Oral Answers to Questions

Debate between Jim Shannon and Edward Timpson

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 Jim Shannon and Edward Timpson

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 Jim Shannon and Edward Timpson

Wednesday 9th November 2011 Westminster Hall

[Mr Timpson]

rose—

[Jim Shannon]

rose—