Specialist Neuromuscular Care and Treatments

Caroline Nokes Excerpts

Tuesday 15th December 2015 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

As ever, it is a pleasure to serve under your chairmanship, Mr Brady. I pay tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), who secured this important debate today. It is on a recurring theme which she brings us back to time and again. Not only does she work tirelessly to highlight the case of her constituent, Archie Hill, but she is extremely knowledgeable, so I will endeavour not to repeat any of her comments because I want to give other Members the chance to contribute.

Like my right hon. Friend, I have a constituent who suffers from Duchenne muscular dystrophy. Jagger Curtis is a pupil at Romsey Abbey primary school and is just eight years old. I have highlighted Jagger’s case in this Chamber before and I have raised it twice at Prime Minister’s questions, but, like Archie, Jagger is still waiting for an answer on whether he will be allowed to have Translarna. I will focus briefly on the issue of treatment, but mainly I want to echo my right hon. Friend’s calls, asking when families such as Jagger’s can expect to be notified of guidance from the National Institute for Health and Care Excellence on access to Translarna.

I know the Minister is aware of the time sensitivities of access to this drug—it has to be prescribed while the patient is still mobile—so I ask him to consider meeting me and my constituents, Jules Geary and James Curtis, who are Jagger’s parents, to discuss how the process might be accelerated. It might not necessarily be accelerated now, for their son, but it should be for the other hundred boys who will be diagnosed with Duchenne muscular dystrophy every single year. We have been waiting many months for a decision on Translarna, and every deadline appears to result in a decision to prolong matters further. There are concerns about the clinical trial capacity for drugs developed to assist neuromuscular conditions; will the Minister please assure me that he is actively promoting the network of specialist muscle centres as a means to overcome that problem?

Other issues associated with Jagger’s care have also raised huge concerns. He has had to wait far too long for his specialist wheelchair, and there seems to be little understanding that the chair is a lifeline for Jagger and his parents. Last week he went on holiday to Tenerife, and his wheelchair arrived literally just in time—the very day before he went on holiday—despite the fact that it was ordered back in May. The hon. Member for York Central (Rachael Maskell) referred to the fact that children grow and change, and their needs change. It seems to be an absolute tragedy that a child can wait all those months, and then by the time the chair arrives the danger is that it will no longer be correct for their condition.

Jagger still has his mobility, but his parents have done an arguably very difficult thing in making sure that he has that chair. Inevitably, as a child with a condition in which his muscles deteriorate, he tires really easily, so that chair is his lifeline and his access to continued mobility now and in future. He is still suitable for treatment with Translarna—he is one of the boys who has the nonsense mutation—but his family feels as though the clock is ticking very quickly.

Muscular Dystrophy UK has highlighted the problems with wheelchair provision throughout the country. Clinical commissioning groups are now responsible for commissioning wheelchair services. I am really conscious that in west Hampshire there have been delays for many people, not just Jagger. For those with neuromuscular conditions, as the hon. Member for York Central said, it is all about getting the right chair at the right time. It can be particularly devastating for children to have to wait for a chair that enhances their freedom.

I recently saw that Jagger’s mother had posted on Facebook a picture of him proudly showing off his new chair. However, it also said that the family had launched a GoFundMe page to buy a powered sitting and standing chair to enable Jagger to live his life as fully and actively as possible. It is heartbreaking that they are trying to fund that through GoFundMe because they do not have the confidence that the CCG is going to provide that sort of facility for them.

In the south-east we lag behind the rest of the country in the provision of neuromuscular care and adviser support. As we have heard, there are two specialist treatment centres in London and one in Oxford. That is a two-hour journey for a child in a wheelchair, coming via Waterloo, and his parents tell me that it is incredibly difficult for them to do that whenever Jagger needs to come to London for treatment. There is also a problem with specialist guidance. These families are looking for support—they need support, advice and information.

We are lucky that in Romsey we have brilliant GPs, but Jules Geary told me the tale of trying to get Jagger diagnosed. As a first-time mum, she was often dismissed as a worried mother, when in fact she was the one who knew her son best and knew that there was a problem. I do not blame the GPs at all, because if 100 boys are diagnosed every year, one would not expect a GP in Romsey to see it very often. It was not until James read an article in the Daily Mail about Duchenne muscular dystrophy that he pointed his finger and said, “Those are the same symptoms that Jagger has.” They took that article to the GP, and it was only then that the specialist tests were done on Jagger.

I know that we keep returning to this subject, but that is because it is important. It is right that we keep returning to it. Quality of life, especially for children, is crucial. I hope the Minister will look round this Chamber this afternoon and hear the cross-party and apolitical calls for help for those with such conditions, and I hope he will address some of the points that we raise.

Southern Health NHS Foundation Trust

Caroline Nokes Excerpts

Thursday 10th December 2015 Commons Chamber

[Mr Hunt]

I am happy to consider that. The right hon. Gentleman and I are completely on the same page on these issues. My only hesitation is that a public inquiry will take two, three or four years, and I want to ensure that we take action now. I hope I can reassure him and the House that by, for example, publishing Ofsted-style ratings for the quality of care for people with learning disabilities across every clinical commissioning group, we will shine a spotlight on poor care in the way that the Francis report tells us that we must. I do not see the treatment of people with learning difficulties as distinct from the broader lessons in the Francis report, but if we fail to make progress, I know that the right hon. Gentleman will come back to me, and rightly so.

[Caroline Nokes (Romsey and Southampton North) (Con)]

Many of my constituents are service users of Southern Health, or the family members of service users. They are looking for reassurance from the Secretary of State that there will not simply be an immediate intense spotlight but an ongoing one, so that they can have confidence that the scrutiny and oversight, particularly for young people with learning difficulties, will be ongoing.

[Mr Hunt]

I can absolutely give that assurance to my hon. Friend’s constituents. I hope they will consider the tone of my earlier remarks and realise that we are not looking at this simply as an issue for Southern Health. Clearly, important changes must happen there and must happen quickly, and we will do everything we can to make sure that they happen. I also think, however, that there is a systemic issue in relation to the low reporting of avoidable and preventable deaths and harm, and the failure to develop a true learning culture in the NHS, which in the end is what doctors, nurses and patients all want and need.

Drugs: Ultra-rare Diseases

Caroline Nokes Excerpts

Tuesday 16th June 2015 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

It is a pleasure to serve under your chairmanship, Mr Crausby.

I am pleased to be the first to congratulate the hon. Member for Leeds North West (Greg Mulholland) on securing this important debate. I also pay tribute to him for the enormous amount of work he has done on Morquio syndrome, which he has raised many times in the House and in Westminster Hall. He has also held numerous meetings and led delegations to Downing Street. He has worked assiduously on behalf of his constituent, Sam Brown, and, as we have heard this afternoon, he has worked on not only Morquio syndrome, but a range of ultra-rare diseases. He has done an excellent job today of highlighting the problems, the delays in funding and the amount of time it has taken simply to get these drugs through the approval process.

Rather than focusing on those aspects, I will talk about the human cost of these diseases, highlighting the case of my constituent, Jagger Curtis, who is just seven years old—he will be eight in August—and a pupil at Romsey Abbey primary school in my constituency.

Last Wednesday, Jagger was one of the brave boys who walked up Downing Street to hand-deliver his letter to the Prime Minister, which was an incredible experience for him and his parents. It was a really important part of their campaign to highlight the need for funding and approval of Translarna, because Jagger suffers from Duchenne muscular dystrophy.

Of course, Translarna is a relatively new drug. I say “relatively”, because it has been used in European countries since last year; it received conditional approval from the European Commission in August 2014. Yet here in the UK, as the hon. Gentleman has said, we are still waiting.

Duchenne muscular dystrophy is a very serious condition that affects about 2,500 people in the UK, almost all of them boys. It causes muscle weakness, leading to a dramatic loss of muscle function. Typically, patients will lose the ability to walk in their early teens; they will require respiratory support by their mid teens, and they are likely to die either of heart failure or respiratory failure before they reach 30. I cannot emphasise enough what a devastating condition it is and how brave families are when they have to face up to and deal with the reality of a Duchenne diagnosis.

Currently, the only treatments available address the symptoms, rather than the cause of Duchenne. They include the prescription of steroids, which of course have some very severe side effects, including sudden and dramatic weight gain, mood swings, which can be particularly difficult to contend with in teenage boys, and thinning bones.

As has been said this afternoon, Duchenne is a rare condition, with very few sufferers in the UK, and only about 10% to 15% of them have what is referred to as “the nonsense mutation”, which makes them eligible for treatment with Translarna. In some respects, Jagger is very lucky, because he is one of the boys with the nonsense mutation and is therefore eligible for Translarna. Currently, he is still mobile, which is absolutely critical when the use of Translarna is being considered, because it cannot be prescribed after a patient has lost their mobility. Translarna has the best chance of having a beneficial effect while the boys can still move around. Once they have lost their ambulation, it is too late and the opportunity has been missed.

Jagger’s parents, Julie and James, were told late last year that he was a suitable candidate for Translarna, and they genuinely believed that they were within a few weeks of going to the hospital and picking up a prescription for the one drug that they had been told could make a difference to their son. In November 2014, they had no idea that they would still be waiting for the drug now and that it still would not have finished going through the administrative process by the end of June. We are now seven months on from the day that they had expected to go and collect a prescription, but there has still not been a decision and they simply do not know what the outcome of this process will be.

During that time, of course, Julie and James have watched their son lose some of his mobility; his muscles have wasted away further. More than anything else, they desperately want an extension of the time in which Jagger is able to move around by himself, without the need for a wheelchair.

In his letter to the Prime Minister last week, Jagger wrote that he wanted to keep on playing football forever, just like his friends. He is an enormous Saints fan, and one of his proudest moments was going on to the pitch at St Mary’s to lead the team out. There is a fantastic photograph that he included in his letter to the Prime Minister, showing him shaking hands with the Saints manager, Ronald Koeman. In every other way, Jagger is a lively, lovely, normal little boy, who has a massive love for football, but, and it is a huge but, unlike most seven-year-olds Jagger has already been fitted for a wheelchair. His parents have had to make the necessary preparations—it was difficult, even heartbreaking, but they had to do it—to ensure that when Jagger’s mobility is more restricted a wheelchair will be ready and waiting for him so that he can still get around.

For Jagger and every other boy with Duchenne muscular dystrophy who has the nonsense mutation, the clock is ticking. In fact, it has been ticking since last August, when Jagger’s parents and others had their hopes raised that there was a treatment that was about to become available on the market. That treatment could give boys such as Jagger the chance to see out their time at primary school without needing a wheelchair, so that, as Jagger himself puts it, he can run around with his friends and be like any other normal little boy.

My hon. Friend the Member for Leeds North West—I should refer to him as the hon. Gentleman now, but old habits die hard, and on this subject he has been a great friend and a great campaigner; I pay tribute to him for that—along with Muscular Dystropy UK and Action Duchenne, has done great work to highlight the problems that people have faced in getting approval for Translarna in the UK. We expect a decision on Translarna at the end of June, and the company that manufactures it, PTC Therapeutics, indicated last week that it was ready to go, had stocks available and could supply it as and when it was needed.

If that drug is given the green light at the end of June, it will be distributed here, but the boys I have mentioned today have already waited for far too long, and this drug is the only one that is giving them any hope. I know the Minister has been most diligent for some months; he has listened to all we have had to say in this Chamber, in the House, on Twitter and indeed in the media. However, as we have heard, there are real concerns about how long the approval process has taken and about how complicated it has been, as well as about some of the inconsistencies and contradictions about when the drug might be made available. I hope that the Minister will make some comment on that.

I am conscious that there are many Members here in Westminster Hall this afternoon who want to contribute, so I have deliberately kept my remarks short. I will conclude with the words of Jules Geary, because I do not think anyone else could better summarise how her family feels:

“It is hard enough watching your child have to go through losing their muscles. For the drug to work, Jagger still needs to be mobile, so we simply don’t have time to wait. We have been given hope through this drug. We just can’t let it be taken away again.”

Oral Answers to Questions

Caroline Nokes Excerpts

Tuesday 2nd June 2015 Commons Chamber

[Mr Hunt]

I welcome my hon. Friend to her place as someone who campaigned a great deal on health issues while she was a parliamentary candidate; it is wonderful to see her here. That is a tragic case and we need to look at those rules. I will take that up and see what we can do.

[Caroline Nokes (Romsey and Southampton North) (Con)]

2. When he expects NHS England to reach a decision on access to Translarna for the treatment of Duchenne muscular dystrophy; and if he will make a statement.

[Mr Ronnie Campbell (Blyth Valley) (Lab)]

11. When he expects NHS England to reach a decision on access to Translarna for the treatment of Duchenne muscular dystrophy; and if he will make a statement.

[Caroline Nokes]

I thank the Minister for that response and welcome him to his place. Yesterday my constituent Jules Geary came to see me regarding her son Jagger, who suffers from Duchenne muscular dystrophy. Jagger had been approved for Translarna treatment but then suddenly found that it had been withdrawn at the last moment. Like many other boys, he is now waiting, not knowing when a treatment that will prolong his mobility will be forthcoming. Will my hon. Friend meet me, Jules and Muscular Dystrophy UK to discuss how this process can be streamlined so that other children do not have to wait this long?

[Ben Gummer]

Muscular dystrophy is a terrible, debilitating illness and my sympathies go out to Jagger and his family. My hon. Friend will be aware that families and their representatives will be going to Downing Street on 10 June to make their representations on this matter. The Minister for Life Sciences has introduced an accelerated access review precisely because of the concerns that my hon. Friend has raised, and I know that he will welcome representations once it has been completed.

Local Pharmaceutical Services

Caroline Nokes Excerpts

Tuesday 3rd March 2015 Westminster Hall

[Mr George Howarth (in the Chair)]

Before I call the first speaker, it might be helpful if I point out that the time display has been the subject of a technology failure. Although it is telling the correct time, it is saying that the speech time is already 7 minutes 29 seconds. I say that not because I anticipate any pressure on time, but to prevent anybody who is wondering how long they have been speaking from thinking it is 7 minutes 29 seconds longer than they had anticipated.

[Caroline Nokes (Romsey and Southampton North) (Con)]

It is, as ever, a pleasure to serve under your chairmanship, Mr Howarth. I appreciate your pointing out the clock to me. I might have thought I had got stuck in some sort of time warp and was forever on 7 minutes 29 seconds.

I want to put on the record my thanks to Mr Speaker for granting this debate on the essential small pharmacy local pharmaceutical services scheme, which has played and continues to play an important role in supporting small community pharmacies up and down the country. Pharmacies are an essential part of our health care system, and pharmacists play a key role in providing quality health care. They are experts in medicines and they use their clinical expertise and practical knowledge to ensure that medicines are safely supplied to and used by the public.

Over the past few years, a much greater emphasis has been placed on the role of the pharmacist. People have been encouraged to use their local pharmacy as the first port of call for the minor ailments—coughs, colds and skin rashes—that afflict us all from time to time. Pharmacists also play a significant role in programmes such as smoking cessation and emergency contraception, and they do great work with medicine reviews and in ensuring that people use their medicines properly and effectively. They play a huge role in the winter by providing flu jabs efficiently and cost effectively. If I recall correctly, my hon. Friend the Minister supported Westminster flu day last year. Your interest in diabetes is well known, Mr Howarth, and you will be aware of the important role that pharmacists play in helping those with long-term conditions to manage their diseases.

[Andrew Stephenson (Pendle) (Con)]

I congratulate my hon. Friend on securing this important debate. I am a huge supporter of the role of local pharmacies, and I am kept regularly updated about developments by a number of Pendle pharmacists, including Mark Collins of the Barkerhouse road pharmacy in Nelson and Matthew Leedam of Leedams’ pharmacy in Colne.

Does my hon. Friend agree that expanding the crucial role of pharmacies to enable them to better care for patients with long-term conditions, help people to get the best from medicines and offer people the support and advice they need to live independently and stay healthy would benefit not only patients but our local communities and our NHS?

[Caroline Nokes]

I absolutely agree with everything that my hon. Friend said. Small community pharmacies often know their patients well, so they are at the forefront of helping people to manage their conditions and know whether they are taking the right amount of medicine. They are often a useful place for people to go for an informal chat about the conditions that affect them.

Community pharmacies are at the heart of our communities. They dispense advice as regularly as medicine, and they help people to make healthier lifestyle choices. Pharmacy Voice, the organisation formed from the three largest community pharmacy associations, strongly advocated the role of the community pharmacy as part of the solution to pressures on accident and emergency and GP services. It has encouraged people to think, “Pharmacy first”, and it has described community pharmacy teams as being perfectly placed to care for patients with common winter ailments. We are coming out of winter and into spring, but pharmaceutical services are there all year round. They are just as adept at dealing with allergies, stings and hay fever as they are at dealing with winter colds.

Last year, Pharmacy Voice identified that up to 8% of A and E visits could have been dealt with by a high street pharmacy, and approximately one fifth of GP visits could have been avoided by visiting the pharmacist. Last year, NHS England reinforced the role of the community pharmacy with the “Feeling under the weather?” campaign. Many Ministers, including my hon. Friend the Minister, have emphasised in responses to written and oral questions that pharmacists have a great role to play in helping people to manage long-term conditions and in helping people with their medication.

None of the pharmacists I spoke to prior to this debate is sure when the role of the essential small pharmacy was first recognised, but I can say with certainty that the essential small pharmacy in the village of Wellow in my constituency has benefited from support, reflecting its small scale and relative remoteness from other pharmacies, since it opened in 1990. The national contract for such pharmacies was first introduced in 2006, and it has been extended a number of times since then. About 100 pharmacies receive support from the essential small pharmacy local pharmaceutical services scheme. Many are located in relatively remote rural areas, but some operate in inner-city communities. Over the years, they have provided services that have been relied upon by residents for their health care as well as their dispensing needs.

The current pharmaceutical needs assessment, published in 2011, supports the continuation of the scheme. It states:

“ESPLPS pharmacies are used to ensure that access to pharmaceutical services is achieved in certain locations in line with the model of access to pharmacy services in ‘Healthy Horizons in Primary Care’.”

Rural bus services are being reduced and it is increasingly difficult to access other pharmacies by public transport, so small pharmacies can easily be described as essential to local communities. Certainly, that is true of Wellow pharmacy.

What is the problem, and why have I requested this debate? These arrangements have existed for many years and have provided modest support for small pharmacies, where they are needed for patients, but where they might not otherwise be economically viable. The national contract was introduced in 2006, and negotiations by the Pharmaceutical Services Negotiating Committee have seen it extended a number of times. But what is an essential small pharmacy? The criteria for eligibility are that the pharmacy must be dispensing fewer than 26,400 items a year and must be more than 1 km from the next nearest pharmacy. Their benefit to communities was deemed to be so great that a minimum level of remuneration was set. It is currently just under £80,000 a year. From the pharmacy global sum, a top-up payment would be permitted to ensure the continued viability of the pharmacy. However, NHS England confirmed last autumn that it is not possible to continue national arrangements, leaving individual pharmacies to negotiate with their own NHS area teams. Support has been available from the PSNC, but many local pharmacists have found those negotiations difficult, time consuming and stressful. Although some have been successful, other area teams have not been able to provide certainty.

[Sarah Newton (Truro and Falmouth) (Con)]

I am grateful to my hon. Friend for securing this important debate. She is describing the situation faced by an essential small pharmacy in St Mawes in my constituency. We had a public meeting on 5 February with NHS England local area teams, and hundreds of people showed their support for that pharmacy, which is vital in serving the Roseland peninsula. We have not yet heard from NHS England about whether that funding is secure, but the pharmacy applied for an LPS contract. My hon. Friend is right to highlight the continuing uncertainty that the situation is causing for pharmacists and the communities that they serve.

[Caroline Nokes]

My hon. Friend has accurately outlined the situation in her constituency, which I am sure is mirrored across the country. I have received representations from community pharmacists, who have said that they are struggling with short time scales and no certainty from their NHS area teams.

[David Simpson (Upper Bann) (DUP)]

I think the hon. Member for Truro and Falmouth (Sarah Newton) may need to go to the pharmacy. Is the main problem for smaller pharmacies purely the finance, or is it the facilities that they have?

[Caroline Nokes]

I thank the hon. Gentleman for that intervention. I will move on to finance, but it is not my contention that finance is the problem; we just require the local area teams to manage these contracts and get them in place before the deadline of 31 March is reached.

As I was about to say, the contract for Wellow pharmacy, in line with those for every essential small pharmacy across the country, will expire on 31 March. When the contract comes to an end, my constituent Mr Sharma is gravely concerned that his pharmacy will not be able to continue providing these services, unless the local NHS area team decides to renew it, making specific arrangements under the local pharmaceutical services scheme. As yet, he has not received a decision.

Many other pharmacies are similarly affected, and I know that the Secretary of State for Education, my right hon. Friend the Member for Loughborough (Nicky Morgan), who cannot be here today, has expressed concerns about the pharmacy at Loughborough university and the one in the village of Wymeswold. I think that perfectly illustrates the diverse localities that these pharmacies serve. It is not just small village pharmacies under threat, but one serving a university campus, where young people are living away from home for the first time and might be in a position to benefit most from the sage, experienced advice of a pharmacist for their front-line health care needs.

I completely understand the need for NHS England to have devolved these contracts to local area teams, but the reality is that 31 March is now exactly four weeks away and for many pharmacists, there is still no certainty. According to Pharmacy Voice, had NHS England renewed the contract, there would have been procurement and tendering issues, so it was devolved to the areas, but we now face a problem where few have confidence that when we get to the end of this month, they will have a new contract.

What are their options? Well, they are pretty stark. They can close immediately, with no notice to the local community, because the contract will have expired and therefore no notice period is necessary. They can try to struggle on, returning to the pharmaceutical list but facing an immediate drop in income, which was previously agreed by all to be necessary to enable them to provide essential services. Or, and I am sure that this is the option most will follow, they can continue to pursue the NHS area teams to prove their value and worth, when in fact that was already established a long while ago.

For small pharmacies, there is a real challenge in viability. Using Wellow pharmacy as an example, it currently issues in the region of 2,200 prescriptions a month. That is pretty close to the 2,400 prescriptions a month that would trigger what is known as an establishment payment, but it is not quite there. It has worked hard to increase business, but in small communities it is incredibly difficult to push numbers above that threshold. My constituent Mr Sharma describes the additional prescriptions needed as a gulf that he has been struggling for years to cross and has never yet achieved.

I do not intend to delve into the issue of dispensing GPs and what is often perceived as a conflict between pharmacies and those GPs who can dispense. That is quite separate from the immediate time pressure faced by these pharmacies, which have already been deemed essential. What my constituent and the other pharmacists who have contacted me have emphasised is the chasm between the number of prescriptions that they routinely issue and the number that they would have to reach in order to receive the establishment payment. For some, the gap is greater than for others, which means that the impact of losing the essential scheme will be felt differently by various pharmacies and that some might be forced out of business faster than others.

Most members of the scheme are already doing significant work to make sure that they are as accessible as possible to patients, including collection of prescriptions from nearby surgeries and free delivery of medicines to patients. As Mr Sharma puts it:

“This pharmacy is the only health care provider in the area of any type, and the nearest other pharmacies are over five miles away in Romsey. If a patient was to need an over-the-counter medicine, require a medicine free of charge for a child, need support for self-care, or have a minor injury, there is a significant risk that without the availability of my pharmacy, they would attend either the GP surgery in Romsey or the accident and emergency department of Southampton general hospital.”

What he wants, in common with pharmacists from across the country who have been in touch with me, is some certainty going forward.

As Has Modi, of Deanshanger in the constituency of the Economic Secretary to the Treasury, my hon. Friend the Member for South Northamptonshire (Andrea Leadsom), has said:

“These contracts have been left to the discretion of the area team of NHS England, to whom we are required to make a formal proposal.”

The primary care contracts manager of the area team is adamant that the proposal will not be supported unless it can be proved “value for money”. Without the financial support that that entails, this small pharmacy will undoubtedly have to close because the normal funding mechanisms are massively stacked against small pharmacies. It does not even receive various basic fees—which can be substantial—that are available to average and larger pharmacies. This is why the ESPLPS arrangements were put in place to safeguard small but essential pharmacies in the heart of the community.

I appreciate that the current arrangements cannot continue, and that because the Secretary of State has devolved the contracting of primary care services to NHS England, a further extension to the scheme is not possible. He has already extended it once, from 2013 to 2015, and he cannot devolve responsibility for commissioning and then interfere with how that same commissioning operates. Therefore, no extension will be forthcoming and I accept that.

As my hon. Friend the Member for Truro and Falmouth (Sarah Newton) has said, many pharmacies are actively negotiating with their area teams, but concerns have been raised about the responses they are receiving, including time-limited support, and requirements to demonstrate that they are providing value for money. However, those area teams with an essential small pharmacy service are receiving a top-up on their allocations, so the funding is already there and is ongoing from the global pharmacy sum. Any amounts allocated have to be spent on pharmacy services and cannot be redistributed to any other purpose.

Effectively, if the essential small pharmacies are not supported, the moneys will simply go to other pharmacies in locations that have not been deemed to be of such an essential nature. Presumably, they might be redistributed to the larger existing pharmacies, many in high street locations, some distance from the village where there once was a supported, critically important pharmacy.

Essential small pharmacies are working hard to ensure that their “pitch” to the area teams is as robust as possible. Many, such as Wellow pharmacy, are garnering support from the local community, from appreciative patients and from borough, county and parish councils. Local residents are filling in surveys, outlining the services that they use at the pharmacy and identifying what impact closure would have on them personally.

It seems to me a relatively simple proposition: if these pharmacies are essential, and successive Governments have agreed they are, what more can we do to make sure they are retained? I have three things that I wish to ask of the Minister today. First, we need some clarity over what constitutes an essential small pharmacy. Some 90 pharmacies historically receive payments under the scheme. It would be helpful if they could point to an incredibly robust set of criteria, so that it would be easy for the pharmacists then to identify to the area teams why they need the support that has been forthcoming for, in at least the case of Wellow, 25 years.

Secondly, we need some encouragement to NHS England area teams to ensure that the outstanding contracts, which are believed to be the majority of them, are resolved before 31 March, so that pharmacy services are not simply forced to stop in these communities. I know that some are resolved and that others are working very actively to make sure that they are in place before the contracts—and therefore the payments—expire, but from my e-mail inbox, I am acutely aware of how many are simply in a state of limbo, having no idea whether their business will be viable 28 days from now. I would welcome the Minister considering how best she might convey that urgency to NHS area teams.

Finally, we need closer investigation of what role NHS England could play in making sure, within the procurement rules, that pharmacies deemed over decades to be essential can continue to receive support, via the pharmacy global sum, so that there is no additional cost to the NHS area teams and that the top-ups that area teams receive remain in place. However, it should also be made very clear that those can only be used for pharmacy services and not distributed among the wider health care community.

As I said at the beginning, we all appreciate the very important role pharmacists play in our health care provision. They dispense advice and knowledge, as well as drugs. In those of our communities remote from other health care providers, 100 or so of them have been deemed to be essential—and we need to keep them.

Respiratory Health

Caroline Nokes Excerpts

Tuesday 3rd February 2015 Westminster Hall

[Stephen McPartland]

My hon. and learned Friend makes an incredibly important point, to which I will return later. The information that has come out of NICE is sadly testament to the complacency that we see regarding the effects of respiratory disease, and to how some professionals and patients treat the condition, ultimately resulting in those patients’ deaths.

Contributors to the all-party group’s report include health care professionals, charities, patients, families and professional organisations, as well as a range of other people who contributed both written and verbal evidence. I will read the story of one of those people a little later, but first I want to look at chronic obstructive pulmonary disease, which is an umbrella term for a set of conditions that includes bronchitis and emphysema. Combined, such conditions kill more than 30,000 people a year in the UK—around 5% of all deaths in the UK from all causes. A COPD patient’s journey is often punctuated by multiple exacerbations, which are sudden worsenings of the symptoms, often triggered by external factors such as infection and problems with air quality, that often lead to hospitalisation.

To put it into context, people suffering from COPD exacerbations are the second most common cause of emergency hospital admissions in this country, the biggest being ischaemic heart disease, which is effectively coronary heart disease—heart attacks and strokes. It is estimated that COPD leads to 94,000 admissions a year, with cold weather often a major contributory factor. The direct costs on the NHS are more than £800 million a year, so COPD is causing a huge problem in terms of the costs for the NHS and the impact on individual patients. One of the worst statistics that the all-party group’s inquiry came across was that 50% of people who are admitted to hospital with severe COPD die within four years—once it has reached the stage of their being admitted to hospital, they sadly have a life expectancy of four years.

[Caroline Nokes (Romsey and Southampton North) (Con)]

I congratulate my hon. Friend on having secured this debate. Does he agree that there is a real problem with undiagnosed COPD, which is contributing to those hospital admissions? People are presenting for treatment only when they are in crisis.

[Stephen McPartland]

My hon. Friend makes an important point. In fact, we believe that more than 2 million people in the UK have COPD but are completely undiagnosed. The British Lung Foundation has done a great deal of work to try to raise the profile of COPD. It has also done a great deal of work on pulmonary rehabilitation with its “Breathe Easy” groups, which help people who are suffering from COPD to access support networks and improve some of the scarring and problems that they have with their lungs. A recent study of more than 39,000 COPD patients showed that more than half had symptoms for six to 10 years before the diagnosis was made—my hon. Friend’s point is powerful—and 42% had has those symptoms for up to 15 years before being diagnosed.

I want to tell the story of Neil, 50 years old and from Norwich. He was continually misdiagnosed by doctors despite being at high risk of lung disease and showing signs of the condition throughout his 30s. By the time he was finally diagnosed, he had lost most of his lung capacity.

Neil was a long-term smoker who worked for many years in cold and dusty conditions. When he was younger, he visited doctors regularly and had breathless attacks that sometimes required emergency treatment in hospital. However, he was never offered a lung function test by his doctor, and he felt that his smoking habit was used as a reason to dismiss his symptoms and not investigate them fully. At the age of 39, he finally managed to see a specialist in the hospital, but his symptoms led doctors to think that he had asthma.

When a doctor told him the extent of the scarring and damage already done to his lungs, Neil decided to quit smoking on that very same day. He also cut back on some work to improve his working conditions. Five years ago, he developed two bouts of pneumonia. His health deteriorated: he felt constantly breathless and could barely walk 50 feet. Even at that stage, Neil was not given a lung function test or information about how to manage his condition; instead, he was told that he could expect to recover soon. He was forced to give up work completely and his wife Wendy had to start caring for him.

Eventually, a doctor told Neil that he had COPD. He had lost 70% of his lung function by the time he was told that he had COPD. He was able to speak to a specialist nurse at his local surgery who took the time to work with him and got him referred to pulmonary rehabilitation, and he became a member of one of the British Lung Foundation’s “Breathe Easy” groups, which are support networks that help people with COPD to come together to improve their conditions and exercise levels, to move forward and to improve themselves all round.

Neil can now talk quite a bit, and he speaks at length about his condition. He has decided that everyone who attends a “Breathe Easy” group becomes an expert on respiratory health and care. Fortunately, his experience was positive in the end, but he had lost 70% of his lung function before he was diagnosed with COPD—that could have been done five or 10 years earlier. Sadly, Neil’s story is a classic example of what is happening right now in GP surgeries and hospitals throughout the country. People have a right to know if they develop such a condition, and they must believe that they will receive the treatment that they want and deserve when they come forward with it.

A big Public Health England awareness campaign is due to take place in the east of England, involving a breathlessness exercise. I did it myself last year in Stevenage—although I would urge Members not to look at the photograph on my website that shows me taking the test because it was a bad hair day and it is an odd photograph—and the nurses were able to tell me that I had asthma, which is very well controlled. Throughout the day, they diagnosed a number of people with COPD, asthma and a range of other respiratory diseases. Had that bus not turned up in Stevenage and those volunteers had not been given those tests, a large number of those people would not know that they had a respiratory disease. Fortunately, the campaign will be rolled out across the whole of the east of England, so I hope that the Minister will visit it and identify whether it is a positive thing that could be rolled out throughout the country.

The NHS health check for those between the ages of 40 and 74 does not include a lung function or respiratory disease test, but 13% of all people over the age of 35 already have COPD. A lung function test should be included because, as my experience on the breathlessness bus in Stevenage showed, such a check would pick up large numbers of people, enabling them to get the care that they need. They will then be able to push on with their lives, instead of having to wait 10 years and only being told, when they are admitted to hospital with the possibility of dying within four years, that they might have COPD.

I am passionate about the need to improve basic care for people with asthma, and I join Asthma UK in highlighting the seriousness of a condition that affects 1.1 million children and 4.3 million adults in the UK. The sort of headlines that we saw last week, which were referred to by my hon. and learned Friend the Member for North East Hertfordshire (Sir Oliver Heald), are unhelpful when we know that too many people are complacent about asthma. Every 10 seconds, someone in the UK has an asthma attack. Every single day, on average, three people die in the UK from an asthma attack. The national review of asthma deaths, which was led by the Royal College of Physicians, suggests that two out of three of those deaths are preventable.

That review by the Royal College of Physicians was the first such review in this country. It was begun in 2012 and lasted a year, and it was published in May 2014. It found that 57% of people who died from asthma were not recorded as receiving specialist care 12 months before their death; 47% of those who died had a history of hospital admissions; and 21% had attended A and E within the previous 12 months. A written asthma action plan is a step-by-step guide to managing asthma and provides individuals with guidance on what to do if they have an asthma attack, but only 23% of the people who died had an asthma action plan, so more than 75% did not have one.

The Royal College of Physicians found that many asthma deaths could have been avoided had staff received better training. In fact, the expert panel found that 46% of such deaths could have been avoided had the existing asthma guidelines been implemented. The review also found evidence for both over and under-prescription of reliever inhalers, the blue bronchodilators. On average, someone should receive 12 inhalers a year; a number of people are receiving far fewer than 12 and, among a variety of other figures, some are receiving up to 50 inhalers a year. Just from the number of prescriptions, we can identify the target audience of people who will be seriously at risk of dying from an asthma attack.

The statistics and the all-party report both make it clear that too many people are not getting the basic levels of care and that there is great variation in the standards of that care across the country. It is essential that clinical standards are followed consistently. I have asthma myself, so I understand that the condition is complex and variable and should be taken seriously. People with asthma should continue to use their inhalers routinely and ensure that they attend their annual asthma review, at which they may discuss their diagnosis, medications and written asthma action plan.

Last year, more than 1 million people who have asthma did not turn up to their asthma review. I did, because my wife, my mum and my asthma nurse all gang up on me and force me to go every single year. They almost insist on me having my flu jab twice a year. In Parliament, I normally host a session for people with respiratory conditions to have their flu jabs each year. Unless I provide a picture of myself receiving the needle at that session, I am required to have another at my GP’s surgery in Stevenage. So I have to smile at the camera while the lady enjoys stabbing me with a needle—I am sure she takes a little longer than she should. I do that every year.

Let me tell the House about my experience of asthma. I was diagnosed with it when I was eight, and I am now 38 years of age. The Minister will be shocked and disappointed to know that my treatment has not changed in 30 years. The experience at the doctor’s that I had when I was eight is exactly the same as my experience now, except that nowadays I see an asthma nurse, whereas then it was a doctor. The asthma nurse takes the time to go through my peak flow monitor with me, and she weighs and measures me—I think I get shorter every year, and a little heavier—but in effect that is what the doctor was doing when I was eight, although then I was getting slightly taller, if slightly heavier too. The reality is that things have not changed at all.

I was one of those children who was diagnosed with bronchitis from the age of about five until I was eight. The doctors thought, “Oh no, it hasn’t gone in three years, so he must have asthma”, so I was given my inhalers. If I turned up to the doctor’s and said, “I have got this or that”, they would say, “Are you using your inhalers?” I would reply, “Yes, I am using my inhalers.” They would say, “Why don’t you take your blue reliever inhaler”—they call it a Ventolin bronchodilator—“a little more?” That would be my treatment. I have not had antibiotics, but if I were younger, they might have given me a two-week course of them and told me to come back if whatever it was had not cleared up. In effect, that is what I got when I was eight and what I get now when I am 38. That is why we have the highest rate of respiratory deaths among the OECD countries—the treatment for asthma for people at GP surgeries up and down the country has not really changed. It is exactly the same.

There has been some progress. I am delighted to report that after a campaign of three and a half years by myself, other Members of Parliament and Asthma UK, for the first time we can now have asthma inhalers in first aid kits in schools. It took us three and a half years, which is ridiculous, because those inhalers are prescribed medication, which could not simply be given out by a teacher.

--- Later in debate ---

[Sir Oliver Heald (North East Hertfordshire) (Con)]

Rightly, my hon. Friend the Member for Stevenage (Stephen McPartland) and other Members who have contributed have talked about the most serious incidents and life-threatening situations. I want to say a few words about mild asthma, of the sort that can affect someone playing sport. If we are talking about campaigning about asthma awareness, there are quite a lot of people who are not going to die because of their asthma but whose lives are spoilt by it.

My own experience is that when I was young I was a keen rugby player. I could play rugby, but after a match I was always wheezy. It never occurred to me that that was because of a medical condition, but I was talking to my doctor one day, when I had been playing rugby for years—I was in my teens at the time—and he said, “Actually, we can help you with that.” He gave me an inhaler and told me to take a puff before I played, and my life was transformed. There was no more wheezing and I improved; I was able to play rugby much better, and was able really to enjoy it for the first time. There must be a lot of people in the country who have not really realised that they have asthma, as it is undiagnosed.

My first point is that in making people aware of respiratory conditions we are talking not just about saving lives but about improving the quality of people’s lives. I am told that there are any number of top sportsmen who have the same condition of mild exercise asthma.

[Caroline Nokes]

My hon. and learned Friend makes an interesting point. This is a problem not just for elite sports players and those who participate in sport regularly, but for those who are not active enough, or not taking part in any physical activity. They tend to look for reasons not to take part in those activities and being a bit wheezy, for some, can be a convenient excuse.

[Sir Oliver Heald]

My hon. Friend makes a good point. It is easy to see this issue as 1 million hospital admissions and the third highest cause of death, without also looking at the huge effect on other sufferers. We know that 5.4 million people are being treated in the UK for asthma, and I rather share the view that the National Institute for Health and Care Excellence, in saying that a third of people have no symptoms at any particular time, may be making a slightly complacent comment. By the time I was in my late 20s I had no symptoms at all and I no longer needed to use an inhaler to do sport. However, when I had a problem one year with flu, they came back. It is a variable condition, and that can be underestimated.

Kay Boycott, the chief executive of Asthma UK, said:

“Asthma has many complex causes, which is one of the reasons why it is sometimes difficult to get a definitive diagnosis. It is also a highly variable condition that can change throughout someone’s life or even week by week, meaning treatment can change over time.”

One of the great lessons to learn is that we need to monitor regularly for asthma. My hon. Friend the Member for Stevenage made a particularly important point about attending the asthma clinic for the test.

The Royal College of Physicians recently made a point about variability and how asthma can suddenly deteriorate. As it said, there are different kinds of asthmatics: brittle asthmatics who can move from having no wheeze to severe problems; others for whom it appears just in the early morning; and others for whom it disappears for a period. We need more research and a campaign on awareness.

Drugs (Ultra-rare Diseases)

Caroline Nokes Excerpts

Tuesday 20th January 2015 Westminster Hall

[Greg Mulholland]

That is a good question, and it is the nub of the issue. It is not finances. Finances are clearly an issue, but it is important to get the message out that they are not the cause of the hold-up. There is an element of bureaucracy in the process, which I will address. I know that the Minister is seeking to ensure that we have a proper process, but ultimately we have to make decisions based on the effectiveness of the drugs. In this case, both drugs have been shown to work and are licensed and used by health systems in other countries.

[Caroline Nokes (Romsey and Southampton North) (Con)]

I thank my hon. Friend for giving way, and I congratulate him on securing this debate. On effectiveness, would he agree—I hope the Minister also concurs—that it is about timing, particularly with Translarna? The drug will extend the ability of young boys to maintain their mobility and to keep out of a wheelchair, which is why it is so critical that the bureaucracy is speeded up for individuals such as my constituent Jagger Curtis and his dad, James. They need the drug now, not in six, 12 or 18 months’ time. It comes down to ensuring that the drug is available when it will be effective.

[Greg Mulholland]

Absolutely. That is very much the case with Morquio, too. Simon and Katy Brown have told me that the drug is having a huge impact now. I met Sam and saw him running around when he visited my surgery. When there is deterioration in such conditions, the clock can never be turned back, which is why we are urging the Minister to address the situation. I am delighted that we had meetings with him. All the organisations involved, the MPS Society, the Muscular Dystrophy Campaign, Action Duchenne and Joining Jack, are urging the Minister and NHS England to find a way to ensure that all these children, not only the 111 who are currently on the trials—some of whom are, of course, receiving placebos—but all 138 children with these conditions, are able to access the drugs now. We have asked for a decision on that by the end of January.

We are in this situation because a decision was supposed to have been taken by NHS England on 15 December 2014, but a letter was sent by the MPS Society and a young man with Morquio syndrome, Kamal—I am delighted that his family are visiting Parliament today—and on receipt of that letter NHS England, realising that its process was potentially discriminating against people with ultra-rare conditions, pulled the entire process, leaving all these families in limbo. NHS England has a responsibility to put another proper, robust process in place.

Oral Answers to Questions

Caroline Nokes Excerpts

Tuesday 13th January 2015 Commons Chamber

[Dr Poulter]

I do not think that people wanting to see their GP was at all helped by the previous Labour Government’s disastrous decision to contract out the GP out-of-hours service. Many patients are now struggling to receive appointments in the evenings and at weekends. The previous Government also broke the link with family doctors. To reassure the hon. Lady, the latest GP patient survey results suggest that less than 2% of patients who want GP appointments have to resort to walk-in centres or A and E departments. Under this Government, we have put in place an extra 1,000 GPs.

[Caroline Nokes (Romsey and Southampton North) (Con)]

4. What progress his Department has made on its long-term plans for easing pressures on A and E departments and preparing the NHS for the future.

[Mr Mark Spencer (Sherwood) (Con)]

13. What progress his Department has made on its long-term plans for easing pressures on A and E departments and preparing the NHS for the future.

--- Later in debate ---

[Caroline Nokes]

Does my right hon. Friend agree that the NHS 111 service has been unfairly criticised by the Opposition, despite their key role in establishing it, and that it has provided impressive support this winter to our A and E departments by suggesting to patients convenient and effective alternatives to the emergency department?

[Mr Hunt]

My hon. Friend is absolutely right. Part of the solution to the pressure in A and E is providing good alternatives, and in the last year for which we have figures, the 111 service took 12 million calls, which is three times more than the 4 million calls that NHS Direct took in its last year of operation, and 27% of people said that had they not called 111 they would have gone to A and E. That is a huge success.

Physical Inactivity (Public Health)

Caroline Nokes Excerpts

Tuesday 18th November 2014 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

It is a pleasure to serve under your chairmanship, Mr Weir. I congratulate the hon. Member for Blaenau Gwent (Nick Smith) on securing this important debate. I feel somewhat daunted to be following the hon. Member for Worsley and Eccles South (Barbara Keeley), who is something of an expert on women’s sport and fitness. That was to be the focus of much of my speech, but there are a couple of other areas that I would like to discuss.

We have heard at length this morning about the problems associated with a lack of physical activity, and I wanted to focus briefly on some of the positives. Perhaps I come from a fortunate position and constituency, because Test Valley, in the south-east of England, is the eighth most active borough in the country. I spent 10 years of my life as the leisure portfolio holder on the local council, so I should know a little bit about what we did to encourage such activity, to ensure that there were pathways from school sports into clubs and to try to retain the crucial group of 14 to 18-year-old girls, where there is the most stark drop-off in levels of physical activity.

Test Valley borough council has long had a determined commitment to ensuring that sports clubs are supported, encouraged and celebrated. The weekend before last, I was lucky enough to go to the inaugural Romsey and District sports awards—a fantastic, uplifting event at which there was absolutely no shame about celebrating elite sport and the successes of those who have achieved a phenomenal amount, either as individuals or as part of teams and clubs. But there were also categories for veterans, a critical group that is being encouraged to stay in sport longer and be active later in life. There were also categories for coaches and volunteers. The volunteers were perhaps the most inspiring group, as they are giving up thousands of hours every year to ensure that clubs can keep going.

In my area, we are lucky to have a wide range of clubs. Every year there is a sports fair at Romsey sports centre, where the pathways from school sport into clubs are promoted and made accessible and inviting. One of the biggest barriers to physical participation is cultural. I always use the example of a golf club where, after walking in through the door, people are almost inevitably told that they are wearing the wrong things. The same is true of many gyms, where it is imperative to be wearing the right kit. Wherever people go, there are mirrors on every wall. People who feel somewhat nervous or anxious about making that first step—I firmly believe that the first step is the most important—can sometimes be put off instantly on arrival.

I have long said that the hardest thing when it comes to keeping girls and women in sport is that wonderful substance Lycra. Everyone in the gym will be wearing it, yet those who feel slightly self-conscious about their appearance, or those who might be overweight, may look in the mirror at themselves clad in Lycra and decide that the gym is not for them and that they are never coming back.

It is critical that we have welcoming environments that are accessible in terms of both cost and the physical structure of the buildings. It is also imperative that we have a welcoming, enthusiastic and encouraging culture among instructors. I declare an interest as a parliamentary ambassador for the YMCA, which has led the way on physical activity and sport over the past 150-plus years. It is very seldom that people will go into a gym in this country and find instructors who have not been taught by the YMCA how to make the environment welcoming and successful and how to enthuse people to achieve what they can.

As chairman of the all-party group on body image, I have focused on some of the cultural barriers to participation, but I will say a few words about why it is important to encourage and not to “fat shame,” a hideous term. I was interested to hear the hon. Member for Worsley and Eccles South refer to “Fatty Must Run”, about which I have some reservations because the first step is the hardest. In a nation of people who are not taking part in enough sport and exercise, we have to encourage that first step. We have to make it culturally acceptable and the norm for people to take part, and we have to give them a pat on the back when they start taking part in sport.

The fat-shaming that we see from celebrities such as Katie Hopkins does the wrong thing, and we have to try to encourage everyone, whatever their size or shape, to take part in sport. It is true that people can be healthy at any size and inactivity is a danger for its own sake, so, whatever their body shape, I encourage people to participate.

I conclude by picking up the point about the participation of girls and women. Fifty per cent. of girls are put off sport in secondary school, and that feeling can continue for the rest of their lives. My hon. Friend the Member for North Swindon (Justin Tomlinson) referred to jumpers being used as goalposts, which is an important point. It is easy for boys to take part in football because all they need is four jumpers and a ball. Traditional women’s sports require a great deal more equipment, and it is therefore harder for girls to carry on in sport once they leave school.

Many other hon. Members wish to contribute to this debate, so I will finish with one parting shot to the Minister: the Olympic legacy is critical. A feel-good factor is not enough; we want genuine well-being as our Olympic legacy.

[Several hon. Members]

rose—

Oral Hormone Pregnancy Tests

Caroline Nokes Excerpts

Thursday 23rd October 2014 Commons Chamber

[Caroline Nokes (Romsey and Southampton North) (Con)]

I, too, congratulate the hon. Member for Bolton South East (Yasmin Qureshi) on having secured this important debate. I will keep my comments brief because, unlike many other Members present, I come to this subject quite late, and solely through a constituency interest; one of my constituents contacted me. I congratulate the hon. Member for City of Durham (Roberta Blackman-Woods) on her in-depth knowledge; sadly, I will not be able to add much to that.

I simply want to comment on the contact I have had from my constituent, who first approached me on this issue back in the summer. He desperately wanted to come to the launch of the all-party parliamentary group—I congratulate those Members who have set it up, perhaps particularly my hon. Friend the Member for Enfield North (Nick de Bois), who has worked tirelessly on this issue—but could not attend because his daughter, Vicky, was in hospital. She remained in hospital for 11 weeks. She underwent three major operations, and very nearly died during one of them. All that was entirely due to the fact that her mother had taken an oral hormone pregnancy test some 42 years ago. I know it is 42 years ago, because it particularly struck me that Vicky was born in the same year as me, 1972, which is well after it was known that there were problems with oral hormone pregnancy tests. That information had not been communicated to GPs.

We all know how quickly information now spreads, particularly via the internet, so if there are ever any concerns about medication or medical treatment, we very quickly learn about them. It seems incredible that in 1970 there were known to be problems, yet that information was not communicated to GPs until 1975. Vicky was born during the five-year window when the problems were well known and the drug had had its licence removed but it was still being prescribed by practitioners.

Vicky has a phenomenal raft of problems that were caused by the drug. She was born with an ectopic bladder and malformations of her feet and legs. She also has an incomplete pelvis and significant spinal problems. She is doubly incontinent, and for the past 24 years she has been confined to a wheelchair. She is unable to walk at all. I have met her several times, and when I first met her I had no idea what had caused her disability. I just knew her as a really lively, bubbly, enthusiastic member of the Romsey disability forum. It was not until her father contacted me and explained how her problems had come about that I began to appreciate what had caused her disability and how preventable it was. She could have been born completely healthy, had her mother not been given those drugs.

Vicky’s family have been quite amazing. They are really courageous and brave, and they were determined to hear the issue debated on the Floor of the House of Commons. They are pleased that it is being discussed today. What they and many other families want is the transparency that other Members have been calling for. They want to know what is in the documents that have not yet been made publicly available, and they would like me to urge the Minister—as many other colleagues have done today—to ensure that they are made available.

The family also want closure, and I do not think that that is unreasonable. We have heard from other Members that closure is critical to these families. The family support the calls for an independent panel to examine the documents, to come to an understanding of what went wrong and to give them the answers that they so desperately seek. I do not think those are big asks. In fact, they are really very modest and reasonable, and I sincerely hope that the Minister will be able to grant the wishes of the many families who have campaigned for so long, and give them the answers they are looking for.