National Maternity and Neonatal Investigation

Catherine McKinnell Excerpts

Tuesday 30th June 2026 Commons Chamber

[James Murray]

I thank the hon. Lady for welcoming the additional 1,000 positions to make sure that newly qualified midwives can find a way to contribute to the NHS. She raises staffing and training, as other Members have rightly done. The taskforce will consider questions about ensuring that we have the right staffing in place, with the right training to support it, ahead of the publication of the national action plan at the end of the year.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

This report is welcome, but that does not make its existence any less tragic. Far too many mothers and babies have been failed, including mothers like my constituent Amie, who late last year was turned away repeatedly, despite reporting reduced movements. Her baby Seren was born stillborn. The NHS spends almost as much on clinical negligence payouts as it does on maternity care itself. Can the Secretary of State update us on progress made following the Lock review into clinical negligence? It is about time we started investing in better care, rather than paying out for failure.

[James Murray]

I was incredibly sorry to hear about my hon. Friend’s constituent Amie, who was turned away repeatedly from services despite asking for their help. We have heard that story far too many times as part of the work that Baroness Amos and Donna Ockenden have done and from our constituents. My hon. Friend is right to point out the amount of money that goes on clinical negligence, rather than making sure that services are better in the first place, which would avoid the need for clinical negligence payouts. I have met David Lock KC to discuss his ongoing work on that issue, and I will be working with him closely on it in the months ahead.

Procurement of Evusheld

Catherine McKinnell Excerpts

Wednesday 12th October 2022 Westminster Hall

[Daisy Cooper]

I welcome that intervention and I do agree. I will outline all the scientific evidence that backs the decision to procure Evusheld and roll it out right now, this side of Christmas.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I congratulate the hon. Lady on securing this timely debate. I was contacted by a constituent ahead of it, who reiterated that as autumn and winter approach, we are even more vulnerable and isolated. Given what we face, I am sure the hon. Lady agrees that it is urgent for Ministers to listen to this debate and set out plans to support immunosuppressed patients and people during the difficult winter ahead.

Access to GP Services and NHS Dentistry

Catherine McKinnell Excerpts

Tuesday 21st June 2022 Commons Chamber

[Wes Streeting]

I wholeheartedly agree with the point my hon. Friend makes. It is simply not good enough for the Minister to keep on talking about what the last Labour Government did. If she does not agree with the situation described by my hon. Friend, which is happening on her watch, why does she not legislate? If she is incapable of governing, she should make way for people who can govern.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I commend my hon. Friend for the tone of the speech that he is making, because it is vital that we stand up for our NHS, which the Government are failing to do. They seem happy to let everybody be angry with their GPs and about their inability to seek the medical help they need, but very unwilling to do something about it. Is this argument not really one to be had with the Government entirely? They should be making sure that we have sufficient GPs to treat the people in this country.

[Wes Streeting]

I wholeheartedly agree with my hon. Friend; it is the trend with this Government to seek division, sow division, pass the buck, devolve the blame and not take responsibility for anything. What Opposition Members would not give for just one day of being able to govern in the interests of the people in this country! This Government want to give the appearance of being in office but not governing at all. That is what is happening on their watch. If that is not bad enough, against a difficult economic backdrop, with scarce resources, not only is the way in which they manage and govern bad for patients, but it is squandering taxpayers’ money.

Vaccination Strategy

Catherine McKinnell Excerpts

Wednesday 12th January 2022 Commons Chamber

[Maggie Throup]

I completely agree with my right hon. Friend that persuasion is the right way to go. That is why the uptake went up tremendously among care home staff and since we implemented the policy for the NHS the uptake among NHS staff has increased tremendously as well, which is really encouraging. We want it to be a positive choice, and we want people to understand that they are protecting not just themselves and their families but the patients they care for, ensuring that they are safe. Those one-on-one conversations are ongoing to ensure that people understand that, from the perspective of patient safety, this is the right choice to make.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

With rates of infection high among teenagers, many are simply unable to get double vaccinated yet as they were infected in the period when they would have been eligible and had to wait 12 weeks to get the jab. Unfortunately for families hoping to travel in half term, they cannot access a covid recovery certificate through the NHS app or through 119, despite contracting covid being the reason that they are not double vaccinated. Families are facing the prospect of cancelling their travel plans for half term, which will have an impact not only on our constituents but on the travel industry. I know that the Department is considering a solution, but will the Minister give some clarity that that will be achieved before half term, to give people the confidence to make travel plans?

[Maggie Throup]

The hon. Lady makes a very good point, and it is not the first time the issue has been raised with me. We had that situation in the run-up to Christmas, and we are obviously now in the run-up to half term and Easter as well. I assure her that measures are being considered to see how to resolve the situation.

Covid-19 Update

Catherine McKinnell Excerpts

Monday 13th December 2021 Commons Chamber

[Sajid Javid]

My hon. Friend is right to talk about the importance of increasing capacity. The pandemic has brought that acutely to the front of our minds. There has been significant investment since the pandemic started, particularly in certain types of capacity, such as intensive care units, PPE and oxygen, as well as personnel, with some 10,000 nurses and 3,000 doctors added over the last year. As a result of the omicron emergency, we are revisiting the issue of how we can further increase the temporary capacity.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

NHS data in November showed that 98% of the pregnant women in hospital with covid were unvaccinated. Pregnant women want to do the right thing to protect themselves and their babies, but there has been a lack of clarity and a lack of prioritisation for vaccines for this group of people. Will the Secretary of State set out what the Government will do to send the message loud and clear that vaccination uptake for pregnant women and their babies is a priority for the Government?

[Sajid Javid]

It absolutely is. Work on this is being led by Lucy Chappell, in particular, in my Department and the UKHSA. One of the central focuses of her work has been to encourage more pregnant women to come forward and take up the offer of the vaccine. As the hon. Lady says, sadly, when we look at the data on pregnant women who are going into hospital because of covid infections, we see that almost all of them are unvaccinated.

Giving Every Baby the Best Start in Life

Catherine McKinnell Excerpts

Tuesday 9th November 2021 Commons Chamber

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I thank the Backbench Business Committee for granting time to debate this incredibly important subject. I also commend my colleagues, the hon. Member for Richmond Park (Sarah Olney) and the right hon. Member for South Northamptonshire (Dame Andrea Leadsom), for setting out so eloquently and passionately the case for focusing on this issue. I had hoped that, as co-sponsors of the debate and co-conspirators on this issue, we would not just repeat one another’s arguments, and I believe that, without co-ordinating in any way, we will not. We agree on the problem—we agree on the challenge and the importance of this issue—but today I want to focus on the enormous challenge presented by poverty in overcoming many of these issues.

We know from international evidence that so many important life outcomes, from health to wealth and wellbeing, have their origins in early childhood, but the reality is that not all childhoods are equal. If we truly want to give every child the best start in life, we must tackle poverty and economic disadvantage. There is substantial evidence demonstrating the damaging, stigmatising and often lifelong impact of experiencing poverty in childhood. It affects cognitive skills, social and emotional development, physical health, mental health, educational outcomes, employment prospects, the likelihood of being in poverty as an adult, and life expectancy.

Recent reports have highlighted starkly that the impact of poverty begins in very early childhood, or even pre-birth. For example, last month, MBRRACE-UK— Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK—reported that

“babies born to women living in the most deprived areas are twice as likely to be stillborn, and at a 73% excess risk of neonatal death compared to babies born to women living in the least deprived areas”.

Likewise, national child mortality database research published in May found a clear link between deprivation and child death. It concluded that around 700 fewer child deaths per year—a fifth of all child deaths—might be avoided if children living in the most deprived areas had the same mortality risk as those living in the least deprived. Poverty is literally killing children.

[Wera Hobhouse]

Is the hon. Member as concerned and shocked as I am about data showing that a mother from an ethnic minority background has a much higher likelihood of experiencing complications during pregnancy or birth that result in their baby being either stillborn or born with a disability? Does she agree that we need absolutely to focus on such discrimination and disadvantages?

[Catherine McKinnell]

Yes, I absolutely agree with the hon. Lady. As the Chair of the Petitions Committee, I can say we received petitions on that issue and debated it in Parliament. We have been given some assurances from the Government, but it is imperative that all of us in this House ensure an improvement in both the statistics and the reality for those who experience it.

It is well established in education research that on average the longer a child has been disadvantaged the worse their performance will be at school, particularly in key stage 4 assessments. Even where children from more deprived backgrounds do achieve the same results as their better-off peers, they are still likely to have lower lifetime earnings. How unbelievably disheartening is that?

Sadly, child poverty is getting worse. Government statistics on households below average income published this spring show just how many families were struggling before covid-19. In 2020, 200,000 more children were pushed into poverty compared to the previous year, using the measure of relative poverty after housing costs. That means 4.3 million children living in poverty: real children living in real hardship. I know the Government do not readily accept the concept of relative poverty, but Ministers should listen to the recommendation of the Work and Pensions Committee to end the sole focus on absolute poverty and look at broader measures. After all, if the Government are committed to levelling up, improving the position of a child in Newcastle relative to a child in Middlesex is surely more relevant to comparing a child in Newcastle today with a child in Newcastle 11 years ago.

Even if we use only the Government’s preferred absolute poverty measure, the proportion of children living in poverty rose by an average of four percentage points in every north-east local authority area between 2014-15 and 2019-20, while the number of children living in absolute poverty across the north-east rose by more than 21,000 during that period. The latter point is particularly concerning as absolute poverty is a measure that has always tended to naturally improve over time as living standards rise, but in the north-east it is going in the opposite direction. As troubling as the pre-pandemic figures are, none of that should come as a surprise given the direction of Government policy over the last 10 years. Indeed, the country went into the pandemic expecting to spend £36 billion less on social security because of Government welfare policy. That has to come from somewhere, and it is coming from the poorest pockets and the mouths of children.

Just as Government action can lead to increases in child poverty, it can bring them down too. We have seen it before, especially under the previous Labour Government. What we need is a cross-governmental strategy for tackling child poverty, something groups such as the North East Child Poverty Commission and the Child Poverty Action Group have consistently called for. It needs to go a lot further than anything we have heard from the Government to date. It should include a welfare system that prevents and reduces poverty, giving all families a dignified safety net when they are going through tough times. It should tackle unemployment and low-paid insecure work, the kind of work that means most children living in poverty are now in working families. We need concerted action to support families with the cost of major outgoings: energy, housing and childcare.

All those things were problems pre-pandemic and they still need to be addressed, but covid-19 and the lockdowns of the last year-and-a-half have brought additional challenges for parents and young children. For the past 18 months, the Petitions Committee, which I Chair, has investigated the pandemic’s impact on new parents and children, and expressed its deep concerns that it is being overlooked by the Government. Our first report in July 2020 highlighted the need for urgent catch-up investment to help new parents access support services disrupted by the pandemic, and to do more to ensure employers meet their health and safety duties towards pregnant women. Unfortunately, the Government rejected almost all our recommendations, saying that support was “sufficiently generous” for

“the vast majority of parents”.

That, however, did not match up with all the evidence we heard from new parents about their struggles. We heard that crucial support for children’s wellbeing and development was being missed, that there were concerns about employers not meeting their health and safety duties towards pregnant women, and about additional difficulties in accessing childcare. I fear that the Government know that the impacts of all of that are long term, and that by the time the impacts of their failure to invest will be seen, they may be well gone, or at least their failure forgotten.

This year the Committee decided to revisit those issues with a follow-up report, but unfortunately it is already clear that we are seeing the impact of the Government’s lack of action in this area, including: children coming into early years classes behind in their social development; increasing rates of poor mental health among new mothers; and childcare providers going out of business. The Committee found that new and expectant parents’ access to support has remained severely limited. Many have lost out entirely on the crucial window of support available in the early months of their child’s life, and issues around children’s development and parents’ mental health will have been missed. I have said repeatedly that there is a good reason why we wrap a blanket of support around new mums and their babies—and dads, too. It is needed at the time and the long-term impacts of not providing it are well known. Urgent investment is needed to provide catch-up mental health and health visiting support.

The Government have failed to deliver on stronger workplace discrimination protections for new and expectant mothers, and they have repeatedly promised to do that. That is especially concerning as the economic impact of the pandemic continues to be felt. I pressed the Prime Minister on that at the Liaison Committee, and I urge the Government to pass those protections into law as soon as possible. If mums are being discriminated against, it is bad for their children, too.

The pandemic has also exacerbated pre-existing problems in the early years sector. Government financial support has been welcome, but it has not prevented many early years providers seeing a significant impact on their finances, with low pay for staff, many of whom are mums too, and high costs for parents. The pandemic may well contribute to or even accelerate an ongoing erosion of provision. I therefore urge the Government to consider a review of early years funding to ensure it is affordable and meets the needs of new parents seeking to return to work. They could set out a clear vision for our children, our undervalued early years and childcare workforce, and ensure that no parent must choose between their child and their career.

Before I conclude, I want to ask the Minister some specific questions on the Government’s proposed family hubs. Given that there are 152 upper-tier councils in England and there will be 75 family hubs, it looks like just under half of local authorities will benefit from the programme. Have the Government already determined the criteria by which the funding will be allocated? We assume it will be based on some measure of deprivation, but will the Minister confirm that? May I urge the Government not to continue their approach of forcing overstretched local authorities to commit their scarce resources to making funding applications? We should not be pitting local authorities with high levels of deprivation and child poverty, such as those in the north-east, against each other to receive support. How does the Minister see family hubs working in large local authority areas, often with poor public transport links? For example, getting across Newcastle with young children to access services via public transport can be challenging, particularly for my constituents in the Outer West. Large rural areas like Durham and Northumberland face their own challenges. I hope when the Minster responds, she will confirm that services will be “within pram-pushing distance” of the families they are intended to help, as was the aim of the Sure Start programme.

In conclusion, the crushing pressure that poverty places on families and children is clear. It impacts our children’s lives directly when parents and carers do not have enough money to meet their children’s material, social and educational needs. It impacts on them indirectly by creating stress, insecurity and conflict at home.

These adverse childhood experiences inevitably influence children’s development and wellbeing, creating a vicious cycle. To escape that cycle, we need a coherent, cross-departmental anti-child poverty strategy, backed by proper investment. It is fair to say that we are pretty far from that at the moment when the Government often seem unsure about which Minister to send to respond to child poverty debates. Such pervasive child poverty is not inevitable. The last Labour Government reduced child poverty and the concerns about child welfare that it creates. We can do it again and truly give every child the best start in life. We just need the Government to care truly about achieving it.

Covid-19 Update

Catherine McKinnell Excerpts

Monday 12th July 2021 Commons Chamber

[Sajid Javid]

My hon. Friend is right to raise this and our guidelines on mask wearing will be very clear. If people are in retail spaces and they are crowded—as we know, most of them are enclosed—they should consider wearing a mask. They should be thinking not just about themselves but about the people around them and the people serving them.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab) [V]]

The Secretary of State will have seen the huge and rising number of covid infections in the north-east, and the decision to remove controls will clearly accelerate that and increase concerns about the short-term and long-term impacts of covid and the risk of vaccine-resistant variants. Regardless of the proposed covid passports, businesses in the north-east—especially in sectors such as hospitality, where large numbers of young unvaccinated people work—are already struggling to function with reduced staff and customers cancelling at the last minute to self-isolate. With the Government withdrawing economic support at the same time, does the right hon. Gentleman appreciate the concern that, for many hospitality businesses, the Government’s summer of high covid may be too much to survive?

[Sajid Javid]

The hon. Lady will know that there is still significant economic support in place, and of course it is the job of the Treasury to keep that under review. When it comes to self-isolation and the impact that it has on businesses, it is important, now that we have such a high level of vaccination, including in the north-east, that we can take a more proportionate and balanced approach, and that is exactly what we are doing.

Social Care Reform

Catherine McKinnell Excerpts

Wednesday 23rd June 2021 Commons Chamber

[Helen Whately]

I thank my hon. Friend for his involvement on the Health and Social Care Committee, whose reports I find really helpful; they provide great insight and contribute to the conversation. He alludes to the different models for paying for social care, and clearly there are many different approaches. We have been considering them, but I am not able to go into detail here and now. I will have to ask him to wait until we publish our proposals for social care reform.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab) [V]]

This pandemic has starkly demonstrated the unequal footing of social care alongside the NHS in this country. The Prime Minister’s announcement back in 2019 that he had a social care plan ready to go has been clearly shown to be untrue, and according to Age UK, 1.5 million older people are going without the care they need. People living in areas with a low council tax base, such as Newcastle, have seen their local council tax precepts rise because the Government have shifted the burden of paying for social care on to those who can least afford it. I agree with the shadow Minister, my hon. Friend the Member for Leicester West (Liz Kendall), that the time for excuses is over, so what is the Minister doing to ensure that the Prime Minister and the Health Secretary stop making empty promises so that we can start building much-needed cross-party consensus on this issue without any further delay?

[Helen Whately]

We are working on our proposals for social care reform, and we are working across the sector. As I have said, I am already talking to and meeting those across the sector—care providers, representatives and, in fact, users of the care and carers themselves. This is complex. There are reasons why there have been discussions about this for many years without proposals for reform being brought forward. We are hugely ambitious, and we want to get it right. That is why I make no apologies that we are taking some time, but as we have said, we will be bringing forward our proposals for reform later this year.

Black Maternal Healthcare and Mortality

Catherine McKinnell Excerpts

Monday 19th April 2021 Westminster Hall

[Catherine McKinnell (Newcastle upon Tyne North) (Lab) [V]]

I beg to move,

That this House has considered e-petition 301079, relating to Black maternal healthcare and mortality.

It is an honour to speak under your chairmanship, Sir Gary. I am also honoured to open this debate on behalf of the Petitions Committee and the more than 187,000 people who signed the petition organised by campaigners Tinuke Awe and Clo Abe.

The petition highlights the shameful fact that in 21st-century Britain, the colour of a woman’s skin affects how safe she and her child are during pregnancy and birth. That is one of the starkest examples of racial health inequalities in this country. As Tinuke and Clo have pointed out, the latest data show that black women are more than four times more likely than white women to die during pregnancy or in the six weeks after giving birth. Women from Asian backgrounds are twice as likely as white women to die during pregnancy. To put that into context, I should state from the outset that the UK is one of the safest countries in the world to give birth. Deaths during pregnancy are very rare. I am sure the Minister will reiterate that in her response.

Around one in 10,000 pregnant women dies every year from causes related to their pregnancy. Every single one of those deaths is a tragedy, but they are a very small proportion of all pregnancies. The situation has also improved slightly over the last 10 years. Those figures mask the underlying, long-standing and shocking inequalities in maternal mortality, yet we do not have a base of research and evidence to fully explain their root causes and to point the way forward. There is still no Government target to eliminate the gap. That needs to be addressed urgently.

What do we know about women who die during or shortly after pregnancy? Pregnancy alters the way the body works. Two thirds of all pregnant women who die fall victim to complications such as heart disease or the care they receive while pregnant. Most do not die during childbirth itself. Dr Christine Ekechi, co-chair of the race equality taskforce at the Royal College of Obstetricians and Gynaecologists, points out that black women are more likely to have pre-existing health conditions that lead to greater risks during pregnancy. However, she also highlights that the obvious question to ask is why black non-transmissible health issues such as cardiac disease and high blood pressure are more prevalent in the first place. If it is a result of existing social and economic inequalities, that must be addressed.

Across all ethnicities, most pregnant women who die have complex medical needs, but leading maternal health researchers such as Professor Marian Knight have expressed concerns that our health and social care system is just not set up to deal with that complexity. Clinics are often based at different hospitals, requiring separate appointments. Communication between them does not seem to happen in the way it should. Women are often expected to juggle other childcare and work commitments while attending myriad appointments at a range of different institutions. Not all women have the same support and security at home and at work, and the system does not account for that.

Accounts have shown that the symptoms that pregnant women present with are too often dismissed and attributed to pregnancy itself, when they could be indicators of serious underlying medical complications. Pregnant women from all backgrounds report not being listened to despite the fact that that is crucial to the physical and mental wellbeing of both mother and child. Professor Knight points to what she calls the “constellation of biases” that black and Asian women are subject to. Those range from lack of listening, learning and nuance around women’s backgrounds and the most appropriate care, to micro-aggressions, all the way to completely unacceptable race-related perceptions such as the entirely unsubstantiated notion that black women have higher pain thresholds. If pregnant women are not being listened to and their symptoms are not taken seriously, or if they feel that they will not be, that is a recipe for tragedy.

It is important that public awareness of that issue has finally begun to increase, which is in no small part thanks to the work of such campaigners as Tinuke and Clo and the initiatives that they have launched, such as Black Women’s Maternal Health Awareness Week, which was first held last September, and the petition that we are debating. More women are now coming forward with their experiences, and five times more have shared their stories. One woman recounted:

“As soon as the second midwife was on shift she just seemed to have one goal in mind and that was delivering my baby as soon as possible, she didn’t seem to care about easing any part of my pain or reassuring me for the many worries I had at the time—she rushed my labour along and as a result almost cost me my sons life.”

Another said:

“I already seemed like that hyper-emotional black woman worried about nothing and I let that silence me. I really wish in this moment I expressed my concern or spoke up, because I honestly couldn’t have fathomed that what happened next would come.”

The reaction on social media to Channel 4’s recent “Dispatches” documentary was also very telling. One Twitter user said:

“For many Black women ‘The Black Maternity Scandal’ on Ch 4 is sadly not shocking or eye opening at all. Not being listened to in times of pain has become far too normal and it has to change.”

Another wrote:

“For many of us Black and Brown women, this felt like the first time our stories and traumatic, hurtful experiences got a small hearing on national TV.”

Pregnancy can be a special and exciting time, but it can also be exhausting and terrifying. For any woman to have to spend it not being listened to or not receiving the most appropriate care because of the colour of her skin is nothing short of appalling, so it is unsurprising that there is now an increasingly vocal consensus on the urgent need for more research and evidence, and for firm commitments from the Government and the NHS to end the scandal. We need to address the under-researching of health issues that black women face, and get a clear picture of the data on maternal deaths among different ethnic groups. Many different ethnicities are grouped together under broad categories, which risks missing cultural nuances, misrepresenting experiences and leading us to the wrong conclusions.

Maternal deaths are just the tip of the iceberg. For every woman who dies, many more will have severe pregnancy complications, and there is evidence of disparities between ethnic groups in that respect, too. However, the number of those cases and the impact on their families and lives is not recorded. Lack of research on those so-called near misses is a gap in the knowledge base that must be urgently and proactively corrected.

Tinuke and Clo are asking MPs to act by signing up to the Five X More black maternal health pledge, which I know many colleagues who have spoken today have already supported. One of the asks is that the Government implement the recommendations of the Joint Committee on Human Rights, including the introduction of a firm target to end the disparity in maternal deaths. I would be grateful if the Minister would tell us whether the Government agree with the Joint Committee on Human Rights, the chief midwifery officer and the petitioners that such a target must be put in place. It would also be useful to know whether the Government intend to address the data gap in medical research in the upcoming women’s health strategy.

I want to end by quoting what Tinuke said in an interview with The Guardian last year:

“In 1991 when my mum gave birth to me she was at greater risk of dying. In 2020 when I gave birth to my daughter that risk had increased and I was five times more likely to die…I’ll be damned if my daughter, whenever she decides to give birth, is 25 times more likely to die.”

That truly is a source of shame for this country, which is why today must mark the day that future generations start to look back and wonder how on earth this situation was ever tolerated for so long.

--- Later in debate ---

[Catherine McKinnell [V]]

Thank you, Sir Gary. I thank the Minister for her response, and everybody who has contributed to the debate, which has been very moving and powerful, and also very painful. I thank in particular my hon. Friend the Member for Streatham (Bell Ribeiro-Addy) for sharing such a powerful personal story.

I hope that the debate has helped to raise awareness and understanding of why the issue must be urgently addressed, and I hope that we have done justice to the passionate and powerful campaigning of Clo and Tinuke. I know that they and we all want to see change, so I hope that the Government and NHS leaders have heard that call today. I urge the Minister to meet those who are affected, to continue to listen and to ensure that data continues to be collected and that changes are made to put an end to the five times more statistic for good.

Question put and agreed to.

Resolved,

That this House has considered e-petition 301079, relating to Black maternal healthcare and mortality.

UK Rare Diseases Framework

Catherine McKinnell Excerpts

Wednesday 24th March 2021 Westminster Hall

[Catherine McKinnell (Newcastle upon Tyne North) (Lab) [V]]

Thank you, Mrs Miller, for chairing this debate. I thank the Minister for allowing us to get in.

Whatever the rare disease, it cannot be right that families are spending their time and energy fighting for treatments when they should be spending precious time with their children. I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on securing this debate, and I echo the concerns about Kuvan, particularly the recommendation for its use only by children. One of my constituents whose daughter is living with PKU raised very legitimate concerns with me about the detrimental impact this could have on the mental health of children and teenagers whose lives are transformed by this drug, but know the clock is ticking towards it being taken away from them as they turn 18.

One of the themes underpinning the UK Rare Diseases Framework is patient voice, which the Department for Health and Social Care says is essential to its implementation, and I could not agree more. However, we must understand that there is a long way to go before families coping with the impact of rare diseases truly feel valued by the system. Gail and Matthew Rich from my constituency fought a long campaign that I supported to access Brineura on the NHS for their daughters Nicole and Jessica, who have CLN2 Batten Disease. Ahead of this debate, Gail told me:

“Patients and parents are not included or listened to enough, and children are suffering as a result of following an antiquated system which seems all about number-crunching and balancing figures rather than what is essential and morally acceptable.”

Those affected by rare diseases too often feel that they are struggling alone, so as we move from publication of the UK Rare Diseases Framework to the development of action plans, I urge the Minister to ensure that patient voices are truly heard, and positive outcomes reflect patient needs, not just those of the healthcare system.