Oral Answers to Questions

Pauline Latham Excerpts

Tuesday 7th February 2017 Commons Chamber

[Nicola Blackwood]

I thank the hon. Gentleman for drawing our attention to this issue. Sometimes the simplest solutions are the most effective. We want to make sure that such innovations are driven across the NHS more effectively, which is exactly what our academic health service networks are there for.

[Pauline Latham (Mid Derbyshire) (Con)]

17. Now that four failures have been recorded of the main drug used to protect UK patients from malaria, and scientists are warning for the first time that resistance may be increasing, will the Minister outline what further steps are being taken to tackle antimicrobial resistance in the coming years?

[Nicola Blackwood]

AMR is a global issue. We are world leaders in this, and we are working proactively with international partners to identify new and innovative approaches to the treatment of a range of challenging resistant infections, including malaria.

--- Later in debate ---

[David Mowat]

The volume has increased greatly, and there are something like 2,000 more people being diagnosed every day. The hon. Lady is right: of the eight cancer standards against which we judge ourselves, we meet seven, and the 62-day one has not been met. We need to do more to achieve that, and the cancer strategy set out a pathway for doing so. We have particularly invested in the early diagnosis component; we have invested £200 million in early diagnosis and getting a 31-day all-clear or referral for treatment. That is the pathway to meeting the 62-day target. She is right to raise this, because it is an important indicator and we need to do better.

[Pauline Latham (Mid Derbyshire) (Con)]

T1. If he will make a statement on his departmental responsibilities.

[The Secretary of State for Health (Mr Jeremy Hunt)]

We know that a strong primary care system is the bedrock of the NHS, which is why I am pleased to announce today that NHS England will publish the new GP contract, agreed by the Government, NHS England and the British Medical Association. It will see almost £240 million extra invested in GP services; require GPs to establish whether overseas visitors are eligible for free care, allowing the NHS to better recoup the costs of that care; and improve access for patients by removing extra funding if GPs regularly close for afternoons during the working week.

[Pauline Latham]

Will the Secretary of State consider putting a GP in every A&E department so that they can additionally triage patients who are not so ill and advise them to go home and see their own GP on another occasion?

[Mr Hunt]

My hon. Friend is absolutely right. Actually, the policy is that all A&Es, where space is available, should do that. The hospitals that do it have by far the most successful results—not least Luton and Dunstable, which has pioneered that model.

World Autism Awareness Week

Pauline Latham Excerpts

Thursday 28th April 2016 Commons Chamber

[Pauline Latham (Mid Derbyshire) (Con)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing this important debate. I realised the importance of this subject just before the last election when I met a group of parents in my constituency who were talking about the problems that they had experienced. I had previously met people with autism, but I had not understood the pressures that parents and families are put under by the diagnosis, or even by not having a diagnosis of their children’s problems.

I met people who had never received a diagnosis and did not think that they would get one because nobody seemed to recognise that their child had autism. However, it was clear from what they said that the children in question were suffering from a form of autism, although it had never been recognised. Those parents were at the end of their tether and did not know where to turn to next. It is not just mums who have this problem; there were also a lot of dads at that meeting. It is not only about children; it is often adults for whom even less support is available. Whole families are affected, and autism can cause such a big strain that it affects the parents’ marriage or partnership. Many of those situations break down when people have one, two or even three children with autism.

I want to focus on local situations in Derby and Derbyshire, where I feel that the system is failing children who need the diagnosis and help in schools. Through an active group in the area—particularly in Spondon—I have met many people who have autism or whose children have autism. Last year and this year the cathedral has been lit up blue to highlight National Autism Week and to show people that there is a problem in that area. I commend it on that.

[Hannah Bardell (Livingston) (SNP)]

The hon. Lady is making interesting and powerful points and has mentioned the problem that people with autism face. In my office I have employed someone on the autistic spectrum. Does the hon. Lady agree that we need to change the narrative in some respects, because people on the autistic spectrum have specialist and incredible skills, and it is so important that we are positive about those people and the opportunities that they provide to society?

[Pauline Latham]

I completely agree. There are some incredible people with autism, but I am talking about the problems that they need to overcome to access proper education and help for themselves and their families. We must focus on the fact that it is the system, not the people, that is the problem.

In Derbyshire, families have to wait far too long between getting a referral for autism spectrum disorder and a diagnosis. Local authorities need better training for local authorities and schools regarding education, health and care plans and dealing with ASD pupils. We need a better transition from special educational needs statements to the new EHCP, and that has been badly managed in my area.

ASD behaviour and management strategies should be a mandatory part of the teaching qualification for teachers and teaching assistants. There also seems to be a lack of knowledge by parents on the legal rights and services available to them as a family dealing with autism, and we as a society need to recognise that and put out more information for those who are dealing with autism. Guidelines from the National Institute for Health and Care Excellence recommend a maximum of three months between a referral and first appointment for an autism assessment. It has been estimated that in Derby that takes closer to 12 months, which is far too long when a child is having problems with their behaviour in school and needs help now.

The Children and Families Act 2014 mandated local authorities to move from special educational needs statements, which outlined a child’s needs and how help would be given, to an education, health and care plan for each child. It also reduced the amount of time that children with special educational needs had to wait for an education, health and care plan from 26 weeks to 20. However, in Derby city the average wait is 35 weeks, and that is after people have already waited for 12 months. Derby local authority did not make sufficient plans to prepare itself for that change, and it has been on the back foot ever since. Until February 2016, only 12% of statements had become education, health and care plans, which is really unhelpful for families. That gap causes delays in the child’s educational development, and places additional stress on the families caring for them.

I believe that Derby city is now asking schools to complete the education, health and care plans even though they are not meant to, and the training provided to school staff on changes to the law has been labelled by some parents as “diabolical”. Admin staff at schools do not understand the difference between a special educational needs statement and education, health and care plans, because they often copy and paste them. Without an EHCP, children on the autistic spectrum disorder are managed by inexperienced staff with a fundamental lack of understanding of ASD.

Derby city local authority has to employ consultants who know what they are doing to help make changes, but they cost four times as much as usual school administrative staff. When all local authorities claim that they are short of money, that seems to be a complete waste of money, although if it gets the process completed more quickly for families and children with autism, it is obviously better for them. However, that money could be better spent on mental health care for autistic children and their families.

If local authorities consistently ask schools to carry out the care plans, as is happening in Derby, we must ensure that schools are given the necessary funds and training for that. There is no obvious legal accountability if deadlines are not met. We must support the parents and siblings of children with ASD. Early diagnosis is key to avoiding the mental health problems associated with not knowing what is wrong and being able to deal with it, and we must move faster to help those children and families to deal with their problems.

--- Later in debate ---

[Mrs Anne-Marie Trevelyan (Berwick-upon-Tweed) (Con)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on her tireless work over many years to raise awareness of autism and to start to change Government priorities around those in our country who are not neuro-typical beasts.

My hon. Friend the Member for Bury St Edmunds (Jo Churchill) and the hon. Member for Argyll and Bute (Brendan O'Hara) have described movingly some of the experiences of families and those who suffer from autism. As my right hon. Friend’s Autism Act 2009 was going through the House, I was battling to find support and a diagnosis for my eldest young son. It was evident to me that my very bright and articulate son was not like other boys of his age. He had an extraordinary level of concentration and extremely good reading skills and could converse at length with adults in a most unusual way, but he was also very anxious, fearful of noise and bright lights and unable to cope with anything unexpected in his day—the slightest change to the time we left the house, and all hell broke loose.

Once my son started his schooling, at the age of three, his young life and day-to-day experience became increasingly more challenging, and school life, which demands conformity, became something he was entirely unable to cope with. We struggled on for several years, because no one seemed to have any ideas; teachers said nothing except, occasionally, “Well, come and pick him up early if it gets too much”, “Is it all right if I call if he’s getting difficult in class?” or “Will it be all right if I don’t feed him with everyone else because it seems to be a problem in the canteen?”. I was just a mum with a little boy who seemed to have so many talents but could not cope with daily life.

Eventually, my GP, a wonderful man, referred us to a child psychologist in Newcastle, whose failure to correctly diagnose my son as autistic was nothing short of shocking. Not only did he fail to see what was becoming obvious to our family and our friends, who were trying to support us, but he tried to medicate my son with Ritalin, claiming that he suffered from attention deficit hyperactivity disorder—two behavioural traits entirely absent from my son’s behaviour. The doctor had failed to speak with my son’s teachers, having claimed that he had, before making his diagnosis, and it was only because I fought back against the medical profession’s failure that my son was not inappropriately drugged.

Thanks to huge financial support from my family, we eventually found a team of paediatric doctors based at Great Ormond Street hospital in London, 350 miles from our home in Northumberland, who quickly diagnosed my boy as an Asperger’s syndrome sufferer. We received support, understanding and guidance from these wonderful specialists who empowered us, James’s parents, to challenge school rules and regulations in order to get the changes to his learning environment so that he could once again enjoy and thrive in it. We have encountered two or three teachers for whom medals would be inadequate to recognise how they have put themselves out and learned themselves what it means to be an autistic little boy so that they can help other children coming through the system afterwards. As I say, medals will never be enough for them.

Without good friends, good luck and financial support, I know that our son would have fallen out of school by the time he was six or seven. The pressures that normal life put on our autistic children should not be underestimated. No right-thinking person would ask a child with a broken leg to run up the stairs, but the invisibility of autism means that these children are asked to do things that, given their hypersensitivities or gaps in neurological connectivity, simply ask too much of them.

[Pauline Latham]

My hon. Friend’s son was extremely lucky because he had a mum who was prepared to fight and had the ability to fight. There are many parents like her who will fight for their children, as most parents want to do. However, some parents do not have the ability or the confidence to do that, and these are the ones that are really being let down by the system.

[Mrs Trevelyan]

I absolutely agree with my hon. Friend. This is part of the reason I am here. I decided that advocacy was needed for those who are unable to access the system, who do not know how to fight back or who are too honest and quiet folk trying to get on with their day, muddling through it with difficult jobs and complex family environments. For such people it is too hard to fight what still today seems to be an implacable system in so many parts of our country.

The legislation of my right hon. Friend the Member for Chesham and Amersham—the Autism Act 2009—has begun to change attitudes towards autism, and I am now 10 years on from the battles I had to fight. The general population is becoming aware, slowly, of this invisible disability. The challenge is its invisibility—until it becomes visible through a crisis.

Many of our greatest artists and scientists have been on the spectrum—men and women who see the world differently from those of us who are “neuro-typical”, as my son always refers to me—mostly as an insult, I suspect, but I take it as it is! As a nation, we should value those who offer an understanding of our world that we neuro-typical folk simply do not have. They are vital to our growth as a nation, both culturally and economically.

The genius of the great Alan Turing brought us the computer—possibly the greatest leap since the steam engine—yet he was shunned and misunderstood throughout his life. We can read about his school years, which were truly awful. The damage that society inflicted on him through a lack of understanding and a blatant disregard for his difference in character highlights what we must reverse, 70 years on, to ensure that no child on the autistic spectrum is lost to us or our nation.

Small changes to the school environment and support for families that are bringing up autistic children with day-to-day tasks, which can reduce their stresses, can lead to positive and thriving outcomes for these wonderful members of our communities. Most importantly, we need a team of paediatric experts across every part of our country who can diagnose autistic children early on, and we need councils and schools that are trained and flexible in supporting these children to fulfilling lives.

I recently met a family in my constituency with three boys, two of whom have been diagnosed. I also have in Alan Carrick, at Northumberland County Council, a passionate advocate for all our special needs children, and he is particularly interested in supporting those on the autistic spectrum. It is difficult for him to meet the needs of each and every autistic child because there is not enough flexibility for him to provide preventive and creative solutions for individual families, which would provide practical support.

If we can reduce the day-to-day pressures on parents through low-cost early interventions, we will increase the chances of these families staying together. There are obvious long-term, value-for-money arguments for investing in these families early on to stop long-term costs to the state of family breakdown if we fail these children and their families at the early stage. I call on our Government to encourage our councils to be creative and forward thinking in their support for our autistic children—most urgently of all by getting speedy diagnosis so that support can hopefully follow.

Brain Tumours

Pauline Latham Excerpts

Monday 18th April 2016 Westminster Hall

[Pauline Latham (Mid Derbyshire) (Con)]

It is a pleasure to serve under your chairmanship, Sir Edward. I congratulate the hon. Member for Warrington North (Helen Jones) on securing this debate. Today’s attendance is testament to how many of us have been approached by constituents, not just now but before the petition, asking us to come and speak on this subject. I will not take up too much of the House’s time.

Last November, I visited the children’s brain tumour research centre at the University of Nottingham, which gave evidence to the Committee’s report. The research centre is an outstanding medical research facility that provides vital support for children and their families as they undergo treatment, and for families who have lost a loved one to a brain tumour. The research centre also services Derbyshire—everyone with a brain problem has to go across to Nottingham—and it gives an outstanding service. The amazing work done in such centres is being held back, as has been said, by a lack of funding, which has been a problem for decades.

Brain tumours are the biggest cancer killer of children and people under 40, yet brain tumours receive just 1.5% of the £498 million spent on research into cancers. I am in no way saying that money should be taken away from research into other cancers; rather, I am pointing to the success that increased funding has achieved in other cancers, such as breast cancer and prostate cancer, for which patients now have an 80% five-year survival rate, compared with less than 20% for brain tumour patients. The lack of funding for brain tumours creates a Catch-22 situation, because researchers are not attracted into the field as the funding is not there for them to work with. As the report states, existing levels of funding have not been sufficient for researchers, such as those at the children’s brain tumour research centre, to make significant advances in their understanding of this horrific disease, although they are working very hard and feel that they are almost on the edge of a breakthrough.

As well as an increase in funding for research on brain tumours, we need greater investment in educating healthcare professionals on the symptoms of brain tumours. Too often people are misdiagnosed by GPs. That is not really the fault of the GPs, because they have to know everything about everything, which is not possible. They sometimes think that the symptoms with which they are presented could not be a brain tumour, and therefore they fail to send the patient for a scan, which is the only way to diagnose a brain tumour. That leads to a situation where 61% of brain tumour patients are now diagnosed at A&E, with children being a high proportion of them. Again, there is a Catch-22 because late diagnosis makes it harder to place patients in clinical trials to research much-needed cancer drugs. Also, the later they are diagnosed, the less chance there is of a cure.

Building on the success of the HeadSmart campaign in incorporating the symptoms of brain tumours, and the variants in children, young people and adults, into National Institute for Health and Care Excellence guidelines on cancer would help GPs to know when they are dealing with a brain tumour and would therefore increase scan referrals, which is the only way that a brain tumour can genuinely be identified. Early diagnosis would greatly increase survival rates and improve the quality of life of those who are diagnosed.

Will the Department tell us whether it believes that the current levels of funding are adequate for progress to be made on improving survival rates for this disease? We need extra funding. A constituent came to me who had been diagnosed with an incurable brain tumour. He wants more money to go into research, not to help him, but so that the people who come after him can have better care and better diagnosis so that they can be cured. We also need the extra funding—

[Sir Edward Leigh (in the Chair)]

Order.

NHS (Charitable Trusts Etc) Bill

Pauline Latham Excerpts

Friday 22nd January 2016 Commons Chamber

[Michael Tomlinson]

I think Mr Speaker would agree that these are not his amendments, but are my amendments. I understand, again, the point my hon. Friend makes, but I disagree with it.

May I return to the review on which the Government consulted in 2014? Following that consultation, the Department of Health published its response—it is an important point of principle in public consultations that there is a formal response. As a result of that response, we have these proposals and eventually this Bill, which is being ably presented by my hon. Friend the Member for Aldridge-Brownhills.

[Pauline Latham (Mid Derbyshire) (Con)]

Who will the consultation be with? Will it be with other charities, hospital users, people who have been to see “Peter Pan”, every hospital in the country, or every child who has ever been treated at Great Ormond Street? Who exactly will my hon. Friend be recommending the consultation is with? So far, that is not clear to me.

[Michael Tomlinson]

I envisage the consultation being as wide as possible. My hon. Friend mentions everyone who has been to see “Peter Pan”, and that would be a pretty wide consultation—perhaps not everyone has seen “Peter Pan” and I highly recommend that those who have not, do so. I envisage that the principle is that it is as wide a consultation as possible.

The Bill, which has wide support on both sides of the House, is the product of a public consultation, so I fail to see how Members can disagree with this proposal.

--- Later in debate ---

[Kit Malthouse]

No, I do not lack confidence in people’s independence of mind. I have great admiration for my hon. Friend, who is very independent-minded and, I am sure, conducts herself extremely well as a trustee. The point is that there is a danger of group-think, and I have given a number of examples illustrating how it can come about. I am sure that happened at Kids Company.

That point is important in respect of this Bill because, as my right hon. Friend the Member for North East Somerset—sorry, my hon. Friend—said, the charities we are talking about here are different. They are not like other charities. People associate them in their minds with the institution with which they are connected. They are seen as part of the national health service. When I give to the Great Ormond Street Hospital Children’s Charity, I know that I am giving, at one remove, straight to the ward. I am not giving the money because the charity might spend it elsewhere. I know that I am giving it to that hospital. The two are inextricably linked.

My right hon. Friend the Member for North East Somerset—I hope he will forgive me for constantly referring to him as right honourable, but it is only a matter of time—is absolutely right when he says that, at some point, something will go wrong. Even with Kids Company, which did not have such links, but was in receipt of public money, there were demands on the Government to do something. Indeed, the Prime Minister was on the rack to a certain extent because he had been associated with Kids Company.

[Pauline Latham]

My hon. Friend might not have been in the Chamber the other night for the debate on banking regulation, but the right hon. Member for Slough (Fiona Mactaggart) said that she had been prevented from becoming a member of the trustee board of a charity because she was a “politically exposed person”. Does my hon. Friend recognise that some of us will have difficulty supporting amazing charities, such as Great Ormond Street, which are not like the one he mentions?

[Kit Malthouse]

Yes. I am trying to get to a position where we can have confidence in the governance of charities, and confidence that when things go wrong, there are appropriate mechanisms for someone to step in and deal with things quickly. My point is that in the case of national health service charities—that is what people think of them as—at some point, the Secretary of State will be asked to sort out problems.

We have to remember that there are practicalities involved in this. If the Secretary of State is unable to take control of the board and replace the trustees, he or she cannot get immediate access to the bank account. They cannot get anybody to sign a mandate to allow them to control the money, or even to freeze the account to stop money flowing in or out. When this hospital pass, this UXB or unexploded bomb of a hospital charity that has behaved badly or got into trouble, perhaps through no fault of its own, lands in the lap of a Secretary of State, whoever it may be—it could be one of us here on these Benches in the future, perhaps—the inability to step in and take control will have a significant political, and indeed financial, impact. That might impact on the care that takes place on the ward.

--- Later in debate ---

[Wendy Morton]

As the Bill’s promoter, I rise to contribute to its Report stage.

We have listened to some interesting amendments from hon. Members, for whose submissions and contributions I am grateful, as they have enabled us to discuss, probe and question the Bill further, which is really important. It is worth reminding ourselves that, as of March 2015, there were about 206 NHS charities, with a combined income of £327 million. They do a terrific job and make a huge contribution to many patients, hospitals and NHS staff. Everyone will agree that the vast majority of them, like all charities, do fantastic work and that only occasionally does something go wrong. Sadly when it does, as has been said today, it always makes the headlines.

The vast majority of NHS charities use the corporate trustee model, whereby the Secretary of State does not appoint the trustees.

[Pauline Latham]

I do not know whether my hon. Friend plans to mention the special care baby unit at Royal Derby hospital, but it has existed for more than 50 years and raises millions of pounds to help those special babies who are born prematurely and need extra help. Does she agree that all the charities that support NHS hospitals do incredibly valuable work?

[Wendy Morton]

I agree wholeheartedly, and I am grateful to my hon. Friend for sharing with us the example of a hospital charity in her constituency and the fantastic work it does.

I thank my hon. Friend the Member for Mid Dorset and North Poole (Michael Tomlinson) for his amendment that would oblige the Secretary of State to carry out public consultation before making regulations consequential to the removal of his power to appoint trustees to NHS bodies. I understand where he is coming from. In my time as a councillor, many were the days when we discussed the pros and cons of public consultation. On the one hand, we often want more public consultation, but there are times when, as my hon. Friend the Member for North West Hampshire (Kit Malthouse) said, we feel it leads nowhere. It is an interesting point, though, and one that has provoked some lively debate. We, as elected representatives, often ask these questions about public consultation.

--- Later in debate ---

[Jane Ellison]

That is probably a helpful thing to put on the record. All Members have to use their time wisely and appropriately, whatever the business of the House is at any one time. That seems to have been a sensible thing to do. Thankfully, we have been able to give this small but important Bill the time and attention it deserves this morning.

I thank my hon. Friend the Member for Mid Dorset and North Poole (Michael Tomlinson) for tabling amendment 4, which seeks to oblige the Secretary of State to carry out public consultation that he considers appropriate—we have dwelt on that somewhat—before making regulations that make provisions consequential on the removal of the Secretary of State’s powers to appoint trustees to NHS bodies and to appoint special trustees. I do not believe that the amendment is necessary, for some of the reasons covered by others and on which I will try to elaborate.

Schedule 1 already makes a range of amendments to primary legislation that are consequential on the removal of the Secretary of State’s powers. They remove references to trustees in other legislation, because they would no longer make sense given that such trustees will no longer exist. The regulations that the Secretary of State does have the power to make under clause 1(2) are technical and remove any outdated references to such trustees, so that, in effect, tidies up all related provisions in primary or secondary legislation that might come to light in future.

It would, therefore, be unusual to consult the public. Members have given interesting examples of consultations in their own constituencies. It is fair to say that a degree of cynicism has been expressed, perhaps unduly, but I certainly agree with the principle that one should go into a consultation with an open mind. I assure the House that the Government seek to do that when they enter into consultations.

The situation with technical issues, however, is slightly different. The amendment seeks to consult the public on regulations that make technical, consequential changes, but proper scrutiny of such consequential changes is undertaken by Parliament. Indeed, Members have referred to such occasions. That is especially the case when consequential amendments are made by regulations to primary legislation, as the regulations are subject to debate and approval in both Houses. I hope that that gives some comfort to those who were concerned about the consultation issue.

Amendments 1 and 2 propose the retention in one form or another of the Secretary of State’s powers to appoint trustees, and we have had a good debate about that. Amendment 1 would give the Secretary of State the power to make provision, by secondary legislation, to re-establish the Secretary of State’s powers to appoint trustees to NHS charitable trusts. It would make such secondary legislation subject to the affirmative procedure and require that the draft secondary legislation be published three months before it is laid before Parliament.

Amendment 2 makes provision for the Secretary of State to appoint one or more trustees where he or she is satisfied that

“exceptional circumstances exist, or…all the trustee positions in relation to a particular charitable trust have been vacant for a period exceeding three months”.

As has been said, independence is the next stage in the evolution of NHS charities. Now that NHS charities have the choice to become independent or to remain as NHS charities with corporate trustees, the Secretary of State’s powers to appoint trustees have served their purpose and are no longer necessary.

Before the Government’s reform of the regulation and governance of NHS charities, nearly all the largest NHS charities had trustees appointed by the Secretary of State. As other hon. Members have said, particularly the Bill’s promoter, my hon. Friend the Member for Aldridge-Brownhills, such charities were frustrated by the dual regulation of NHS and charity legislation, and one can quite understand why they felt limited in their ability to best support their beneficiaries. Many of the charities wanted the opportunity to become independent so that they could fully realise their potential. Other hon. Members have made good points about their need to express their independence and distance from the Government.

The Government’s reform of the regulation and governance of NHS charities has given those that wished to do so the opportunity to convert to independent status under the sole regulation of the Charity Commission. Six of the largest NHS charities with trustees appointed by the Secretary of State have already converted to independence, having decided that that is their best option for the future. The vast majority of the remaining 15 NHS charities with trustees appointed by the Secretary of State have indicated that they, too, plan to convert to independence in the near future. Three NHS charities with corporate trustee arrangements have also indicated that they wish to convert to independence.

At this point, it might be useful for the House and assist hon. Members who have tabled amendments that question some aspects of the Bill if I go a little into the history of this reform. It has always been a challenge to develop a system of regulation and governance that is workable for both the small number of very large NHS charities and charities with income of only a few thousand pounds a year. Within the sector, income is heavily skewed towards charities linked to large, high-profile hospital trusts, some of which have been mentioned during the debate. In 2012, the top five NHS charities accounted for more than a third of the total income, the top 15 for more than half of the total income and the top 30 for more than two thirds of the total income. However, the 50 smallest registered NHS charities had an average annual income of less than £10,000. The largest NHS charities require a different level of professional management.

[Pauline Latham]

Does my hon. Friend agree that NHS charities helping to put defibrillators in public places are doing a good job for the country? I am trying to persuade all my churches to have defibrillators outside their buildings for the benefit of the community, and some have already done so. It is an important fact that charities within the health service do a huge amount of good out in the community, as well as in hospitals.

[Jane Ellison]

My hon. Friend is absolutely right. Several hon. Members have mentioned charities in their area that are doing great work to increase the public availability of defibrillators. Perhaps I may take a moment to update the House on that matter. The Government were delighted, in partnership with the British Heart Foundation, to provide £1 million for defibrillators, meaning that this life-saving equipment will be given to communities right across the country—we have heard about several examples this morning, and my hon. Friend has mentioned another great example in Derbyshire—and that more people can be trained in cardiopulmonary resuscitation. That will make it easier for people to act in an emergency, and ultimately it will of course save lives.

I can update the House by saying that applications opened last October and interest was very high. The British Heart Foundation allocated funding to applicants who could demonstrate that the criteria had been met, and the application process has now closed. We look forward to hearing more about all the places around the country—I am sure that some of them will be in constituencies of hon. Members in the Chamber—where such life-saving work will be enabled.

--- Later in debate ---

[Jane Ellison]

My hon. Friend is wholly consistent on this issue. Since he came here in 2010, I have been delighted to hear him stand up on many occasions for people who find overbearing state bureaucracy at either the national or local level. He seeks to ensure that any such bureaucracy is always light touch and appropriate. He rightly seeks reassurance and I think I can give him that. We would never seek to make the process overbearing. It would obviously be inappropriate, given that the central drive of the first part of this important private Member’s Bill is to bring clarity and to avoid double-regulation. It would be nonsense if any aspect of what we have discussed this morning added to the bureaucratic burden. We are trying to head in an entirely different direction—one of which I hope my hon. Friend, given his long-standing role as a champion in this House, will approve.

[Pauline Latham]

My hon. Friend has twice referred in her speech to defibrillators and the money that the Chancellor has given to the British Heart Foundation to provide more of them. I urge her to continue to lobby the Chancellor on this issue. In his forthcoming Budget, he might be prepared to consider adding to that fund so that more people in the community could benefit from defibrillators.

[Jane Ellison]

My hon. Friend has effectively just undertaken such an act of lobbying. The take-up of this fund is extremely encouraging, and I would be happy to give her more information, as I know she has spoken about this subject here on many occasions—as, indeed, have other Members. We had Backbench Business debates on it in the last Parliament, and I am sure it is one to which we will return. It is an area in respect of which parliamentarians can be great champions in their local areas. I greatly welcome hearing my hon. Friend speak with such enthusiasm about this matter.

Cancer Drugs

Pauline Latham Excerpts

Tuesday 19th January 2016 Westminster Hall

[Pauline Latham (Mid Derbyshire) (Con)]

I beg to move,

That this House has considered the removal of drugs from the Cancer Drugs Fund list.

It is a pleasure to serve under your chairmanship, Mr Streeter. I secured this debate to raise the case of a constituent and to allow other Members to discuss the effects that removing drugs from the Cancer Drugs Fund will have and, I suspect, the current consultation on the fund. The latest delisting of some drugs from the fund has happened since the last debate on cancer drugs, and I am sure that many Members have heard from constituents who have been affected.

In November, I was contacted by a constituent, Tina Spencer-Keyse, about her husband Graham, who in 2010, at 51, was diagnosed with myeloma, which is a rarer cancer caused by abnormal cells in the bone marrow, where all blood cells are made. Myeloma is a relapsing and remitting cancer, meaning that there are periods when the myeloma causes symptoms and complications and needs to be treated, followed by periods of remission or plateau, when the myeloma does not cause symptoms and does not require treatment. Because myeloma is relapsing and remitting, it is crucial that clinicians are always one step ahead of the disease and that there is a treatment option for the patient to receive when it returns, especially when other treatment options have already been used.

Until August 2015, Tina and Graham had hoped to use one further drug treatment available for myeloma. Pomalidomide, also known as Imnovid, is used to treat relapsed multiple myeloma patients who have received prior treatment regimens but for whom the disease has continued to grow and spread. Imagine how devastated the Spencer-Keyse family were to find out then that the drug had been removed from the list of drugs available through the fund. Following the delisting, there are no other licensed treatments available for myeloma patients in England. Patients have no other options once the drug they are currently taking fails. They have nowhere else to go. Imagine the frustration, and probably anger, that they and thousands of others feel when a drug that was available just months before is no longer available to them but is still being used by other patients who were prescribed it before the delisting. The situation is such that a doctor might see one patient in the morning and be able to continue prescribing a treatment yet see another patient with the same disease afterwards and not be able to do so, even when they know it could help.

[Nick Thomas-Symonds (Torfaen) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Streeter. I congratulate the hon. Lady on securing this important debate. Another example of a drug that has been delisted, causing similar frustration, is Abraxane, which is used in the treatment of advanced pancreatic cancer and was removed from the Cancer Drugs Fund in November. First, does she share my concern that although the delisting applies only to England, it causes worries across the rest of the UK as to whether the drug will become unavailable there, too? Secondly, although of course a consistent set of rules must be applied, one of the issues with pancreatic cancer is that 80% of patients are diagnosed when the cancer has already spread. Although Abraxane may only give a few weeks more life, those weeks may double life expectancy.

[Mr Gary Streeter (in the Chair)]

Order. Interventions must be brief.

[Pauline Latham]

I accept what the hon. Member for Torfaen (Nick Thomas-Symonds) says. I have also campaigned for Abraxane to continue because, very sadly, a former Member of this House died from pancreatic cancer in the last Parliament. He had very few weeks to live once he was diagnosed, so it is a particularly unpleasant disease.

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

On Abraxane, does my hon. Friend agree that if a cancer is fast-acting and the gap between diagnosis and death can be as little as six months, getting an extra month or two means that a person can settle their affairs and get peace of mind? That is very important time.

[Pauline Latham]

It is incredibly important time. Any extra few weeks in such a situation is so valuable to those patients.

In answer to a written question submitted by my hon. Friend the Member for Crawley (Henry Smith) on 10 December 2015, the Minister said:

“NHS England has advised that a draft treatment pathway for patients with multiple myeloma, which takes into account the…impact of treatments removed from the Cancer Drugs Fund (CDF), is currently being finalised.”

I hope he is able to update us today on when those proposals might be published. My constituent and his family would like to know what options, if any, he has.

It is not only drugs for rarer cancers that have been hit. Drugs to treat breast cancer, bowel cancer, prostate cancer, leukaemia and other blood cancers, some gynaecological cancers and cancers that affect the central nervous system have all been removed, which probably amounts to thousands of patients who are now unable to receive treatment. That is absolutely devastating for patients and their families, as the chance to prolong life for a few more months or years has been diminished.

[Julian Knight (Solihull) (Con)]

I congratulate my hon. Friend on securing this important debate and on the passion she is showing in putting her case. What does she think about NHS England’s proposal that the Cancer Drugs Fund should become a managed access fund that pays for promising new drugs for a set period before the National Institute for Health and Care Excellence decides whether the drugs should be routinely available on the NHS? Does she think that is a good idea or not a good idea?

[Pauline Latham]

I will come on to that later. If my hon. Friend does not mind waiting a few moments, he will hear what I have to say.

Delisted drugs are still potentially available on an individual basis via an individual funding request. Is the Minister able to say how many of those requests have been successful as a proportion of all requests, and for which drugs? I know he is working extremely hard on this matter, about which he cares passionately, and I thank him for that.

Although there has been recent progress, the UK still lags behind most other developed nations on use of and access to cancer drugs. In fact, we do not do as well on outcomes for cancer as many other nations. Nationally, cancer is still the largest killer, accounting for 29% of all registered deaths in 2014, the last year for which Office for National Statistics figures are available. Tracking the history of the Cancer Drugs Fund, a fund for which I have repeatedly supported investment, we can see that it has been on a rocky road to get to where we are now. Drugs have been removed, and the general consensus is that the fund has become unsustainable.

For the first three years, the fund underspent its budget—the opposite problem from the one we have now. In fact, between October 2010 and March 2013, the 10 strategic health authorities that administered the fund underspent by £128 million, or 28% of the fund’s total budget. That is a lot of money that could have been spent treating cancer patients. There was significant geographic disparity in the use of the fund. In the east midlands, which covers my Mid Derbyshire constituency, the number of patients supported by the fund per 1,000 new cancer cases in 2012-13 was just 27. That was the lowest figure in the country and represented a failure of the East Midlands strategic health authority, which was then in control of administering the fund, to promote its use to clinicians and patients. Several of my constituents died prematurely because they were refused funds for the drugs they needed when the fund was always underspent, despite pleading from me on behalf of people who were spending their own money on those drugs.

Since NHS England and Public Health England took control of the fund, the change has been dramatic. Having one central authority administering the fund removes the geographic differences whereby treatment authorities were promoting the fund and treatments at different levels. The effect is such that patient numbers skyrocketed. As last year’s high quality National Audit Office report on the Cancer Drugs Fund notes, the number of patients approved for funding increased by about 30% each year from 2011 to 2015, which should be viewed as a success for patients. Thanks to the fund, 84,000 patients have been able to access treatments that they would otherwise have been denied. The success is such that, in 2014-15, almost one in five patients started a new cancer drug through the Cancer Drugs Fund. What was meant to be a temporary measure is now a mainstay of cancer treatment in England.

Obviously, such growth comes with a price; the cost of funding the scheme spiralled out of control. Following the Government’s decision to extend the fund to March 2016, NHS England increased the annual budget from £200 million to £280 million for 2014-15 and 2015-16. In January 2015, it increased the budget for 2015-16 again, to £340 million, meaning that the fund now has an expected lifetime budget of £1.27 billion.

Was taking drugs off the list a solution to the fund’s problems? It was certainly the easiest way to regain control of costs, but it hit patients hardest rather than solving the problems with NICE’s approval processes, which was the underlying reason for the fund’s creation. The rapid response to regain control of the budget also means that no new treatments were added to the Cancer Drugs Fund from January 2015. The decision to keep drugs on the fund’s list or remove them was based on their clinical effectiveness and cost, but from the start the fund did not keep records of treatment outcomes. Surely it is hard to obtain a full understanding of drugs’ full efficacy if a full analysis is not available by which to judge them. The failure to collect data on patient outcomes until July 2015 is truly disgraceful and undermines any proper evaluation of the fund’s success.

I am particularly attracted to the question asked by the right hon. Member for Don Valley (Caroline Flint) during a Public Accounts Committee oral evidence session on the Cancer Drugs Fund last year. She asked why the Department of Health did not

“knock the heads of the SHAs together to ensure that there was some sort of common collection of data”,

instead of just recommending it. Fortunately, NHS England and Public Health England have resolved the problem—today, every new Cancer Drugs Fund patient is automatically identified on the systemic anti-cancer therapy database—but five years to fix a problem is far too long, and a failing of the fund.

Although data outcomes are now mandated, the rate of return has been far from perfect. In 2014-15, many records lacked important data. Most shockingly, 93% of patient records submitted did not have an outcome summary. Will the Minister inform us whether there will be penalties for trusts that consistently fail to produce the required data on cancer treatments?

The lack of data collection also undermines efforts to establish whether the price paid for drugs is equal to their outcomes. As the chief executive of the NHS admitted himself, the NHS has not been good enough at negotiating a price for drugs. Many drugs have been delisted because they were deemed too expensive. The drug Imnovid, which would benefit my constituent Graham, costs the NHS £115,000 a year, compared with £90,000 in Spain.

The failure to negotiate the best price was demonstrated by the fact that when threatened with removal from the list, some manufacturers were able to offer a lower price for their drugs. I understand that Imnovid was already offered at a discounted price, but I cannot blame drug manufacturers for not immediately offering the lowest price that they can afford. They need profits to use on research and development and to show value for their investments. Will the lack of positive outcomes from the price negotiations be addressed in the new CDF proposals? Also, can the Minister provide information on the number of negotiations between NHS England and drug manufacturers that have been positively resolved, and which drugs they relate to?

The new Cancer Drugs Fund proposals aim to distribute more evenly the financial risk of placing a drug in the fund, but the Rarer Cancers Foundation strongly suggests that the NHS has not been flexible in negotiating with pharmaceutical companies on value propositions for treatments in the fund. Can the Minister confirm whether NHS England rejected multi-treatment cost reductions from drug companies because they would have fallen outside NHS England’s standard operating procedure? Likewise, from evidence given to the Public Accounts Committee, it is clear that some companies have offered financial schemes stating that if the medicine does not work as expected, its cost will be returned to the NHS, but have been turned down in favour of straight discount schemes. Together, such schemes would offer a win for the taxpayer and would have allowed more drugs to be made available for the fund.

My final comments concern the proposed reforms of the appraisal process for drugs on the fund, which under current plans will be put solely in the hands of NICE. The proposal is that the CDF should become a managed access fund for new cancer drugs, as my hon. Friend the Member for Solihull (Julian Knight) mentioned, with clear entry and exit criteria. It would be used to enable access to drugs that appear promising but for which NICE indicates that there is insufficient evidence to support a recommendation for routine commissioning. At the end of the period, the drug would go through a short NICE appraisal, using the additional evidence.

For those looking for treatment for rarer cancers, such as myeloma, there are a number of questions about the new proposals that need to be addressed to ensure access to new treatments. As I understand it, under the new proposals, only a limited number of patients will have treatment funded through the CDF, and the industry is expected to fund additional patients. The consultation sets out NHS England’s proposal to limit funding for each drug on the CDF to the number of patients required to be treated in order to gain further evidence for use in NICE appraisal. The consultation is not clear what data NICE might require to be gathered during the CDF funding phase or the indicative size of patient populations. It is therefore difficult to assess whether the proposals would result in more or fewer patients getting access to treatment than the current arrangements.

What consideration is there of drugs for rarer cancers, which will have smaller patient pools creating only a small amount of data? Does the appraisal process have flexibility for such drugs? It is not clear whether pharmaceutical companies will be willing to fund patients for the 24 months required to allow data to mature if they think the likelihood of NICE approval at the end remains small. That could result in patients losing out once again on innovative treatments, or a situation in which drugs are put on the fund list and taken off in 24-month cycles, leading to uncertainty for patients about which drugs they have access to, just like the uncertainty caused by the current delisting.

I would like reassurances from the Minister that patients seeking treatment after the number of patients required to be treated in order to gain further evidence has been reached will not be denied treatment given to others in their situation. Does he believe that the changes to the NICE process outlined in the consultation are sufficient to ensure that more cancer treatments will receive positive NICE recommendations? Patients should be at the centre of any new decisions about the fund. Finally, I ask the Minister how the views of patients will be given greater weight in the new CDF arrangements.

[David Mowat (Warrington South) (Con)]

I have been listening carefully to my hon. Friend. Does she agree that the crux of the matter is that the NICE evaluation criteria for those sorts of drug have not been adequate? The whole genesis of the Cancer Drugs Fund is in a failure of NICE. We need to get the NICE criteria right; then we would not need a drugs fund in the current format.

[Pauline Latham]

My hon. Friend is absolutely right. NICE has not done what it should have done. I hope that the Minister will be able to rectify that failure in the system.

Resolving data collection issues, negotiating value for the taxpayer and making the NICE assessment process flexible for innovative new drugs and drugs designed to treat only a small number of patients are vital for the fund to work successfully when it re-launches in April. Will the Minister please look again at the delisted drugs and give hope to people such as Graham that they can spend longer with their loved ones? Failing to do so will not help those whom the fund is designed to help most: cancer patients and their families.

[Mr Gary Streeter (in the Chair)]

Colleagues, we have 40 minutes until the winding-up speeches begin at 3.30, so we are looking at six-minute speeches, by voluntary submission. I will call Jim Shannon first, as he has to go and chair an important all-party parliamentary group; I hope that colleagues will accept that. He has promised to speak for no more than five minutes.

--- Later in debate ---

[Pauline Latham]

I thank all Members who have taken part in this very important debate. Turning to my hon. friend the Minister, I would just like to say that imminent is great, but it might not be imminent enough for my constituent Graham. He needs help now. I accept that the Minister is doing all he can to accelerate things, but imminent might not be soon enough.

Question put and agreed to.

Resolved,

That this House has considered the removal of drugs from the Cancer Drugs Fund list.

Cardiac Screening: Young People

Pauline Latham Excerpts

Tuesday 27th October 2015 Commons Chamber

[Mims Davies]

I agree with the hon. Gentleman. We are losing fit, young, capable, able and good people, and we must do something about it. We bring our children into the world. We school and train them, and above all we love them and get them ready for a future—our future. Economically, there is a case to do something, but the emotional case is priceless.

Screening has been proven to work. In Italy, screening is mandatory for all young people who are engaged in sport, and cases of young sudden cardiac death have fallen by 90%. In this country, free screening is provided only when a young death has occurred in the family, or through the work of Cardiac Risk in the Young and the help of affected families who fundraise for that cause.

[Pauline Latham (Mid Derbyshire) (Con)]

I congratulate my hon. Friend on securing this important debate. My constituent, Sam Wright, who was a very fit young man, died suddenly. His friend, Danielle West, has fundraised on behalf of CRY and secured enough money to screen all the sixth-formers at the school that Sam used to go to. Three of those sixth-formers have had further tests. I do not know the results of those tests, but three people who knew nothing may have a condition that can now be treated. My hon. Friend’s campaign is valuable and we should continue with it.

[Mims Davies]

I absolutely agree. The UK National Screening Committee has refused to make a comprehensive offer of heart screening for young people in the UK, which I think is a scandal.

NHS Reform

Pauline Latham Excerpts

Thursday 16th July 2015 Commons Chamber

[Mr Hunt]

I would be very happy to meet the hon. Lady and clinicians. I am aware of the problems in that health economy and I am aware that they are long-standing. They are a concern to me and I would be delighted to do anything I can to support her in helping to solve them.

[Pauline Latham (Mid Derbyshire) (Con)]

I was shocked to hear the right hon. Member for Leigh (Andy Burnham) running down the NHS yet again. He obviously has not been watching the series on television about the Royal Derby hospital, or looked at its website, where most of the comments are incredibly positive. Also in Mid Derbyshire we have surgeries that wish to take some of the burden away from hospitals. Does the Secretary of State agree that we should be encouraging that, where they can offer services to save people from going to hospital?

Oral Answers to Questions

Pauline Latham Excerpts

Tuesday 2nd June 2015 Commons Chamber

[Jane Ellison]

The hon. Gentleman is right to draw attention to the important role of research. We will leave no stone unturned in looking at all aspects of the treatment or prevention of diabetes. The issue of research is something I recently discussed with the chief medical officer. I will draw to her attention the point he makes. As he knows, although health is a devolved matter we always make a point of sharing all research right across our United Kingdom.

[Pauline Latham (Mid Derbyshire) (Con)]

May I invite the new Minister with responsibility for GPs to meet me and a couple of excellent GP surgeries that want to expand their services for the local community but are being prevented by the local clinical commissioning group?

[Alistair Burt]

Of course I welcome my hon. Friend’s invitation. The innovative work being done by a number of GP practices around the country to expand services is welcomed by all; there is an opportunity to take good practice from one GP practice to another. In addition to my visit to Cornwall, I am clearly on the way to Derbyshire.