Paediatric Cancers of the Central Nervous System

Mark Tami Excerpts

Monday 22nd October 2018 Commons Chamber

[Chris Elmore]

I agree, and I will touch on the impact on families later in my speech. People talk of the late Baroness Jowell—Tessa—and her legacy. There can be no greater legacy than securing the additional research funding through her campaign on tackling the causes of brain tumours. Of her many great achievements, that has to be the one that will live with all of us the longest.

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

My hon. Friend will be aware of CLIC Sargent’s campaign. In an event today, the charity highlighted the cost of travel for families with children who are in treatment. The average is about £200 per month. We need to do a lot more to support families and to cover some of those costs.

[Chris Elmore]

I agree. Often with children’s cancer, one member of the family—usually the mother—has to give up their job to be a carer. That has a massive impact on the family. I completely agree with my hon. Friend that that has to be addressed.

--- Later in debate ---

[Chris Elmore]

I agree with the hon. Lady entirely. There is clearly a need to look not just at treatment but at what comes next. If we are to improve survival rates, which we must—research is a key part of that—then we need to look at what comes next for these families and for the children who, touch wood, will survive.

[Mark Tami]

We must not forgot mental health either. It is very important that we provide support and counselling afterwards. After what these young people have gone through, it is important they receive mental health support.

[Chris Elmore]

I agree entirely with my hon. Friend. It is such an important part of the recovery that families go through. That a child has cancer is in itself a huge trauma. What comes next is so important, and mental health for both the child and the family cannot be forgotten. This again underlines the life-changing effects of cancers such as AT/RT on a child. It will in all likelihood impact on every aspect of their life.

There is a great deal of positive work happening in this House. I would like to pay tribute to my hon. Friend the Member for Bristol West (Thangam Debbonaire) and her colleagues on the all-party group on children, teenagers and young adults with cancer, who recently held an inquiry into patient experiences of childhood cancers, the findings of which were published this year. After discussing the inquiry with my hon. Friend, I would like to thank the Minister for the positive contribution he made to it. I ask him and the Secretary of State to look at the report’s recommendations. Many are comparatively inexpensive and would make a huge difference to the children and their families who find themselves in this situation. I appeal to the Minister to update the House on his response to the all-party group’s findings.

Transforming Care Programme

Mark Tami Excerpts

Thursday 5th July 2018 Commons Chamber

[Paula Sherriff (Dewsbury) (Lab)]

Let me start by congratulating and thanking the right hon. Member for North Norfolk (Norman Lamb) for securing this debate and the Backbench Business Committee for granting the time on this very important issue. As the motion today notes, the transforming care programme was created with the stated intention of improving quality of care and quality of life for children and adults with a learning disability or autism who display challenging behaviours.

As we have heard from Members today, people with learning disabilities too often suffer from neglect, abuse, poor care and even premature death. Unfortunately, as the right hon. Gentleman set out, the transforming care programme simply is not delivering the promised improvements in their lives. Instead, too many are wrongly admitted to assessment and treatment units, in which they remain trapped, rather than living independently where they can be with their families and friends and, of course, the support network that comes with them. The community services that should be part of that support network are themselves underfunded and simply do not have the capacity that is needed. As it stands, the transforming care programme is unlikely even to come close to the ambitions rightly set out in the “Building the Right Support” strategy by March 2019, when it is due to conclude. Let us take, for example, the target to decommission 900 learning disability beds in conventional hospitals. The Minister admitted just this week, in an answer to my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), that the Government have not even come close to meeting the halfway point to that target.

Seven years after Winterbourne View and more than two years on from the start of “Building the Right Support” strategy, there has been a startling lack of progress in key areas. There has been little reduction in the number of people in in-patient units and in the number of admissions. Indeed, the most recent data, from May 2018, shows that there are 2,400 people with a learning disability and/or autism in in-patient units, which is an increase since the last monthly data was released. It should be of great concern that the number of children in in-patient units has also increased. The latest NHS Digital data shows there are 250 children in these units, more than double the number of children—110—who were reported as being in in-patient units in March 2015. There are 465 young people aged between 18 and 24 in in-patient units, and this age group makes up a significant proportion of the whole transforming care in-patient cohort. This data suggests that the transition from child to adult services is the point at which people with learning disabilities are particularly at risk of admission, as Dame Christine Lenehan pointed out in her review last year.

As we have already heard this afternoon, the average length of stay in in-patient units has stayed largely the same, at approximately 5.4 years. Similarly, in answers to my hon. Friends Ministers have admitted that discharges into the community actually went down in the last year, and quite significantly so for those with learning disabilities. It is clear that transforming care is not delivering the promised outcomes at this time. Unfortunately, this failure fits the wider picture of neglect for people with learning disabilities and the services on which they rely.

The recent learning disabilities mortality review came seven years after Winterbourne View and nearly three years since the death of Connor Sparrowhawk, which in part prompted it. Its findings show the scant regard with which people with learning disabilities are treated.

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

The fact that the risk of people with learning disabilities dying before the age of 50 is 58 times higher than the rest of the population is scandalous in itself.

[Paula Sherriff]

My hon. Friend makes a very valid point. Everybody here this afternoon could not fail to be shocked and horrified by the case outlined by my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) regarding her young constituent, Matthew, and the quality of care that he received on an in-patient unit.

Some 1,311 cases were passed for review between July 2016 and November 2017, but only 103—that is 8%—have finished so far. The report cited a lack of local capacity to review cases, inadequate training for people completing mortality reviews and insufficient staff capacity to complete a mortality review. Will the Minister update the House on when the remaining cases will be finalised and what the Department is doing to ensure that these barriers are tackled? In 13% of cases reviewed, the person’s health had been adversely affected by delays in care or treatment, gaps in service provision, organisational dysfunction, neglect or abuse.

Just how many more deaths must occur before the Government tackle the unjust treatment of people with learning disabilities? Dr Ryan, Connor Sparrowhawk’s mother, was also damning in her assessment. She said that too many agencies had shown “systematic disregard” for some people with learning disabilities and she felt that certain people “simply don’t count” in the eyes of the authorities. We must do better, and we must show that every single life matters. But our fear is that, without some fundamental changes in the Government’s approach, the problem is set to get worse, not better.

Take the NHS workforce, for example. The latest figures from Health Education England show that the number of learning disability nurses working in the NHS has gone down by a third over five years. HEE data from March 2017 shows that learning disability nursing had the highest proportion of vacancies, at 16.3%, compared with all other fields of nursing. Will the Minister tell us how the Government plan to tackle this?

It is bad enough that the failures of transforming care have left too many people inappropriately in hospital settings, but the lack of trained staff when they are there makes that failure all the more stark.

BAME Blood, Stem Cell and Organ Donation

Mark Tami Excerpts

Wednesday 27th June 2018 Westminster Hall

[Mohammad Yasin (Bedford) (Lab)]

I beg to move,

That this House has considered BAME blood, stem cell and organ donation.

It is a pleasure to serve under your chairmanship, Sir Henry. I first became aware of the issue of blood, stem cell and organ donation within black, Asian, mixed race and minority ethnic communities when I met Poonam Shah, who works in my constituency. Poonam’s husband, Rakesh, died from a blood disorder at the age of just 35. Due to Rakesh’s Indian heritage, he struggled to find a donor with the 10 matching genes that would have helped ensure that his blood would accept the donor’s cells. Eventually, an anonymous donor with eight out of 10 matches was found from South Africa for Rakesh, who had a stem cell transplant in October 2014.

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

I am very pleased that my hon. Friend has secured this important debate. I should declare that I am chair of the all-party parliamentary group on stem cell transplantation. My hon. Friend makes a point that is particularly relevant for the BAME community—often the donor will come from outside the UK. There have been a number of cases where there have been difficulties with visas. Time is vital in this area and we need a fast-track process to make sure that those people can get here as quickly as possible.

[Mohammad Yasin]

My hon. Friend makes a very good point. I recognise the work that he has done as the chair of the APPG on stem cells. This is a very important issue, and that is why we are having this debate today.

ME: Treatment and Research

Mark Tami Excerpts

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

I agree entirely with the hon. Gentleman. It is a tragic situation when children are not able to attend school and social services become involved because they consider there to be a problem with those children’s care.

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

It is particularly difficult for those who attend benefits assessments on a day when the symptoms are not as bad, because there is no acceptance that the illness can be very bad on some days, but not quite as bad on other days. Does the hon. Lady agree the benefits system must look at the longer term picture, rather than the short term?

[Carol Monaghan]

I will come on to interactions with the Department for Work and Pensions. ME patients report that energy levels vary. Sometimes, going to such an appointment can wipe out someone for many weeks afterwards. If that person were to attend the appointment the following day, their condition would be very different.

Surgical Mesh

Mark Tami Excerpts

Thursday 19th April 2018 Commons Chamber

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

I beg to move,

That this House commends the recent announcement of a retrospective audit into surgical mesh for pelvic organ prolapse and stress urinary incontinence; notes that vaginal mesh has been banned in other jurisdictions such as New Zealand; further notes that NICE guidance recommends against the use of surgical mesh for pelvic organ prolapse and that no NICE recommendations have been made for stress urinary incontinence; notes that Sheffield University recently announced the development of a new mesh material; and calls on the Government to suspend prolapse and incontinence mesh operations while the audit is being carried out, to bring forward the NICE guidelines for mesh in stress related urinary incontinence from 2019 to 2018, and to commit to a full public inquiry into mesh if the audit suggests that this is the best course of action.

I pay tribute to the Backbench Business Committee for enabling this debate to take place and to the fantastic work done by the all-party parliamentary group on surgical mesh implants, of which I am a vice chair, and which is led by my hon. Friend the Member for Pontypridd (Owen Smith). I also thank the hon. Members for East Renfrewshire (Paul Masterton) and for Glasgow North West (Carol Monaghan) for their support in bringing forward this debate, as well as the amazing Kath Sansom and the campaign group Sling the Mesh—many of the women up in the Gallery have done so much to bring this to public attention. It is for the members of this group and everybody else affected by this scandal that I rise to speak today.

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

Is my hon. Friend as alarmed as I am—she clearly is—that today and tomorrow women will be having operations that might well cause them complications in the future? Does she agree that these operations should be stopped until we find out the truth?

[Emma Hardy]

I absolutely agree. One of the main points I wish to make is the urgent need to suspend the use of mesh.

The issue of surgical mesh was brought to my attention by a constituent of mine called Angie, an incredibly brave woman who used to be very fit and healthy, but who, after having incontinence following the birth of her twins and a hysterectomy, was advised to have this mesh operation. She is now unable to work, in constant pain and suffering, cannot take part in sports and has problems sleeping. I remember listening to what she said to me and feeling horrified that this had happened to her. As I have learned, she is most definitely not alone. One story that moved me came in by email this week. The lady who emailed wrote:

“I started noticing that something wasn’t right with me the second day after I was discharged after the operation. It started with my legs—they were extremely stiff and cold, especially my feet, I couldn’t warm them in any way. I rang the hospital, but it didn’t ring an alarm bell to them. Then after a few days, I started having a very bad stomach ache, nausea, headache, chest pain, something happened to my vision, out of the blue, I became very tired and weak, slightly dizzy. I started noticing that I couldn’t focus and think clearly, my scars didn’t heal well and suddenly after a month my biggest scar started producing very smelly discharge.

I requested an appointment with a GP. I was already complaining that something wasn’t right with me. Everything started after the operation…When my health and all symptoms got worse 12 weeks since the operation, I was told that my fatigue is because I have a 2 year old...Now, it’s been 14 months since my operation—I am extremely dizzy and have very poor balance. I can’t feel the ground with my legs. I’m extremely nauseous, I have bad stomach ache, migraines, breathing problems and chest pain. I’m numb. I have vision fog and very painful, sore eyes. My body can’t recognize the temperature. Either I’m too cold or I’m about to faint from the heat. I started having very bad side effects to antibiotics, supplements or even herbal teas. Before the operation, I had no side effects at all. In 8 months, I lost 12% of my total weight and now I’m 8 and a half stone and still losing weight. This mesh wipes my iron out from the system. My fertility is gone.”

--- Later in debate ---

[Mark Tami]

My hon. Friend mentioned women feeling that they were alone, which is one of the main problems. I have spoken to a lot of people who were told that there was not a problem and that they were perhaps the only ones experiencing a problem. People were on a host of painkillers and were not told that others had experienced the same and that it was a much wider problem.

[Emma Hardy]

Part of the scandal is how many women were treated when they went back to their doctors. The fantastic work of groups such as Sling the Mesh has brought so many women together, and shown them that they are not alone and that many others have suffered.

The number of subsequent gynaecology out-patient appointments per 100 people having the mesh insertion procedure is 79. There are 43 out-patient appointments per 100 for rehabilitation, physiotherapy and occupational therapy. The figures show that the number of women having the procedure has fallen during the last nine years by 48%, which says an awful lot about what doctors think.

These women were injured. These women were ignored. These women are the victims of a scandal.

--- Later in debate ---

[Dr Wollaston]

I absolutely agree. It strikes me that there has been a kind of wild west out there, with representatives saying, “Why don’t you try this one? This is probably going to be better”, without organisations setting up clinical trials from the start so that we could compare different devices, and without women giving properly informed consent that a different kind of device would be used. Lessons have to be learned not just for mesh surgery, but for other medical devices. Just because something sounds like it might be better, it does not mean to say that there will not be serious complications. Those complications may also happen at a late stage. We need databases such as EUDAMED so that we have access to the widest possible population base and clear device tracking.

[Mark Tami]

Does the hon. Lady agree that many women were told that this was like a miracle cure—a very quick fix—and were not given all the facts about it?

[Dr Wollaston]

I do agree.

As I say, informed consent is essential, and that was lacking in very many cases. There are cavalier attitudes and assumptions that medical devices are somehow safer than medicines, but we know that that is simply not the case. We have to rigorously make sure that devices are all part of clinical trials, with long-term follow-up and tracking. Perhaps the Minister could update us on how we are getting on with the barcoding of devices, which clearly makes them over time. One of the tragedies is that many women are completely unaware that they have even had mesh inserted at all. That, again, has to be a lesson that we learn for the future about accurate documentation.

I hope that the Minister will comment on whether there are plans to introduce compensation for victims. As I said, many of the women I have met have had profound, life-changing injuries, and many are entitled to compensation.

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[Owen Smith]

Yes. The long and the short of it is that this has become such a widespread problem because younger women, in particular, were told by their doctor that there was a quick and easy way in which a minor inconvenience for many women—although a major inconvenience for some—could be dealt with.

Clearly, the scale of the side-effects was not apparent, for all the reasons my hon. Friend the Member for Kingston upon Hull West and Hessle listed, but notably because there is no long-term trials data in respect of devices. The sorts of complications that we now see emerge over a long period. That is why, in our country and across the world, such widespread concern about mesh has been emerging in every health market.

[Mark Tami]

My hon. Friend mentioned removal of mesh. Does he agree that there should have been a lot more research about how easy it is to remove, because it is actually very difficult and only a few surgeons will undertake that work?

[Owen Smith]

My hon. Friend is right. The whole point of mesh is that it is designed to induce scar tissue in order to fuse the mesh with the muscle, and therefore trying to excise the mesh is incredibly difficult. That is why there are partial removals and some women are left with pieces of mesh inside them, even after surgery. Those sorts of complications are clearly very worrying. They ought to have been explained properly to women, but obviously were not, in very many cases.

Autism

Mark Tami Excerpts

Thursday 29th March 2018 Commons Chamber

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

I beg to move,

That this House notes that World Autism Awareness Week 2018 runs from 26 March to 2 April; believes that there is a lack of understanding of the needs of autistic people and their families; and calls on the Government to improve the support provided to autistic children in school and to autistic adults in or seeking employment, to reduce waiting times for autism diagnosis, and to promote a public awareness campaign so people can make the changes necessary for the UK to become autism-friendly.

I welcome to the Front Bench the Minister for Care, who will be responding to the debate. I gather that she chaired an autism accountability meeting on Monday, so she brings knowledge of that to the debate, and I look forward to hearing what she has to say. I thank the Backbench Business Committee for granting this debate during World Autism Awareness Week itself.

I want to put on record my great pride at chairing the all-party group on autism, which is a really good cross-party group that embraces people from both sides of the Chamber. It is important that we continue this debate on a cross-party basis because, as we must remind ourselves, in each Member’s constituency we probably have approximately 1,000 autistic people. The accepted statistic is about one in 100 people. This is therefore a subject that we share between us, and one on which we can make good progress when we all work together.

I am also aware that many Members have family members who are on the autism spectrum. I wish to put on record my thanks to colleagues who have shared their own experiences, because those experiences add to the body of knowledge and to the effective way in which we can improve situations for people with autism and their families.

The fact that this is such an important issue is reflected particularly in the National Autistic Society’s Too Much Information campaign, with which many of us will be familiar. Only 16% of autistic people and their family members think that the public really understand autism in any meaningful way. As a result, an alarming number of people—79% of autistic people and 70% of families—feel socially isolated. At a time when our Prime Minister has put in place a Minister for loneliness, we must not forget the isolation that can be caused for autistic people through behaviour or a lack of understanding in this area. Half of autistic people and their families sometimes do not even go out because they are worried about how people will react to autism, while 28% of autistic people have been asked to leave a public space because of behaviour associated with their autism.

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

Does the right hon. Lady agree that the situation is also very frustrating for those who fail to get a diagnosis of autism, particularly when their local authority is not able to provide one, or says that it does not have the resources to do so? Even if a person pays privately for one, the local authority will not accept that as a diagnosis.

--- Later in debate ---

[Mr Sheerman]

My hon. Friend is absolutely right. Indeed, I would urge Members of Parliament to encourage autism-friendly environments in their constituencies. Having soft lighting and not too much noise can make a very big difference to accessibility.

This is World Autism Awareness Week. As I said, the Westminster Commission on Autism works very closely with the all-party group. Indeed, the right hon. Member for Chesham and Amersham is a member of the commission. Yesterday, we were proud to launch a report called, “A spectrum of harmful interventions for autism”. Many people in this country—very wicked people—play on people’s stress, worries and concerns and sell treatments for autism that really should be banned. They use social media. It is a disgrace in our society that people prey on very stressed families with children or other members with autism. We took evidence on this, and it was really upsetting to hear about the kinds of treatments and therapies that were on offer. It is a very interesting area, because it is unclear whether it is covered by the food regulator or the medical regulator, so no one is quite sure who to complain to. Our report has the answer. It is very important, and I hope that hon. Members in all parts of the House will promulgate it.

The most serious thing that we have to address is what happens when someone—usually both parents, but a mother nearly always knows earlier—notices very early on that something is not quite right. Then there is the frustration of not knowing who to talk to, where to go and where the support is. I am not going to be political at all, but one little thing is that children’s services are deeply under pressure in every local authority.

[Mark Tami]

Does my hon. Friend agree that another crucial time is when someone moves from children’s services to adult services? That can be a very traumatic period if it is not handled properly.

[Mr Sheerman]

Absolutely. All my experience suggests that most work now needs to be put into early family support, in every way. People feel so isolated and bereft of support, and bereft of knowledge. Thanks to the right hon. Member for Chesham and Amersham and others, there is a lot of information out there, but how do people get it when they have never even really understood what autism means?

Organ Donation (Deemed Consent) Bill

Mark Tami Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

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

I thank my hon. Friend for introducing this Bill. I think that he will move on to the point that transplant surgery is now becoming routine and people are living normal, long lives as a result. When I was growing up, a heart transplant was the No. 1 item on the news, and now they are being carried out every day.

[Mr Robinson]

Indeed, and the consequence is that to some extent we are victims of our success. We now have a growing need for organs and a growing waiting list for them, as I will mention. That problem must concern us all, and as a country, we must find a proper resolution.

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[Dan Jarvis]

My hon. Friend makes an important point. It reinforces the notion that, in addition to legislation, all of us who believe in the value of organ donation should ensure that as many people as possible register. The Bill will play an important role in that, but all of us, as leaders in our communities, have an absolute responsibility to get that message across to our constituents.

I do not intend to detain the House much longer, but I do want to make the point that we are lucky and privileged today to be joined by Emma Johnson. Emma is often referred to as “Max’s mom”, although I do not think she minds. As the hon. Member for North Devon mentioned, Max is the 10-year-old who fronted the Daily Mail’s campaign on organ donation. He was kept alive by a tiny metal pump that was in his chest for seven months. I am delighted to learn that, after finally receiving a heart transplant, Max is doing well. His story and that of the sacrifice made by Keira Ball, spoken of movingly by the hon. Gentleman, should serve as an inspiration to us all. We are here today to save lives like Max’s: those of the thousands of people who would benefit from the change set out in the Bill. We have a precious opportunity to make that change today. We have at our fingertips the opportunity to make a powerful, important and meaningful change.

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

It is not entirely the same, but my son Max is alive today because he received a stem cell transplant. Does my hon. Friend agree that we need to do more to encourage people on to the stem cell register and that, as with transplants, we must get rid of the myths—in this case, that stem cell donation is painful and difficult and that they take part of your spine? None of that is true. It is a very simple process, and one by which many more lives could be saved.

[Dan Jarvis]

I absolutely agree with my hon. Friend. None of these things should be particularly contentious. I understand that there are points of debate and that some hon. Members and people in the country have legitimate differences over these most sensitive of matters, but I am encouraged by the level of support today and heartened that we have the support of the Prime Minister and the Leader of the Opposition. It is incredibly encouraging that the Minister is very supportive and that the Opposition Front-Bench spokesperson has given a clear commitment that they will support the Bill. There is overwhelming support for the measure in the House today. So far we have seen Parliament at its very best, and I am keeping my fingers crossed that we can maintain the consensus for the next couple of hours.

--- Later in debate ---

[Mrs Hodgson]

Families are at the heart of this, as my hon. Friend the Member for Coventry North West, who is promoting the Bill, made clear, and I am sure that the Minister will as well. It is important that families’ voices are taken into consideration when these discussions take place.

I know that I am not alone in this House in carrying a donor card and being on the register. Like many other organ donors, I signed myself up because of a direct family experience. My Aunty Ella, who is sadly no longer with us, was one of the first patients to receive a kidney transplant at the fantastic Freeman Hospital in Newcastle way back in 1967. It was pioneering surgery back then, and it is great to hear my fellow Sunderland MP, my hon. Friend the Member for Sunderland Central, also commending the work of the fantastic renal team at the Freeman Hospital who are currently treating and supporting her daughter Rebecca so well. My Aunty Ella lived a full life because of her transplant. In those days, it was perhaps not as long as she would have liked, but she was able to see her children Norman and Stephen —my cousins—grow up to get married. All she wanted to do was to see them grow up, but she lived on to see them give her grandchildren. That is what organ donation is all about: it gives people a future. Just one donor can save up to nine people—as we heard, Keira Ball saved four—and it can give those nine people a future with their loved ones, which is why it is so important.

Of course, there are some concerns among some religious communities. We heard about that earlier from the hon. Member for Hendon (Dr Offord), and I know that my hon. Friend the Member for Leicester South (Jonathan Ashworth), the shadow Secretary of State for Health, has met representatives of one particular Jewish community to discuss their concerns. There are also concerns among black and minority-ethnic communities, as we heard from my hon. Friend the Member for Ealing, Southall (Mr Sharma). Although they are more susceptible to illnesses such as diabetes, hypertension and even heart disease, only 35% of black and Asian people in the UK—where the population average is 63%—agreed to organ donation last year.

[Mark Tami]

The same applies to stem cell transplants, which I raised earlier. It simply is not acceptable that those who happen to be white probably have an 80% to 90% chance of finding a possible match, whereas for those who come from a certain ethnic background the figure could be as low as 30%. I do not think we would accept that in any other walk of life.

[Mrs Hodgson]

My hon. Friend has made exactly the right point. This does not apply only to, for instance, kidney and heart transplants; it applies to the whole donor register. The Government must listen to the concerns of black and Asian communities, not just during the consultation but beyond, so that we can develop a solution to this problem.

--- Later in debate ---

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

I thank the hon. Member for Coventry North West (Mr Robinson) for bringing this Bill to the House; he has secured his fortunate position in the ballot and used it constructively. I am therefore grateful to him and confirm that the Government will give his Bill our wholehearted support. It has been an absolute pleasure to work with him and the hon. Member for Barnsley Central (Dan Jarvis) and to get to the place we are in now, having a Bill we can all support. The reason why we are here, in a relatively painless way given our discussions, is that we were all focused on the shared objective of saving lives and securing the availability of more organs for donation. I am extremely grateful to him, and I wish the Bill Godspeed and hope that it gets on to the statute book as soon as possible.

We have heard some moving stories today, and I want to make particular reference to my hon. Friend the Member for North Devon (Peter Heaton-Jones), who talked about the bravery of Keira Ball, who has saved four lives. I shall say a little more about that later. I also want to thank the hon. Member for Sunderland Central (Julie Elliott), who spoke movingly about her daughter. The real thing about this subject is that once we hear the human stories about people who have given organs, consented to their relatives doing so when they have been bereaved, witnessed family members needing an organ or indeed been a live donor, we cannot fail to be touched by their experiences. It is certainly with considerable commitment that I will do my bit to ensure that more organs become available for donation.

[Mark Tami]

I have spoken briefly about my own experience with my son, who was able to get a stem cell donor. We were in hospital for quite some time, and I saw many parents who did not find a donor. That was very difficult, and, to be frank, I felt a degree of guilt because we were fortunate and I knew that I was looking at someone whose child was going to die. That is a heartbreaking situation, and we need to do whatever we can to ensure that more people get on to the register and donate organs.

[Jackie Doyle-Price]

The hon. Gentleman puts that as well as it could possibly be expressed. That is entirely the motivation behind the Bill. We are losing too many people each year because they need organs, and it would be a poor Health Minister who did not do their best to remedy that. He is absolutely right to describe the very real impact when we see people in that situation. I have been on my own journey with my constituent, who has already been mentioned by the hon. Member for Kingston upon Hull West and Hessle (Emma Hardy). My constituent painfully lost her daughter, who was waiting for a transplant, and she has used that experience to campaign for this important cause. She has also taken the step of becoming an altruistic donor herself. Who could fail to be inspired by such a story? I am pleased to be able to deliver on the promise that I made to Patricia, when she came to see me for the first time, that I would do everything I could to secure more organ donations. And here we are today, delivering that.

Last October, the Prime Minister pledged her personal support to change the law on organ donation and, in doing so, to help more people across the country to achieve an organ transplant. We should also remember the contribution of Max Johnson, whose struggle was embraced by the nation and who has done so much to highlight this important cause. As a consequence, we in the Government will be referring to this legislation as Max’s law, and we will do everything we can to ensure its passage. In that regard, I am grateful for the Opposition’s support, which will ensure that it has a speedy passage. With such cross-party commitment, we should not fail. As Max, his family and families all over the country who have experienced life on the transplant waiting list know, organ donation is a precious gift, and the family of Keira Ball deserve our special tribute. The fact that she has saved four lives is incredibly inspirational.

I want to echo the tributes that have been paid to the Daily Mirror. We do not often talk about national newspapers in a complimentary way in this House, but the Daily Mirror has done a fantastic job of highlighting this cause. This illustrates what the press can achieve when it puts its mind to something positive. I echo the tribute paid to “Coronation Street” by the hon. Member for Washington and Sunderland West (Mrs Hodgson). Like her, I am pretty addicted to the soaps, and we should not leave out “EastEnders”, which highlighted live liver transplantation last year. She was right to say that the soap operas have also been good at highlighting mental health, but it is particularly apposite that we have seen the organ donation story this week. I commend “Coronation Street” for tweeting a link to the Government consultation in the immediate wake of that programme, which I think is a first. It would be helpful if soap operas highlighted future Government consultations, but I do not think it will be common.

I will be fairly brief in addressing some of the points that have been raised. A number of Members expressed concern about moving from an opt-in system to an opt-out system, and I reassure them that the concept of organ donation being a gift voluntarily given by the donor remains central to the Bill’s principles. There can be no question of the state taking control of organs, which is why the ability to opt out is central to the Bill. Opting out will have to be made extremely easy, and people will have to be able to continually revisit their decision if they wish to change their mind.

It is also central to the Bill that family consent is respected. The circumstance in which someone is able to donate their organs is clearly traumatic and difficult. In considering the whole period at the end of life and the struggle that surgeons are undertaking to save lives, it is important that we are sensitive about that time. We need to be sure that, once someone has lost the capacity to give consent, their family, as next of kin, have their rights protected. I have no doubt that we will explore some of those issues in Committee.

I put on record the representations I have had from the medical establishment, which would feel uncomfortable if consent were not sought from the family. In developing a regime that secures more organs but is also sensitive to everybody’s views, we are able to strike the right balance in the Bill.

Cancer Strategy

Mark Tami Excerpts

Thursday 22nd February 2018 Commons Chamber

[Thangam Debbonaire]

The Minister is nodding vigorously from a sedentary position, and I hope that means he will support better labelling.

I could speak about how important healthy habits are generally for reducing cancer, and again I ask the Minister to do more to urge people to take up those healthy habits from an early age. I could speak about how all women should learn how to check their breasts properly, because so many have told me that they do not how to do that. I could talk about what I learned last week in CERN, of all places, where the Large Hadron Collider is, about the contribution that that scientific institute has made to improving diagnoses of cancer. I could mention, for instance, the development of the MRI—the magnetic resonance imaging—machine. I spoke to scientists there who, I am glad to say, are doing what they can to reduce the very frightening knocking that happens when a person is inside the machine. However, today, I am going to speak about the patient experience of a very specific group—children and young people with cancer and their families.

I say to those children and young people, their parents, their brothers and sisters, their clinicians and the charities supporting them, who may be listening, that this speech is for you. I pay tribute in particular to CLIC Sargent and the Teenage Cancer Trust and thank them and all the other charities, too numerous to mention, that help children and young people with cancer every day. I want to give a very personal thanks to my sister-in-law Emilie, whose volunteering, fundraising and work for CLIC Sargent is an inspiration to so many and whose personal knowledge has taught me so much.

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

I am a parent of a child who has had the support of CLIC Sargent. It is not only that the charity supports you from a medical point of view—the people you talk to actually understand what your child and you are going through.

[Thangam Debbonaire]

I thank my hon. Friend for that intervention. He is absolutely right: these specialist organisations understand not just what the patient is going through, but what the families are going through and how devastating a diagnosis can be. They also know what can be done to help people through it.

I set up the all-party parliamentary group on childhood and teenage cancer last year with the help of CLIC Sargent and the Teenage Cancer Trust, which provide the secretariat, because children and young people living with cancer and their parents told me that they want to have their voices heard in Parliament. I thank the officers, almost all of whom are here, for their work. I thank my hon. Friends the Members for Alyn and Deeside (Mark Tami), for High Peak (Ruth George), the hon. Members for Filton and Bradley Stoke (Jack Lopresti) and for Strangford (Jim Shannon) for their support.

Childhood cancers are, thankfully, rare. Just 4,000 children and young people under 25 are diagnosed with cancer each year in the UK, but this rarity means that they are very often difficult to diagnose and, therefore, much more likely than older patients to be diagnosed at emergency at a later stage. That also means that the treatment can be difficult and that children, young people and their parents have to travel a long way for specialist treatment. It can mean that treatment can be particularly and unpleasantly aggressive. There are consequences for children’s education and their future employment. The treatment may also affect their fertility—something that they may not even be thinking about at the time of diagnosis. It may cause a disability. It may set them apart from their friends at exactly the moment when they are just finding out who they are.

In Bristol, the Teenage Cancer Trust provides a specialist ward for teenage cancer patients—I thank everyone who works there. It is able to help teenagers and their parents to get through this difficult time with services that are tailored to their specific needs. CLIC Sargent provides specialist support, which, in Bristol, includes a home—not a house—for children and their families to live in and have care from while they are having treatment for cancer. Indeed, a parent I met when visiting the CLIC Sargent house told me of arriving in Bristol in the morning with nothing—apart from them and their child—expecting just a check-up, and by the evening discovering that their child had cancer and that the treatment was due to start immediately. The CLIC Sargent social worker in that case can explain what the house does and what the facilities are and help to guide people who are suddenly dealing with not only a really traumatising experience, but having no food, no clothes and no supplies for the next few days.

Two years ago, the “Cancer costs” report, the parliamentary launch of which I had the honour of hosting in autumn 2016, identified specific costs for families affected by childhood cancer. I urge the Minister to relook at that—I am sure that he has already seen it. Young people and parents at that launch told me that they wanted a voice, hence the formation of the all-party group. We are launching our first inquiry on Monday, looking at patient experience, and I know that the Minister will want to engage with that process as we go forward.

We want Parliament to better understand the really specific experience of children and young people with cancer and their families and to identify whether their needs are being met and where improvements can be made. For example, there might be suggestions for improvements to cancer diagnosis, post-treatment support, or help with the specific issue of the impact of the diagnosis that my hon. Friend the Member for Alyn and Deeside mentioned, as well as all the other areas that I have listed.

Many of us here may have had contact with children with cancer or their parents in our constituency work. I say to those people: this inquiry is for you, but it is also about you and with you. Young people, parents and professionals can get involved from Monday by filling in the short online survey on the all-party group’s Twitter feed and website. They can find out more about the inquiry on the webpage if they just google “APPG young cancer”. Our lines of inquiry are also informed by what children, young people and parents have already told us, and we have young people involved in hearing and analysing evidence as well as giving it.

The Government have committed to collecting patient experience data for the under-16s, and research into how that can be undertaken is progressing. We are pleased to hear about that data collection, but I would like the Minister to consider how it might be improved and tell us a bit more about that.

[Mark Tami]

A few years ago, CLIC Sargent produced a report about children with cancer returning to school. That really highlighted some of the major problems and the lack of guidelines to give teachers a proper understanding. Particularly for children who are very young, it is difficult not only for the child with cancer but for the other children at the school, particularly girls who have seen their friend, who looked perfectly normal, without hair, or something like that. It is a very difficult situation. We need a proper system in place so that those children can be properly included rather than excluded.

[Thangam Debbonaire]

My hon. Friend is absolutely right. I know from my experience in my own circle exactly how that can affect not only the young person but their educators. Young people have spoken to me of really different experiences. Some have said that they had good support from their school, while others have been told, rather sadly, that they were upsetting their peers with their hairlessness. I find that really challenging, because a child or a young person with cancer is actually an opportunity for schoolteachers to work with young people on how they can not only support their friends but reduce their own risk through making healthy choices at that point.

I reiterate to all hon. Members in the House and beyond that, if they would like to get involved with the all-party group or this inquiry, they should please get in touch with me. If children, young people, parents or other family members also want their voice heard in the inquiry or in Parliament, they can contact the group or me, or their own MPs. I hope that the Government, and Parliament generally, will be willing to hear the voices, needs and experiences of children and young people with cancer, and their families. I am sure that everyone here is committed to that, but we really must actually do it.

NHS Blood Cancer Care

Mark Tami Excerpts

Wednesday 17th January 2018 Westminster Hall

[Henry Smith]

My hon. Friend anticipates some of my remarks in a few moments’ time, but he is absolutely right to use the words “hidden cancer”. Blood cancer is very different from solid tumour cancers—that is a key point and problem.

I was going to say that, from four o’clock, right hon. and hon. Members are very welcome to come along to Strangers’ Dining Room for the launch of our report.

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

I join others in praising the hon. Gentleman for securing this debate and for the report, which will be published later. I apologise for having to leave, but I am chairing the all-party stem cell group at three o’clock, so everything is coming together at the same time.

Does the hon. Gentleman agree that in this area, as in stem cell research, great progress has been made over recent years, and we do not want to lose that progress? Financial budgets are tight, and we realise that the health service faces many challenges, but we need to keep the research going. There has been great progress in this area and we must not lose it.

[Henry Smith]

The hon. Gentleman has a fine excuse for leaving the debate early, and I endorse everything he says. Future stem cell research is critical; this country has made a good start, but we cannot be complacent in any way, shape or form.

The APPG’s work focuses on blood cancer—as my hon. Friend the Member for Henley (John Howell) said, it is a hidden cancer—on the differences between blood cancer and solid tumour cancers such as breast cancer and prostate cancer, and on the ways in which patient outcomes can be improved with Government, medical professionals and local healthcare bodies working in partnership.

It is not an exaggeration to say that blood cancer is one of the great public health challenges of our time. We know it is the third biggest cancer killer in the UK, the fifth most common cancer overall, and by far the most common cancer among people under the age of 30, as we heard from an intervention earlier.

--- Later in debate ---

[Henry Smith]

I am grateful to my hon. Friend for his intervention. Yes, that is the problem. One of the issues is just that: the symptoms are all too often commonplace. Particularly at this time of year, many of us are suffering from colds, are feeling tired or have other viruses. I will come on to this later on, but there is a message to GPs that, if one or more of these symptoms is being displayed, they should consider that it could be blood cancer and carry out a relatively simple blood test to try to determine that. Far too often, blood cancer patients have to visit their GPs many times before being referred to hospital.

[Mark Tami]

My elder son developed a platelet rash, which is a common sign of the disease getting to a certain stage. There is a lot of public awareness about meningitis and what to look for, but that rash does not seem to feature in people’s minds, in terms of blood cancer. Does he agree that we probably need to do more to educate not only doctors but the general public on what to actually look for because, obviously, the earlier the diagnosis can be made, the better?

[Henry Smith]

The hon. Gentleman is entirely correct. I am sorry to hear of his family’s experience. The symptoms can often be confused with others, which is why it is important, as was said in an earlier intervention, to stress that GPs should be given the support and the backing to raise awareness of the symptoms. A simple blood test should be offered to assist with early diagnosis for people displaying one or more of these signs, and GP education and training needs to be improved to increase knowledge of blood cancer symptoms.

As was said in an earlier intervention from my hon. Friend the Member for Henley, unlike solid cancer tumours, blood cancer cannot be surgically cut out, and the experience of blood cancer patients is therefore very different from that of those with other forms of cancer. Blood cancer patients are not currently receiving the treatment and support they deserve, which is one of the key points that I hope the Minister will take from the debate.

Surgical Mesh Implants

Mark Tami Excerpts

Wednesday 18th October 2017 Westminster Hall

[Emma Hardy (Kingston upon Hull West and Hessle) (Lab)]

I beg to move,

That this House has considered the risks of surgical mesh implants.

It is an honour to serve under your chairmanship, Mr Owen. Many hon. Members present have been contacted by constituents affected by mesh surgery, which is a medical procedure used to treat incontinence and prolapse in women. The surgery, which usually takes less than half an hour, involves inserting a plastic mesh into the vagina to support the bladder, womb or bowel. It can also be used to treat rectal prolapses in both men and women. This debate is crucial, as it gives me and other colleagues the opportunity to be the voice for all those men and women who have been affected. Each individual story fits into the wider national and international narrative. This debate is our opportunity to call on the Government to do something about it and help to end the suffering of thousands of men and women in this country.

The issue of surgical mesh implants was first brought to my attention when I was visited by a constituent. She was advised in her 30s to have the mesh fitted, after suffering incontinence following the birth of twins and a hysterectomy. Its impact on her quality of life is devastating. She cannot walk very far now, she is unable to work, she is in constant pain and suffering, she is unable to partake in sports and she is having problems sleeping.

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

A constituent of mine has recently contacted me. She has just had a lengthy and painful surgery, but for years she was told that hers was an isolated case and there was no problem. This is a national scandal and needs to be treated in that way.

[Emma Hardy]

I will go on to talk about some of the problems with people recognising the symptoms later, so I thank my hon. Friend for that.

Since calling for the debate, my inbox has filled up with emails from men and women across the country telling me their horrific stories of having mesh implanted. I will read one of them, which I received just this week:

“Please help me I feel desperate. Who can I turn to to get relief from the terrible irritation and pain I am experiencing. My husband is very worried about my health mentally and bodily, because I keep telling him the quality of my life is dreadful.”

To hear the stories of the women who have suffered complications following their surgery is extremely distressing. Women tell us that they were informed that the surgery would be a quick fix for their bladder problems, that they would be able to continue to have active lifestyles and that their incontinence would be corrected after the 20-minute operation. Women in their 30s, 40s and 50s tell us that they struggle to walk, have lost their sex lives and suffer from horrendous pain day in, day out. Some even suffer from post-traumatic stress disorder following the horrific impact that the mesh has had on their quality of life.