Southern Health NHS Foundation Trust

Caroline Nokes Excerpts

Tuesday 3rd May 2016 Commons Chamber

[Alistair Burt]

Let me point out that we have announced an increased resource for mental health of £11.7 billion. The extra £1 billion that the Mental Health Taskforce recommended being spent by 2020 will be spent, and it will be spent right across the board from perinatal mental health to crisis care. It will also improve baselines to ensure that the governance and quality of foundation trusts are good enough, and we are watching what CQCs are spending. Yes, we recognise that there has been historical underfunding from Governments of all characters, but we are determined to improve it and the money is there.

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

All too often it is our constituents with mental health problems and learning difficulties who find it hardest to get their voices heard. Those who are patients of Southern Health are not in a position to call for urgent change. I note that the Minister has said that the delivery plan is being evaluated, but can he reassure us that that is being done with the utmost speed so that we see improvements on the ground and not just more reports gathering dust?

[Alistair Burt]

Today, I met departmental officials and spoke to the regional director responsible for NHS improvement and, as I mentioned earlier, the deputy chief inspector of the CQC who is responsible for this report. I can assure my hon. Friend that, in so far as it is up to me or the Department, that change will be adequately delivered with a sense of urgency, because, as she rightly says, patients and families have, in some cases, waited much too long for this. If warm words are to mean anything, we must show that delivery follows.

Brain Tumours

Caroline Nokes Excerpts

Monday 18th April 2016 Westminster Hall

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

I add my congratulations to the Chair of the Petitions Committee, the hon. Member for Warrington North (Helen Jones), on the Committee’s excellent report, and to every Member on today’s thoughtful debate. I pay particular tribute to colleagues who spoke movingly about their own experiences or those of people close to them.

I will briefly mention one of my own constituents, but first echo the comments of my hon. Friend the Member for North Dorset (Simon Hoare) about Sacha Langton-Gilks. It is clear that someone is a dedicated and doughty campaigner when they not only attend the surgeries of their own Member of Parliament, but pitch up at those of other Members. Sacha came to see me when I was a new MP—bringing with her the legal requirement, one of my constituents, who introduced her—and spoke incredibly movingly about her son, David. She also brought with her the HeadSmart cards and emphasised the importance of early diagnosis and the HeadSmart campaign, which seeks to bring awareness to schools, doctors and, particularly, parents. As a result of that meeting, I was able to introduce her to the leader of Hampshire County Council, who agreed for those cards to be distributed in Hampshire schools. Those cards are incredibly informative, outlining symptoms in an age-specific way and, above all, not provoking alarm; they just educate people. It is important that we increase awareness of brain tumours without instilling fear in people.

[Rebecca Harris]

I, too, commend the HeadSmart cards, but does my hon. Friend agree that unless the medical profession is more aware of brain tumours we will run into the problem, as we have time and again, that it overlooks parents’ instincts in such cases?

[Caroline Nokes]

I pay tribute to my hon. Friend’s work as chair of the APPG, and I will highlight exactly that situation with the case of a constituent. Brain tumours are not as rare as we might think; they are the biggest cancer killer of children. That is why I argue that research and knowledge are critical.

I received an incredibly moving letter from my constituents, Charlotte Swithenbank and James Butler, the parents of Alfie, who is not yet two years old and has been fighting his cancer for more than a year. As in many cases, Alfie was not initially diagnosed. It was not until his seventh trip to the doctor in just two weeks that he was referred to Southampton general hospital. Within 36 hours of admission, he was diagnosed with a grade 3 infant ependymoma, and he has since had more than 24 hours of surgery. He has also had chemotherapy.

[Simon Hoare]

Does my hon. Friend agree that there may be a correlation between a perception that brain cancers and brain tumours are somehow lower down the pecking order and the fact that GPs are less inclined to refer? They do not necessarily see them as part of the great initiatives of the Department.

[Caroline Nokes]

To be brutally honest, I do not know, but I agree with the chair of the APPG that it is critical that the medical community be incredibly aware of such cancers and make referrals as quickly as possible.

Alfie has been for proton beam therapy in the USA and has lived in hospital for more than five and a half months of his short life. He is scheduled to have his MRI today, which is why his parents are not here; I am sure that they will catch up with the debate later. That MRI will, we hope, establish whether Alfie has gone into remission. We want that news to be positive, but as his mother, Charlotte, says, even if Alfie is now in remission, given the type of tumour he has, there is a 50% chance that it will return within seven years. As a family, they will live in fear even if he has gone into remission.

Charlotte also says that early diagnosis is key. It was her persistence in going back to the GP time and again, and refusing to accept that it was just an ear infection, that meant that Alfie’s diagnosis, in comparison with many, was relatively quick. That got him referred to an excellent children’s unit, which has helped him to have a fighting chance.

Charlotte has sought to convey to me how urgent this issue is. Unlike other cancers, the incidence of brain tumours is rising and the improvements in outcome that we have seen in other cancers have not been matched in brain cancers. In Southampton, we are incredibly lucky to have the Cancer Research UK unit located adjacent to the general hospital. MPs are invited there every year to hear about the work it does and to see graphs that show that, for the majority of cancers, treatment rates are more successful and incidence is going down. However, for brain tumours, those are going in the other direction; the cures have not been as forthcoming as for other cancers.

We are all here today to convey the message to the Minister that we want more investment in research in this field, so that more parents do not have to go through what Charlotte and James are going through, and more children like Alfie have the best possible chance of a positive outcome.

Contaminated Blood

Caroline Nokes Excerpts

Tuesday 12th April 2016 Commons Chamber

[Diana Johnson]

I wish to move on now to highlight a few of the problems with the consultation. First, as has already been said, many of the existing recipients will receive lower payments under the new scheme. The Government’s proposals would end all discretionary support, such as winter fuel allowance, child supplements and low income top-ups, which means that many people will lose out, potentially by thousands of pounds a year.

Secondly, most of the current beneficiaries have hepatitis C stage 1 and currently get no ongoing support. They are left begging for individual payments from the Caxton Fund. The Government proposals will provide annual payments for people in stage 1, which is welcome, but those people will be subject to regular individual assessments. That could result in fluctuating payments and reduced financial certainty for individuals. Assessments will also take only clinical factors into account. They will not look at the loss of education or employment, and decades of loss of amenity, ill health and loss of earnings. According to the information from the Government, those assessments will cost £500,000 a year to carry out. Would that money not be better spent on providing financial support to those people?

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

I congratulate the hon. Lady on her determination and her decision to champion this issue. She highlighted the decades of ill health from which many suffer. There is also the emotional stress and trauma. Does she agree that the consultation process itself has added to that burden for some of those people? That is certainly the message that I have received loud and clear from my constituent, Mike Webster, who came to see me on this issue.

[Diana Johnson]

The hon. Lady makes a valid point. I will proceed with my concerns with the consultation, because I would like other Members to speak in the debate.

My third point is about the inadequate provision for the “affected” community—the widows, the partners and the dependants of those infected. The proposals for widows appear to be extremely complex. They create six categories of widows, with big variations in what is offered within each category. Department of Health officials could not explain how they would work when they met the APPG’s secretariat and have not provided an explanation of these proposals as promised. There also appears to be nothing here for dependent children.

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.