Historical Stillbirth Burials and Cremations

Mark Tami Excerpts

Thursday 6th February 2020 Commons Chamber

[Mark Tami (Alyn and Deeside) (Lab)]

We all agree that the woman, and indeed the whole family, should receive that psychological support if they need it, but just saying it does not mean that this help is getting to the people it should be reaching. In many cases, people find it almost impossible to get that support.

[Justin Madders]

I thank my right hon. Friend for his intervention, as he raises the very point: the support is not consistent across the piece. We rightly raise that issue when we discuss these matters, because we need better support, better funding and better delivery of these specialist services. As he says, this is a difficult issue and support is needed at the right time.

NHS Funding Bill

Mark Tami Excerpts

Legislative Grand Committee & 3rd reading: House of Commons & Legislative Grand Committee: House of Commons & Programme motion: House of Commons & 3rd reading & Programme motion
Tuesday 4th February 2020 Commons Chamber

[Justin Madders]

The hon. Gentleman makes an important point. We have all heard horror stories of workers in the health service having to turn on seven or eight different computer systems and use fax machines and pagers— there were so many fax machines in the NHS I used to think the previous Health Secretary was sponsored by Rank Xerox. It is a serious point though. If we are to improve patient outcomes, we will need to move with the times and get the benefits of technological improvements.

[Mark Tami (Alyn and Deeside) (Lab)]

My hon. Friend will agree on the importance of the Countess of Chester Hospital to his area and mine. It is quite a unique hospital, in that it was built to serve the people of Deeside in north Wales as well as Chester and the surrounding area, so is it not strange that, although many in my area rely on it, I will not be allowed to vote on the Bill today?

[Justin Madders]

My hon. Friend makes a pertinent point. Both my parents are residents of north Wales but on occasion use the Countess of Chester Hospital. This process does not take account of the reality on the ground. As I said before, the fact that there will be Barnett consequentials from the Bill suggests that we have made a serious error in not allowing those from the devolved nations to vote on it.

We know what some trusts have told us about the lack of capital investment and what that means on the frontline: Morecambe Bay has said it has “unsuitable” environments for safe clinical care that have led to the closure of its day case theatre; the Queen Elizabeth Hospital in King’s Lynn has warned of a direct risk to life and patient safety from the roof falling in; and at the Royal Derby Hospital, a failing emergency buzzer system in the children’s ward means that staff would be unable to warn colleagues if something went seriously wrong. That is not acceptable.

The capital maintenance backlog will not be addressed unless the Government take note of what NHS Providers says in the report that came out this morning. It talks about the need for the NHS to have a multi-year capital settlement and a commitment from the Government to bringing the NHS capital budget in line with those in comparable economies, which would allow the NHS to pay for essential maintenance work and invest in long-term transformational capital projects of the kind we have touched on. One of our criticisms of the Bill is that capital allocations have not been included in the figures in clause 1, so in order to protect those allocations we have tabled amendment 3, which we hope to push to a vote, to stop the Government’s continual sticking-plaster approach.

I move now to performance targets and our new clause 4. We all know about the record investment and record patient satisfaction levels that the last Labour Government bequeathed to the Conservatives, but another part of their legacy was the NHS constitution, introduced as part of a 10-year plan to provide the highest quality of care and services for patients in England. It included a clear statement of accountability, transparency and responsibility, and standards of care for accessing treatment. These are the figures we often trade across the Dispatch Box.

Only last month, across this very Dispatch Box, the Prime Minister gave us assurances on performance. He said:

“We will get those waiting lists down”—[Official Report, 15 January 2020; Vol. 669, c. 1015.]

We would all like to see that, but we should remind ourselves of the Government’s sorry record: the target for 95% of patients being seen within four hours in A&E has not been met since July 2015; the target for 92% of people on the waiting list to be waiting fewer than 18 weeks for treatment has not been met since February 2016; the target for 1% of patients waiting for more than six weeks for a diagnostic test has not been met since November 2013; and the NHS has not met the 62-day standard for urgent referrals for suspected cancer treatment since December 2015. I fail to see how the Prime Minister can drive down waiting lists when the level health expenditure he is proposing is not enough to meet existing demand.

--- Later in debate ---

[Jeremy Hunt]

Thank you. I am sorry—I am new to this Back-Bench stuff. Apologies for not facing the Chair. I will now do so more diligently.

The point I wanted to make, Dame Rosie, is simply that the children and young people’s Green Paper requires an increase in the children and young people’s work- force of—from my memory as Health Secretary—9,000 additional people. The CAMHS workforce is actually only 10,000, so the Green Paper alone requires a near doubling of the mental health workforce. Far be it from me to teach experienced Opposition Members how to scrutinise the Government or hold them to account, but if they really want to know whether we are going to deliver on those promises, looking at the workforce numbers in children and young people’s mental health in the CAMHS workforce is the way to understand whether we are going to be able to deliver those extra commitments.

[Mark Tami]

Is not that the key point? Young people’s experience of CAMHS on the ground is that they just cannot get an appointment. Rather than being seen in the early stages, as they should be, they often get seen only when they have become suicidal or have tried to commit suicide. That is the wrong way round.

[Jeremy Hunt]

The hon Gentleman is absolutely right. On both sides of the Chamber, we are totally committed to the NHS and totally committed to transforming mental health services, but I am afraid that young people are regularly turned away from CAMHS and told, “You are not ill enough yet. Come back when things get worse.” Why is that such a tragedy? Because half of all mental health conditions become established before the age of 14, and the way to reduce the pressure on the NHS is to intervene early. That is what does not happen.

--- Later in debate ---

[Patrick Grady]

My hon. Friend is absolutely right; and we raised those points five years ago, when the EVEL process was being introduced.

[Mark Tami]

I have never been a member of the Procedure Committee. The Countess of Chester, which is a foundation hospital, has trustees who are elected from Wales. They are elected and can take part in decision making, but as an elected representative in this place, I cannot, apparently.

[Patrick Grady]

There we go. We have now had as many Welsh and Scottish Members contributing from the Floor, as Members from elsewhere in the United Kingdom. These points were raised back in the day, on the Procedure Committee, even if it was not the hon. Gentleman who gave that evidence.

This morning, the Prime Minister turned up at the Science Museum in London to launch a conference that is taking place in Glasgow. That probably tells us all we need to know about the Government’s concept of how the United Kingdom works. Four days after the UK leaves the European Union, and the Tory Government choose to display their love for the precious Union on these islands by creating two classes of Member in the House of Commons—those who can amend legislation and those who cannot. Well, as the Chair of the Health Committee asked us to say, “Thank you.” Thank you so much, because the polls are showing that support for independence in Scotland has reached 52% and growing, and that support will not go away. Constituents in Scotland will be watching today’s proceedings, wanting to know why their Members of Parliament are not allowed to vote on amendments that could increase health spending, not just here in England but throughout the United Kingdom.

Labour’s new clause 5 rightly calls for the Government to analyse the effect of inflation on the figures set out in the Bill.

Women’s Mental Health

Mark Tami Excerpts

Thursday 3rd October 2019 Commons Chamber

[Tim Loughton]

That shows a fundamental misunderstanding. I declare an interest because this was my issue. Where children are placed is not necessarily a reflection of how many children are in the care system in that authority. Children in care placed in other authorities, such as Kent, where accommodation is cheaper than in London, are paid for by the placing authorities, and they can cause challenges to the host authorities. That is a wholly different issue. The original point that the hon. Member for Manchester, Withington (Jeff Smith) made was that children’s centres are part of the solution. We need children’s centres with well-trained people offering well-targeted support services to those who need them, but saying that this is purely a numerical issue, because now we have 3,200 children’s centres as opposed to 3,500, is missing the point. It is about the quality of the care offered to those who most need it.

I will wrap up now—as I see you want me to, Madam Deputy Speaker—by touching on a couple of other points affecting older girls. They include the impact of bullying, social media and bullying online, peer pressure relating to body image, the reports by groups such as the Girl Guides and the surveys showing the number of young teenage girls who do not like their appearance and would, if they could, pay for plastic surgery, which is hugely alarming. We have to give young women in particular the confidence to be able to say, “I am who I am. This is who I am, and if you don’t like it—tough.” That is something that we have a major role in getting across in society, and frankly social media need to be part of those positive messages. We still have problems with the internet and social media companies hosting sites that masquerade as sites giving advice to people with eating disorders, but which are in fact malignly encouraging anorexia and things like that.

[Mark Tami (Alyn and Deeside) (Lab)]

Does the hon. Gentleman agree that social media companies that hide behind the claim that they are just platforms and are not responsible for the content need to take a serious look at themselves?

[Tim Loughton]

The hon. Gentleman is absolutely right, and I am glad that the Government are doing that with proposals, which are currently being consulted on, to fine social media companies that do not take down harmful comment. I am not just talking about hate crime or terrorism; this is about how it can undermine impressionable young people in particular. There are laws in places such as France about such sites, and Germany has introduced heavy fines that can be imposed on social media companies.

This is a big problem. Mental illness is a particular problem for women who might be affected by relationship breakdown, domestic violence, homelessness, housing difficulties, missed education opportunities, unemployment, financial difficulties, debt, ill health, substance misuse and interaction with the criminal justice system. Mental illness takes different guises and different forms, but the earlier we act, and with the most appropriate support, the more likely we will be to do the best job for future generations, and that starts at conception.

Cystic Fibrosis Drugs: Orkambi

Mark Tami Excerpts

Monday 10th June 2019 Westminster Hall

[Paul Scully]

I totally agree with the hon. Lady. It is frustrating to look at access around the world; there is even an interim solution in Scotland. It would be interesting to hear from the Minister about how that may pan out. Scotland has given interim access, including for compassionate use, and further access to some sufferers who can use Orkambi with a view to reporting back in August.

It is disappointing to find that people living with CF, in their ingenuity, have had to resort to looking at a buyers’ club. The Vertex drug is patent pending in Argentina, so another company is making a copy that can be sourced for £18,000 a patient—still a lot of money—rather than £104,000. That £18,000 comes out of their pockets, however, which defeats the idea of the NHS being free at the point of need.

[Mark Tami (Alyn and Deeside) (Lab)]

It is bad enough if a child is suffering with an illness for which there are no medicines to help, but it is incredibly cruel for the patient and the family when they know there is a drug that can help their child.

[Paul Scully]

There are clearly two sides to the negotiations. The NHS has to understand that CF sufferers are not just names on a spreadsheet; they are real people. We are all here as politicians to represent our constituents, but we are humans first and politicians second. We have to remember the humanity. On the other side of the negotiations, Vertex needs to make sure that these patients—the people living with CF—are not just names on a shareholder report.

Mental Health Support: Young People

Mark Tami Excerpts

Tuesday 9th April 2019 Commons Chamber

[Ruth George]

I agree.

[Mark Tami (Alyn and Deeside) (Lab)]

rose—

[Ruth George]

I have personal family experience of this, as does my right hon. Friend.

[Mark Tami]

Does my hon. Friend agree that with cancer, we cannot treat just the physical illness? We need to treat the mental side of dealing with it. That needs to be part and parcel of treatment and not just some sort of add-on that people seek afterwards.

[Ruth George]

I absolutely agree with both my right hon. Friend and my hon. Friend the Member for Coatbridge, Chryston and Bellshill (Hugh Gaffney). I know that even long after the physical experience of cancer has left young people, children and adults, the mental scars can linger, particularly for families.

The number of children and young people overall with a mental health disorder has increased to nearly one in eight, according to the children and young people prevalence survey in November. That is around 1.25 million young people, yet only one in four young people with a mental disorder is seen by a mental health specialist. Over 400,000 children and young people are not getting any professional help at all in England—that is almost 1,000 young people and their families suffering in every one of our constituencies. The lack of support leads to their condition worsening.

In 2017, 46.8% of young people with a mental health disorder had self-harmed or attempted suicide at some point, and over a quarter of 11 to 16-year-olds. The threshold to access child and adolescent mental health services has become so high that local teachers in my constituency are asked to provide evidence that a child has sought to take their life before a referral will be accepted. It is not enough to be told that they have tried to take their own life—CAMHS wants evidence, and these are schools with children up to the age of 16. Even when young people are accepted, the waiting time for treatment from CAMHS in my constituency is over 12 months, and sometimes 18 months. That is not unusual. It is no wonder that children are driven to more and more desperate measures just to get heard.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

I thank the hon. Member for High Peak (Ruth George) for her speech. She spoke with characteristic passion and sincerity about an important matter that concerns many Members, which is why so many are here tonight. I have personally engaged with a number of them on these issues.

Let me say at the outset that I am not complacent about the challenges that confront us when it comes to children’s mental health. It is true that many young people find it difficult to obtain help when they need it. I readily acknowledge that we face the challenge of decades of underfunding of treatment for mental ill health, in addition to the societal challenges that have made the problem more acute. It is clearly a priority for the Government, but unfortunately we cannot solve it with just a click of the fingers. We need to reinvest in the workforce if we are to deliver the services that are needed.

However, I hope to give the hon. Lady some reassurance about the direction of travel. I hope to reassure her that we will tackle the most acute needs while at the same time investing in the upfront prevention which, as she rightly pointed out, will save the Government money—and not only in the NHS, where there will be less demand for acute mental health services. She is right to highlight the savings that could be made in the criminal justice system. We must achieve the earliest of early interventions if we are really to make a difference, and not just for those people who need support, but for society, and that lies at the heart of my approach.

[Mark Tami]

Does the Minister not realise that young people actually have to try to kill themselves before they become a priority? Surely that is wrong. Early intervention is the key and we must not wait until young people reach that terrible stage before intervening.

[Jackie Doyle-Price]

I am sure that the right hon. Gentleman will be reassured to hear that I do not think that is good enough. I have heard anecdotal evidence that that has been said to a number of people. Clearly it is a matter of clinical judgment when people are referred to mental health services; we just need to ensure that happens. If he has specific examples, I would be happy to investigate them.

NICE Appraisals: Rare Diseases Treatments

Mark Tami Excerpts

Thursday 21st March 2019 Commons Chamber

[Liz Twist]

I certainly agree, and such things happen too often. We need a system that properly evaluates those drugs.

[Mark Tami (Alyn and Deeside) (Lab)]

I have certainly found that NICE sometimes says that the pool of people is not big enough to evaluate, but the clue is in the title: these are rare diseases. NICE cannot carry on doing that, particularly in cases where it is clear that the drug has a really positive effect.

[Liz Twist]

I agree with my right hon. Friend. Indeed, that is the burden of my speech.

As I was saying, I am not going to get into the fine detail of the process. It seemed to us in the all-party group that many conditions, as my hon. Friends have said, face the same problems. The all-party groups for muscular dystrophy and for cystic fibrosis are two that come to mind, but there are many other rare diseases, as we have heard, that do not have all-party groups but face exactly the same difficulties. Since this debate was announced, some other organisations have contacted me to ask me to make sure that we do not forget their concerns.

We found that there are a number of aspects of the NICE appraisal system that are problematic in assessing Kuvan and many other rare drugs. The existence of just two appraisal routes for treatments to be assessed by NICE results in the likelihood of two or more treatments being stuck in the middle by not meeting the restrictive criteria of the highly specialised technology route and therefore being assessed under a single technology appraisal route. Some of them are rare but not rare enough. As we have heard, the majority of treatments for rare diseases are likely to be assessed within the single technology appraisal, which is designed for non-rare treatments. This impacts on both the cost threshold and the approach to evidence, which are all designed for more common diseases.

On lifelong chronic conditions, NICE’s approach values the lifelong cost of treatments. It looks for near future benefits as well. That means it is difficult for chronic diseases such as PKU and treatments that produce lifetime and life-enhancing effects to get access to new treatments. NICE cost appraisals assume that patents do not expire. NICE will assume the existing price of the drug will stay the same. That is illogical as, particularly with older drugs such as Kuvan, the drug will soon go off-patent. This affects the benefits assessment. On non-health costs, NICE performs its calculations based on costs paid and saved by the NHS. That ignores the wider cost to society and individuals caused by diseases like PKU.

I do not seek to criticise NICE staff. They work within a system that we have given them, but it is clear from the many questions to Ministers, debates in this Chamber and in Westminster Hall, the creation of all-party groups, and correspondence with Ministers about individual cases that there is a very real issue here which must be addressed. That is why we are asking, in this motion, for NICE to review its processes to reflect the current issues we face.

Many drug companies have been in touch since this debate was granted to send me briefings. They have been keen to explain their side of the argument and to point out what they see as the problems in the NICE appraisal process for their drugs. There is some overlap with patient concerns, but I am here today to speak on behalf of the community of people with rare diseases, not on behalf of the drug companies. Let me be clear, the fact that this debate is about NICE appraisal processes does not excuse the pharmaceutical companies from their responsibilities. There is a balance to be struck between their need to recover the cost of the development of drugs and make a reasonable profit, and a huge responsibility on them to make their drugs affordable for our NHS.

In this debate, I have focused on PKU and Kuvan. With another drug treatment for PKU on the horizon, Pegvaliase, there is a real worry that even with a drug that may produce really life-changing results for a wider group of patients, those with PKU will again be left without the treatment they need, even when it exists. There are treatments for other rare diseases, too: Spinraza for spinal muscular atrophy and Orkambi for cystic fibrosis, which are not only life-improving but life-extending.

This is quite simple. There are drugs available that can drastically improve the lives of those affected by rare diseases. When I hear that NICE’s appraisal process is an obstacle to improving lives, I feel really angry. We are reducing the lives of children and adults to a cost-effectiveness analysis. We need to find a way forward to amend the appraisal system so that we do not let people fall through the cracks or fall behind. The drug companies must also do their bit to ensure that their drugs are affordable for the NHS, especially when early access via a managed access agreement is being discussed.

That is why today we are calling on NICE to review its appraisal processes and make the necessary changes to stop people falling through the cracks and make available these drugs, which can make such a difference to patients—to people such as my constituent Archie McGovern, whose mum Barbara set me on this path as a new MP.

Licensing of Medical Devices

Mark Tami Excerpts

Tuesday 12th February 2019 Commons Chamber

[Owen Smith (Pontypridd) (Lab)]

I rise to talk this evening about medical devices and the way in which they are licensed and regulated. They are a very important and growing part of medicine, and they can save and transform lives—indeed they have done for millions of patients over many generations. However, when faulty or poorly designed or poorly looked into and proven, they have also damaged, and indeed ended, the lives of many thousands of patients around the world. My principal point is that the regulatory system for medical devices in our country, and across Europe and arguably the wider world, is simply not fit for purpose and must be properly reformed.

The term “medical devices” is rather vague. It refers to everything from bandages to syringes through to heart pacemakers and artificial joints, and I want to be clear that what I am talking about is the more complex end of the spectrum: the more high-risk, class III as they are called, implantable devices.

[Mark Tami (Alyn and Deeside) (Lab)]

I want to put on record my thanks for all the work my hon. Friend has done on mesh. Does he agree that we must be careful that what might appear to be a relatively cheap quick fix can turn out to be a massive problem for a lot of patients?

[Owen Smith]

I thank my hon. Friend for his thanks, and I will talk about mesh shortly as it is illustrative of the wider problem.

The problem is best summed up not in my words but those of the Royal College of Surgeons, which said at the tail end of last year, in response to a big journalistic investigation, that we need to see in our country urgent and drastic regulatory reform and in particular that we need to start with the creation of a compulsory register for all new devices and implants that go into patients in the UK. Will the Minister commit to that?

Let me give a couple of examples of what I am talking about. Last year alone in the UK surgeons operated on patients for 80,000 knee joints, 60,000 hip replacements, 50,000 pacemakers and 7,000 usages of surgical vaginal mesh, down from its height in 2008 when there were 14,000 instances of surgical vaginal mesh inserted into women. Let me pause for a moment to talk about that example of vaginal mesh and why its use has declined so precipitously. The answer lies in what I am talking about—in the development and marketing, and the fact that, as with so many of these devices, their true safety and efficacy is only revealed in the real world once they have been implanted into patients, and sometimes after many years. Many of the variants of vaginal mesh, like most of the other devices now on the market, are developed without any real clinical trials, and certainly without the randomised controlled clinical trials we are familiar with in respect of medicines; that is an extraordinary fact. We understand why that is the case, but there are other ways in which the device manufacturers could ensure their devices were safer and definitely not going to harm patients.

Prostate Cancer

Mark Tami Excerpts

Wednesday 6th February 2019 Commons Chamber

[Simon Hoare]

The hon. Lady makes an incredibly telling point, because unless people know what the full range of symptoms are, they do not really know what they should be thinking and whether one of those symptoms or a combination of them should actually trigger a visit to their doctor in the first instance. I think she is absolutely right that we need a better understanding.

This goes back to a point I made a moment or two ago. Because this is a below-the-waist issue and we men get frightfully embarrassed about those sorts of things, we are inclined to say that it might just be something else or that it will pass, and so on. However, for too many people, it is left too late to have any meaningful, beneficial outcome as and when they eventually go to see their GP and then trigger the referral process.

[Mark Tami (Alyn and Deeside) (Lab)]

Does the hon. Gentleman agree that we can concentrate on all the negatives, but we have to get across that people are surviving and, more than surviving, actually living well? We have to present that because, with some cancers, there is still the idea that if someone gets it, “Well, that’s it then”.

[Simon Hoare]

rose—

Children with Life-limiting Conditions

Mark Tami Excerpts

Tuesday 29th January 2019 Westminster Hall

[Mark Tami (Alyn and Deeside) (Lab)]

Does the hon. Gentleman recognise, as highlighted by CLIC Sargent, the financial cost? It might be the last thing that people think about when everything else is going on, but there is a huge financial cost. The costs associated with cancer treatment are estimated to be around £600 a month extra, and the travel costs are on average £180 per family. For some people that is a huge amount of money.

[Jim Shannon]

I thank the right hon. Gentleman for his intervention and reiterate the point he has made. The financial implications, restrictions and pressures are important. I know CLIC Sargent well. It does massive fundraising in my constituency and elsewhere. I appreciate its work immensely.

Children’s palliative care providers offer a range of services, including supporting families to manage their children’s pain and distressing symptoms; providing children and their families with lifeline short breaks; and offering bereavement support both before and after the child has passed away. Families want to be able to choose where they receive the lifeline children’s palliative care services that they rely on when they need and want them. They also want to choose who cares for their child and which treatments they receive.

Along with others, I am a vice-chair of the all-party group for children who need palliative care. We seek to educate, inform and motivate parliamentarians to take action to help transform the lives of children and young people with life-limiting and life-threatening conditions across the United Kingdom of Great Britain and Northern Ireland. We are supported to do so by our secretariat, Together for Short Lives, the UK’s leading charity for the 49,000 children living with life-limiting conditions and their families. In November 2017, the all-party group began a Select Committee-style inquiry into the extent to which the Government are meeting their choice in end-of-life care commitment for babies, children and young people. The Government are clear that that commitment applies to people of all ages who need palliative care. The commitment explicitly states:

“To support high quality personalised care for children and young people, commissioners and providers of services must prioritise children’s palliative care in their strategic planning”.

Prioritising children’s palliative care in strategic planning is so important.

In a report last October, the all-party group published what we found and what action we recommend as a result of our inquiry. Despite the end-of-life care commitment, the APPG has heard evidence from young people, families, services and professionals that the quality of palliative care that children and families can access is patchy—the reason for today’s debate—and depends on what part of England they live in. MPs and peers have stated that that is unfair and represents a wholly unjustified health inequality.

The APPG highlighted five areas of particular concern where many children and their families have limited access. The first is children’s palliative care out of hours and at weekends. They also need short breaks and respite. As MPs we know these things, but the respite that is needed is so important to give parents a break. Age-appropriate palliative care and smooth transitions to adult services must be smoother, simpler and less stressful. Specialist children’s palliative care teams led by level 4 consultants are needed, and we need advance care planning. Those five barriers explain why the Government's choice commitment is at serious risk of not being met, which is why we are having this debate.

I am very pleased to see the Minister and the shadow Minister in their places. I know they both understand the issues. That certainly came out in my discussions with the Minister last week. Today we hope to hear the responses that we need to satisfy our concerns.

The first area of concern is leadership and accountability. Almost half—46%—of clinical commissioning groups are failing to implement the Government’s choice in end-of-life care commitment and have no plans to do so, which is disappointing, but there are reasons for it. Only a third of CCGs responded that they are implementing the guidance, and a further 19% stated that their plans to do so are in development. Consequently, will the Government and NHS England consider appropriate mechanisms to bridge the children’s palliative care accountability gap? Furthermore, will the Government develop a system to monitor how sustainability and transformation partnerships, integrated care systems, CCGs and local authorities are supporting children’s palliative care in accordance with their legal duties? That is very important. Will the Government develop outcome indicators that measure the extent to which children with life-limiting conditions and their families can make choices about the palliative care that they receive? If so, will they reflect the outcomes set out in the National Institute for Health and Care Excellence quality standard for end-of-life care for infants, children and young people?

The second area concerns clarity. Will the Minister work with her colleagues at the Department for Education and NHS England to write to STPs, ICSs, CCGs and local authorities to clarify which parts of the health and care system in England are responsible for commissioning palliative care for children and young people aged 0 to 25? We always go on about data, but data is important to get a strategy that works. It is vital to make it clear who is responsible for commissioning short breaks and specialised children’s palliative care, as described by NHS England.

The third area is funding. Unfortunately, there has been a downward spiral in the trajectory of funding: 22% in 2016-17 and 2015-16 compared with 23% in 2014-15 and 27% in 2013-14. That downward trend worries us greatly. There was a wide range in the state’s contributions to voluntary care sector children’s palliative care providers’ charitable costs in 2015-16. The maximum contribution received by a charity in 2015-16 was more than half and the lowest was 2%. Like other members of the APPG, I was therefore pleased to welcome NHS England’s recent decision to commit to funding children’s palliative care in the long-term plan. However, I want to highlight the mismatch in the two announcements that NHS England made.

On 27 December, NHS England announced that up to £18 million would be available to children’s hospices through the long-term plan, of which £7 million would depend upon CCGs contributing another £7 million through match funding, which is fair enough, taking the total to £25 million. Yet in paragraph 3.41 of the plan, published on 7 January, NHS England said that the £25 million would be for local children’s palliative and end-of-life care services, including children’s hospices. Does the Minister recognise that the two NHS England announcements were confusing, and can she clarify whether the £25 million will be for children’s hospices only, or a wider group of services? We need answers to those points. I gave the Minister advance notice of all my questions. It was almost the highest number of questions I have ever asked a Minister at one time, even though I ask a lot of questions.

Can the Minister guarantee that the £11 million children’s hospice grant will be protected and increased as a result of the long-term plan, to reflect the growing demand and the complexity of care provided by those lifeline services, and will she guarantee that total NHS funding for children’s palliative care will not fall as a result of the long-term plan? Will she also monitor the amount of money that NHS England, clinical commissioning groups and local authorities are contributing to children and adult hospice and palliative care charities? If so, will she ensure that they bring about parity in the state’s percentage contribution to their charitable costs?

I often refer to the Scottish Government—in the best of terms, as well. I note that they have committed to bringing about parity and funding 50% of the agreed charitable costs of children’s hospices across Scotland. They often set the bar, and set an example for the rest of us to try to achieve. I know that my hon. Friends from the Scottish National party will speak to that, and I look forward to their contributions.

The funding challenges are being exacerbated by the Government’s decision not to provide voluntary sector providers that do not apply “Agenda for Change” pay and conditions with financial support in order to mitigate the recent pay rise for non-clinical NHS staff. Will the Minister provide financial support to help voluntary sector children’s palliative care providers, including children’s hospices that do not apply “Agenda for Change” pay and conditions, to mitigate that recent pay rise?

We have to mention the Government’s proposal to increase the proportion that employers need to contribute to the NHS pension scheme from 14.9% to 20.9%. That will also lead to children’s hospices incurring significant costs. I say very gently that there is an imbalance in what is happening. Although the cost of the increases for NHS organisations will be met by the Government through additional funding, the potential additional costs for charitable hospices will not be.

Children’s hospices are faced with the puzzling situation where NHS England is giving them more money with one hand while, through the pension scheme changes, the Government are taking it away with the other. We all have concerns about that. Will the Minister meet the significant costs that children’s hospices will incur as a result of the Government’s proposal to increase the employers’ contribution to the NHS pension scheme?

The APPG believes that the Government and NHS England should go further to ensure that children’s palliative care provided by the statutory sector, in hospitals and in the community, is funded equitably and sustainably in England. The National Institute for Health and Care Excellence calculates that by investing £12.7 million in implementing its guideline on children’s palliative care, non-cash savings worth £34.7 million would be released back into the NHS. Mathematics is not one of my stronger points, but it seems logical to do that. Will the Minister undertake a review of the palliative care available to children with life-limiting conditions in England as a matter of urgency, and will she develop a funded, cross-departmental children’s palliative care strategy for achieving better outcomes for children and families across the statutory and voluntary sectors?

There are too few professionals with the skills, knowledge and experience to provide children’s palliative care in hospitals, children’s hospices and the community. Those who are skilled, and have the ability and opportunity, do wonderful work. Will the Minister set out the steps that she is taking to develop and advance care plans with families? Shortages in children’s nurses, and generally in children’s palliative care, are particularly acute.

The final area is integration. Single, joined-up education, health and care assessments, plans and personal budgets for children and young people up to the age of 25 are available only to those who have a special educational need. The APPG is also unclear on how the Government’s approach to personalising palliative care for children and young people, which is underpinned by joint plans and budgets, correlates with the special educational needs and disabilities system. That is tremendously important to us all. I should be grateful if the Minister would tell us whether she plans to ensure that all 40,000 babies, children and young people in England with life-limiting or life-threatening conditions have the right to an integrated assessment, plan and personal budget.

Will the Minister commission a review of health and social care law, to strengthen and clarify rights and entitlements for disabled children and their families, including children with life-limiting conditions? That would help to bring about more integrated assessments and plans. Will she invest in supporting work to develop children’s palliative care managed clinical networks across England?

[Mark Tami]

The hon. Gentleman makes an important point. Does he agree that the Government need to speed up, and that they cannot apply the general criteria that they apply to everyone else? Those parents, those families, and those children need support straightaway, not after waiting for weeks—sometimes months.

[Jim Shannon]

I thank the right hon. Gentleman for his intervention and his wise words. I absolutely agree that we need to implement right away the response that families need. He is right: one size does not fit all. Every person’s case and circumstances are unique, so we need to respond with something that fits, quickly.

If not quickly met by the Government, those challenges will threaten Ministers’ ability to meet their end-of-life care choice commitment for children by 2020. We have to work to that timescale. We need that response to do away with the patchiness; there are parts where the Government are doing well and families get help, and other parts where they do not. I know that the Minister is committed to that, and hopefully her response will be helpful to all of us who are asking these questions.

We urge the Government to work with the APPG, and interested bodies and charitable groups, to implement the APPG’s recommendations. There has already been progress in the past few weeks. That is good news, and we are pleased about that. NHS England has decided to recognise children’s palliative care as an important priority in the NHS long-term plan.

I commend the Government, I commend the Minister for her commitment to the strategy, and I commend Health Ministers for the Department’s commitment to addressing health, and spending money on it. That is good news. Nobody in this House would not welcome that. I very much welcome it. Will the Minister assess the extent to which the NHS treats children’s palliative care as a priority, as it commits to in the long-term plan, and if so, how? Will she tell us a wee bit about how that long-term strategy and plan will work?

I think it is the hon. Member for Vauxhall (Kate Hoey) who says, “Jim Shannon gets more words into a minute than any other MP.” I am not sure that I have given my four-minute speech in one minute, but I have tried to compress what I wanted to say, and I gave the Minister my questions beforehand. There are hon. Members present who have a real knowledge of the subject matter. It is so important that we hear all their opinions as well.

I ask the Minister to update us on the progress that the Government are making in responding to all the APPG’s recommendations. I very much look forward to hearing her response. These children need help. The report is clear, and now we need to be clear on how the Government can and will make changes to ensure that these short lives, and the lives of loved family members, can be better. Sometimes we see only the child; we also have to see the families. I think the right hon. Member for Alyn and Deeside (Mark Tami) referred to that in his intervention. It is so important that we reach out and help. Our job as MPs is to do just that. We look to the Minister for the response that we all want.

Blood Cancer

Mark Tami Excerpts

Friday 23rd November 2018 Commons Chamber

[Henry Smith (Crawley) (Con)]

I am grateful for the opportunity to raise the important issue of the NHS long-term plan and blood cancer. In doing so, I congratulate my hon. Friend the Member for Wimbledon (Stephen Hammond) on his appointment to his ministerial position.

We are already nearing December. It is often said that the months seem to fly by, and this is very much the case in terms of the work of the all-party group on blood cancer throughout 2018. As chair of the all-party group, it certainly does not seem like almost a year ago that we launched our first report, which coincided with a Westminster Hall debate on blood cancer care and the NHS. As we come towards the end of the year, we are also approaching the publication of the Government’s long-term plan for the NHS. It is vital that the needs of blood cancer patients are considered and implemented if we are to build on the progress undertaken in recent times for people with blood cancer.

Our all-party group has continued to take evidence from a host of experts and to raise further awareness with health officials and policy makers. Our pursuit of this cause in Parliament is ongoing. September saw Blood Cancer Awareness Month. To mark that occasion it was my pleasure to host Bloodwise, as it invited MPs to meet members of their successful and ever growing patient ambassador programme. Speaking with people such as patient ambassadors really helps to put cancer into a human context. It is important to highlight the fact that some 40,000 people are diagnosed with blood cancer in the UK each year, but listening to just one or perhaps a handful of people who are either living with or have been treated successfully for blood cancer is a powerful reminder that behind every statistic are individual patients, with their own story to tell.

[Mark Tami (Alyn and Deeside) (Lab)]

I add my praise for the work that the hon. Gentleman has been doing with the all-party group. When it comes to patients who need a transplant, around 60% of patients who are white will get the best possible match, but if someone comes from a black, Asian and minority ethnic background, that drops to 20%. Does he agree that we need to do much more work to improve this dreadful situation?

[Henry Smith]

I am grateful for the hon. Gentleman’s intervention, and I pay tribute to him for his contribution to this debate and for raising this matter in this place just yesterday. I absolutely endorse what he says about the importance of transplantation.

Last week, the APPG held its latest meeting on the timely topic of ensuring that patients have access to the best drugs and treatments, ahead of the publication of the NHS plan. In recent months, there have been some significant decisions regarding treatments for blood cancer on the NHS. In September, CAR—chimeric antigen receptor—T-cell therapy was approved for entry into the cancer drugs fund by the National Institute for Health and Care Excellence and NHS England to treat children and young people with relapsed acute lymphoblastic leukaemia. CAR-T therapy is a new type of therapy that modifies a person’s infection-fighting T cells to better spot and kill cancer cells. It could offer people with certain hard-to-treat blood cancers the chance for long-term survival, or even a cure.

I was pleased to question my right hon. Friend the Prime Minister at Prime Minister’s questions about CAR-T therapy following the NHS England announcement. I continue the call I made that day for the Government to ensure that a focus on blood cancer awareness, diagnosis and prevention will continue into the future. With that in mind, will the Minister update the House on when people with blood cancer are likely to benefit from CAR-T treatment and on whether the health system is ready for this type of personalised medicine?

Additionally, NHS England changed its mind recently and allowed ibrutinib to be used for patients with chronic lymphocytic leukaemia after three years’ remission. The development of new drugs is ongoing. Bloodwise estimates that over one third of all indications for which drugs are funded on the cancer drugs fund are for blood cancer, which highlights not only the challenges we face, but the potential to help.

In January, the APPG launched its inaugural report, “The ‘Hidden’ Cancer—The need to improve blood cancer care.” Key to this is the word “hidden”. Blood cancer is known as the hidden cancer because although patients may indeed be receiving or waiting to start treatment, they may not be displaying any obvious or visible signs of ill health.

I am careful to try to refer to patients and their support networks, especially in this context, as the impact of diagnosis on a patient’s family must also be considered, especially when children are involved. This is particularly the case for patients on so-called watch and wait. That is typically an option only for people with few or no worrying symptoms, whose quality of life and prognosis will not be affected by delaying treatment, and it is recommended for those with blood cancers or related conditions that are stable or slow-growing. However, if someone has been told that they have cancer and, at the same time, they know that they will literally watch and wait to see when they are in a position to begin treatment, it is understandably disconcerting, to say the least. Patients on watch and wait told the APPG inquiry that specific emotional support was required to help them to come to terms with what was happening. Approximately 27,000 people with blood cancer are currently on watch and wait in the UK. To put this in context, that is 13% of those living with blood cancer.

Turning to mental health, anyone with experience of living with cancer or supporting a friend or family member who has done so will know of the dedication of NHS staff and health workers in seeking to do all that they can to provide support. However, it is vital that these staff are given the tools to ensure that patients are fully equipped mentally through the psychological support that they receive. Our APPG report recommended:

“Patients should have access to the full range of emotional and psychological support services throughout their treatment, for themselves and their families”.

The Government have put mental health on a par with physical health. As such, I would be grateful for the Minister’s assurances that blood cancer patients will receive the psychological support that they need after diagnosis, during treatment and after it has been completed.

I congratulate the hon. Member for Alyn and Deeside (Mark Tami) again on his Adjournment debate yesterday on psychological support after cancer treatment. By working together on a cross-party basis, it has become powerfully apparent to me that we can make a significant difference. Indeed, I have mentioned that only last week, the blood cancer APPG held its latest meeting on access to drugs and treatments for patients. We were fortunate to be joined by MPs, charity representatives and, of course, patients, one of whom said something that has remained in my mind. She said that patients

“don’t know if they’re living or dying”.

That highlights succinctly and powerfully the importance of this work and the importance of patients, politicians, cancer charities, the Department of Health and Social Care and the wider national health service in ensuring that patients are supported as well as treated.

One of the most striking passages of our APPG report referred to the long-term nature of blood cancer, and how it is different from solid tumour cancers. Respondents to our inquiry found that the term “living beyond” blood cancer was irrelevant. They will probably never live without blood cancer—it will remain part of their life—and very few of those patients have access to the recovery package. Indeed, one respondent even said that they did not know what the recovery package was, which is a point of concern. The recovery package assists patients after their cancer treatment has ended so that they can seek to return to their normal life.

I welcome the fact that the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Winchester (Steve Brine) recently reiterated that

“the recovery package is being commissioned and delivered in full or in part by many Clinical Commissioning Groups and providers across England”.

He continued:

“NHS England’s aim is to accelerate the process to ensure full implementation by 2020 so the package will be available to all cancer patients across the country regardless of location.”

He also stated that NHS England was

“building up a picture of current provision to help target future work to support rollout.”

I should be grateful for clarification from the Minister for Health on how support for blood cancer patients is included in this analysis.

Turning to data collection, the inclusion of blood cancer in a range of data collection initiatives will help policy makers to gain a greater understanding of the condition and how patients can be supported. For example, clinical commissioning groups and cancer alliances do not group blood cancer into a single disease area, unlike the national cancer patient experience survey, which means that blood cancer currently receives less attention and therefore fewer resources. The inclusion of blood cancer in the cancer dashboard, which only covers breast, colorectal, lung and prostate cancers, would be a step forward for patients.

Earlier this year, the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Winchester, said in a written answer:

“A second iteration of the dashboard is being considered by the National Cancer Transformation Board with a wider ambition to include rarer cancers and cancers with a lower incidence, such as blood cancers, as the dashboard develops.”

May I ask when we may expect such a development to come into effect?

GP surgeries are a vital part of the NHS. Like all MPs, I receive correspondence from my constituents on the subject of access to GPs. Indeed, in the NHS plan, we need enhanced support for doctors and their capacity to see patients every day, both in Crawley and up and down the country. While the A&E in Crawley Hospital was closed under the previous Government, Crawley Hospital urgent care centre is now open 24 hours a day, seven days a week. I urge the Minister to ensure that hospital services continue to come back to sites such as Crawley Hospital, while at the same time ensuring that the resources are in place to enable our constituents to access their GP, not on the other side of the town or county, but in their own local area.

GPs need more assistance to detect and flag up blood cancer. A GP will see, on average, eight cases of cancer per year, only one of which will be blood cancer. The number of GP visits needed before a cancer diagnosis is significantly higher for blood cancer patients than for people with other forms of cancer. Someone with cancer will of course want to be diagnosed the first time they see their GP with symptoms, but one in six blood cancer patients needed to visit their GP three, four or even more times before diagnosis. Only one in 42 breast cancer patients required such regular visits to be diagnosed with their condition.

In the wider debate, the numbers and the statistics are important. Not far shy of a quarter of a million people are living with blood cancer in the UK, and one in 19 people will develop blood cancer at some point in their lives. In Crawley there were fewer incidents of blood cancer than either breast or prostate cancer, but there were more blood cancer deaths than from either of those other forms of cancer. The challenges are immense. Blood cancer is the UK’s fifth most common cancer, and the third biggest cancer killer. However, there are reasons to be positive. Over a period of almost four decades, from 1971-72 to 2010-11, 10-year survival rates for leukaemia, one of the most common groups of blood cancer, increased from 7% to 46%. Among children, the figure has trebled to 81%.

In all those figures are the individuals who live with blood cancer, who care for family members who are patients, or who are advocates on behalf of those affected by the condition. My constituent Bill Bedford was diagnosed with myeloma in September 2016. He has undergone a stem cell transplant operation and is now fortunately in remission. Bill is one of many patients who are seeking to give something back. He has undertaken a 310-mile cycle ride, from London to Paris, to raise funds for Myeloma UK. Seven-year-old Ebonie Musselwhite, also from Crawley, was diagnosed with acute lymphoblastic leukaemia two years ago. About 650 people are diagnosed with ALL each year in this country, half of them children. Crawley Fire Station and Crawley Lawn Tennis Club are just two of the local organisations that have held fundraising events to help contribute to the cost of support for Ebonie. Angus Rowland, a young man living just outside Crawley, was diagnosed with acute myeloid leukaemia in 2010. Sadly, he died in May 2011, just 14 and a half years old. The Angus Rowland Forget-Me-Not Walk and Run took place in October, just outside Crawley, to raise funds for Bloodwise in Angus’s name.

I said at the APPG report launch that we could not just stand there and be pleased with what we had published in our first report. Rather, it must form the basis of a continued programme of work to effect lasting change. To people living with blood cancer right now, who may be on watch and wait, who may be undergoing treatment, or who may have only just been diagnosed, 1 say this: there are people in Parliament who are on your side, and we will stand up for you. We want to help, and we will keep the pressure on the Government and the NHS. To those who may have undergone treatment, who may be having treatment now, or who simply want to ensure greater support for blood cancer patients, my message is simple: contact your local MP and ask him or her to contact the Department for Health and Social Care, NHS England and local clinical commissioning groups. Let us continue to raise awareness, so that blood cancer is no longer the hidden cancer.

--- Later in debate ---

[The Minister for Health (Stephen Hammond)]

It is a great pleasure to be here.

Blood cancer is the third biggest cancer killer in the UK and nearly 250,000 people are living with it today. Although cancer is relatively rare in younger people, blood cancers are the most common cancer in under-30s, so this is an important debate, despite the fact that the Chamber is not packed.

I congratulate my hon. Friend the Member for Crawley (Henry Smith) on securing the debate and thank him for his contribution as chair of the all-party parliamentary group. As he rightly said, this is cross-party, so I also congratulate the hon. Member for Alyn and Deeside (Mark Tami), who I understand is the deputy chairman and had an Adjournment debate yesterday.

Cancer is a Government priority. Survival rates have improved since 2010. About 7,000 people are today alive who would not be if mortality rates had remained at those levels. This must continue. We are transforming cancer services across England and taking an “all cancer” approach to improvements. We want our cancer services to be the best in the world. We want all cancer patients to have access to the treatment and the care that will allow for the best possible chance of a successful clinical outcome.

This is really important. That is why the Prime Minister last month announced a package of measures that would see 75% of all cancers detected at an early stage by 2028. Currently, just half of all cases are detected at an early stage. The new 75% target applies to all cancers, not just the 10 currently in the public health outcomes framework early diagnosis metric. We are keen to work with charities representing sufferers of cancers not currently included in that metric on how best to measure progress towards the 75% target.

We are reforming screening, and investing in technology and research to improve diagnosis and care. That will form part of the long-term plan for the NHS and forms part of how we will achieve our ambition of seeing 55,000 more people surviving cancer for five years in England after 2028.

In December 2016, the Government invested £200 million to encourage earlier diagnosis, improve the care for those living with cancer and ensure that cancer patients get the right care for them. Early diagnosis of blood cancers can sometimes be difficult, as my hon. Friend said. Symptoms can be vague and often misdiagnosed, delaying treatment.

[Mark Tami]

That is a particular problem with children. Sometimes these things are dismissed as growing pains or bruising—just kids being kids.

[Stephen Hammond]

The hon. Gentleman makes an important point. That is essentially why the Government put that money in—to ensure that earlier diagnosis could be enabled. He makes a valid point. It is clear that sometimes patients see GPs multiple times before getting that referral. The money put in to ensure that earlier diagnosis will hopefully ensure that that referral happens more quickly.

In addition to helpful earlier National Institute for Health and Care Excellence guidelines, NHS England has been testing innovative ways of diagnosing cancer earlier, with sites piloting multidisciplinary diagnostic centres for patients with vague or non-specific symptoms, such as those common in blood cancers. In her announcement, the Prime Minister pledged to roll out these rapid diagnosis centres nationally to offer all patients a range of tests on the same day with rapid access to results.

My hon. Friend the Member for Crawley mentioned CAR-T cell therapy. He will know that earlier diagnosis must mean earlier treatment and there have been some exciting developments in that area for people under 25 with leukaemia. Last week, NICE recommended the pioneering cancer treatment CAR-T cell therapy for young people with relapsed or refractory B-cell acute lymphoblastic leukaemia.

My hon. Friend asked about what is happening and timescales. Through the Cancer Drugs Fund, Kymriah will now be offered to people under the age of 25 who have not responded to current treatment or who have relapsed from stem cell transplants. That marks a new generation of personalised medicine with the potential to transform cancer patient care worldwide. As he knows, the work is in its early stages. We know that more personalised treatments will be game changers in cancer treatment.

My hon. Friend also talked about people who have to live with and beyond cancer. More than 300,000 people are diagnosed every year. Innovations in treatment mean that more people look forward to a life after cancer and, as survival improves, we must ensure that patients enjoy as good a quality of life as possible after treatment. We are rolling out the recovery package to every cancer patient by 2020, including of course those with blood cancer. This is a set of interventions designed to help patients and clinicians to assess a patient’s physical and emotional needs at appropriate points on the journey of recovery. It goes from diagnosis at the beginning to recovery at the end. For blood cancer patients, the recovery plan will be personalised to take account of the unique characteristics of blood cancer, which can be very different from those caused by a solid tumour, as my hon. Friend, the chair of the all-party parliamentary group, rightly recognised.

My hon. Friend asked for some comments on psychological support, which was the basis of the Adjournment debate yesterday. Many patients with a chronic blood cancer diagnosis will sadly never be cured. They will be on a regime of watch and wait, often over many years, to see if the cancer has progressed to a point where treatment needs to take place. This takes a huge psychological toll on the patient and their family. The recovery package therefore takes a holistic approach and also considers mental health needs. When patients require additional psychological support, they must have access to appropriate mental health services. Mental health is a priority for the Government, and last year we announced an additional £1.3 billion to expand the NHS mental health workforce, which will allow an extra 1 million patients to be treated by 2020-21. That will help to ensure that cancer patients can be referred promptly to any psychological support they need as part of their recovery package.

My hon. Friend mentioned including blood cancer in the cancer dashboard. Public Health England is working with NHS England on the next phase of the dashboard development, and this will be informed by the needs of key stakeholders and cancer charities. I know that the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Winchester (Steve Brine), has expressed his frustration that the dashboard is limited to the top four cancers and wants to see it expanded. NHS England and Public Health England have had clear direction from him on this, and he and the Department will be watching this with interest. I know that he will want to speak to my hon. Friend and to the all-party parliamentary group on that matter.

I hope that my hon. Friend the Member for Crawley will be reassured to hear that the Government are absolutely committed to transforming services for all cancer patients, including blood cancer patients. More people are being referred and diagnosed than ever before, and thanks to innovative treatments, more of them will survive their cancers. The cancer strategy and the progress that the Government have made in implementing its 96 recommendations provide the ideal launch pad for the long-term plan. With cancer as one of its key components over the next decade, it will enable the NHS to ensure that every cancer patient gets the emotional, psychological and physical support that they need to live well with, and beyond, cancer.

Question put and agreed to.