Restoration and Renewal of the Palace of Westminster

Debate between Thangam Debbonaire and Mark Tami

Tuesday 12th July 2022 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

I welcome the opportunity to contribute to this timely debate on how we will govern the essential programme of works needed to preserve the heart of our democracy for years and generations come.

Only yesterday, the sitting of this House was suspended as water poured in. It is not the first time that business has been disrupted by a potentially unsafe working environment, and while yesterday’s sitting was suspended for only an hour, who knows how long we could be forced out next time? Electrical, plumbing or mechanical failure—there is urgent work to be done, so I am glad that we have the chance to get things moving again today.

Whether it is the weight of history on one’s shoulders as one walks through the 11th-century Westminster Hall, or the beauty of the sunlight beaming across New Palace Yard through the colonnades, the honour of working on a UNESCO world heritage site comes with a duty to be a responsible custodian. It is an honour to work in the Palace of Westminster, with all its architectural, cultural and historical significance. We also have legal and moral obligations to preserve this listed building, which around the world is a symbol of Britain and our democracy. But those who work here need to be able to carry out the functions of a modern-day Parliament, and those who visit here ought to be able to experience the Palace in all its glory, and they must be able to do so safely.

Whether they are working or visiting, everyone on the parliamentary estate must not only be but feel safe—safe from falling masonry, safe from asbestos, safe from a catastrophic failure of the building. I share the fears of my hon. Friend the Member for Rhondda (Chris Bryant) that we are heading for that catastrophic failure if we do nothing. I recognise the concerns of right hon. and hon. Friends and Members in all parts of the House that that is where we are heading.

When I say everyone, I truly mean it. The estate must also be made more accessible to people with disabilities. Not only does the lack of accessibility make visiting the estate difficult, but it disenfranchises a talented group of people from working in Parliament. Restoration and renewal could provide opportunities to improve access and step-free accessibility, as well as visitor facilities.

I think no one is likely to disagree with anything I have said, which is similar to much of what the Leader of the House said, so Members could be forgiven for wondering why we are here—why we are where we are in the restoration and renewal of the Palace. In 2018, the Commons and the Lords agreed that work was pressing and rightly concluded that it should be undertaken by a statutory sponsor body and delivery authority. Subsequently, as my amendment highlights—it pains me to have to say this, but I do have to and I notified the right hon. Gentleman that I would—the former Leader of the House of Commons, the right hon. Member for North East Somerset (Mr Rees-Mogg), worked to undermine progress and spent time wrangling with experts instead of working with them to secure the future of the building. We must follow the evidence and the advice of experts. I did think that the Government could have learnt by now that ignoring experts is just not advisable. I am afraid to say that in my view there is a political dimension. The Leader of the House asked me not to make it a party political matter. I am afraid to say that there is a huge aspect that is. It is on certain members of the Government that we are here. The right hon. Member for North East Somerset just kept changing the goal posts. I have seen that happen. That is typical of the whole Government.

However, today’s motion, much as I might regret that we are here, is purely about the governance structure of the works. As shadow Leader and therefore member of the House of Commons Commission, I was part of the Joint Commission that took this decision, as the right hon. Gentleman said. I will support the motion. I do so not because I am happy with how we got here—I am very much not—but because it seems to me that we are running out of other options. I do not want to undermine the skill and undoubted dedication of the people involved in the Sponsor Body, but for whatever reason—there is a range of reasons—confidence had been lost over emerging costs and so on. The Independent Expert Panel reviewed the situation and has concluded that the current model is unlikely to be viable.

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

My hon. Friend talks about costs and we have heard about spiralling costs. The Sponsor Body has been honest about what the costs are. One of the biggest problems in this place is that we come up with figures—the Queen Elizabeth Tower being a classic example—that are totally unrealistic. We have to be honest that this project will cost a lot of money.

[Thangam Debbonaire]

My right hon. Friend is exactly right. We do not have to be expert builders to see that this is going to cost money and it is going to take time. I see no alternative to both Houses having to move out for a period of time, as yet undetermined.

I also say in response to my right hon. Friend that this shows the critical role of the Commons Finance Committee, the Parliamentary Works Estimates Commission, chaired so ably by my right hon. Friend the Member for Newcastle upon Tyne East (Mr Brown), and the Public Accounts Committee, which has done such excellent work. Members of the PAC are here today and are very knowledgeable and skilled at exactly that sort of line by line scrutiny. We would need that whoever was commissioning the works—whether it was the Sponsor Body, and both Committees have paid close attention to the current structure, or any future structure.

Restoration and Renewal of the Palace of Westminster

Debate between Thangam Debbonaire and Mark Tami

Thursday 20th May 2021 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

Many of us, and I hope all of us, love this place. I share that love, obviously, with the Leader of the House—this place, its history, its architecture and what it means to be working in the home of our democracy, one of our greatest traditions and most successful exports. Today, we get our first chance to debate the restoration and renewal of the Palace since a major review recommended that the full decant—moving everybody off the estate for a short period—is required. We will debate whether that is short or long enough, but it is indeed required—for cost as well as for safety and effectiveness.

As the right hon. Gentleman said, this is a place of work, but it is a place of work in which we are the custodians of a world heritage site, a world heritage site that has seeping sewage, asbestos, and pipes and wires going who knows where, doing who knows what, and where there is flood and fire risk. That needs fixing urgently, and we can no longer rely on luck. The public care deeply about this place. The right hon. Gentleman is right to mention our accountability to the taxpayers; they want us to spend the money wisely, and they deserve to have this monument to democracy preserved as a place of business in a way that they may continue to be part of, scrutinising our proceedings in this place safely and accessibly.

The House of Commons Commission, before I became a member of it, asked the sponsor body to investigate works for “a continued presence” on the estate. However, the review has already recommended that the best and most cost-effective thing is to continue with a full decant. We cannot carry on like this, endlessly going backwards and forwards, with debates and reviews, endlessly revisiting decisions that have been taken. I declare right now, if it is not already obvious, that I am firmly in the camp that many MPs, staff, trade unions and specialists are in, which is the “let’s get on with it” camp.

I know what it is like—I understand right hon. and hon. Members who worry about missing this place. I know what it is like to miss it and, like all of us, at some point to wonder whether we will even return to it after an election. We all come to this place knowing that we could leave at short notice, and we all want to make the most of it while we are here. Only those with a heart of stone could fail to be moved by the magnificence of Westminster Hall—a millennium of history, a cathedral to democratic representation and civic engagement, from the throwing of ordure in the civil war to, yes, the gift shop and caff. There is, too, the wonderful art of the “New Dawn” stained glass, celebrating women’s suffrage. I get that people are in love with this building—I am, too.

I will never forget my first experience of this Palace, as a young campaigner wanting to change the law on domestic violence, sitting right up there in the visitors’ Gallery till the early hours of the morning, watching the debate on a law that I had helped to shape and hearing a Labour Front Bencher—from this Dispatch Box—propose amendments that I had campaigned and provided the evidence for. I felt in awe of what happens when democratically elected representatives—not just the campaigners—are convinced of an argument sufficiently to change the law of the land in ways that benefit millions of people.

After being taken for tea in what I now realise must have been the cafeteria, the late noble Lord Russell, with whom we had been working, took my colleague and me back through the Palace to his car to give us a lift to the station. As we turned a corner, I heard what I still swear was Shirley Bassey singing. I cannot prove that but, if any hon. Members were here in 1996, on Third Reading of the Family Law Act 1996, I will be grateful if they could not disabuse me of that special memory and tell me that, actually, it was they who were singing “Goldfinger” at 3 o’clock in the morning. My heart stopped as I saw for the first time the Gothic temple that is Central Lobby and heard that voice.

I never tire of skipping up the majestic staircase from Members’ Cloakroom to Members’ Lobby, thinking of Members in times past who had to do their casework on their briefcases at one of the side seats. The Library is where I have done some of my best work for my constituents, researching their problems, finding solutions and, of course, gazing at the river outside. Make the most of it. Enjoy the Library, make friends with the Members’ staircase and marvel at Westminster Hall, but please do not let us be selfish and mess this up by blocking what is needed to preserve this place as a place of democracy, either by insisting on keeping a presence—thereby introducing delays, further expense and possible risks to safety—or by endlessly delaying it. The work need doing, and doing urgently, if we are to hand over this place and its history to the next generation.

When surveyed, the British people say that they want us to look after Westminster. They support restoration and renewal. Yes, it is a tourist site. The Leader of the House is correct to say that that is not its only significance, but it matters to people so much that they care about it, even if they do not visit. We are its custodians, but the taxpayer, the British people, and their children and grand- children to come, own it. It is theirs. The right hon. Gentleman talks about Members needing to know the price tag, and I completely agree. On behalf our constituents, we have to know that price tag, but we must also know the price of not doing certain works, and of not doing them in a timely manner. In my experience, the price of such things does not tend to go down by delay, and we must understand those counterfactuals.

I understand from the Sponsor Body that we will have clearer information by September and October, but we can already assess some of that from the assessments made so far, and from the evidence of our own eyes, ears and noses. There is leaking sewage. Who here in the summer of 2019 could forget that delicate scent, as they walked down the corridor to the Library? There are wires and plumbing that nobody knows the function of. There is asbestos, flooding, fires—please let us not say, “Well, we’ve managed to avoid disaster so far.” We have been a whisker away too many times, and eventually our luck will run out.

As hon. Members may—or may not—know, in 2016 the Joint Committee recommended a full decant as the safest, quickest, and most cost-effective way of fixing all that. Yes, we have learned a lot in the past year, including that we can be swift enough at moving to different arrangements, and then moving back. In 2018, that decant was endorsed in the Joint Committee’s full report, which also made the case for the Sponsor Body to act as client on our behalf—quite right too; politicians interfering as clients can be incredibly unhelpful—and the Delivery Authority to carry out the work.

Also in 2018, this House rejected the options of a rolling programme or partial decant. We voted for that. We made our views known, and in 2019 we voted for the Parliamentary Buildings (Restoration and Renewal) Act 2019. That Act established the Sponsor Body and Delivery Authority, which came into existence last year. The Sponsor Body was asked to review the full decant, and consider the potential for continued presence in this House throughout the works. It published its recommendations recently, and it strongly recommended that we continue with a full decant on the grounds of value for money, safety, and speed.

If we attempt to maintain a continued presence in this building while building works go on around us, I invite all hon. Members to consider what that would be like. Will the right hon. Gentleman really tell the builders to keep the noise down? If he were to get builders into his own home, and commission them to work on every single part of it, sorting out sewers, wiring, lighting, and removing dangerous materials, would he tell them that he also wants to continue living in the middle of it? What contractor would take on that job?

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

Does my hon. Friend agree that experience suggests that what people say they are prepared to put up with and what they will actually put up with are two very different things?

[Thangam Debbonaire]

Yes, I could not put it better myself. It would be interesting to know whether the Leader of the House intends to come in here in a high-vis jacket and a hard hat. Will he expect his staff to do the same? He said that we need to maintain our work without being unduly hindered, but we would be hindered on a building site.

Today is Global Accessibility Awareness Day—surely a day to take stock and to reflect on what that means for restoration and renewal. If any hon. Members have accompanied a constituent in a wheelchair around this place, they will have experienced, as I have, the acute, painful embarrassment of realising that the democracy we prize is on show for them only via a very awkward, pre-booked route, if that.

If Members have been here with partially sighted constituents, they may have noticed poor lighting and hidden hazards around the building. I am grateful to the right hon. Gentleman for recognising my commitment to autism awareness, which is at least in part inspired by our much missed colleague, Cheryl Gillan—surely no Member here has not been on her training course—and any Member aware of that issue will know what a challenge this place is for many autistic people, and that making it good for autistic people, and for those with disabilities, makes it better for us all.

Disabled people make up 10% of the population—our voters. They have a right to be here. They have a right to scrutinise us. They have a right to be unimpeded witnesses to democracy. Are we really saying that they should not have that?

Our staff and the thousands of other staff who work on the parliamentary estate are dedicated public servants. They are patriots; they love this country and the democratic institution of Parliament. They come to this place each day to serve it and the people of this country. They deserve our gratitude, and like so many public servants, they deserve a pay rise, especially those who kept coming into the building throughout the pandemic, although that is not the subject of the debate. They surely deserve safe working conditions.

A full decant will ensure that staff have the safest possible conditions in which to work while the works are done and when they are over. Remaining on the estate will mean that those who are required to be here—although that may be a smaller group than once thought, some will be—will not have safe working conditions while that work is going on. It will put them in an intolerable position. It will mean delays. It will mean risks. It will mean that those staff required to be on the estate will have to tolerate all of that.

Many of those staff will outlast many of us, but they will not have had a say or a vote. They may have been consulted, but that is not the same as what we have. We have decision-making powers that we need to take seriously on behalf of our staff, parliamentary staff and our constituents. We have had our say, we have taken a vote and we need to honour that commitment. I invite the right hon. Gentleman to imagine himself saying to the Doorkeepers, cleaners and Clerks that some of them will be required to work on a building site, which will remain a fire risk and where asbestos is being removed. I wonder if he will ask his own staff to do that.

Please let us get on with this. The right hon. Gentleman mentions the value of quiet words with Ministers in corridors. He must know that other corridors exist. Ears of Ministers can be bent in corridors far and wide. Some of us may not be MPs by the time the work is done—if we get a move on, some of us might be—but it is not about us. It is about the British people, their love of democracy and the rule of law and their right of safe access to bear witness to the lawmaking done in their name. It is about making sure that our staff and the entire parliamentary staff have a safe place to work as soon as possible, without working in risky situations in between. It is about the public of the future. If we mess this up and it ends up costing us more through delay and removing essential parts of the works, they will rightly blame us for putting off what should not have been put off, for fudging what should have been done with clarity and for failing to avert a disaster that could and should have been avoided.

For goodness’ sake, let us heed the assessments of the experts, let us allow the Sponsor Body to get on with creating the detailed plans for the outline business case and costing, and let us commission the Delivery Authority as soon as we have those agreed plans. Politicians do not make good project managers for things like this. That is why we voted for the Sponsor Body. We interfere beyond our skills, we change our minds, we have to think about elections. We are not the experts; we are the custodians, and now that we have been given the information, we need to get a move on. Those who come after us will not thank us if we duck it, but they may just recognise that we were the parliamentary generation that put first the British public and our love of history and democracy and got this done.

--- Later in debate ---

[Mark Tami]

I thank my hon. Friend for the very kind words she said about me earlier. On the point she is making, I am sure the Leader of the House agrees, because he was also on the Joint Committee, and we spent months—probably more than a year—looking at every one of the options, including using the House of Lords. On the surface it seems quite a sensible case of just moving down there, but as my hon. Friend rightly says this is one building and one set of services. It would be incredibly expensive and difficult to try to create new services, and we would still be working in a building site, so it just would not work.

[Thangam Debbonaire]

I thank my right hon. Friend for that detailed and informed view.

It is also worth reminding Members—and I say this respectfully to newer Members—of the awful day when we were locked in here because of the terrible murder of PC Keith Palmer. That cannot have failed to have alerted everybody in this place to security risks that we all would really rather we did not have. We have to remain within a secure perimeter, and I want to take seriously the advice that we have had from security specialists who say that staying within the northern estate is vital if we are to maintain security. Again, I have to say that it is not about us; it is about our staff and the public.

I have heard mention of Portcullis House; I walked across Portcullis House atrium yesterday and counted not one, not two, but three buckets collecting water from a leaky roof, so we are going to have to do some work if we think we are going to decant into Portcullis House. That is also a cautionary tale of what happens when we do not keep up with the maintenance.

I say to all right hon. and hon. Members, whether new or long-standing, that if they have not—as I have not yet, but I am booked to—taken the tour of horror, which I am told is really quite the horrifying tour, please will they do so? I think it will help those who have said that they do not how to explain it to their constituents. I completely get that, because to begin with I was not sure how, but once I had seen some of the pictures and heard some of the tales—I am about to go and see for myself—I finally understood how to talk to my constituents, because my constituents own this place, as do the constituents of other Members. That is why we need to stop the delays, recognise that the costs of delay are high and realise that a partial decant is in and of itself both a delay and a cost.

We need to recognise that the specialness of this place is worth preserving. This place is worth modernising and enhancing. Debate itself can take place anywhere that there are two politicians of different parties in a room—and even more so if they are of the same party. That debate can take place anywhere, and we now know that we can also vote in really quite constrained circumstances. It is not ideal, but it will do us until we can get back in here, fully modernised and fully safe.

Cancer Treatment: Psychological Support

Debate between Thangam Debbonaire and Mark Tami

Thursday 22nd November 2018 Commons Chamber

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

I am grateful to be granted this debate on psychological support after cancer treatment. I recognise that there will probably be fewer Members here than there have been in the last few hours, but I thank anyone who stays to hear what I have to say.

When we talk about cancer, the conversation often starts with survival. Overall, survival has doubled in the last 40 years in the UK, but we lag behind the best in Europe, and survival rates for certain cancers—such as lung, brain and pancreatic cancer—continue to be extremely low. That means there is, rightly, a drive towards earlier diagnosis and access to new and innovative treatments. However, for most patients, just living is not enough. They want to live well, and that is why we must do more to ensure that patients receive the best possible psychological support after cancer treatment.

It goes without saying that cancer can take a huge emotional toll on patients and those close to them, right from the moment of diagnosis. Less well understood are the consequences of cancer treatment, which can affect patients’ lives on a daily basis and leave them needing support for many years afterwards. No group illustrates that better than stem cell transplant patients.

Every year in the UK, around 2,000 blood cancer patients need a stem cell transplant from a donor to save their life. It is usually their last hope. One third of patients will be lucky to find a matching donor in their families, but the remaining two thirds of patients will require an unrelated donor. The search for a donor can be extremely stressful. Despite the fact that there are more than 1.4 million incredible individuals on the UK stem cell donor register, there are still patients who miss out on the life-saving transplant they need because either no donor is available or a donor cannot be found early enough.

My experience with my son was that we were very fortunate to find a donor. That donor then failed his medical, which was a traumatic experience for the family. Not only were we concerned about what the problem was for the donor, but we did not know whether the donor would return to fulfil that pledge. We will be eternally grateful that he did.

Even when a patient does find a match, this is not the end of their journey. Tellingly, the day of the stem cell transplant is commonly referred to as day zero. First, the patient must spend a number of weeks in hospital isolation to protect them from infection. This alone can be a very difficult experience, with patients often feeling very cut off from the outside world. Things such as patchy wi-fi, poor facilities and rooms without windows do not exactly help with this experience. Hopefully, the patient then begins their recovery, which brings with it entirely new physical, emotional and practical challenges. In fact, of all cancer treatments, stem cell transplant patients experience some of the most severe long-term effects, and it is for that reason that they are often described as patients for life.

To give hon. Members some idea of what it can be like for those living with the long-term effects, approximately half will suffer from graft versus host disease, which is when their new immune system attacks their own body. I can certainly say that this is not a particularly pleasant experience, and in the worst cases it can actually kill the patient as well. Patients can also experience infertility, premature menopause, sexual dysfunction, fatigue and problems with their eyes, bones, teeth, joints and muscles, and they are at higher risk of infections and secondary cancers. In addition, it is not unusual for patients to be left with a range of psychological effects, including depression and post-traumatic stress disorder. All of this can have an impact on patients’ ability to study and work, and with that can come financial issues and even a loss of their identity. It can be completely and utterly overwhelming.

With all this in mind, it is perhaps not surprising that in response to a survey of more than 300 stem cell transplant patients conducted by Anthony Nolan, the UK’s stem cell transplant charity, nearly half—47%—said that they needed emotional and psychological support, such as counselling or group therapy. It is surprising and even shocking that only half—54%—actually received it.

Let us take some individual cases. Joanna received a stem cell transplant in 2016 to treat acute myeloid leukaemia. It saved her life, but when she got home to her family, she could not get off the sofa or out of bed. It was the worst she had felt since the actual diagnosis. Her daughter was only a teenager at the time, and the caring role of mother to child had to be reversed. In Joanna’s own words:

“I think my lowest emotional time was after transplant. I questioned why I’d gone through this experience and just couldn’t see an end in those first three to four months… I wish there had been more psychological support for me and my family—even though staff tried their best, when I really needed help, it just wasn’t there.”

Joanna’s story is not unique.

Ruth, a teacher from Yorkshire, also received a stem cell transplant in 2016. In the two years since, she has experienced many ups and downs, and she is still dealing with chronic graft versus host disease. For her, this means her eyes are constantly dry, she cannot perform fine motor skills too well and her feet are in constant pain because of nerve damage. Ruth says:

“The biggest downside of my whole transplant experience has been the complete lack of support since leaving hospital. It felt like I was on my own—my GP has offered me nothing. I’m on the waiting list for a counsellor, but it’s very long… I’m surprised you’re not referred to a counsellor as soon as you’re diagnosed.”

As well as those patients who have received transplant, the charity Macmillan has provided me with some other brief personal stories. Let us take Frances, who finished treatment for Hodgkin’s lymphoma five years ago. She says:

“Emotionally, in the first year after treatment I think I was shell-shocked because you’re trying to catch up with everything that has happened to your body. You feel like you’re a failure and you’ve failed to bounce back in the way you think you should have done.”

Ciara, who finished treatment in 2016, says:

“The fear of cancer never leaves you but I’m trying now to think, if it comes back, it comes back. I can’t live under that shadow. But it is so difficult to mentally recover.”

Finally, Chris, who finished his treatment for head and neck cancer in 2016 stated:

“People say to me, ‘I bet you wake up every morning feeling glad to be alive.’ You know, it can’t be further from the truth.”

The stories from Joanna, Ruth, Frances, Ciara and Chris affect all cancer patients—they cover everybody.

So what do we need to do? First, psychological support is for everyone, not just those with diagnosed mental health conditions. Secondly, the families of patients should also be offered psychological support, and thirdly, it seems that patients and their families are not getting the psychological support they need. Let me address those points in turn.

First, psychological support is for everyone, not just those with diagnosed mental health conditions such as depression or post-traumatic stress disorder. That includes patients who are feeling anxious, worried or frightened, and those who are having trouble adjusting to their “new normal”. The fear of cancer returning can be particularly difficult to manage. For example, some blood cancers relapse, which can be a common occurrence. Even if someone is doing physically well, that sense of dread never goes away for them or their family members.

Because of patients’ varied needs, psychological support can take many forms. Clinical psychologists and others working in improving access to psychological therapies services are able to help those with the most complex needs. Clinical nurse specialists, who we know are hugely valued by patients, can enhance overall wellbeing by providing general emotional support based on skilled communication and effective provision of information. The third sector, meanwhile, provides a wide range of services, including helplines, online forums and peer support. There is no silver bullet, however, and many different actors have a role to play.

Secondly, patients’ families should be offered psychological support because they too feel the consequences of cancer treatment. If someone is acting as their loved one’s carer, that can affect their relationship and ability to go about their daily life. They might have suddenly become the family’s main breadwinner, which could be a source of enormous stress. Family members will often feel as if they have to put a brave face on things and somehow do not deserve help because they are not the ones who are ill. In reality, however, patients regularly say that they worry more about their family than themselves and that in turn can affect their recovery. I know from personal experience that the CLIC Sargent nurse who came to us on a weekly basis to give my son chemotherapy was somebody to talk to who understood, and that side of the process was just as important to us as the medicine being given.

Thirdly, patients and those close to them are not getting the psychological support they need. According to the most recent results from the national cancer patient experience survey, only two thirds of patients felt that they were able to discuss their fears or worries, and I hope the Minister will respond to that.

In many cases, this comes down to workforce—either not enough specialists are available who properly understand the consequences of cancer treatment, or the demands on staff time are so great that it is impossible to provide patients with adequate psychological support.

In response to a 2017 survey of GPs and nurses, 31% of respondents said that workforce pressures mean patients are not being supported to regain a good quality of life after treatment. In other cases, the right support existed but patients are not being appropriately signposted. I have heard of many patients having to be proactive and find help for themselves. Patients should certainly be empowered to take control of their own care, but I think we all agree that this should be a choice and not a necessity. They should not be let down by poor communication and co-ordination, but in many cases they are.

The Minister may refer to the recovery package in her response. It consists of four main interventions: a holistic needs assessment and care plan; a treatment summary; a cancer care review; and access to a health and wellbeing event. This can certainly help to identify patients’ psychological needs and I welcome the fact that NHS England has committed to rolling out the recovery package nationally by 2020. However, does the Minister agree that identifying patients’ needs is only one piece of the puzzle and that more needs to be done to ensure they actually receive the right psychological support?

[Thangam Debbonaire (Bristol West) (Lab)]

My hon. Friend is making an extremely moving speech. Does he agree that getting the right psychological support from the start also helps the medical treatment? For many cancer patients and their families—as he said, it is very painful for them to watch the treatment—getting psychological support helps them to be able to face going through the treatment, which can be so devastating, as I know he knows.

[Mark Tami]

That is very important. What we tend to do throughout the whole process is address the disease itself and its physical aspects, but we do not address the psychological damage and problems that can occur. My hon. Friend is absolutely right that we need to do that.

Before I close, I would just like to take a moment to talk about the specific needs of children, teenagers and young adults who have had cancer. They experience many of the same physical and psychological problems as adults, but they also face some unique challenges, such as the impact on their growth and development, education and future prospects. Earlier this year I was very pleased to be part of the inquiry into patient experience by the all-party parliamentary group on children, teenagers and young adults with cancer. I would like to put on record my thanks to my hon. Friend the Member for Bristol West (Thangam Debbonaire), who set up the group and chairs it. She is doing sterling work and I thank her for that.

When parents and young people were surveyed, 73% felt that not enough was being done to ensure access to post-treatment support. Some 26% of parents and young people identified mental and emotional help as the biggest improvement needed. As Kate Collins, chief executive of Teenage Cancer Trust, summarised:

“Young people have told us that actually the experience of being spat out at the end of treatment can be as traumatic as diagnosis, because all of a sudden you’ve been radically changed, you’ve been through this remarkable transformation experience in lots of ways, you’ve faced problems that lots of adults have not had to face…you may be clear of cancer but often young people are living with long-term effects, be they psychological or physical.”

The all-party group therefore recommended that the Department of Health and Social Care makes mental health support for children, young people and parents a key part of diagnosis, treatment, follow-up and recovery. Furthermore, NHS England should engage with children and young people with cancer to ensure that the recovery package meets that specific need. The all-party group also recommended that the Department of Health and Social Care and the Department for Education should re-examine their proposals in the mental health Green Paper and take account of the impact of a long-term physical condition on young people’s mental health.

When the Under-Secretary of State for Health and Social Care, the hon. Member for Winchester (Steve Brine) gave evidence to the all-party group, he said:

“For the 80% of children who survive, they’ve got it all ahead of them, so we have to make sure that we tool them up to live their lives.”

Can the Minster tell us what she and the Department are doing to give children, teenagers and young adults the tools they need to deal with the psychological consequences of their treatment?

CLIC Sargent’s 2017 report, “Hidden Costs”, found that 79% of young people felt that cancer had a serious impact on their emotional wellbeing, 70% experienced depression, 83% experienced loneliness, 90% experienced anxiety and 42% experienced panic attacks during their treatment. For parents, the figures are similar: more than half of parents—63%—said that they experienced depression, more than one third experienced panic attacks, and 84% experienced loneliness.

It goes without saying that surviving cancer is brilliant news. However, I urge the Minister and everyone here today to remember that although survival rates are improving, people are living with the effects, including the long-term effects, that cancer has dealt them. We must do more to ensure that patients such as Joanna, Ruth, Frances, Ciara and Chris not only live, but live well. That means taking action to improve the provision of gold-standard psychological support. Finally, I thank Anthony Nolan, CLIC Sargent, Macmillan and the Teenage Cancer Trust for their help.

Music Festivals: Drug Safety Testing

Debate between Thangam Debbonaire and Mark Tami

Friday 6th July 2018 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

I rise to speak about drug safety testing at music festivals. I start by letting all hon. and right hon. Members know that this is not a debate about legalising drugs. We could have that debate, but not today. This is about how we can put safety first, take dangerous substances out of circulation, save lives, make festivals safer and more pleasant places, and probably undermine drug dealers as well—and why would we not want to do that?

In May this year, in Bristol, the much loved annual Love Saves The Day festival came to town. It was sunny, loads of people enjoyed themselves—and nobody died. I believe that this is in part because the festival organisers worked with Avon and Somerset police and with Bristol City Council to ensure that the Loop drug safety testing project, with its trained scientists and drug counsellors, was able to operate on-site.

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

My hon. Friend made the most important point—nobody died. At so many other festivals, many young people are losing their lives.

[Thangam Debbonaire]

My hon. Friend makes exactly the point that I am coming on to. The contrast between Love Saves The Day and another festival that weekend was that nobody died in Bristol while at the other festival there was no drug safety testing, and sadly—tragically—two people did die and 15 others were hospitalised.

The Loop operates a model called MAST—multi-agency safety testing—that was developed by Dr Fiona Measham, professor of criminology at Durham University and co-director of the Loop. I pay tribute to her and to all the people who work with her, and to others who help to make this possible—as well as to Love Saves The Day, of course.

Cancer Strategy

Debate between Thangam Debbonaire and Mark Tami

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.

--- Later in debate ---

[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.

Child Cancer

Debate between Thangam Debbonaire and Mark Tami

Monday 28th November 2016 Westminster Hall

[Thangam Debbonaire (Bristol West) (Lab)]

I thank the hon. Member for Bath (Ben Howlett) for his introduction and other hon. Members for their personal and heartfelt speeches and interventions. In particular, I thank the parents of Poppy-Mai, who started the petition and so brought this matter to the attention of the House.

My five asks are clear. First, more units such as the specialist one in Bristol for teenagers and young adults with cancer are needed. The units need to be carefully commissioned so that the maximum amount of specialist clinical knowledge is available to the maximum number of young people.

Secondly, a clear commissioning structure for services for children, teenagers and young adults with cancer is needed, so that everyone knows where the buck stops and who is responsible. Thirdly, the benefit system needs to be adjusted, as other hon. Members have said, so that the families of children and young people are not put into awful financial difficulties such as we have heard about just at the time when they most need to concentrate on their child and nothing else.

Fourthly, Government leadership is needed—I urge the Minister to respond to matters raised by me and other Members—with commissioning guidance, clear priorities and funding for specialist services. Fifthly, the Government need to take responsibility and say how we will go about researching childhood cancers in collaboration with European Union partners after we leave it.

Earlier this year, I visited the specialist teenage and young adults unit in Bristol, accompanied by Christine from the Teenage Cancer Trust, which contributed to the cost of the unit. The unit creates and maintains an environment that provides care for the whole person, helping that young person to cope with the emotional side of their illness, as well as giving them time and space to do school work, to be with friends and family, and to just be a young person not defined by their cancer.

The decor definitely does not make the unit feel like a cancer ward. Yes, per patient, that is more expensive than adult cancer wards. Thankfully, cancer is rare in childhood and youth, but young people have very different specific needs to be met.

[Mark Tami]

As my hon. Friend is making clear, we have to have specialist centres, but we must not think that we can have them on our doorstep everywhere. That will just not happen, and it would not make sense for it to happen. If we have specialist centres, however, people will have to travel, and families need support and somewhere to stay. I put on record my support for the Ronald McDonald House Charities, which do incredible work providing parents with somewhere to stay. The actual cost burden on parents alone for what can be long treatment periods is astronomical, and a lot of people simply do not have the money.

[Thangam Debbonaire]

I, too, will be mentioning similar services later in my speech. Absolutely, the last thing parents facing such awful situations need to be worrying about is where they will stay, how they will afford it and how they will afford even to put petrol in the tank.

My nephew was diagnosed at age 12 with osteosarcoma, a very rare childhood cancer. We were all so focused on getting him and his mum, and his sisters and brothers, though that illness that the longer-term impacts felt very much secondary. Specialist units such as the one in Bristol help the family as well as the young person with cancer to see the whole of life as important, to think about the longer-term implications and to prepare for them. I pay very personal tribute to the teenage and young adults cancer unit in Bristol for its work and to the Teenage Cancer Trust for its support of the unit.

As my hon. Friend said, getting the number of units right is difficult. Given the thankfully low numbers of childhood cancer victims, if the units are to be truly specialist, it will not be an easy matrix. To ensure an appropriate number of specialist units, the Government need to be clear with appropriate commissioning guidance and take responsibility for following it through.

In October when I asked the Department of Health in question 50795 what proportion of specialist units were funded by charitable trusts, the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), replied:

“This information is not held centrally.”

For me, that is simply not good enough. Yes, commissioning is done locally, and increasingly commissioning groups and trusts are collaborating, but Government leadership is necessary to work out how many units are needed and how to fund them. Will the Minister commit to gathering that information centrally in order to estimate properly the funding needed to commission appropriately throughout the country? Will she further commit to consulting on and publishing clear commissioning guidance so that the responsibility for commissioning and funding specialist treatment centres for children, young people and young adults is clearly identified, and so that a structure for commissioning across health regions is clear?

On the future of research into childhood cancers, there is clear potential for harm when the UK leaves the EU—I say “potential”, because any such harm can be mitigated, but the Government need to act urgently to address it. Earlier this month in answer to my question 50081 about research, the Minister for Universities, Science, Research and Innovation gave welcome assurances about funding. I welcome those assurances, but he did not mention research cohorts. Thankfully, childhood cancer is rare, so it is vital for UK researchers to be able to collaborate fully with their EU counterparts so that they can carry out clinically adequate research with a sufficiently large enough group of children and young people to provide clinically useful and secure results. Yes, funding is vital and I am grateful to him for those assurances, but it is not enough. My next question to the Minister present is this: will she commit to discussing that with her colleagues in the Department for Exiting the European Union, along with research about other rare childhood cancers?

As my hon. Friend the Member for Alyn and Deeside (Mark Tami) mentioned, children and young people with cancer and their parents often need to travel long distances for specialist treatment. That might always be unavoidable and, in any case, there are other huge financial costs for parents. In September, I was proud to chair the parliamentary launch of a report by CLIC Sargent, which does so much wonderful work to support children and families affected by childhood cancer. The report shows that the costs of cancer are not only emotional, educational and physical, but financial.

One young person at the launch spoke about how he had to prove repeatedly to the benefits agency that he had cancer and that his treatment was still not over nor his recovery complete. Another young person found that her student loan was stopped because she was deemed to be a student no longer, but her halls of residence still charged her rent. A lone parent spoke of her struggles to manage her finances while faced with losing her income from employment and the increased costs of driving her son a long distance many times each month for treatment, as well as the added costs of heating a home all day for a very sick child, which is often overlooked, and the costs of keeping clothes, bedding and house scrupulously clean, which is so important because the risk of infection is extremely high for those undergoing gruesome treatments such as chemotherapy, as other hon. Members have mentioned.

CLIC Sargent and other charities I know help with all those things and more. I have had the privilege of being shown round the CLIC Sargent house in Bristol, located a few minutes’ walk from the Bristol Royal infirmary. That house, run by a wonderful woman who knows all too well what childhood cancer means, provides a haven just when it is needed.