Autism Sunday Campaign

Debate between Edward Timpson and Jim Shannon

Wednesday 10th February 2016 Commons Chamber

[The Minister for Children and Families (Edward Timpson)]

I congratulate my hon. Friend the Member for Romford (Andrew Rosindell) on securing this important debate. He has afforded the House the opportunity to raise awareness of autism and mark Autism Sunday in Parliament, albeit on a Wednesday. As my hon. Friend has mentioned, Autism Sunday is an event with worldwide recognition, as well as being a permanent fixture in his own constituency. That is a fantastic achievement, of which Ivan and Charika Corea, who have grown the event since 2002, should be proud.

I commend Ivan Corea for his promotion of autism awareness in Romford through his work at the Frances Bardsley Academy for Girls, his role in creating FBA autism ambassadors and the #Iwill campaign, which I know well. Such local partnership working is vital if we are to change the lives of people with autism, to ensure that they achieve and lead fulfilling, happy lives. It was uplifting to hear about the incredible impact that Corea’s vision has had in and around Romford, and I am sure that it reverberates much further.

As we have heard, autism is a lifelong condition that affects how a person communicates and relates to people around them. As a result, people right across society, from school teachers and bus drivers to general practitioners, need to be aware of autism and what it means for those who live with it.

I will start by outlining the framework that is in place to improve the lives of people with autism. Since the Autism Act 2009, which was spearheaded by my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan)—I thank her for reminding us that world Autism Awareness Week is from 2 to 8 April—the 2010 cross-Government autism strategy was updated by the “Think Autism” strategy in 2014 and new statutory guidance in 2015. The aim of all of this work was further to improve the care and support that local authorities and NHS organisations provide for people with autism.

“Think Autism” placed greater emphasis on involvement and awareness within the local community and on ways of looking differently at support and engagement. That is very much what is happening in Romford, as we have heard. It moved the original vision of the strategy on, including to an increased focus on areas such as young people, criminal justice and employment.

The reason we have kept up the momentum is that there is more to do to ensure that all those with autism get the help and support that they need. Last month, we published a progress report, which is designed to challenge local partners delivering a wide range of services, such as health, education, children’s services, adult services and transport to “Think Autism”. With over 500,000 people in England estimated to have autism, this was done for a very good reason: because it matters.

These organisations and services come into contact with people on the autistic spectrum daily. By engaging with them effectively, we can ensure that such people do not miss out on accessing services and support. By doing so, we can bring about a positive influence on their mental and physical health. That is why it is so important that the Department of Health is continuing to make autism a top priority for the NHS. The NHS mandate sets the priorities for the NHS, and signals what the Department of Health will hold the NHS accountable for. Next year, it will include an important call on the NHS to reduce health inequality for autistic people.

In launching “Think Autism”, we wanted to promote innovation and awareness, and we made available over £4 million to do just that. My hon. Friend the Member for Romford rightly argued strongly for a further drive on innovation in how we deliver services for people with autism. Until last year, the Department of Health ran an innovation fund of £1 million to promote innovative local ideas, services or projects that could help people in their communities. Forty-two projects were chosen, with a focus on people with autism who do not qualify for social care support. The projects focused on four key areas: advice and mentoring, gaining and growing skills for independence, early intervention and crisis prevention, and support into employment.

Some £3 million has been given out in capital funding to councils, so that they can make public spaces, such as inquiry offices and libraries, more autism-friendly, and provide IT and technology to make life easier for people with autism. For example, in the London Borough of Havering in my hon. Friend’s constituency, funding was allocated to improve autism-friendly safe spaces, allowing people with autism greater access to Romford town centre. I know that that is an opportunity that he would not want anybody to miss.

As a Minister in the Department for Education, I have a particular focus on the education of children and young people with autism. A key part of that are our recent fundamental reforms to the new nought-to-25, family-centred, outcomes-focused special educational needs and disability system. We have made changes to the law to ensure we provide the support that children and young people with special educational needs and disabilities require. The work I have seen so far, which is putting families at the heart of the process, is in many ways inspiring, but we know that we still need to do more to engender the culture shift necessary to achieve that end. I am pleased that we were recently able to announce an additional £80 million to boost support for children with special educational needs and disabilities during the next financial year to help to ensure that our reforms have real impact on the ground, including for children and young people with autism.

We are doing specific work to help to support children and young people with autism. First, we want to ensure that all education staff are able to recognise and support children with autism in schools. We have therefore funded the Autism Education Trust from 2011 to 2016 to provide training for early years, school and further education staff. To date, the AET has provided training for about 87,000 education staff. I know that the trust is aiming to reach the milestone of 100,000 trained staff this summer. I hope that I will be able to celebrate that achievement with it.

Secondly, we know that young people with autism can find dealing with change particularly hard, so it is important that they make a successful transition from school to post-16 provision. We have therefore funded the Ambitious about Autism charity from 2013 to this year to develop an innovative, integrated model of transition support. That model enables more young people with complex autism and learning difficulties to access further education and training beyond school, helping them more successfully to move on to adult life and work.

We know that a disproportionate number of children with autism are excluded from school. As a result, we have funded the National Autistic Society to provide families with information and advice on exclusion and alternative provision, and to support education professionals with advice and guidance on early intervention to reduce the risk of exclusion.

Finally in relation to children and young people, the expansion of the Government’s free schools programme has benefited many children with special educational needs and, specifically, with autism. Several specialist autism free schools have opened, including Church Lawton School, which is near my constituency in Cheshire. There are 11 more free special schools in the pipeline, of which seven are specifically for children with autism. That demonstrates the demand and desire of parents and charities that we meet that need and offer a truly outstanding education for autistic children.

[Jim Shannon]

I applaud the initiative that has been taken by Sunderland football club, although they are not my team, to provide a small room in the stadium where autistic children can go with their parents and enjoy the football match, without the noise that disaffects them. That initiative clearly helps autistic children. Would the Minister encourage other premier league football teams and, indeed, all football teams to do likewise?

[Edward Timpson]

I agree wholeheartedly with the hon. Gentleman. The Under-Secretary of State for Disabled People has worked hard with the premier league and football clubs to improve the facilities for and awareness of people with disabilities, whether they be physical, mental or otherwise, at football grounds. There is clearly more that can be done. Clubs such as Sunderland are taking the lead and showing what can be done. With a little bit of thought, as my right hon. Friend the Member for Chesham and Amersham said, we can go a long way. I encourage every club to look at what Sunderland are doing and to make such easy but important adjustments, so that they can fill the seats in their stadium, which Sunderland has struggled to do this season.

In addition to what we are doing at the Department for Education, my colleagues right across Government are thinking autism. They are doing more to raise awareness of autism and to provide support across a range of Government services. The National Autistic Society is doing excellent work in this area. We wish to support other charities in their endeavours through the strong partnerships that are needed.

The Department of Health has funded Autism Alliance UK to undertake an awareness campaign that seeks to dispel the myths around autism, which still exist all too readily, as well as to improve training, create employment and make reasonable adjustments in how everyday services are provided for people with autism. The alliance is working with local and national businesses, and with providers of services in the private, public and voluntary sectors. In my hon. Friend’s county of Essex, the awareness work has involved another football club, Colchester United, who are having an indifferent season, the Essex County Council equality and diversity service, and councillors in Chelmsford, so it is really starting to reverberate around Essex.

Autism Alliance UK is also working to improve knowledge and awareness of autism in the Department for Work and Pensions by, for example, building an autism network across Jobcentre Plus by training nominated autism leads, including work coaches and dedicated employment advisers.

To build knowledge and expertise among health professionals, the Department of Health has provided financial support to the Royal College of General Practitioners’ clinical priorities programme on autism, which is undertaking practical work on autism awareness and training for GPs. Health Education England has developed the online MindED portal, which contains learning resources for enhancing the effectiveness of working with children, young people and young adults who are on the autistic spectrum.

Last year, the Department of Health also provided funding to a number of organisations, including the British Psychological Society, the Royal College of General Practitioners, the Social Care Institute for Excellence and the National Autistic Society to upgrade their autism e-learning training tools and materials. Those tools will assist GPs, social workers, whom my hon. Friend the Member for Romford mentioned, clinicians and nurses. The intention is to enable the training to have a direct impact on the quality and effectiveness of the services they provide. As a result of building staff capabilities on autism awareness, there will be better outcomes for people with autism and their families.

The Ministry of Justice must play its part, too. It is working to achieve better awareness of autism in the criminal justice system, for victims, witnesses and perpetrators of crime. For example, my hon Friend the Minister for Prisons, Probation, Rehabilitation and Sentencing wrote to prisons last year to encourage them to apply for the National Autistic Society’s autism accreditation. Under the pilot, several prisons are currently in the process of working towards accreditation, and by October 2015 a further 20 prisons had expressed their interest.

Finally, Disability Matters is a Department of Health-funded e-learning tool to provide training in understanding and supporting the needs of people with a disability, and it will help those with autism, too.

As you can see, Madam Deputy Speaker, from this short summary, there is a raft of activity going on to ensure that, across Government, we are “thinking autism” and raising awareness, alongside other events such as Autism Sunday. Our mission is to help people with autism to fulfil their potential, to have full, happy lives and to live as independently as possible. I join my hon. Friend the Member for Romford in embracing Autism Sunday and the golden chance it gives us to raise these issues in Romford and beyond, and I look forward to working with him on this further as we continue to work to improve the lives of all those with autism in our society.

Question put and agreed to.

Child Sexual Abuse

Debate between Edward Timpson and Jim Shannon

Tuesday 2nd June 2015 Commons Chamber

[The Minister for Children and Families (Edward Timpson)]

I congratulate the hon. Member for Nottingham North (Mr Allen) on securing this very important debate. Having known him for many years, it comes as no surprise to me that he sought to bring to the Floor of the House the serious issue of child sexual abuse at the earliest opportunity in this Parliament.

I can reassure the hon. Gentleman that tackling all forms of abuse and exploitation of children is a priority for this Government, as it was for the last Government, and it remains essential that how we tackle abuse—as a Government, as professionals and as a society—is underpinned by robust evidence of what works and what will deliver the best outcomes for children and young people. However, the fact remains that we need to know much more about the approaches that are most effective; we need to know not only what services work best for young people who have suffered abuse but how to prevent abuse from happening in the first place.

[Jim Shannon]

Will the Minister give way?

[Edward Timpson]

I will give way very quickly, because I want to ensure that the hon. Member for Nottingham North receives a full answer.

[Jim Shannon]

One thing that concerns me is the issue of gathering evidence, for instance building the evidential base in the case of Kincora and what happened in Northern Ireland. That evidence should be used to improve the expertise that is necessary to deliver for children and to give them the protection that they need.

[Edward Timpson]

I will reiterate this point later, but there is no doubt that there is evidence not only in the United Kingdom, within which Northern Ireland plays a key role, but internationally. We need to ensure that we use the best evidence we can gather to inform practice on the ground. We should seek it wherever it exists and not suggest that we have all the solutions here at home. I am sure that anything that could contribute to that process would be welcome.

Social workers, police, doctors, nurses, youth workers, schools and judges all have a crucial role to play in tackling child sexual abuse, and indeed other forms of abuse and neglect, and yet we have not done enough to help to equip those professionals with the evidence of what works. That is why I am pleased to use this debate to reinforce the Government’s commitment to establishing a new centre of expertise on tackling child sexual abuse. Its primary purpose will be to improve our understanding of what works to prevent sexual abuse and sexual exploitation, of how best to help people who have suffered from this horrendous crime, and of how to work with the perpetrators to prevent them from reoffending in the future.

Why is that so important? Well, we cannot escape the reality that many victims have been failed by the system. They have been failed by a lack of sensitivity, by a lack of understanding, by a lack of willingness of professionals to listen to and believe them, and by a system that has been too quick to jump to conclusions and to blame.

“Tackling Child Sexual Exploitation”, the report that was issued in March, set out how we are responding to the failures identified by Professor Alexis Jay and Louise Casey, to whom I again pay tribute for their insightful and hard-hitting contributions. The inquiry led by Lowell Goddard is investigating the shocking claims of child sexual abuse by those in positions of power. We are also seeing police forces up and down the country showing real and renewed determination to tackle child sexual exploitation wherever it occurs, but they need the tools to do that.

Local areas say that they are frequently told what “failure” looks like but no one has articulated what “good” looks like. So we need to learn not only from areas where things have gone wrong but from areas where things have gone well. We need to garner that knowledge from parts of the country where all professionals are striving to do their best for children and young people; where agencies work closely, and share data and intelligence; where action is taken swiftly; and where services are provided to help victims and to bring perpetrators to justice. Practitioners working in this way are doing so because of their commitment, their experience and their professional judgement, but too often they are hampered by process and by lack of evidence. As the hon. Member for Nottingham North reminded us, he first proposed, as far back as 1990, a national institute to tackle child sexual abuse and, as he put it, the root causes of child sexual abuse. He was right to propose it then, and he is right to raise it again now, and I can assure him that we are fully committed to achieving this shared vision.

That is not to say that our collective understanding has been at a complete standstill since the 1990s, but there is still much we do not know and there are gaps across the full range of work with children and young people, families and perpetrators. That is why establishing a new centre of expertise is a real opportunity to build a shared understanding of how best to address and tackle child sexual abuse, not just to help us to make decisions in government, but to support and improve practice by social workers, the police, the NHS, youth workers, schools, early years settings and many others, all of which the centre will need to work with.

What will the centre do? It will look at the full spectrum of child sexual abuse. As an active advocate of the importance of early intervention, the hon. Gentleman will recognise the need for the centre to look at how to reduce the vulnerability of young people to abuse and exploitation. We need to know what early interventions can help—for example, what role schools can play and what families and carers can do—and what we can do to promote resilience. We also need to understand how to identify risk and prevent situations from escalating. We need to know how agencies work best together, how to assess risk swiftly and effectively, and how to safeguard vulnerable groups such as children in residential care.

We have already established a £7 million fund to support victims of child sexual abuse. I have seen from my own experiences growing up with foster brothers and sisters the impact that abuse and neglect can have. To improve our response to such trauma, we need to know what therapeutic and other support is most effective, and what young people themselves feel they need and for how long. Just as vitally, we need to understand more about the behaviours of offenders. How can we prevent them from offending and reoffending? What leads to the successful disruption of perpetrators? What factors help to achieve a successful prosecution?

Oral Answers to Questions

Debate between Edward Timpson and Jim Shannon

Monday 10th February 2014 Commons Chamber

[Mr Timpson]

As I made clear earlier in the debate, the paramountcy principle still holds in this case, as does the need to ensure that the child in question would be safe. That has to be the case, but what kicks in under those circumstances is the presumption that the child will have a relationship with both parents. That is an important change that we should all support.

Finally, I would like to take this opportunity to share some well deserved thanks.

[Jim Shannon]

On a day when 3.2 million diabetics are registered in the United Kingdom and we are seeing a rise in type 1 diabetes among children, will the Minister confirm that the duty to support pupils with medical conditions means that insulin pumps will be available and one or two teachers will be available and able to understand how to deal with diabetic hypos?

[Mr Timpson]

The clause in question puts the “Managing medicines” guidance on a statutory footing. That has long been called for and is a significant change. The equipment that will be available in schools is still a matter of discretion, but we look at these things carefully, particularly when it comes to defibrillators and the important role they play in schools, as well as other public spaces. However, I hope the hon. Gentleman is pleased with the advance that we have made on that aspect of the Bill.

It now feels like a very long time ago that work on the Bill began. The hon. Member for Washington and Sunderland West (Mrs Hodgson) said at the end of Committee last April:

“We seem to have been scrutinising the Bill for months”.––[Official Report, Children and Families Public Bill Committee, 25 April 2013; c. 815.]

That was nine months ago, so it is fair to say that we have been working on this Bill for a long time now. However, it is only right to acknowledge the four Select Committees that conducted pre-legislative scrutiny of the Bill—the Select Committees on Education and on Justice, the Joint Committee on Human Rights and the Lords Select Committee on Adoption Legislation—and the great start they got us off to.

We have had some excellent debates in this House on the Bill. I would like to thank hon. Members for their participation and for how supportive they have been in helping the Government to develop the Bill. An illustration of how much work has been done is that, in both Houses together, 1,153 amendments have been tabled and debated. The Bill started off as a very good piece of legislation; with all the constructive and well-meaning work that we and Members of another place have done on it, I believe it is now a great piece of legislation. We should all be very pleased about that and the benefits that children, young people and their families will see as a consequence.

I am sure we all appreciate the hard work of the Clerks of the House and the Hansard reporters throughout the passage of the Bill, which I know has involved some late nights for them, for which I take some responsibility. If it is any consolation to them, I have also had a fair few sleepless nights—not that my children and family have had much sympathy with that. I also thank the many organisations that have engaged with us on the Bill, all of which have made an important contribution. I hope that they will continue to work with the Department as we proceed with the key task of successful implementation. A good many Ministers have been involved in the various stages of the Bill, and they deserve thanks as well.

I thank my hon. Friends the Members for East Worthing and Shoreham (Tim Loughton) and for Brent Central (Sarah Teather), who initiated this work with such vigour and aplomb. I thank my hon. Friend the Members for East Dunbartonshire (Jo Swinson), the Under-Secretary of State for Education, my hon. Friend the Member for South West Norfolk (Elizabeth Truss), and the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), with whom I have had the delight of sharing the Front Bench as a minority male. Importantly, I thank my right hon. Friend the Secretary of State, who shares my passionate determination to improve the lives of our most disadvantaged young people, and has not a capricious bone in his body: he has only compassionate bones.

I thank all our colleagues in the Department for Education, the Department of Health, the Ministry of Justice, the Department for Work and Pensions, and the Department for Business, Innovation and Skills, who have done so much to put departmental boundaries aside in the interests of children and families. Finally, I particularly thank my friends in the other place: Lord Nash—who has been stoic, good-humoured and unflappable—Lord Faulks, Lord McNally, Viscount Younger and Earl Howe; and I thank my noble Friend Baroness Northover for picking up the baton from Baroness Garden with such prowess and nerveless enthusiasm.

It has been an undiluted and, as it has turned out, a long-standing privilege to work on a Bill which will make a real difference to children and families, and which we have been able to manage in this place in ways that have been very constructive and often even consensual. In that context, I pay tribute to the hon. Members for Wigan (Lisa Nandy) and for Washington and Sunderland West for their leadership during the Bill’s earlier outings in this House, and to the hon. Members for Birmingham, Selly Oak (Steve McCabe) and for Manchester Central (Lucy Powell), who have continued to work in the same spirit today.

Today we have recognised, and heard from, Members in all parts of the House who are passionate and committed in their pursuit of improvements for our most vulnerable children. Let me repeat my thanks to all of them, and particularly to those who were members of the Public Bill Committee between 5 March and 25 April last year: my hon. Friends the Members for South Swindon (Mr Buckland), for Dover (Charlie Elphicke), for Mid Dorset and North Poole (Annette Brooke), for South Northamptonshire (Andrea Leadsom), for Erewash (Jessica Lee) and for Romsey and Southampton North (Caroline Nokes), and the hon. Members for Sefton Central (Bill Esterson), for North West Durham (Pat Glass), for Hyndburn (Graham Jones), for Manchester Central, for Croydon North (Mr Reed) and for Corby (Andy Sawford).

It would be remiss of me not to acknowledge the pivotal roles of my right hon. Friend the Member for Croydon South (Sir Richard Ottaway) and my hon. Friends the Members for Guildford (Anne Milton) and for Ipswich (Ben Gummer) in securing the Bill’s safe passage by virtue of their professional and tactful stewardship. Numerous officials from various Departments have worked very hard on the Bill, and I am sure that the House will want thank them as well.

I cannot end my speech without singling out for special mention the Bill team and other Government officials, led with such distinction by Jenny Preece. I thank Jamie, Alan, Lara, Helen, Ruth, Katy, Lizzie, the lead lawyers Sofie, Paula and their colleagues, Phil, Stephen, Jonathan and everyone in the special educational needs team, and all the officials and lawyers—too many to mention—in several Departments who have contributed to the development, drafting and scrutiny of the Bill. Their efforts usually go unnoticed and undetected, and are carried out without fanfare. I, along with other Ministers and all Members—as well as you, Mr Speaker—owe them enormous gratitude. It has been an absolute delight to work with each and every one of them.

I hope that the House will agree that all the amendments made by another place are beneficial to the Bill and, ultimately, to children and their families. If so, we can then move on speedily to the task of turning this legislation into something that has meaning and impact, and, above all, is able to make young lives better.

Lords amendment 1 agreed to.

Lords amendments 2 to 120, 126 to 149 and 151 to 176 agreed to, with Commons financial privileges waived in respect of Lords amendments 15, 17 to 20, 22, 25, 27 to 31, 33 to 35, 37, 39, 41, 43, 44, 64, 66, 85, 88 to 90, 92, 94, 96, 97, 104 to 109, 115 to 118, 126 to 129, 135, 144, 149 and 176.

Rare Disease Strategy

Debate between Edward Timpson and Jim Shannon

Monday 30th April 2012 Commons Chamber

[Mr Edward Timpson (Crewe and Nantwich) (Con)]

As ever, I am grateful, and indeed delighted, to have the opportunity to address the House in this timely and much-needed debate. Just eight days ago, along with 37,000 other hardy souls, I stood, full of trepidation and excitement, at the start line for the 2012 London marathon. I was running with my wife, Julia, and am pleased to report that we finished the course together in just under four hours. Far more importantly, our run raised over £6,000 for the national charity CLIMB.

That is all very interesting, you might say, Mr Deputy Speaker, but what has this rare accomplishment for a Member of Parliament got to do with a rare disease strategy for the UK? To explain, CLIMB stands for “children living with inherited metabolic diseases” and is a charity based in Crewe in my constituency. It is one of an important network of rare disease charities that strive to raise awareness of rare diseases, not least through Rare Disease day, which takes place on the last day of February each year. Under the stewardship of Steve Hannigan, CLIMB provides vital advice and support to many children and families affected by one of the around 730 known metabolic diseases. One of those children is my nephew Leo.

Leo was born in 2001 with an inherited metabolic disease known as MCADD. Approximately one in 10,000 babies born in the UK has MCADD, which means that they are missing an enzyme that helps break down the fats that provide energy for the body, particularly after long periods without food. This inability to break down fat leads to the build-up of medium-chain fats that can produce toxic substances and lead to severe symptoms, including seizures and possibly coma and death. As Leo was born before the introduction of routine baby screening for MCADD in 2008, neither medical professionals nor his parents knew that he had the disease.

For Leo, all was well until he was 10 months old, when he contracted pneumonia that was coupled with three days of severe hypoglycaemic episodes. Because the knowledge of rare diseases among medical staff was and, indeed, remains limited, and because he had not been screened for MCADD, no one picked up on this underlying rare condition and the need to treat him accordingly. More by luck than by informed professional judgment, thankfully Leo survived.

When Leo suffered a further hypo episode at 14 months, triggered by nothing more than a routine cold, the doctor on duty, who had some knowledge of MCADD, realised that his low blood sugar was unexplained, and subsequent relevant tests revealed a diagnosis of the metabolic disease.

Leo is now 11 and living a full and active life, but, with the mortality rate of children under the age of one who have undiagnosed MCADD being approximately 25%, the routine screening that CLIMB long campaigned for, and which is soon to be introduced throughout all four nations of the UK, is a vital tool in saving lives.

In the past year alone, more than 80 newborn babies have been diagnosed with MCADD—80 babies whose disease would otherwise have remained undetected and who would have been at significant risk. That is why I wanted this debate: to be able to speak up for all those, like Leo, with a rare disease, to put a proposition to the Minister and to question him about, how we can improve the services, information, treatment and support that those with rare diseases receive in order to ensure that we maximise their quality of life.

We are not talking about a handful of isolated cases. With close to 7,000 distinct rare diseases having been discovered, and with five new diseases described every week in medical literature, rare diseases are collectively far from rare. In the UK it is estimated that 3.5 million people, or one in 17, will be affected by a rare disease at some point in their life, with 30% of patients dying before their fifth birthday.

So what is a rare disease? The European commission on public health defines rare diseases, sometimes known as “orphan diseases”, as

“life-threatening or chronically debilitating diseases which are of such low prevalence”—

affecting fewer than one in 2,000 people—

“that special combined efforts are needed to address them.”

About 80% are genetic in origin, but many are auto-immune, such as Crohn’s disease, and others are infectious in nature.

Motor neurone disease, cystic fibrosis, muscular dystrophy and Huntington’s disease may be some of the more widely known rare diseases, whereas acquired non-histamine induced angiodema and Adair-Dighton syndrome are just two of the many thousands of others that I have come across in my own research.

[Jim Shannon (Strangford) (DUP)]

One rare disease that I am aware of is Prader-Willi syndrome, which affects the muscular build-up, eating habits and sleep patterns of some 2,000 people in the United Kingdom and 50 people in Northern Ireland. Does the hon. Gentleman feel that, if there is to be a strategy for the United Kingdom, it must involve all those regions where health matters are devolved to the Administration? Does he feel also that along with such a strategy and, given all the different areas that there are, we need to have something for respite care, because parents, and the way in which they play their part, are vital?

[Mr Timpson]

I am grateful to the hon. Gentleman for raising a particular issue in his constituency in Northern Ireland. He is absolutely right that we need to ensure that the strategy we develop for rare diseases supports not just those who suffer from the disease, but the families who every day, for every hour, have to cope with it and support them. We need to ensure that that is a central part of the strategy.

Such diseases—especially those, including the one to which the hon. Member for Strangford (Jim Shannon) refers, that are particularly rare—are no less important, however, and therein lies the problem. Most rare diseases are under the medical and public radar—too exceptional to attract the attention, recognition and resources required and, above all, the coherent plan needed to tackle the fragmented, inefficient and often inequitable services on offer.

That is why I welcome the Government’s current consultation on the development of a UK strategy for rare diseases and why this debate is so apt. For too long, rare diseases have been placed in the “too difficult to do” pile, but with the onset of changes to health care commissioning and the refocus on putting patients at the heart of the NHS, there is a real opportunity to do things more effectively and much smarter. That means that the consultation must be ambitious, provide strong leadership, and be unambiguous about how the core vision that it reveals can be successfully implemented practically and realistically on the ground across all four home nations.

I have taken the time to read the consultation document, and although it makes many of the right noises, there is a nagging doubt as to whether it meets all the challenges faced by those with rare diseases. I am told by those working in the field of rare diseases that Lord Howe, the Minister who, together with his colleagues in the devolved nations, is responsible for the document, genuinely appears to understand the importance of getting this right. I trust, therefore, that he and they will listen carefully to the submissions they receive, including mine this evening and those of other hon. Members.

So what needs improving? It is clear from my many conversations and my correspondence with clinicians, patient groups and charities working on and living with rare diseases that the ad-hoc nature in which services have developed has led to the principal problems of delays in diagnosis; misdiagnosis; lack of information, communication and awareness; limited research; scarce and unequal access to orphan medicines; poor commissioning and care co-ordination; and a failure to monitor outcomes.

That is not to say that it is all bad news. There is, as ever, some fantastic best practice already taking place. The TREAT-NMD—Translational Research in Europe: Assessment and Treatment of Neuromuscular Diseases—network for neuromuscular diseases, the European Huntington’s Disease Network’s REGISTRY, and the Tay Sachs walk-in clinic at Guy’s hospital are all good examples of innovative, effective and efficient service delivery on which any strategy should seek to build.

Adoption

Debate between Edward Timpson and Jim Shannon

Wednesday 9th November 2011 Westminster Hall

[Mr Timpson]

rose—

[Jim Shannon]

rose—