Childhood Cancer Outcomes

Debate between Jim Shannon and Mark Tami

Tuesday 17th October 2023 Commons Chamber

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

rose—

[Jim Shannon (Strangford) (DUP)]

rose—

Stem Cell Transplant Patients

Debate between Jim Shannon and Mark Tami

Monday 12th June 2023 Commons Chamber

[Mark Tami]

I thank my hon. Friend for making that very important point. I was talking about how much the costs were back then, but clearly people going through the process now are experiencing what we term the cost of living crisis, which is affecting everyone.

[Jim Shannon (Strangford) (DUP)]

rose—

[Mark Tami]

I see that the hon. Member—I will call him my hon. Friend—wants to intervene.

[Jim Shannon]

I congratulate the hon. Gentleman on bringing forward the debate. I spoke to him before, because I realised that he was bringing forward an issue close to my heart, not personally but for my constituents. The Anthony Nolan charity does spectacular work throughout all of the United Kingdom of Great Britain and Northern Ireland, including my constituency of Strangford.

The most recent statistics show that 70% of patients—some of them are from Strangford—have considered returning to work earlier than advised due to financial concerns, jeopardising their recovery. Does the hon. Member agree that there is an incredible delay in assessments and decisions for social security at the moment, and that if more effort were made by the Government and the Minister to ensure that they were done on a timely basis, some undue stress would be taken off people awaiting transplants? Ultimately, they would not feel that they had no choice but to go back to work when clearly they should not do so.

[Mark Tami]

I thank my hon. Friend for that point. He is entirely right. As part of the transplant process, the immune system is effectively wiped out. That is a necessary part of the treatment, but clearly it leaves the patient fairly defenceless to infections. Once the donor stem cells are given, they will slowly build up a new immune system inside their body, but that takes time—it does not happen overnight—so those patients are often very vulnerable to infections. He made the point that if they put themselves into a dangerous situation because of financial pressure, the worst could happen to them—or at the very least, they could fall back into the medical setting that they were hoping to remove themselves from.

As part of the process, patients strictly isolate themselves in a hospital room for weeks—sometimes months—on end. Even after they leave, they are often weak and, as a result of their inability to work, their household income will obviously suffer. When patients are well enough to be sent home from hospital, there is still a long, gruelling and costly recovery ahead, whether they are the main wage earner or another member of the household, because obviously everyone else has to support them, whether in a caring role or otherwise.

Domestic Abuse Bill

Debate between Jim Shannon and Mark Tami

Consideration of Lords amendments
Thursday 15th April 2021 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I want to put on the record my party’s condolences and thoughts about Dame Cheryl Gillan. I had the opportunity to speak alongside her, along with many others in this House, in many debates in the Chamber and in Westminster Hall. She had a particular interest in autism, which I have an interest in. I want to put on the record my condolences to her family, which I have conveyed by letter already.

Thank you, Madam Deputy Speaker, for giving me the opportunity to speak on this weighty, comprehensive and important issue. I begin by thanking the Government for the proposals to change the wider support for those suffering from domestic violence. I thank the Lords for their reasoned amendments, a few of which I will discuss in the short time available to me. In particular, I want to thank the Minister and the shadow Minister. The significant contributions from right hon. and hon. Members have really enhanced the debate on this Bill.

To illustrate the importance of getting this right, I wish to highlight that there are approximately 1.8 million people in Northern Ireland. In the year between October 2019 and October 2020, there were 32,000 reported incidents of domestic violence within our very small population. Of course, charities always tell us that the figure is much higher, when we consider how many incidents are unreported.

Coronavirus has affected us all over the past year and a bit. Heightened domestic abuse is another side-effect of this dreadful pandemic and the forced isolation that has come with it, so we need to get this Bill right, and that is why I am very grateful for the Lords amendments. For many victims, going to the police is the very last step in a long, harrowing journey of abuse. It is our responsibility to ensure that no one walks that journey alone.

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

Does the hon. Gentleman agree that it is important that the police look at patterns of behaviour? I have often found that they look at these as isolated incidents—whether that is stalking, or whatever it is—rather than an actual pattern of behaviour?

[Jim Shannon]

The right hon. Gentleman is absolutely right. The shadow Minister, the hon. Member for Birmingham, Yardley (Jess Phillips), made that point very well in her introduction. If there is a pattern—other Members across the Chamber have referred to this—there is a need for the police to be aware of that.

In reading through the Lords amendments, I noted that Lords amendment 39, after clause 72, highlighted that there must a prohibition on charging for the provision of medical evidence of domestic abuse. This should go unsaid, yet I understand the rationale behind highlighting this.

That brought my mind to the fact that the Bar Council had asked for the financial income limit as it pertains to legal aid to be withdrawn. Many Members have referred to legal aid. Legal aid expenditure on domestic violence cases has been cut by 41% in real terms, and has been declining ever since, with a 51% reduction. At the same time, I believe sincerely that this decline in funding cannot be attributed to a reduction in need, because the figures tell us something different. They tell us that there has been a 49% increase in domestic violence cases in the courts since 2012. Again, the situation since the start of the pandemic indicates that cases and reporting are likely to continue to increase even more so, meaning that we can expect a continued increase in the number of cases in court, with the UN—we cannot ignore it—calling domestic violence a “shadow pandemic”. That is a massive issue, which we must try to look at. Money is often controlled by the abuser. In terms of legal aid, it is clear that the victim must never be put in a position whereby they halt proceedings due to the lack of legal aid support. Legal aid is therefore a really important issue to those who are subjected to domestic violence.

I welcome many of the amendments that have come forward, such as Lords amendment 6 to amend clause 33, highlighting the need for domestic abuse protection orders to include a requirement not to

“come within a specified distance of any other specified premises”—

such as workplaces or, for example, even places of worship. Those are ones that I would be aware of and that change in the law is so important. In my constituency, over the years, I have honestly been heartbroken and righteously angry about the tales of intimidation from an abuser towards a victim in safe places, such as their local church and their workplace, and it is past time that churches and other places can legally prevent access in an attempt to intimidate. This provision is therefore necessary and I trust that it will soon become law.

Another issue that has come to me in my constituency office relates to the technological age that we live in. It is always great to be able see photos of my grandchildren—I have two grandchildren who have been born in lockdown, and I have seen one because we were able to have our cluster at Christmas. I have not seen the other one up close, except in a video—one thing I do know is that he has red hair; I am not quite sure where the red hair came from, as it is certainly not from my side of the family, but obviously there is some a few generations back somewhere—but I look forward very much to that time. However, I am desperately aware that there is a very real, very difficult and very disturbing downside of the no-hassle digital picture age, and that relates to revenge porn using very personal images. Every Member has spoken about that and I will, too, because I feel really annoyed and angry about it.

I have watched as my office staff have consoled young ladies whose ex-partners have threatened to disclose images, and their devastation is so very real and heartbreaking. The staff have a sadness in their faces as they know that unless an image is posted, very little can be done under harassment or other general laws, yet the distress is real; it is palpable—it could touch you and cut you. This behaviour is clearly another example of threat and control. It is right and proper that it is addressed in the Bill and I wholeheartedly support Lords amendment 35, which seeks to clarify that it is not okay to threaten the release of these images—by anyone, male or female. Sometimes we must remind ourselves that the release of any personal image without consent can be emotionally damaging for any person, no matter how seemingly confident they may be. Personal images are just that—intensely personal. I welcome the amendment’s reaffirming that no one can have the right to release an image of a personal nature without consent.

To conclude—I said I would be quick, Madam Deputy Speaker—it is difficult for one Bill to cover all the facets of the support and help that is needed for domestic abuse victims, but we must seek to get this right and ensure that the law supports every victim and does not further traumatise. I thank the Minister and the Government for their sterling efforts to deliver a Domestic Abuse Bill that really can protect.

Children with Life-limiting Conditions

Debate between Jim Shannon and Mark Tami

Tuesday 29th January 2019 Westminster Hall

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

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

[Jim Shannon]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[Mark Tami]

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

[Jim Shannon]

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

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

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

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

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

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

Stem Cell Transplants

Debate between Jim Shannon and Mark Tami

Tuesday 24th January 2017 Commons Chamber

[Mark Tami]

I totally agree with the hon. Lady. We are talking about a very small number of people but, for them, it is their only chance after they relapse.

Despite everything we know, NHS England confirmed in December 2016 that it would not routinely fund second stem cell transplants. In effect, it decided that these people’s lives were not worth the money.

One of those people is Sasha Jones, a 34-year-old mother of two from Greenwich, who, in March 2015, was given the devastating news that she had acute myeloid leukaemia, a type of blood cancer. Over the next few months, she had rounds of chemotherapy and her first stem cell transplant. It was not without its difficulties, but by the beginning of October 2015, she was well enough to go home to her husband, Lloyd, and their two young children, aged just 13 and eight at the time. In August 2016, she was told that the blood cancer had come back, but by this time NHS England had decided that it would not routinely commission second transplants for patients in Sasha’s situation, despite such treatment being recommended by her doctor.

Doctors tried to get Sasha a second transplant by going through the individual funding request route, which allows NHS England to fund treatment for patients on an individual basis if they are deemed to be an exceptional case, but what is an exceptional case, how is that decided and, importantly, how long does it take to be considered? It has to be done at a time when the family and patient are dealing with the devastating news that their illness has not been cured but has come back, so they have to cope with that while also going through this process.

Sasha’s request was turned down and she has effectively been left with no alternative treatment. She now has two choices: find the money to pay for the second transplant herself; or accept that she might have only months to live and that her two young children could be left to grow up without their mother. I think it is fair to say that Sasha and her friends and family are desperate. A petition that they started to call for a reversal of NHS England’s decision not to fund second stem cell transplants now has more than 165,000 signatures, while a fund that was set up to raise the money that Sasha would need to pay for a second transplant currently stands at £90,000, but that is still not enough. Can hon. Members imagine the enormous pressure on Sasha and her family? In Sasha’s own words, she has been “condemned to death”. She says:

“In having been denied access to a second stem cell transplant, it has been decided that ‘I’m not worthy of a second chance a life; my children do not need a mother, my husband will become a widower’.”

It is a scandal that someone like Sasha should find herself in this situation—denied life-saving treatment that other patients have had in the past because NHS England says it is neither affordable nor justifiable.

[Jim Shannon (Strangford) (DUP)]

I apologise for not being here on the dot for the start of the debate. The hon. Gentleman is outlining the case for second transplants. Does he agree with the analysis from Anthony Nolan that shows that the cost of caring for someone who is refused a transplant is upwards of £130,000, while a transplant would cost only £120,000 and might save a life and prevent devastation being caused to a family? Does he agree that there is a financial as well as a moral incentive?

[Mark Tami]

Yes, I do. This is to do with how we assess the cost of treatment. I fully accept that the up-front cost of the transplant is a lot of money, but if that works the longer-term cost is not so great. However, we seem willing and able to fund drugs that might not cure people or extend their lives by very much, although the cost of them, when added up, might be more than the transplant. It is not right that we are saying to these people, “No, we’re not going to fund a second transplant”.

Sasha’s case is not unique, and there will be many more like hers if we do not change our position. Will the Minister please respond directly regarding Sasha’s case and those of others in the same situation? In the months and years ahead, there will be other people in this situation, and their voices need to be heard.

Fixed Odds Betting Terminals

Debate between Jim Shannon and Mark Tami

Tuesday 26th April 2016 Westminster Hall

[Jim Shannon]

As always, I thank the hon. Lady for her intervention—she is an hon. Friend, too. She speaks with heart and compassion, and she speaks for me as much as everyone else here.

Our Prime Minister told Parliament more than 12 months ago that FOBTs are a serious issue, and that he would act as soon as there was more evidence. Since then, two tragic cases of suicide have been linked to the machines, and there are numerous reports of the terrible impact they are having on the most vulnerable, but the Government are yet to act. The Minister is here to respond to the debate, and we look forward to hearing the ideas that he will put forward in response to what we have to say. There is no place for £100-a-spin games on the high street in bookmakers that have little or no supervision. There is a simple answer to protect the vulnerable, as the hon. Lady said, and that is to reduce the stake.

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

While a lot of us have worries about what is going on in betting shops, does the hon. Gentleman agree that we do not know enough about the people who gamble at home on their phones and on the internet? There is no control over that at all, and they are being equally affected.

[Jim Shannon]

The hon. Gentleman is absolutely right. We have many concerns. Today’s debate is fixed primarily on the fixed odds betting terminals, but I accept that control is needed elsewhere.

The lack of regulation of FOBTs has meant that they have clustered in areas of high social deprivation. They can prey on the young and vulnerable. There is strong evidence that the high stakes on FOBTs in the low-supervision environment of a bookmaker have led to increased problem gambling. Recent Responsible Gambling Trust research on FOBTs showed that 37% of players exhibited signs of problematic gambling. At stakes of more than £13.40 a spin, that rose to 80% of players exhibiting problem gambling behaviour. One third of problem gamblers calling the national problem gambling helpline cited FOBTs as their issue. Let us be clear that the debate is about fixed odds betting terminals and the blight they cause on society.