow into adulthood in that sense. Nothing in the field of medicine is likely to change that, so his mother felt that that blinkered view—“This is what we do”—was not helpful. It probably originated from something that was intended to be good, but it has turned out to have a downside.

The mother’s suggestion, which I think we should consider, was that there could almost be a separate category when it comes to the way in which people are treated. Her contention was that in some countries that is what happens—there is more understanding of the different nuances of disability and someone like her son is not treated in exactly the same way as other adults. She was keen to say to me that she thought that local government at all levels should be considering that type of option and trying to improve its practice. I know that there will always be difficulties about definitions and

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about the point at which those distinctions are made, but if we could apply that perspective and it improved the experience of disabled people—in this case, young disabled people—and their families, it would be beneficial.

10.13 am

Kate Green (Stretford and Urmston) (Lab): It is a pleasure to participate in the debate under your chairmanship, Mr Hollobone. I am also pleased that the Minister responsible for disabled people will respond to it because, as was said by my hon. Friend the Member for Eastbourne (Stephen Lloyd)—I have called him my hon. Friend because we are colleagues on the Select Committee on Work and Pensions and have discussed these matters in that Committee on many occasions—we are covering a very wide ambit of departmental responsibilities in the debate. It is good that the Minister who can draw all those together for us in government will respond to the debate. We are pleased that she is here this morning.

Like the hon. Member for Eastbourne, I want to focus on some of the transition issues. Of course, for disabled young people, transition is quite a protracted process. It begins when they are in their mid-teens and can stretch right through until they are in their mid-20s as they transfer from children’s services to adult services in terms of how the social care package and social support are provided. Like all young people, they may move on from school to a college or higher education setting and, in due course, to employment. During that period, they may also seek to leave the family home and set up on their own. It is important that we consider how we support young people through those transitions economically, as well as through the care packages that they receive.

I am fortunate to have had some extremely helpful briefing from Every Disabled Child Matters, as other hon. Members have, and from the transition support co-ordinator at my local authority. One message that comes through clearly is the need for a planned approach to the transition; it cannot be left to chance. In addition, it is important that that planning begins early and is done with the young person and his or her family. Underlying what I want to get across today is the need to support disabled young people in achieving their aspirations. Too often, our aspirations for those young people, employers’ aspirations for them or even the aspirations of colleges, schools and social services for them are too low.

First, however, I will talk about some of the financial issues and I would be grateful if the Minister addressed them. The hon. Member for Eastbourne has already alluded to the implications of the introduction of the personal independence payment in due course. The Minister was good enough to write to me before the summer recess about the arrangements that will be consulted on in relation to children and young people, who are not currently to migrate immediately on to PIP. I think that at that stage she was saying that no firm plans were in place and there would be wide consultation as plans were developed. I certainly welcome that, but she must understand that there is an awful lot of uncertainty and concern as a result of the process still not being firmly available to people so that they can understand

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what the Government might be contemplating, and for some young people—for example, a young man I met in my constituency who is on the autistic spectrum—uncertainty is a particular worry. We were told that he already, at the age of 17, was beginning to worry about what the transition would mean for him. I therefore hope that the Minister can give us more information about the process today.

If young people aged 16 to 18 are placed on a benefit, as I accept they are now with DLA, that is identical to what adults receive, how will that be designed appropriately to meet their needs? We are particularly concerned about that. We are also concerned—other hon. Members alluded to this—about the assessment process for young people. In his comments to me, the transition support co-ordinator in Trafford highlighted the fact that young people already go through multiple assessments for different packages of support and benefits. My hon. Friend the Member for Edinburgh East (Sheila Gilmore) has highlighted one way in which we might ease the assessment process, by going to the individual rather than setting up a series of assessment hurdles that they have to come to and cross. It is a very imaginative idea, which I hope the Minister will explore.

I am concerned about another issue. The Minister has indicated in the past that it is not necessarily the case that young people as they turn 16 in 2013 will automatically be migrated on to PIP, but I would like to know what further thinking she has developed in relation to the transition period. Does she envisage a phased transfer of young people on to PIP from DLA? If so, what will the time scale be and who might go first?

The Minister will know that real concerns remain about the situation of children and young people if the extended qualifying period for PIP that is proposed for adults is also applied to them. Children’s conditions develop and change incredibly quickly in some cases. CLIC Sargent has estimated that, if the extended qualifying period for PIP were applied to children and young people, that could lead to nine out of 10 families, and 60% of all its clients, suffering financially.

Mark Tami: It is an important point that CLIC Sargent raises, because the onset of a cancer is very sudden and, although some children react very well to the treatment, some children do not and there is an up-and-down pattern, so it cannot be said that there is a consistent level of requirement for those children. It is therefore very important that the support is in place straight away and particularly when the parents have received that devastating news.

Kate Green: My hon. Friend is absolutely right. As I say, many children’s conditions vary, progress and retreat much more suddenly and rapidly than those of adults. Crucially, children’s educational and social development is also taking place as they grow into young adulthood. If there are concerns about the financial support for children with medical conditions, that will also have wider developmental implications for them.

There is continuing uncertainty about children and young people in residential settings. I am particularly interested in young adults, some of whom are quite likely to want to look at residential colleges for their further education. The Minister wants to remove any duplication in funding in relation to the mobility component

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that people receive as part of DLA. I would be grateful if she could tell us how she expects to assess whether there is actually any duplication, because I have so far been unable to uncover much evidence of it. What assessment has she made of the implications for young people over the age of 16 in residential colleges, and particularly for their ability to participate as fully as possible in not only educational life but wider social life?

I echo the comments of the hon. Member for Eastbourne on housing benefit. I also want to highlight the concern that constituents have raised with me about the substantial costs of adapting housing and about the implications for them if the housing benefit changes and the housing benefit cap force them to move. It seems quite ridiculous that, as a result of other policies, we should disrupt families who might have had to make substantial investments to adapt their home accommodation. I hope that the Minister will indicate that there will be flexibility in the system to ensure that families of young disabled people, in particular, are not subject to great instability and do not have to move as a result of housing benefit changes. That is particularly important for the young people we are talking about, because such instability disrupts not only their social and educational networks but their medical and care networks in many cases.

Jim Shannon: On that point, which the hon. Lady has clearly illustrated, does she feel that the Government need a concerted policy to address housing benefit for young disabled people, considering that 10% of them will be homeless in a short period?

Kate Green: Clearly, that is an incredibly serious concern, which the Minister will want to take seriously. Like the hon. Gentleman, I very much look forward to hearing her reply to his suggestion.

I want to say something about employment and education. I echo other hon. Members’ comments about the need to encourage employers to be more willing to take on disabled people and to recognise the extensive capacity that many of them can bring to the workplace. However, I want to raise a few points with the Minister about the education and training environment in which young people prepare for employment.

Following the loss of the education maintenance allowance, what assessment is being made of the extent to which young disabled people in financial need can access other sources of financial support, including those provided by colleges and schools to enable people to continue and complete their education? With the loss of Connexions next year, how will the new predominantly web-based information and advice service for careers be tailored and adapted to meet the needs of young disabled people? How will the structure of integrated budgets, which are meant for young people’s living needs, be protected, so that people are not forced to dip into them to pay for their education, including transport to educational settings, books and equipment? Like other hon. Members, I am interested to hear what further steps the Minister thinks she can take in government to encourage employers to become more willing to employ young disabled people.

I am pleased to have had the opportunity to contribute to the debate. There are many more issues that I would like to raise and which I am sure colleagues would like to raise. I am pleased that the Minister is here to listen to the debate, and I look forward to her response.

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10.24 am

Steve McCabe (Birmingham, Selly Oak) (Lab): I am pleased to be able to take part in the debate. I congratulate the hon. Member for Eastbourne (Stephen Lloyd) on securing it. We can never devote enough time to the subject in this place.

Like others, I want to begin by asking about the personal independence payment. I have to say that I like the concept of an independence payment, and it sounds attractive. Like others, however, I am not quite sure what it will mean in reality. I do not want to end up with a crude, Orwellian sleight of hand, whereby the word “independence” results in a set of arrangements that mean the exact opposite. I do not say that that is the intention of the Minister or the Government, but I hope she understands the concerns many Members and organisations representing disabled people have about how the provisions will work in practice. Like others, I hope that she will be able to give us a bit more information and that we will be able to secure a promise that she will provide more information to people across the country, because it is important that she does so.

It is important to recognise that having great support needs does not mean that dependence and exclusion are inevitable, but that depends very much on how we choose to approach people and on whether we give the right kind of support—support that facilitates independence and assists those who are trying to help them. In an intervention earlier we heard about the pressure that is sometimes put on parents. I read a recent study looking at young disabled people who seemed to have made quite a success of their lives, in that they had secured employment and found a place to live independently. They highlighted the fact that their parents had been critical in helping them through those different phases. As in many other areas of life, it is true that good parents—parents who provide the right support—are a great help. However, where we are talking about parents who are coping with children with disabilities—often quite severe disabilities—we should never underestimate the pressure they are under, and that was illustrated in the example given by the hon. Member for Eastbourne. We should never underestimate the pressure on parents, how easy it is for one final incident or episode to be the straw that breaks the camel’s back or how insensitive agencies can be at times to the pressures on parents.

I want briefly to mention two groups. The first is young soldiers. I obviously see a lot of young injured service personnel at the Queen Elizabeth hospital in Birmingham. The lives of these young people will be changed beyond all recognition from what they would have anticipated when they joined the services a few years ago. As we think about the support and provision that will be available in future, it is important that we do everything to assist the independence of these people, to whom we already owe an enormous debt, and who have every right to expect to lead a fulfilling and independent life. We can either assist or hinder that process by the way in which we shape the support and services we make available.

The other group is young people with terminal illnesses. In the past, they would tend to die at a relatively young age—perhaps before or in their early teens. Quite often, the support we provided was limited to a bit of hospice provision and a bit of social services or other independent agency provision at critical times in the illness. Nowadays,

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youngsters with terminal illnesses tend to live much longer, into their early 20s or early adulthood. Like every one else making that transition in life, they have all sorts of demands and expectations, and they want to go to college and have jobs. Quite often, they are capable of doing those things, but they need different kinds of support and services. We need to recognise that there will be an increasing demand for that in the years ahead, so the more we can shape and prepare services now, to cater for those young people, the more we will be able to help them, and the more we will get ahead of the game, rather than playing the traditional game of catch-up.

I want to mention two issues, the first of which is mobility. It seems to me that that is the key to any sense of independence. If someone cannot decide for themselves where to go, when to go there, and how to organise their life to achieve things, their independence is severely restricted. I hope that as the Government think about how to reshape support and benefits, they will think about mobility for young people, particularly those in residential establishments. It is not right, when they are trying to make the transition to adulthood, that they should be dependent on someone else deciding what time they will get to go out socially or visit the shops. They need some degree of independence.

To go back to the issue of parents, it is extraordinary how insensitive agencies can be to the needs of parents and disabled youngsters. Birmingham city council, which is trying to save a bit of money because of the budget predicament—and that is perfectly understandable—recently introduced a proposal to restrict school bus access for children going to special needs schools, subjecting them to the same arrangements as other children. I cannot remember the exact distance now, but I think that they must live further than something like a quarter of a mile away. Of course, the reality is that children going to special needs establishments have special needs. Some of them do not like massive changes and disruption; they need a predictable route. Some of them could not possibly travel by themselves on public transport. It would not be feasible for them to get taxis, because that would cost the local authority more than the existing transport provision. The parents found out about the change through a blanket letter from the council to all parents, informing them of the intention; so of course we had people phoning up in floods of tears, saying “What am I going to do next week?”

That is the kind of thing that came up in the exchange between my hon. Friend the Member for Edinburgh East (Sheila Gilmore) and the hon. Member for Eastbourne: far too often the agencies are inflexible with their rules. They are oblivious to the needs of the population they are trying to serve. I think that perhaps, without any more cost, a bit of Government guidance and direction about the way in which the agencies must perform, both in providing services and when there is any intention of changing them, could make a significant difference.

That brings me to the other issue I want to raise, which is schooling. I am dealing with a situation concerning a young woman in my constituency who is on the far end of the autism spectrum. She has a great deal of personal need. At times she self-harms. She is challenging at home and gets very frustrated; she often attacks her

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parents and the other children. She is a challenge. Her parents have coped with that for 14 years, as well as bringing up two other children. They have done a remarkable job. However, in the past year, the secondary school that she attends in Birmingham, which is not a special needs school, has decided that it cannot cope with her. It has come to the conclusion that it is not the right place for her.

I do not blame the school for that decision, which is possibly a quite professional one, if those concerned have genuinely looked at the situation and thought about it; but of course the parents need to know that now that that has happened the authorities will take a good, honest look at the situation and come up with a proposal that will serve the needs of that young girl. What they have done instead is to withhold the minutes of the initial meeting that took place; they appear to have edited them to exclude some of the things said at the meeting, and have now come up with a set of proposals insisting that she return to the school—which the school rejects. They are essentially making those decisions on cost grounds; there is no doubt about that. As a result, although other children are back at school this week for the start of the new term, the girl is at home with her mother, who is at the end of her tether. Of course, every time her father must take time off work to try to deal with the crisis, he loses money, which plunges the family further into financial difficulty.

That seems to me not only insensitive but a completely unprofessional, unacceptable and irresponsible way to deal with people. I am happy to discuss the personal details of the case with the Minister. If there is anything that she can do to help I would appreciate it; but generally I want to say that local authorities must be given clearer direction on such issues. I do not think that it is entirely a matter of money. I am aware of the budget pressures that face Birmingham and other authorities; if money is a consideration, so is the way in which people behave, and the way in which they treat those they are there to serve. I do not think that the state of affairs I have described is remotely acceptable.

I thank the hon. Member for Eastbourne for obtaining the debate. I hope that the Minister will respond to some of the issues raised, and that we shall have many more debates like this one, so that we can shape some provision in a way that genuinely reflects the needs of the people we hope to assist.

Mr Philip Hollobone (in the Chair): If the Front Bench speakers split their time, they have about 12 minutes each.

10.37 am

Margaret Curran (Glasgow East) (Lab): I am grateful to be here today under your chairmanship, Mr Hollobone, and I shall do my best to be equitable in the distribution of time.

I of course begin by congratulating the hon. Member for Eastbourne (Stephen Lloyd) on obtaining the debate. I call him an hon. Member as he sits on the Government Benches, but like my hon. Friend the Member for Stretford and Urmston (Kate Green) I regard him as a friend. I have got to know him well and he has this morning demonstrated his commitment to disability

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issues. His pursuance of those matters is well recognised in this Chamber and I hope to continue to work closely with him.

The debate has been very interesting, and hon. Members have spoken convincingly of the points that need to be addressed. I shall focus particularly on those that lie within my responsibility, but perhaps I will make one or two wider remarks. In an extremely moving speech, my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) dealt with the range of issues that must be grappled with, at the heart of which is the pressure on families. We should always be reminded of the daily grind that many families face. We can never have enough time to deal with those issues, and have just touched on them today. I hope we can continue to deal with them.

In my time working with this brief, I have met the Spink family and the Kennedy family. I do not know whether any hon. Members present have come across them, but I am sure that they are known to the Minister. They have spoken in shocking detail of their experience of services—their inflexibility—and the unwillingness, perhaps of us all, to fully appreciate the depth of the challenge that many families face. We say that we have made progress—I will defend the progress made by my party’s Government, and the Minister will defend hers—but there has never been enough progress to address the reality for those families.

My hon. Friend spoke very well, particularly about the last family he mentioned, and about veterans, as well as the amount of work we still have to do. Of course, the briefings that we received from the Children’s Society put it very well when speaking about the different culture and the different eligibility criteria that the hon. Member for Eastbourne drew to our attention, and the impact that that can have on the lives of young disabled people and their families. We must force ourselves to improve services.

I was tempted to talk about services, local authority funding and suchlike, but I do not want to go down that route because of the lack of time. I shall concentrate instead on welfare reform, which is clearly part of the Minister’s remit. The reforms relating to disability are perhaps some of the most controversial elements in the Government’s proposals in the Welfare Reform Bill. The Government will say that the Bill is the hallmark of their Administration and a flagship policy. I am grateful to have the opportunity this morning to interrogate the Government in more detail, but we will obviously continue to do so.

The hon. Member for Upper Bann (David Simpson) referred to universal credit; we have not focused enough on that, yet it is vital for disabled people. I also want to consider the personal independence payment, and I shall of course return to my hobby-horse, the disability living allowance mobility allowance, which has also been mentioned.

I start with DLA reform because of its importance to children, of which all who have seen the briefings will be aware. As has been mentioned, 1.8 million working adults will be migrated to the new benefit, and there are implications for those who turn 16 in 2013, but we do not know much about what will happen to the 300,000 children currently in receipt of DLA, other than the fact that their situation will be considered once the proposed reassessment of adults is under way. That is controversial in itself and is causing enormous alarm among charities, families and individuals.

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It is vital that we deal with this quickly because clause 87 of the Welfare Reform Bill, which is making its way through Parliament, removes clauses 71 to 76 of the Social Security Contributions and Benefits Act 1992—the legislation that currently provides DLA to disabled children. Alternative arrangements clearly have to be put in place quickly and we need to know the details soon. The Minister will be aware that in Committee we asked what the proposals for children were likely to be, and my hon. Friend the Member for Stretford and Urmston mentioned several times the need to consider the matter. A number of amendments were tabled—they were not successful—on reassessing the impact of the six months delay in receiving benefit and whether the ending of automatic entitlement would affect children. A number of substantial questions need to be dealt with in depth.

Disability premiums in universal credit are vital, and I ask the House to focus on them because charities are deeply concerned about the changes. Those on the middle and lower rates of DLA care who receive only the disability element receive £52, and those on the higher rate, who receive both the disability element and the enhanced element, receive £73. Under the new system of universal credit, the rates for children will be aligned with those for adults, so that there will be two rates of award: £25.95 and £74.50. That change means that people will now be eligible for either the lower or the upper rate of premium, rather than the combined amount. The important point is that those families on the higher rate will be slightly better off, receiving £74.50, an increase of £1.50; but those on the middle and lower rate will receive £25.95, a substantial reduction from £52. I ask the House to focus on that as the Welfare Reform Bill makes its way through Parliament—it is in the other place now. Support for disabled children on the middle and lower rate of DLA will be halved.

Charities estimate that about 100,000 families—including, for example, families with autistic children—will lose up to £1,366 a year, amounting to about £20,000 by the time a child reaches the age of 16. That is a substantial loss of benefit. As the hon. Member for Eastbourne pointed out, 52% of families with a disabled child are at risk of poverty. The benefit is means-tested, so the poorest families will suffer the greatest hit. That is a significant change. I note the hon. Gentleman’s gentle challenge to the Government to rethink some parts of the Bill, and I encourage him to take up that cause. Universal credit is seen as a panacea to the challenges of the current benefit system, but I caution Members not to rush to that conclusion, because many disabled children will lose out.

The DLA mobility component is one of the most highly publicised and controversial elements of the Government’s policy, and it applies to children as well as to adults. Specific reference has been made to children in residential schools and colleges who depend on mobility support. The briefing from Every Disabled Child Matters states that for all young people aged 16 to 25, the ability to get around independently is vital to allowing them to lead the ordinary lives of young people and for developing the life skills that will lead to independent living later in life. It would be devastating for these disabled young people to find that financial support for mobility was withdrawn just as their adult lives were beginning. The campaign to save the DLA mobility component is

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ongoing. I appreciate that the Government have announced a review, but some confusion remains about how the policy will work and what impact it will have. I ask the Minister to answer one simple question. Do any children in residential settings face the prospect of losing their mobility component? If so, I ask all Members to join me in saying that that should not happen. We should try to prevent that group of vulnerable people from losing such a critical benefit.

10.47 am

The Parliamentary Under-Secretary of State for Work and Pensions (Maria Miller): It is a pleasure to serve under your chairmanship, Mr Hollobone, for what I think is the first time. You have presided over an extremely informed and useful debate. I thank my hon. Friend the Member for Eastbourne (Stephen Lloyd) for securing the debate. He and I have had a number of conversations about disability matters over the past 18 months, and he brings a great deal of expertise to the House.

The debate covered a broad range of issues and I hope to do justice to them in my response, but if I cannot answer them all in the time allowed, I will be happy to deal with them separately should Members wish me do so. First, I shall set out the Government’s approach to supporting disabled young people. I shall then answer some of the important questions raised today.

When I talk to disabled young people, as I did only last week and over the weekend in my constituency, I find them to be as ambitious as non-disabled people—no one in the Chamber today will find that surprising—and their hopes for the future are no different. They want a job in which they can excel, a home, a family and friends. They want to live independent lives, and those lives will be different for each of them.

The catch-all title of disabled can sometimes be unhelpful. As Minister with responsibility for disabled people, I have to deal with the wide range of conditions, illnesses and challenges that these people face. We heard today that it is only by joining together the work of social care, health, education and employment effectively that we can ensure adequate support for disabled young people. All of those elements have a part to play. Joining up those services to ensure that disabled young people live independent lives is at the heart of the Government’s work, but in doing so we must also ensure that we retain the ambition that every disabled young person and their family have for their lives, including the ability to take on the challenges of the future so that they can reach their true potential as an individual.

The hon. Member for Edinburgh East (Sheila Gilmore) rightly said that families have a critical role to play. Sometimes, though, it is important to separate an individual’s passions and desires for the future from the family. Although we need to ensure that families retain their vital role, we must at the same time recognise that it is the disabled young person and their individual needs that we must focus on first and foremost to ensure that they can enjoy an independent life, whatever that means for that individual. The hon. Member for Birmingham, Selly Oak (Steve McCabe) also made the

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point that by enabling disabled people to live independent lives, we can avoid many of the mental health problems that we all see in our own constituency surgeries. All too often such problems accompany disabilities.

Let me outline a few of the measures that the Government are taking. I pay testament to the work that my hon. Friend the Member for Brent Central (Sarah Teather) is doing in this area as a Minister in the Department for Education. It is under her stewardship that the special educational needs and disability Green Paper has been produced. I am thankful that she has agreed to work closely with me on that key reform affecting some of the transition problems that have been raised today. The single assessment that my hon. Friend sets out in the Green Paper will start to deal with some of the problems that the hon. Member for Stretford and Urmston (Kate Green) so eloquently articulated today. We are looking for local authorities to trailblaze the new approach, so that we can avoid some of the complications and hurdles that currently face disabled people and their families.

My hon. Friend the Member for Eastbourne talked about the importance of effective support for transition. Again, the SEN Green Paper clearly sets out the importance the Government attach to dealing with the variable support that is sometimes provided for parents and disabled children after they turn 16. It is precisely to resolve the problems post-16 that we are considering testing the new approach of having a single assessment across the full zero-to-25 age range, as well as ensuring that it is portable. The Minister of State, Department of Health, my hon. Friend the Member for Sutton and Cheam (Paul Burstow), is also involved in that.

My hon. Friend the Member for Eastbourne talked about key workers and how they support disabled people in transition. We are in full agreement that key workers can play a hugely important role in supporting families and young people to navigate through transition, which is why we commit in the Green Paper to invest in key worker training. We are in the process of appointing a voluntary, non-profit-making organisation to lead. Those are important and exciting developments that we can look forward to in the future.

[Mr Bone in the Chair]

Personal budgets are also pertinent. In our constituencies, we all see a great deal of money being invested in supporting individuals, but all too often it can feel that that money is not well co-ordinated. The Department for Health’s commitment to personal budgets and to allowing every disabled individual to access them is an important step forward and will help to ensure that all the available money is used to best effect. Last Thursday, I was fortunate enough to meet a wide range of individuals from disability organisations and a group of disabled people in Barnsley. I was told about the important benefits personal budgets gave in disabled people’s day-to day lives, including allowing them to lead the sort of independent lives they wanted. Barnsley is part of the right to control trailblazer initiative that was extremely well put together under the previous Administration. We are continuing the initiative because it gives more flexibility to disabled young people to start their lives in a strong and independent way.

The Government are also conducting an important review of employment support for disabled people. It is vital that we understand that the majority of disabled

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young people aspire to be in employment. All too often that aspiration does not come to fruition—perhaps through an inability to navigate the system or to get the right support in place at the time. Earlier this year, the Secretary of State for Work and Pensions asked Liz Sayce to produce an independent review of employment support for disabled people. That review, which was published before the summer break, highlighted that disabled people want the same access to jobs as everybody else, and the best way to make that happen is to ensure that employment support is built around the individual. We are consulting on the proposals set out in the Sayce review and we will publish a response in due course. At the heart of Liz’s proposals is support for access to work, which, for young people in particular, can give the sort of personalised support that they need not just to get into work, but to stay in work and to give them the opportunity to live independent lives.

The hon. Member for Birmingham, Selly Oak mentioned the importance of supporting disabled former members of the armed services. One of the recommendations from the Sayce review was to set up a cross-departmental group to consider the employment of disabled people, and I have done that straight away because I thought that it was a superb recommendation. One of my colleagues from the Ministry of Defence will be on that ministerial group for the very reason that the hon. Gentleman talked about. I hope that that reassures him that I understand his point. Many young people who have served our country have come out with severe disabilities and they require that support. The ministerial group will also include a Minister from the Department for Transport. As hon. Members recognised, transport is important in ensuring that disabled young people have independence and are able to get into the workplace.

Some of our work is about ensuring that the profile of disabled young people is positive. The Paralympics

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has an important role to play in that, but we are also investing heavily in user-led organisations to ensure that disabled young people have strong voices in the future. We also have a strong policy of ensuring that more disabled people have access to elected office, which is an important way to get one’s voice heard.

I will answer as many of the specific points made in the debate as I can now, but I will write to Members if I am not able to answer their questions in detail. “Aiming Higher” is a three-year programme set up by the previous Administration. It includes short breaks and transition support, both of which the present Government are continuing to fund. The fruitful work under “Aiming Higher” is therefore continuing.

To reassure Members who raised the implications of the personal independence payment, let me say that I recognise that the transition from DLA to PIP at 16 is an important and sensitive matter. I have already begun meeting organisations and representatives to ensure that they have clear input into our work. I recently met a number of organisations, including CLIC Sargent, to help to inform our thinking on the qualifying period. I am sure that the debate on the matter will continue in the Lords. I will be looking at the needs of individuals in residential colleges in the same way as the needs of other recipients of DLA. I understand the arguments that hon. Members have made today on that point. We have done some detailed work on the order of migration from DLA to PIP. We will make sure that it is a fair process and it will be considered as part of the equality impact assessment.

I apologise for not being able to cover all of points hon. Members raised today. Suffice it to say, the work that the Government are doing puts support for disabled young people very high on our priority list.

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Judicial Scorecards

11 am

Mr Philip Hollobone (Kettering) (Con): It is a pleasure to serve under your chairmanship, Mr Bone; I thank Mr Speaker for granting me permission to hold this debate this morning; and I welcome the Under-Secretary of State for Justice, the hon. Member for Reigate (Mr Blunt), to his seat, from which he will listen to and respond to this debate on an issue that I want to raise not only on my own behalf but most importantly on behalf of my constituents.

That issue is what I have called judicial scorecards. The idea is that each judge and magistrate should be presented with an annual report of those people who have appeared before them and who have been sentenced by them, including details of any reoffending that has taken place since sentencing. Every year, each judge and magistrate would be given a simple and straightforward report that would detail the names of the defendants who have appeared before them, the crimes of which those defendants were accused and the sentence that was imposed, compared with the sentence that could have been imposed under the maximum terms set out in the relevant legislation. The report would also include details of any subsequent reoffending, not only for the crime for which the defendants appeared before the judge or magistrate but for other crimes that the defendants may have committed.

There is a fundamental gap in our criminal justice system. Judges and magistrates do their best, but as far as I can tell they never actually know what happens to those defendants whom they sentence. Judges and magistrates arrive at their sentencing decision, having taken into account the guidelines produced by the Sentencing Council; using their best opinion, they arrive at a decision as to what is the most appropriate sentence and that sentence is then imposed; but they never know subsequently whether or not that sentence was effective.

The same is true for police officers. I declare an interest as a special constable with the British Transport police. I often talk to police officers about the arrests they have made and I ask, “Oh, what happened to Joe Smith, whom you arrested for fare evasion?”, or, “What happened to Joe Bloggs, whom you arrested for burglary?” The officer will reply, “Oh, I don’t know.” I ask, “Do you have any idea what sentence he was awarded?” They reply, “No, I don’t know. My job was done. I arrested the offender and he was presented before the courts, or otherwise.” It is a great shame that police officers do not know that information; they are not informed about what happens to the people they arrest. The same is true for the judiciary, regarding the people they sentence.

Our criminal justice system would be improved if judges and magistrates knew more about what happened to the people they sentence. At one level, that is a very human thing. We are dealing with individuals who have broken the law and the judges and magistrates are doing their best to impose the correct sentence, but unless they are updated on whether or not that sentence was effective there will continue to be a big gap in our criminal justice system.

Mr Bone, you will know that 10% of criminals commit 50% of the crime in this country. You, I, the Minister and everyone in this House, as well as all of our constituents,

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are really concerned about the high reoffending rates in this country. When I asked the Minister about reoffending on 11 January, he provided some very helpful statistics to the House. I asked him:

“What the reoffending rates were for those sentenced to jail terms of (a) one year, (b) five years and (c) 10 years in the latest period for which figures are available”.

He helpfully replied:

“In 2008, the rate of reconviction within one year for adults discharged from custody after a sentence of less than a year was 61.1%; it was 31.0% for those given sentences of one to five years; 17.5% for offenders given sentences of five to 10 years, and 6.4% for 10 years or more.”

I then asked:

“Does the Minister agree that…the longer prisoners spend in prison the greater the chance of ensuring their effective rehabilitation before being released?”

He replied:

“We have to ensure that longer sentences are given to recidivist offenders and that we effectively rehabilitate people and break the cycle of crime through the proposals that we have presented in the Green Paper to drive that number down.”—[Official Report, 11 January 2011; Vol. 521, c. 147.]

I absolutely agree with that—we have to get those reoffending rates down. The Minister and I are in complete agreement that when 10% of criminals are committing 50% of the crime, those recidivist offenders must receive longer sentences, and yet, as we all know, the problem, again and again, is that those recidivist offenders are not being given the stiff sentences early enough in their criminal careers to deter them from a life of crime. Part of the reason why I am so enthusiastic about the idea of judicial scorecards is that they would help to alert judges and magistrates at an early stage in a criminal’s career that the criminal was not being given a sentence that was stiff enough.

I raised the proposal for judicial scorecards on the Floor of the House with the Minister’s boss, the Lord Chancellor and Secretary of State for Justice, on 28 June. I asked him:

“If he will take steps to ensure that judges and magistrates are informed of incidents of reoffending of each offender they have sentenced”.

He replied:

“We have begun work to improve access to local criminal justice statistics. For example, criminal justice and sentencing statistics are now broken down to court level and are available online. In terms of individuals, pre-sentence reports provide the court with details of a defendant’s offending history and compliance with any previous sentences.”

I then said:

“Although it is important to have judicial independence, surely it is not beyond the wit of the Department that each judge and each magistrate should be given an annual report card on the effectiveness of their sentencing decisions. If they have given out a string of sentences and the convicts have reoffended regularly, that judge or magistrate will know that something is wrong with their approach.”

He replied:

“As I said, we have begun work, and that is certainly an interesting suggestion. A massive amount of data would be involved in providing every judge and magistrate with full information about everybody they had ever sentenced”. —[Official Report, 28 June 2011; Vol. 530, c. 738.]

I was pleased that the Lord Chancellor and Secretary of State for Justice saw this idea of judicial scorecards as an “interesting” approach, but it sounds to me from

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his responses in June that the Ministry of Justice is already making some progress towards them. If statistics are being

“broken down to court level and are available online”,

we are going in the right direction, and I do not believe that it would necessarily involve a massive amount of data to tie up an offender’s criminal history with the judge or magistrate before whom they appeared. It would help to make the criminal justice system far more effective. At the end of the day, what my constituents want is judges and magistrates to award sentences that are effective in preventing reoffending. Introducing more transparency into the system to reveal whether judges and magistrates are awarding such sentences would assist the judges and magistrate themselves, and help to improve the effectiveness of our criminal justice system.

In the exchange on the Floor of the House that I mentioned earlier, another Member asked:

“There is considerable evidence that judges do not know enough about what happens once they sentence prisoners and those sentences have been disposed of. Will the Justice Secretary do what he can to increase the experience obtained by judges of those disposals and will he ask the Sentencing Council to advise, with a particular focus on what works in preventing offending and reoffending?”

The Justice Secretary replied:

“The Sentencing Council is already under a duty to provide information about the effectiveness of sentencing practice”.—[Official Report, 28 June 2011; Vol. 530, c. 738.]

It seems to me, however, that that duty to provide information about the effectiveness of sentencing practice is not specific enough to the individual judges and magistrates making the decisions. We do not have that far to go from the collection of statistics at a court level to doing it on an individual level for each judge and magistrate.

That is not to criticise judges and magistrates; it is to help them. We know that every time we stand up and speak in this place, and every time we vote, information is recorded for every member of the public to access online, to see whether we are turning up and representing constituents’ concerns. Every time a premier league footballer kicks a ball, the data are recorded and a scorecard is produced of his effectiveness throughout the season. I believe that the information is there in the court process, and it could be distilled in a simplified way in an annual report card, helping to inform judges and magistrates about whether they are making the right decisions.

Evidence about this sort of thing was presented to the Select Committee on Justice in 2009-10, and included in its January 2010 report entitled “Cutting crime: the case for justice reinvestment”. Michael Marcus, a circuit court judge from Portland, Oregon, presented evidence to the Committee about how this sort of approach can help the judicial system to be more effective because of the awarding of correct sentences. With yesterday’s welcome announcement from the Ministry of Justice about the introduction of television into courts, it seems that the Department is receptive to making our criminal justice system more transparent.

The Justice Minister will know, as will you, Mr Bone, that many of our constituents do not have the confidence they ought to have in our criminal justice system, because some of the sentencing decisions are not consistent. We have the recent example of the riots in London and

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other metropolitan areas in August, when the clerks to the magistrates seemed to be saying, “You don’t have to adhere to the guidelines that have been issued by the Sentencing Council; make the riots a special case.” My constituents would say, “The stiff sentences awarded to rioters should be the same as the stiff sentences awarded to everyone, not just in August 2011 but all the time.” There should be consistency in sentencing, and the judicial scorecard approach would help.

It comes down to the number of people we sentence to prison terms, and I think that my constituents’ view is that not enough criminals go to jail. There seems to be a myth in this country that we have too many people in prison, but I contest that that is absolutely not the case. If we look at the percentage of prisoners per 100,000 people, we are pretty near the global average, but if we look at the number of prisoners in relation to the number of crimes committed we do not have the highest prison population in the western world; we have the lowest. On that measure, compared with the United States, Canada, Australia and the EU as a whole, the UK has the lowest prison population of all. For every 1,000 crimes committed in the UK, we have about 13 prisoners, compared with about 15 in Canada and Australia, considerably more than 20 for the EU as a whole, and a whopping 166 in the United States. The country with the lowest prison rate—the UK—has the highest crime rate. Is that a coincidence? I do not think so.

We have more than 10,000 crimes for every 100,000 people. The country with the highest prison rate —the United States—has the lowest crime rate, with about 4,500 crimes for every 100,000 people. Canada, which is the country with the second lowest prison rate, has the second highest crime rate. The EU as a whole has the second highest prison rate and the second lowest crime rate. In my view, those are not coincidences.

The purpose of today’s debate is to be helpful to Her Majesty’s Government. I have come here with a constructive suggestion to make our judicial system more transparent. I thank judges and magistrates for the work that they do on behalf of us all, but they need assistance in the form of information about how effective their well-meaning sentencing decisions are. My constituents would like to see stiffer justice; they would like to see recidivist offenders put behind bars for longer, not only as a punishment but to aid their rehabilitation. I know that the Justice Minister is very sympathetic to that view because he has said so to the House. A judicial scorecard system need not be complex; it could be very simple and straightforward. Presenting each judge and each magistrate with an annual report about the effectiveness of their sentencing decisions would be a good thing for the criminal justice system in this country.

11.17 am

The Parliamentary Under-Secretary of State for Justice (Mr Crispin Blunt): It is a pleasure to serve under your chairmanship, Mr Bone, and particularly to reply to your near neighbour, my hon. Friend the Member for Kettering (Mr Hollobone), whom I congratulate on securing the debate and bringing up the matter of judicial scorecards.

I have, of course, noted the question that my hon. Friend put to the Justice Secretary during oral questions about whether steps would be taken to ensure that

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judges and magistrates were informed of incidents of reoffending of every offender they had sentenced. As my hon. Friend has made clear, he is aiming for feedback and public transparency for individual sentencers on the effectiveness of their sentencing practices, so that they are able to identify where something is wrong with their individual approach. I have listened to my hon. Friend very carefully, with my usual level of interest, and I concur with the Justice Secretary that his suggestion is interesting.

My hon. Friend knows from previous debates we have had on foreign national prisoners that I very much welcome his interest, and his providing a spur to the system to ensure that we are kept up to the mark in areas of public interest. However, I am going to have to be reasonably plain with him here: yes, the topic is interesting, but I am unsympathetic with the particular matter of individual judicial accountability by way of scorecards for judges.

Let me explain why. We need to acknowledge that this topic raises issues of significant constitutional importance, and I want to touch on those before I address some of the other matters that my hon. Friend mentioned. We might not have quite enough time for a full debate on the whole of penal policy, the issue that he raised at the end of his remarks, but if I end up having enough time, I will cheerfully move into that area.

The rule of law is, of course, the foundation of our democracy. For that tenet to be real, it is imperative that the independence of the judiciary is maintained. As my hon. Friend will recognise, that is particularly relevant in respect of sentencing decisions. Parliament has established the offence and sentencing framework that the judiciary apply in individual cases, and the courts have a duty to follow sentencing guidelines, which are issued by the independent Sentencing Council to promote greater consistency in sentencing while maintaining judicial independence. If courts depart from those guidelines in the interest of justice, they must explain in open court why they are doing so.

Although the sentencing decisions of the judiciary are rightly independent, they do not operate in an accountability vacuum. Checks and balances within the current system, such as the right of appeal, operate within the public domain. If certain sentences are seen as too lenient, the Attorney-General can appeal them. Equally, if it is felt that the final sentence is too harsh relative to the circumstances of the case, the defendant has the right to appeal. Like the hearings at which offenders are sentenced, such appeals are heard in public. The Sentencing Council has a duty to monitor the operation of its sentencing guidelines. Part of that involves considering the frequency and extent to which those handing down sentences depart from the guidelines, the factors that influence sentences imposed by courts and the effect of guidelines on consistency in sentencing and on public confidence in the criminal justice system.

More generally, the judiciary support efforts towards greater transparency that allow the public improved access to sentencing outcomes for individual crimes in their local area while bearing in mind any reporting restrictions. However, it would not be right to draw inferences about the performance of an individual judge—

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or, for that matter, anyone involved in bringing a case to court—based simply on whether the defendant goes on to commit further crimes. There is a risk that, if we introduced scorecards linking sentencing to reoffending outcomes, individual sentencing decisions would be criticised because the offender went on to reoffend. The sentence handed down is only one of many factors that affect reoffending.

Towards the end of his remarks, my hon. Friend used the phrase “simple and straightforward”. I must tell him that dealing with the rehabilitation of offenders—trying to act on all the levers that affect an individual, determining how easy it will be to rehabilitate him and considering all the desistance factors from crime—is far from simple and straightforward, and it does not simply involve the sentencing decision. The judiciary work in an environment where no two cases are alike and each sentence reflects individual circumstances unique to the offence, the defendant and the impact on the victim. Examining sentences in isolation from the particular circumstances of the case and the defendant’s mitigating or aggravating factors is almost certain to confuse those who were not present in the courtroom about why the final sentence was imposed. Many factors affect the effectiveness of a specific sentence in preventing reoffending. Some are unique to the individual; some are socio-economic. Given the unique nature of each case, it would be impossible for the effectiveness of sentences on reoffending to be deduced in a meaningful way. Any suggestion that such information could be provided would be misleading to the public.

My hon. Friend knows that tackling reoffending is a major priority for this Government. We are considering innovative ways to decrease reoffending rates. The Green Paper “Breaking the Cycle” set out a different approach to rehabilitation based on paying only for what works to deliver reduced levels of crime. Although I am sure that judges would welcome being informed of what happens to each defendant sentenced, if such a practice became regulated in the form that my hon. Friend suggests, it would be prohibitively expensive to administer and might well take resource away from the front line, particularly the probation service.

That said, judges and magistrates take a close interest in the outcome of the sentences that they pass and whether defendants go on to commit further offences. I suspect that, like me and no doubt you, Mr Bone, my hon. Friend welcomed the statements made by the recorder of Manchester during the recent trial of Regina v. Carter, when he was sentencing one of the earliest people to be brought to justice for the riots. In the robust terms of his sentence, the recorder made it clear in what peril people placed themselves by their outrageous behaviour in those circumstances. If my hon. Friend has had the chance to read it, he will have noted that, at the end of the judgment against one defendant in the trial, who was sentenced to oversight in the community, the recorder of Manchester reserved to himself the right to deal with breaches of that community supervision. He took the opportunity judicially to take a keen interest in how that defendant, who will be supervised by the probation service, got on.

That can happen in our system. It happens in the west London drugs court, for example, where repeat offenders who entered the system because of their addiction are brought back month by month to the same judge, as

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part of their sentence oversight, to see how they are getting on. It is possible within our system for judges to continue to exercise supervision of and interest in the people who come before them. Probation officers, also, often provide the courts with general information about outcomes, especially in relation to community orders, so that any judge or bench can make informed decisions about the suitability of a particular sentence for the offender before them.

In May this year, my Department published details of the relative effectiveness of different sentences in reducing reoffending. One can interpret such data in different ways, but those data showed that, after controlling for differences between offenders, those receiving community orders and suspended sentence orders have a significantly lower reoffending rate—8% and 9% lower respectively—than similar offenders who receive a short custodial sentence. My hon. Friend may say, “Indeed; then they should get a longer prison sentence rather than a short prison sentence or a community sentence”, but we must have some regard to the circumstances of the offence. He seems to be driving at the idea that first-time offenders should receive an exemplary sentence in order to get them into prison so that they can be rehabilitated. I am not sure that I am in precisely the same place as him on that matter. Overall, most people entering the justice system for the first time and receiving community sentences will have a significantly lower reoffending rate than other repeat offenders. We must find proper strategies, including prison at one level but also proper supervision between prisons, the probation service and the police, as is delivered through integrated offender management, in order to find a more effective route to desistance for such people. We are experimenting with a bunch of different pilots to see where to place the responsibility in order to deliver rehabilitation.

I think that my hon. Friend will welcome the fact that the Government also have a significant transparency agenda, which will go some way towards meeting the concerns that underlie his case. We are committed to increasing transparency in public services in order better to hold public services to account, increase trust in services through greater openness and encourage engagement between citizens and local services. The

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criminal justice system is no exception. Criminal cases are almost always held in public, and a great deal of information on court proceedings is already placed in the public domain.

However, we recognise that not everyone goes to their local court on a daily basis, so we are planning a significant release of individual court performance data in January that will enable local communities to find out how their local court is performing on a range of measures. The data will include, among other things, information on case timeliness in criminal and civil courts and the proportion of cracked and ineffective trials at the Crown court. That represents a significant step towards keeping the public informed of how the courts are operating in their area. When looking at the data, it will be important to bear in mind that courts’ performance is not a matter for the judiciary or court staff alone, but depends on all the elements of the criminal justice system.

Yesterday, the Justice Secretary announced his intention to legislate to remove the ban on cameras in courts. I am grateful for my hon. Friend’s welcome of that announcement. It is a cautious but important step that, taken with the data commitments, will open up the courts more widely. In addition to the data that we plan to publish on court performance, we have taken several other notable steps to provide the public with information on how the criminal justice system works locally. In October last year, we released court-level sentencing data for each court for 2009, and in May this year, we released data covering 2005 to 2010. In January this year, street-level crime information was made available to the public via the Police.uk website. It has been very popular, with 430 million hits on the site since the launch. In November, we will publish individual offender-level sentencing data by court, so that the public will be able—

Mr Peter Bone (in the Chair): Order. I am sorry to interrupt the Minister. It has been a splendid debate.

11.30 am

Sitting suspended.

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Coeliac Disease

[Dr William McCrea in the Chair]

2.30 pm

Gordon Banks (Ochil and South Perthshire) (Lab): It is a pleasure to serve under your chairmanship, Dr McCrea, on an issue that is close to my heart or, perhaps I should say, to my small intestine, because I suffer from coeliac disease. I am also a member of Coeliac UK.

Coeliac disease causes damage, through gluten, to the surface of the small intestine and results in a reduced ability to digest and absorb food. This causes malabsorption of essential nutrients such as iron, folic acid and calcium. In infants and children this can result in health problems such as faltering growth, unexplained anaemia, chronic diarrhoea and abdominal distension. In childhood, the presenting features are often relatively subtle and it is much easier to diagnose if coeliac disease is on the radar with a GP at an early stage. For adults, coeliac disease often presents with symptoms of tiredness, reduced appetite, weight loss, mouth ulcers, abdominal bloating, diarrhoea and anaemia.

Many people with coeliac disease present with apparently mild or non-specific complaints, but from their perspective these complaints are anything but trivial. The type and degree of symptoms with which an individual presents are not always directly related to the gut damage that has been done. It can therefore be difficult to secure a diagnosis, and patients may present to primary care on a number of occasions with a large range of symptoms before any diagnosis is made.

Health risks linked to untreated coeliac disease include poor growth in childhood, osteopenia, osteoporosis, infertility, and an increased risk of non-Hodgkin’s lymphoma, Hodgkin’s lymphoma and intestinal malignancy. Other auto-immune conditions are also associated with coeliac disease. The prevalence of auto-immune thyroid disease in people with coeliac disease is up to 7%, and the prevalence of type 1 diabetes is between 2% and 10%. With all these complications, it is hard to understand why coeliac disease is not routinely checked for.

People can endure long periods of suffering before they are diagnosed, and the most recent research shows the time from the onset of symptoms to diagnosis as a lengthy 13 years, during which people are at risk of contracting a wealth of other conditions. One in 100 people in the UK have coeliac disease, but only 10% to 15% of them are clinically diagnosed. An estimated half a million people in the UK are living with the condition but do not know it. That is too many people whose quality of life is being diminished by years of ill health. Many people are living with a misdiagnosis of irritable bowel syndrome or other gut conditions, and receiving treatment for those conditions that is not effective. That costs the NHS money, which we are told it does not have, and which is wasted because of the lack of a quick and accurate diagnosis of the gut condition.

Dame Anne Begg (Aberdeen South) (Lab): Does my hon. Friend agree that it is possible to diagnose or find out whether someone has a gluten intolerance through a relatively simple blood test? Kits can be bought at a pharmacy, so there should be no excuse for failing to pick up coeliac disease earlier in many patients.

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Gordon Banks: My hon. Friend is perfectly correct. The diagnosis for coeliac disease, or certainly the first part of the diagnosis, is extremely simple—it requires a simple blood test. In fact, as a coeliac sufferer, I never received a gut biopsy test, because my blood test was so overwhelmingly positive. It is relatively easy and the implementation of, or access to, these new tests, which are available in chemists, is a step in the right direction.

Simple though that may be, too many GPs do not recognise coeliac disease, never mind test for it, which is something that we urgently need to address. As I have indicated, it is first tested for via a simple blood test, followed by a gut biopsy. The blood test in itself is inexpensive. My hon. Friend has mentioned a test that the public can buy for only £20 in pharmacies. Within the health service, there is obviously an economy of scale.

I would like to describe some of the disease’s impacts in more detail, because it would be better for the Minister to hear it from the horse’s mouth rather than read about it on pieces of paper. When gluten is present in our diet, it destroys the villi in the small intestine. They are eroded so that the small intestine becomes basically like a garden hose. In good Scottish parlance, Dr McCrea, your food just scoots through it. As I have said, that prevents the absorption of nutrients, and the knock-on effects that that can have on young children and the elderly mean that this in itself—the pure lack of nutrients—can be life-threatening.

Gluten is a protein found in wheat, barley and rye. Although some might think that it is easy to avoid consuming such products, I would challenge them to try to do so for the rest of their lives. A gluten-free diet may sound like the latest Hollywood fad, designed to make a sylph-like body, but if that was the case I would want my money back, because it has not done that for me. The point that I am trying to make is that, while continuing to take gluten when diagnosed with coeliac disease has serious consequences for one’s health, diagnosis also comes with serious lifestyle trade-offs.

Imagine a busy day at work where all one wants to do is grab a quick sandwich from the cafeteria. I am sure that the Minister has eaten a sandwich at his desk many times. It cannot be done. Imagine the end of a long day at work when one would rather grab a take-away than cook dinner at home. That cannot be done either. Imagine an invitation from friends to go for a meal at an Italian restaurant. Although the pizza and pasta look nice, they just cannot be eaten. One may want to go to the pub and have a bottle of beer with friends, but that cannot be done either. One becomes an expert at reading the label on every piece of food that is bought, from crisps, sweets to soups—literally everything. Even Marks and Spencer’s diet coke has gluten in it.

I do not want to say much more about food lines at this point, but I want the Minister to think about the price of a loaf of bread. Tesco’s website states that an 800-gram loaf of white sliced bread can be bought for 47p, which is 6p per 100 grams. What does a loaf of gluten-free bread cost? It costs £2 for 400 grams, which is 50p per 100 grams—833% more. I will leave the Minister with that thought and return to it later.

Dame Anne Begg: I am glad that my hon. Friend has picked up the issue of gluten-free food, because I am also on a gluten-free diet, which is why—surprise,

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surprise—I am present at this debate. It is very expensive for people on gluten-free diets, but will my hon. Friend acknowledge that access to gluten-free products has improved immensely? Almost every supermarket now has some gluten-free shelves. I have seen a remarkable difference in the availability of gluten-free food during the four years in which I have been on a gluten-free diet. However, part of the problem is that the ready-meal versions of foods to which one would not add gluten if they were being cooked at home often include gluten, which makes it difficult for those who lead busy lives and do not have time to cook.

Gordon Banks: My hon. Friend is right. The range has improved, as indeed has the quality of food. In some ways, perhaps I was fortunate to be diagnosed in the past 10, 12 or 13 years. I am glad that I was not diagnosed 25 years ago, because I did not have to eat the rubbish that one had to eat 20 or 25 years ago to try to survive on a gluten-free diet. There is more choice. That is another issue about which we have concerns following the introduction of new regulations. We are worried about how supermarkets will react, because everything that they do is driven by the desire and the need to make profit at the end of the day.

I want to talk about my own experiences without being too graphic. In the early 1990s, feeling unwell I went to my GP, who eventually referred me to a specialist. After having cameras inserted everywhere, I was diagnosed with duodenal ulcers and put on medication. Unsurprisingly, that did not help much. I was then diagnosed with the catch-all complaint of irritable bowel syndrome. I endured a number of years where my routine comprised of largely being locked in the toilet until about 11 o’clock in the morning, and I had a rash on my face that looked like I had exfoliated with 80-grit sandpaper. I returned to my GP after a number of years and he referred me to another specialist who, simply on reading my notes, said, “I think I know what’s wrong with you. I think you have coeliac disease,” and he was right. If my memory serves me right, his name was Dr Wright and he turned out to be a bit of a wizard in the diagnosis of coeliac disease in the Forth valley and Scotland. I and others will be eternally grateful to him for that.

Hon. Members might be wondering why there has been a personal lesson from me and whether it is designed to foster sympathy. No, it is not. It is designed to highlight the fact that, as I have said, the average time for diagnosis in the UK is 13 years. That is sometimes 13 years of not being able to work; 13 years of worry about dying; 13 years of someone worrying that their wife thinks they are dying; and 13 years when the only people who are happy are the manufacturers of toilet roll. Part of the purpose of today’s debate is simply to stress that that is not good enough. Much more needs to be done to recognise coeliac disease and the array of symptoms in people presenting to a GP. They should not be told what my GP said to me when I returned to him after being diagnosed: “Oh coeliac disease. I never think of that. That’s two I have missed this month.” That is not good enough.

Why is it important to improve diagnosis times? It saves being given expensive drugs for other complaints that are totally unnecessary and, as I said, it saves a sufferer from not being able to lead anything like a

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normal life in all areas of work, rest and play. Early diagnosis reduces the risk of intestinal cancer, bowel cancer and osteoporosis among other things. In effect, early diagnosis saves not only lives, but money.

There is no cure for coeliac disease, which leaves the NHS with the task of managing sufferers’ condition. For me, diagnosis happened in my early 40s. However, that is not good enough and there remains a lack of guidance in the area. In 2009, the National Institute for Health and Clinical Excellence published guideline 86 on the recognition and assessment of coeliac disease. That short clinical guideline offers best-practice advice on the recognition and assessment of coeliac disease and the care of those undergoing diagnosis. Although that guideline was a great result for people with coeliac disease, it is not mandatory to follow it and more needs to be done.

Coeliac UK—the national charity for people with coeliac disease—has worked with NICE on that guideline, forming part of the guideline development group. It is anxious to take the matter further for very good reasons. Gastrointestinal disorders account for about 10% of NHS clinical work, and there is evidence that they are not always well managed in general practice. Few quality criteria are available to guide the management of such disorders. The treatment of coeliac disease requires support, with a gluten-free diet, the monitoring and management of symptoms and the screening and management of complications and other associated conditions for the rest of the patient’s life. There has been huge oversight on the part of the Department of Health, as GPs are struggling to meet targets for diagnosing conditions on the quality and outcomes framework and, with no points for gastroenterological conditions, there is an enormous gap.

The QOF is a key way to ensure that GPs are incentivised and is a means by which we could start to see an improved and accelerated rate of diagnosis and find the 500,000 people who are living with the condition but who do not know it. Sadly, a number of applications to QOF have been unsuccessful, which is not good news for people with coeliac disease.

Mr Kevan Jones (North Durham) (Lab): There is also some evidence that the condition is hereditary, so testing family members of a diagnosed coeliac is an obvious way to identify such individuals. If doctors diagnose somebody as coeliac, would my hon. Friend suggest that other family members should also be tested?

Gordon Banks: I do and I will. I shall come on to that later. My hon. Friend is perfectly right.

Moving back to the QOF, approaches for groupings of gastroenterological conditions are being made. Those are important because coeliac disease is four times more prevalent among patients with clinical presentation of IBS, as in my case, than among the non-IBS population. There is also a NICE guideline that recommends the screening of patients with type 1 diabetes, but we do not know whether that screening is taking place. Without more stringent ways to incentivise and measure, we will not know.

As my hon. Friend says, screening family members when coeliac disease is present in the family is also a key concern. He might be interested to know that prevalence rates increase from one in 100 to one in 10 when a first

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degree relative has the condition. GPs should be screening, but we know that that is not happening routinely. I know full well is has not happened in my family, but it should. Coeliac disease is also more prevalent in people with other auto-immune conditions such as type 1 diabetes, as I have mentioned, and auto-immune thyroid disease. Hence, antibody testing for family members where coeliac disease has been diagnosed and for patients with autoimmune conditions is recommended by the NICE coeliac recognition and assessment guideline.

The Minister will be glad to hear that improving diagnosis is only one part of the answer; we also need improvement in the management of the condition after diagnosis. There are established clinical guidelines from, among others, the British Society of Gastroenterology, the British Society of Paediatric Gastroenterology, Hepatology and Nutrition and the Primary Care Society for Gastroenterology, which recommend an annual review for patients with coeliac disease and, indeed, dermatitis herpetiformis. Although that has traditionally been undertaken in specialist clinics in secondary care—or, indeed, not undertaken at all—it is an activity increasingly seen as suitable for primary care. We know of locally enhanced services where practices provide a structured annual review, but there are not enough of them. We would like annual reviews to be put more firmly into place to ensure that patients are complying with the gluten-free diets and safeguarding against potential associated conditions.

The improving management in gastroenterology—IMAGE—project provides a model for the development of quality markers for chronic disease management including coeliac disease. The project has developed patient-centred quality criteria based on current guidelines and has already been a source of a range of published papers, but health inequality is also a key concern in this area. Research has shown that coeliac disease is twice as likely to be diagnosed for the least deprived quintile of socio-economic groups than for the most deprived; it is usually the other way around. There is more work to be done to understand those results, but the working hypothesis is that the disease is under-recognised in the most deprived socio-economic groupings as a result of the wide-ranging nature of symptoms and, indeed, access to health care.

Where do we go from here? The NICE guidelines on recognition and assessment of coeliac disease showed that the “no diagnosis” strategy is the least effective strategy because of the low quality of life of patients and the costs resulting from undiagnosed coeliac disease. In applying accepted NICE thresholds, any testing strategy was shown to be more cost-effective than no testing strategy, despite the costs of the tests. Work also indicates that serological testing for coeliac disease in patients with symptoms such as irritable bowel syndrome, as I mentioned earlier, is, indeed, cost-effective.

The new NHS reforms may provide some opportunities for people with coeliac disease and provide different ways for them to be catered for within the new framework. Perhaps the Minister can say whether coeliac will be considered for one of the 150 quality standards soon to be rolled out, so that we can see diagnosis rates start to improve.

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As I have said, once diagnosed, the only way forward is to manage the condition through a gluten-free diet. Many people do that through relying on prescriptions as the foundation of their condition management. On prescriptions, as the NHS looks to drive costs down during the past 12 months, a number of PCTs have placed strict limits on what can be prescribed for patients with coeliac disease. Those cuts, which include a blanket removal of almost 200 products prescribed to patients in Surrey, East Sussex and Kent, appear to be a knee-jerk reaction to costs linked to gluten-free foods on prescription. At the same time, they potentially threaten the long-term health of people with coeliac disease.

Hon. Members may have seen that, in July, a story broke in the national press that gluten-free bread on prescription was costing the NHS in Wales £35 a loaf. The story came from misinterpreted data following a question posed in the Welsh Assembly. Similar anecdotal figures had been used earlier in the year by medicine management teams linked to the south-east strategic health authority. Although the figures given in the national media were incorrect, sadly the story missed the real point about some high administrative charges added to a very small number of products, which appear to be unjustified.

Dame Anne Begg: People with coeliac disease rely on a gluten-free diet, and the fact they can only get gluten free through a prescription suggests that management of the condition is seen very much as a medical model rather than a disability model, which is what normally happens when someone has a chronic condition and they have learned to live with it. Instead of providing gluten-free food through a prescription, might not the Government consider making it one of the criteria that would allow people to get the lower care rate of disability living allowance? That would give people the money in their hand and give them the choice to buy off the shelf, particularly now that most supermarkets have a range of gluten-free goods available. It is more expensive, so it would be an extra cost of their disability, but that might be a cheaper and better solution for the Government. I wonder whether Coeliac UK, or anyone else, has thought of that.

Gordon Banks: In fact, Coeliac UK, myself and, I think, my hon. Friend the Member for North Durham met Ministers in the previous Government to discuss that very issue. It does not seem to be something that Governments want to embrace, but my hon. Friend the Member for Aberdeen South (Dame Anne Begg) is right—there are other ways to skin the cat. I will discuss those when I talk about the method of prescribing.

Overcharging or excessive charges within the NHS prescription process need to be investigated at national level to hold NHS suppliers to account. It is crucial to patients and to the taxpayer that we implement a cost-effective service that gives the NHS real savings and enhances provision to patients.

As I have said, people with coeliac disease must avoid all foods that contain gluten, a protein found in wheat, rye and barley. Wheat is the most widely consumed cereal in the UK, so a gluten-free diet requires the elimination of staple foods including bread, flour, pasta and biscuits. Gluten is also found in cakes, pastries and in foods that one might not expect, such as many

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sauces, soups, soy sauce, ready meals and some cooked meats and sausages. Removing wheat, barley and rye-containing ingredients from the diet can therefore result in a restricted and potentially unbalanced nutritional intake. People with coeliac disease may obtain gluten-free specialist foods from a wide variety of sources including supermarkets, health food shops, mail order and, as we have mentioned, on prescription, but some of the gluten-free brands that are available on prescription are not available from other outlets. It is extremely important that health care professionals provide advice, support and information to ensure that people with coeliac disease have a nutritionally balanced and varied gluten-free diet. Diagnosis should not lead the patient down the path to other unnecessary problems.

Coeliac UK, the Primary Care Society for Gastroenterology and the British Dietetic Association have written guidelines to help health care professionals in prescribing gluten-free foods. The guidelines define different categories—children, male adults, pregnant women and the ages of patients—allocating each a number of units per month per group to maintain adequate nutrition. Each gluten-free product is assigned a number of units: for example, a 400-gram loaf of gluten-free bread is one unit and a 800-gram packet of gluten-free spaghetti is two units. The recommended amount of gluten-free staple food, in units, is based on the total carbohydrate intake providing approximately 50% of the energy intake, with gluten-free foods on prescription making up 15% of that total.

As I have said, coeliac disease is unique in that a specific and effective treatment is available in the form of a lifelong exclusion of gluten from the diet. Those who adhere strictly to a gluten-free diet can lead full, active lives—they can even become Members of Parliament—and are protected from the development of health risks associated with the untreated condition. Research by Hall and Rubin in 2009 shows that among adult patients with coeliac disease, adherence to a strict gluten-free diet is variable, with compliance ranging from 36% to 96%. The evidence also shows that following a gluten-free diet is particularly difficult for those patients with no obvious symptoms. Medical experts and research agree that access to a range of gluten-free food on prescription is important to support people with coeliac disease and to help them to maintain their nutritional needs.

Research undertaken by Coeliac UK, among the charity’s membership in 2006, suggests that access to gluten-free food on prescription is regarded as the most important factor for people with coeliac disease in terms of adherence to a gluten-free diet: nearly 87% cited it as an important factor in maintaining a gluten-free diet and 47% cited it as the single most important factor. A further survey on gluten-free prescribing undertaken by the charity in 2011 among 400 people with the condition showed that 60% of respondents rated gluten-free food on prescription as the most important way of obtaining gluten-free foods for their diet. Although people with coeliac disease have varying requirements for gluten-free foods, depending on their age, gender, occupation and lifestyle, having a wide range of specially formulated gluten-free products available on prescription and easily accessible is vital to promote strict dietary compliance.

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On the cost of the gluten-free diet to the patient, having the disease does not entitle people to be exempt from prescription charges. People with coeliac disease in England are charged £7.10 per order unless they have a medical exemption due to different health conditions, age or financial circumstance—although they can use a pre-payment certificate, of course. Research from King’s College London earlier this year found that there is limited availability of gluten-free foods in different stores and that they are more expensive than their counterparts—I refer the Minister to my Tesco bread comparison. That finding has been supported anecdotally by stories from Coeliac UK members, who often report having to travel to more than one supermarket to complete a shopping trip owing to the limited range of foods in their local stores. The problem is noticeably worse for people living in rural communities, so it is not solely about price; access is also a factor. If one cannot travel to a range of supermarkets for shopping, the lack of a bus service may impact on health.

In the past three years, Coeliac UK has undertaken research into cost comparisons between gluten-free and gluten-containing foods on the high street. On average, gluten-free foods have been found to cost three to four times more than their gluten-containing equivalents. Some foods, such as gluten-free pitta bread, cost seven times more. Again, I refer the Minister to the Tesco bread comparison, to which we will keep coming back. For the average shopper, that can mean a difference of approximately £400 a year for staple foods such as bread, flour and pasta alone. Evidence suggests that people on lower incomes, or families with multiple members with coeliac disease, already struggle to maintain a gluten-free diet and that without access to gluten-free prescriptions their long-term health could be put at real risk.

I understand that there is a number of reasons for the higher cost of specialist gluten-free foods; they include the expense of buying alternative grains to replace wheat, product development, nutritional composition by fortifying with other items such as calcium and the considerable need for food science. However, that does not change the impact on the individual. It is therefore vital that gluten-free foods remain on prescription, as they have done for the past 40 years.

The Advisory Committee on Borderline Substances approves a number of products, such as foods and supplements, that can be available to patients on prescription. When a manufacturer applies to have its product available on prescription, it needs to have it approved by the ACBS. The ACBS will look at the type of product, its nutritional value, cost, and even its wrapping and the words written on the wrapping. The cost covers the cost of the product, plus postage and packaging. That cost should be the total cost to get it from the factory to the pharmacy. Slightly fewer than 200 products are currently approved by the ACBS for people with coeliac disease. They include a range of staple products, as outlined earlier, some ethnic foods and products such as biscuits, if they are necessary for an elderly person’s diet or someone who needs a high sugar intake.

Following an internal review earlier this year, the ACBS has agreed that in future it will consider only products that are considered to be dietary staples, including plain breakfast cereals, breads and rolls, crackers and

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crispbreads, flours and bread mixes, pastry mixes, pasta, pizza bases and xanthan gum. That list will become a very firm base to be adhered to. It is, however, worth spending a moment or two on the supply chain for these prescriptions, because that is where I will bring the Minister back to the cost implications that I spoke about earlier.

The supply chain is made up of a web of individual contractual agreements between manufacturers, wholesalers and other distributors and pharmacists. Those individual contracts are not regulated by the NHS. The end price to the NHS is agreed with the manufacturer by the ACBS, and that is the so-called drug tariff price. The end price should include any related transport costs—a point reinforced by the ACBS earlier this year. The costs associated with gluten-free prescriptions hit the NHS when the pharmacist reclaims them, and there are two potential components: the drug tariff price agreed by the ACBS and what are called out-of-pocket expenses, which are very interesting.

The headline costs to the NHS of gluten-free products arise largely from the impact of those out-of-pocket expenses claimed by pharmacists as a result of additional charges invoked by wholesalers and distributors for what is called non-standard supply. For example, the product might not be stocked as a standard item by the wholesalers, it might require ordering from an intermediary, or it might be treated as special because it has a short shelf-life, such as a fresh product has. Those additional costs remain relatively uncontrolled, however, because there is no specific agreement on how much may be charged by the wholesaler. The pharmacists will need to reclaim those out-of-pocket expenses if they are not to be disadvantaged.

The application of such costs varies considerably and depends on the individual contracts up and down the supply chain. It might be difficult for a manufacturer to control the addition of such costs further down the supply chain, just as it might be difficult for pharmacists to control such costs when they are tied to a particular wholesaler. Such practices may be seen in relation to other products supplied to the NHS, and might be increasing as the NHS strikes harder bargains on the supply of high-value contracts for more common treatments. The impact of such practices is not currently understood, so it would be useful if the Minister today commits to a robust assessment of the real costs to the NHS of additional charges associated with the supply of products—not only gluten-free ones—and to instructing relevant bodies to enter negotiations with the supply chain to explore the possibility of reducing costs overall. That might even involve looking at the drug tariff price.

We all recognise the financial constraints currently faced by PCTs and health boards throughout the UK, but responding to those constraints by eliminating access to gluten-free foods is potentially damaging to overall patient health, while there are more proven effective ways of managing the costs of gluten-free prescribing. The NHS should not be subject to excessive charging, but nor should patients be left unnecessarily paying the price of additional costs; instead, we need to be smarter.

We can be smarter by using local enhanced service contracts. Pharmacy-led prescribing schemes allow gluten-free foods to be supplied directly from community

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pharmacies, thus bypassing the GP. They allow commissioners to standardise prescribing habits, which would address NHS concerns about excessive and off-tariff prescribing. Furthermore, they might help to tackle handling charges by placing limits on what charges may be reclaimed by pharmacists without compromising patient satisfaction.

Looking for ways to streamline the system is not new. In 2001, the Cabinet Office regulatory impact unit published a report on reducing GP paperwork. It recommended that GPs should no longer need to issue prescriptions for gluten-free foods; instead, patients with coeliac disease should be able to obtain supplies from a pharmacy. The proposal was supported by the Royal College of General Practitioners, Coeliac UK and the Pharmaceutical Services Negotiating Committee. The National Pharmacy Association has developed a toolkit for NHS commissioners outlining the business case for an alternative supply route for gluten-free foods on prescription. That is due to be launched this month and is supported by the Primary Care Society for Gastroenterology and the Dispensing Doctors’ Association. The toolkit is being promoted to all PCTs, health boards and GP commissioning groups, which are urged to implement the pharmacy-led schemes as soon as possible—but why?

The potential benefits of a pharmacy-led prescribing scheme are many and include: improved dietary compliance and health outcomes, as good dietary adherence is aided by the ease with which patients can obtain appropriate amounts of gluten-free products on prescription; and a reduction in the annual cost per patient for the supply of gluten-free foods. According to surveys of costs from Northamptonshire and Cumbria, savings of between 20% and 40% are possible in the ingredient cost of gluten-free foods. Members might be interested to note that the annual ingredient cost in England for the provision of ACBS-approved gluten-free foods in 2010 was approximately £28.6 million, yet gluten-free foods comprised only 0.32% of the total net ingredient costs of all prescribed products. However, the introduction of a pharmacy-led scheme in England for gluten-free products alone would be expected to produce savings of between £5 million and £11 million in the first year.

Another benefit would be the release of clinical time. In 2002, the Royal College of General Practitioners estimated that the initiative, had it been implemented at that time, would have saved 209,000 appointments or more than 20,000 GP hours of clinical time. In a survey undertaken by Coeliac UK, GPs have confirmed that a change to pharmacy supply eases demands on their time. Also, overprescribing could be prevented by application of national guidelines, as all pharmacy-led schemes are based on the 2004 prescribing guidelines. By following a set monthly allowance, it is possible to prevent individual or nutritionally unsuitable prescribing—that benefit was identified in the roll-out of the Cumbria PCT pilot scheme.

Better cost control could be another benefit, as the pharmacy-led schemes provide better individual patient cost control because the pharmacy supply schemes are based on a system of units of gluten-free foods linked to the patient’s dietary needs, rather than on patient-led prescribing by GPs using form FP10. There is a need for better cost control as more people with coeliac disease are diagnosed, in accordance with NICE recommendations.

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More diagnosis will itself bring a subsequent risk to GP prescribing costs and time, both of which could be better managed in pharmacy-led prescribing.

A pharmacy-led scheme would also be in line with the 2008 White Paper, “Pharmacy in England: Building on strengths—delivering the future”, in that it would reduce the time-consuming administration of repeat prescriptions in GP surgeries; contribute to the range of clinical services offered by pharmacies, in particular to those with a long-term condition; expand patients’ access to treatment, making better use of pharmacists’ skills; and improve the patient experience, giving more rapid access to gluten-free foods by eliminating the need for GP signature of repeat prescriptions, and allowing more flexibility as products are launched or removed from the market.

Feedback from GP, pharmacy and patient stakeholders in Cumbria and Northamptonshire has been overwhelmingly positive. Cumbria, a county I know well, having lived there as a child, has been at the forefront of GP commissioning and, as such, has been able to assess pharmacy-led prescribing from two different perspectives: that of a GP in a clinical practice and that of a commissioning GP with budgetary responsibility. Dr Fayyaz Chaudhri, a GP in Maryport, said:

“I have been involved with this scheme in Cumbria for a number of years and have first-hand experience of the benefits to both patient and GP. There is a real issue to address in ensuring the supply of gluten-free foods. It is cost-effective for NHS, patient and taxpayer, and I believe that this toolkit needs to be rolled out across the country.”

To sum up on prescriptions, I would like the Minister to take note of the price of the Tesco bread I referred to earlier—he wrote it down, I think. Many people cannot afford to pay 800% more for a loaf of bread, more than 100% more for spaghetti, or five times as much for a bag of flour. Prescriptions are important to maintain the health of coeliac sufferers. Evidence from Coeliac UK already suggests that those disadvantaged by such costs will find maintaining a gluten-free diet a real challenge and their heath might suffer in consequence. Experts in gastroenterology have confirmed that access to gluten-free food is an essential part of the treatment for sufferers of coeliac disease. I urge the Minister to look at smarter ways of achieving it and I condemn rash reactions such as withdrawing prescribing, as we have seen in some places.

Le me say a word or two about eating out, to reinforce what I touched on earlier. I know that it is not the Minister’s direct responsibility, but he will no doubt feed it back to the appropriate Minister—though he looks puzzled. Currently, eating out is a lottery for people with coeliac disease. The gluten-free diet is not well provided for in the catering industry and dealing with the issue would have significant impact on the quality of life of people with coeliac disease. Although the industry is responding to some degree to the needs of people on a gluten-free diet, provision is not uniform.

Those who eat out often have to draw attention to themselves, asking to see the chef or the list of the ingredients that make up the meal. Often, they are faced with a member of the front-of-house team who has no idea what they are talking about, or they are passed to the chef, who might have a better understanding of their diet, but not necessarily. Catering for a gluten-free

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diet is not uniformly included in training for chefs and front-of-house staff, and including such training would better equip staff as they move forward in their careers.

Many people with the condition feel that eating establishments lack knowledge and understanding when it comes to offering safe, gluten-free food, so they stay in, keeping their health and money safe at home. We have not discussed cross-contamination, but it is a serious concern, and the nature of the catering industry, with its high staff turnover, can make trusting others with one’s diet difficult. As I said, many people therefore take the easy way out and stay at home.

People with coeliac disease represent 1% of the population, or 600,000 people, but the loss to the catering industry is greater, because coeliacs drive the venue decisions of the people they eat with. Research among more than 3,000 people with coeliac disease found that those who eat out do so with a minimum of two to three other people. With an average spend of between £10 and £20 per head, each coeliac meal is technically worth £60.

As I said, however, fears about finding safe, gluten-free options keep thousands of people at home. Some 62% of people suffering from coeliac disease eat out once a month or less, while only 38% eat out once every two weeks or more. When people were asked how often they would eat out if more safe, gluten-free options were available, the figures nearly reverse, with 74% saying they would eat out once or more every two weeks, and only 26% saying they would eat out once a month or less.

In these difficult times for the UK economy, harnessing that untapped market has obvious potential financial benefits for the catering sector. More than 40 pubs and restaurants nationally close every week, and coeliacs represent a huge market, which the hospitality sector cannot afford to miss. People with coeliac disease want to eat out more often, and they would be ready and willing to spend their money, if only they felt confident about gluten-free provision. The catering industry needs to help, and with new EU regulations coming into force next year requiring a reduction to 20 parts per million of gluten for food to qualify as gluten free, it needs to do more to convince coeliacs that it is aware of the law and working within it.

Being elected to this place in 2005 was a challenge to me in more ways than one, given that I was diagnosed with osteoporosis during the election campaign and that I came down here not knowing whether I would be able to eat between Monday and Thursday because of my coeliac disease. However, as a result of contact with Coeliac UK, and with the help of others, such as Lord Bilston and my hon. Friend the Member for North Durham, it was possible to constitute the all-party group. That was done not only to help coeliacs in Parliament, but to allow parliamentarians to use their personal experiences of, or interest in coeliac disease to help to raise the issue directly with the Government, and I am happy that we have been able to do that further today.

I am glad to see both my hon. Friends in their places, and I am sure my hon. Friend the Member for North Durham will not mind me outing him as a fellow diagnosed coeliac. However, there is a serious point here. As I said, one in 100 people in the UK suffer from coeliac disease, but about 500,000 of them have yet to

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be diagnosed. While some of us in the Room share the unenviable label of being among the few MPs to have been diagnosed with coeliac disease, there is a good chance that other Members also have it—they just have not heard the good news yet.

We last debated issues related to coeliac disease in February 2007, so today’s debate is long overdue. I am grateful to have this opportunity to lay my thoughts and hopes before the Minister, and I look forward to hearing his comments in a minute.

Dame Anne Begg: Before my hon. Friend finishes, I should pay tribute to the work that he has done to make sure that the catering outlets in the House of Commons offer a gluten-free alternative on every menu. That has made life a lot easier for those of us who are trying to follow a gluten-free diet. More restaurants are following that example, but he is right that eating out, which is often part and parcel of an MP’s job, is difficult. However, the House authorities should be congratulated.

Gordon Banks: They should, and I thank my hon. Friend for her comments. We are just waiting for one of us to be elevated to the House of Lords, because there are some difficulties over there.

I might be pushing my luck, but I would like to invite the Minister and his officials to come to a future meeting of the all-party group to talk a little more about what the Government are doing and to hear first hand from non-parliamentary coeliacs, because many of the issues that were relevant to the February 2007 debate are still relevant four years later.

I have talked about the challenges created by eating out. Research from Coeliac UK has shown that almost seven out of 10 people with coeliac disease prefer to eat at home, rather than to go out for a meal. I happen to be making one of my irregular sorties to a restaurant on Friday night, so I hope that the staff at Aldo’s in Alloa can cope with me. However, this is not just a social problem. Members of the all-party group will be aware of cases that have been brought to us in which sufferers of coeliac disease have been prevented from joining the police or the Army because of their condition.

Sufferers are looking not for sympathy, but for action, understanding and knowledge. Too often, that knowledge is missing, even among the professionals. I therefore return to some of the points I made earlier. We need to ensure that there is much wider knowledge and understanding of coeliac disease among the public and, perhaps more importantly, among the medical and catering communities. We need that knowledge not only among catering or hospitality staff in local restaurants or hotels; staff in hospitals need a greater understanding of the illness, too.

Let me give an example. A friend of mine who is a social worker told me about an elderly woman from his care home who had been hospitalised. Despite staff from the care home advising the hospital of her need for a gluten-free diet and of her coeliac condition, her social worker walked into the hospital one day and found her sitting up in bed eating toast. If we cannot get this right in hospitals, what chance do we have in the wider community?

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We have talked about the economic impact on the hospitality sector, but there is a wider economic issue. For example, children who are off school unnecessarily may face educational challenges that impact on not only their schooling but their employability in later life. Similarly, having part of the work force stuck in the toilet rather than sitting at their desks is clearly something that the country needs to avoid. We all know that a healthier country is a more productive country. Indeed, figures obtained by Coeliac UK show that pre-diagnosis coeliac sufferers took an average of 21 sick days off per year, whereas those who had been diagnosed took an average of only three days off per year.

Work carried out by Coeliac UK suggests that the average age for diagnosis is 41, and the average time taken for diagnosis is 13 years. A great deal of work is therefore required to reduce those unnecessary years of suffering and the worry that accompanies them. There are a number of key messages I want the Minister to take away from the debate—I am sure he already knows them, but I would like to reinforce them. First, early diagnosis is vital. The later the diagnosis, the worse the condition and the worse the implications for other conditions that are likely to be inherited as a result of coeliac disease. Secondly, better management of the condition is possible and will save money.

I have moaned a lot this afternoon about the many problems facing those suffering with coeliac disease, and it would be wrong of me to create the impression that improvements have not been made. Indeed, my hon. Friends have mentioned some of them. Just to take Parliament as an example, the cafeteria was a risk too far for me when I came here in 2005, and my hon. Friend the Member for Aberdeen South alluded to that. Now we have better labelling and greater understanding among the staff, so it is much easier to eat in Parliament, and the staff deserve a big thank you for that. As my hon. Friend mentioned, however, that progress needs to be replicated in work canteens, restaurants, bars and shops across the UK. The products have also got better, even though that is reflected in their cost. It is important to accept that the food must be edible, not repulsive, as it was a number of years ago.

Before I wind up, I want to return to the issue of awareness and to say a few thanks. I never thought I would say this in my parliamentary career, but I would like first to thank the world’s No. 1 tennis player, Novak Djokovic, who has been following a gluten-free diet for the past year. That coincides with his rise to the top of the world rankings. It is difficult for me to admit this, but he may serve as a better ambassador for the health benefits of a gluten-free diet than me or any of my hon. Friends here today.

I also thank Phil Vickery, the well known chef, who has focused on gluten-free food and how it can be accommodated in the catering industry, and who is a Coeliac UK food ambassador, and Dr Chris Steele, the well known TV doctor, and another coeliac ambassador, who was fairly recently diagnosed with the condition. The biggest thanks must go to Coeliac UK, where Sarah Sleet and her staff, including Jo Archer, are committed to tackling all the matters that I have raised in a determined and professional way. They represent coeliac sufferers splendidly, and long may they continue to do so.