Down’s Syndrome

Jen Craft Excerpts

Wednesday 19th March 2025 Westminster Hall

[Jen Craft (Thurrock) (Lab)]

It is an honour to serve under your chairship, Mr Turner. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on securing this important debate.

Down’s syndrome regression disorder is an aspect of Down’s syndrome that has been, until now, largely overlooked. It affects roughly 1% to 2% of people with Down’s syndrome and usually presents between the ages of 10 and 30. It is a truly horrific condition. People with Down’s syndrome regression disorder change, almost overnight. I met a mum whose son developed Down’s syndrome regression disorder. Overnight, he became non-responsive, uncommunicative and catatonic. She said it was like everything that was him had left.

Young people who previously held down jobs or voluntary positions, and had many interests, hobbies and a love of life, lose the ability to speak, lose continence and retreat into themselves. The change is not gradual; it is stark, unexpected and profound. There is a fundamental lack of awareness of the condition. It is often wrongly diagnosed as early-onset dementia or late-diagnosed autism, even though it does not fit the profile of either of those conditions. There is currently no pathway for diagnosis, and progress is often fraught. Finding a clinician who recognises the symptoms and will treat is, by and large, impossible. However, there is hope: 80% of people who receive the right treatment in a timely manner achieve some prospect of recovery.

I want to be clear: if a typical child who does not have Down’s syndrome stopped eating and taking any interest in jobs overnight, and if they suddenly became catatonic and completely unresponsive, it would be treated as a medical emergency. People whose children have Down’s syndrome, and who have finally managed to speak to the right clinician, have been told, “You need to take your child to A&E.” If it was a typical child, that would be happening, but because that child has Down’s syndrome, it is overlooked. Will the Minister meet with me and individuals affected by this disorder to discuss how we can best create awareness, and what their thoughts are on how we can create a pathway to diagnose and treat it?

I would also like to touch briefly on my reflections as a parent of a child with Down’s syndrome, and what I think would be generally helpful in the space. Many of us feel that some kind of pathway for parents whose child is born with Down’s syndrome would be extraordinarily useful. When their child is born, or when they receive an antenatal diagnosis, they very often think, “What lies ahead? What can I expect? What does my future look like?” Down’s syndrome is the most common chromosomal condition, and we know that 50% of children born with Down’s syndrome will have a heart condition, and there is a higher prevalence of conditions such as leukaemia. By and large, those with Down’s syndrome do not have a very strong immune system—as I know every flippin’ winter, when my child gets cold after cold.

I have had lovely responses and gained a level of knowledge about what to expect from various parts of my child’s condition. We have cobbled that together from speaking to other parents, through WhatsApp groups and Facebook groups, and sometimes from speaking to professionals and support groups. It would be helpful to have that set out officially, so that parents know what lies ahead, what to expect and what to look for.

This is a very small thing, but when people with Down’s syndrome have a fever, their temperature sometimes goes down rather than up. It is really unusual, but it is normal for the condition, and it is quite useful to know as a parent. It is also useful to know how to diagnose things, because people with Down’s syndrome do not present conditions typically, including conditions that can be really awful. Parents have lost children to sepsis because it does not present as it would with a typical child, so knowing how to diagnose it is really useful.

As people transition into adulthood and make those steps into the adult world, it is important to have an idea of how people with learning disabilities and Down’s syndrome can expect to be treated. What kind of things help them to live full and happy lives? As their parents and caregivers, what kind of things should we be encouraging them to take part in? That is extraordinarily helpful to know.

I will keep my speech brief, as I know other Members want to speak, but I will just end by reflecting that Friday is World Down Syndrome Day. In our community, we typically see it is a day of celebration, as well as an opportunity to present a challenge to policy makers. This year, we are asking them to ensure that we have the right support.

People will see this debate who have just received a diagnosis of Down’s syndrome. They might be receiving it today; they might be receiving it antenatally or postnatally. When I received that diagnosis seven years ago, it was a shock. I felt like the carpet had been pulled from under my feet, and I was devastated. I look back at that moment with shame at the thought that I was so devastated at the news of this person who became the beating heart of our family. She is joyous, although she is not always happy. That is a misconception—she is not—and if people say that, I will say, “Oh, did I get a wrong one?” Of course, I did not. She is stubborn—I like calling girls stubborn—she is determined, and she is feisty.

She is also a fantastic dancer. At a community event we went to, I was there as an MP, but she had me up dancing in the middle of the floor. I was not in the background; I was right there, and she dragged me into the heart of it. She is really funny, and she is so kind, especially with her sister. There is a really brilliant statistic that 95% of people who have a sibling with Down’s syndrome think that they have enhanced their life. She has made me a better person, and she has made my husband a better person. When she loves, she loves deeply, and she loves hard. People who meet her share that and feel that love with her.

The brilliant thing is that, if a parent has a child with Down’s syndrome, they join this wonderful community. I have met some of my best friends through that community and we are there to support each other. There are some brilliant groups; I will give a shoutout to Faye and Claire from our local Down’s syndrome group, who welcomed us with open arms and showed us what our life is. We are taking what we call the scenic route, not the quick path. It is a lot better than the casual straight line. Who wants normal? It is boring, and they showed us that joy.

Upwards with Downs in Harlow is a fantastic group that organises so many wonderful events, including a holiday we have been on with people who get it. There is also Downright Excellent in Hackney, and I say to my wonderful friends Charlotte and Kirsty: what a brilliant and fantastic community we have. Happy World Down Syndrome Day—I love all of you. If anyone is ever worried about what the future looks like, come and talk to me, or to any of us, because we can tell you that it is not just going to be okay; it is going to be brilliant.

[Several hon. Members rose—]

NHS England Update

Jen Craft Excerpts

Thursday 13th March 2025 Commons Chamber

[Wes Streeting]

First, I give the Chair of the Select Committee my assurance that I would be delighted to appear in front of her Committee at the earliest opportunity —that means soon. I appreciate that it will want to scrutinise these changes in more detail, and I would welcome the constructive challenge that it offers. I also reassure her that the direction that we are giving to frontline leaders is to deliver the three big shifts in our 10-year plan, and to ensure that as we take immediate steps to bring the finances under control, we do so in a way that lays the firm foundations for the future of the NHS that we need to build.

My cautionary note to Members across the House is that when we ask frontline leaders to reform and to change ways of working, sometimes that requires not just changes to the bureaucracy as it were—the easier and lower hanging fruit—but service reconfiguration in the interests of patient outcomes and better use of taxpayers’ money. Sometimes, they get those changes wrong. I have successfully campaigned against closures of services such as the King George accident and emergency department, which should not have closed and where we won the case on clinical grounds.

Sometimes, let us be honest, the public can get anxious, and Members of Parliament feel duty bound to act as megaphones and amplifiers for public concerns. It is important that we support and engage with local NHS leaders. By all means, we should scrutinise, challenge and ask questions, but we must give local leaders the support to do the task that we are asking of them on behalf of patients and taxpayers. The powers that I have to intervene in those frontline service reconfigurations are ones that I will use only in the most exceptional and necessary cases, and that is why I have not used them once in the past eight months.

[Jen Craft (Thurrock) (Lab)]

The crisis in our NHS goes deep. I am sure that the Secretary of State agrees that it is an existential crisis that poses a threat to the future of the NHS if fundamental change does not happen. While I strongly welcome today’s statement, what assurances can he give me and the House that the right people will be in the right place in leadership positions to drive the fundamental change that is necessary?

[Wes Streeting]

That is an excellent question. We are building an outstanding transformational team with Sir Jim Mackey, which will be announced very shortly. It will bring together some of the best leaders across the country, and expertise from outside the NHS, to drive the scale and pace of transformation that is necessary. My hon. Friend is right to say that it is existential, because we cannot allow the curve of cost and demand to continue to rise to the extent that it is. The NHS’s long-term workforce plan has one in nine people in our country working for the NHS. On the current trajectory, in 50 years’ time, 100% of the public would be working for the NHS. That is clearly not a sustainable position.

I tell people who resist this reform out of love for the NHS not to kill it with kindness. We have to bend the curve of cost and demand to ensure that our health services are sustainable for the long term on the equitable foundations of a public service, free at the point of use, that we will always defend. I also say to my hon. Friends on the Government Back Benches that if we do not get this right, goodness knows what will come next. The Leader of the Opposition says that she wants a debate on the funding model for the NHS. The leader of the Reform party—I am not sure whether he is the Leader of the Opposition yet—says that he is up for anything. I am sure he is. That should worry us.

To those who want to debate the funding model of our NHS and the equitable principle of it being a public service, free at the point of use, I say that we are happy to have that debate but the Government are unequivocal: under Labour, the NHS is not for sale. It will always be a public service, free at the point of use, so that when people fall ill, they never have to worry about the bill.

Department of Health and Social Care

Jen Craft Excerpts

Wednesday 5th March 2025 Commons Chamber

[Jen Craft (Thurrock) (Lab)]

Meeting my constituents in Thurrock serves as a constant reminder of the state of our NHS and the health of our nation. I regularly hear from residents who cannot access NHS services, who are stuck on a waiting list or who are unable to see their doctor. I see how the social determinants of health play out, putting people in parts of my constituency at a disadvantage from day one. Housing, unemployment and education drive health inequalities, and in our most deprived communities, people do not live to see their 80th birthday. That is representative of the immense task this Government have been set. The funding of the health service and the estimates we are discussing today are fundamental to turning the tide on these trends.

Fourteen years of neglect and failure, the highest waiting lists on record, an ageing population that is getting sicker and unmet need in communities across the country mean that the NHS is at a pivotal point in its history. It must fundamentally change how it operates in order to survive. The £22.6 billion of funding committed to revenue spending at the Budget was a welcome and much-needed cash injection, the impact of which is already being felt. The delivery of Labour’s manifesto commitment of 2 million more appointments a year is testament to that.

[Gregory Stafford]

I did mention this in my speech, but I think the hon. Lady was there in the Health and Social Care Committee when the chief financial officer of NHS England said that the extra £10.6 billion allocated for this year would be entirely eaten up by other costs, including national insurance rises, and that there would be almost no extra money for frontline patient care. Does she remember that?

[Jen Craft]

I was indeed at that Committee, and I also remember the reflection that NHS England was incredibly grateful for the amount of money that was being given. It was the highest amount of money given to any Department at the Budget, and it was much, much more than has been given in previous years.

Waiting lists have fallen for the fourth month in a row—I hope the hon. Gentleman and his colleagues will welcome that—with 160,000 fewer people waiting for treatment than when Labour took office. That includes a member of my own family, so I am very grateful to see that happening. Extending the opening hours of community diagnostic centres, such as the one set to open in my constituency this summer, will be key in catching conditions earlier.

While I welcome those measures, I would like to make the key point that funding alone is not enough to change and save how our NHS operates, and we must turbocharge the left shift to community and neighbourhood healthcare. In my constituency, it is often the front door to the NHS that lets local people down, which drives admissions to A&E when there is no available alternative. We have some of the most acute GP shortages in the country, with an average of 3,431 patients per GP. The neighbourhood health hubs promised by the previous Government have yet to be delivered. People in Tilbury, one of my most economically deprived areas, are still waiting for a long-promised facility, which currently looks like a hole in the ground, and I would welcome a discussion with the Minister about how we can work to deliver it.

The record funding uplift for general practice, with £889 million of investment, is again welcome news, but it highlights the fundamental tension between tackling the crisis in acute care and driving the vital left shift to community care that will be fundamental in turning the tide on the NHS. We must not lose sight of the goal of creating a healthier population in order to reduce pressure on acute services in this country, creating better, healthier lives and delivering the right care at the right time that puts the focus on the individual.

Thurrock community hospital in my constituency delivers excellent integrated community care that brings together social workers from the local authority and NHS staff to meet people where they are, intervening early and reducing pressures on acute care. That is partly thanks to a real partnership between the local authority and the integrated care board, and it has removed the need to focus on which public body benefits and which public body pays. I have to point out that our local authority has one of the lowest spends on adult social care, partly due to measures such as this.

The real focus is on how to deliver for individual patients—what do patients need and how do they get to that place? I welcome the bold move in the recent planning guidance to drastically reduce the strict targets placed on integrated care boards, allowing more of this work to take place by giving ICBs independence to make decisions that are relevant to their local population. However, I have heard from ICBs, including mine, that there is a risk that a focus on the elective care target may draw attention away from prevention.

I would like to point out the removal from the planning guidance of the targets for annual health checks for people with learning disabilities. That community historically has been under-represented and has not had its health needs fully met. This population dies younger and does not access preventive care at the point at which it would be most beneficial for them. Blanket prevention measures do not cover such populations. People in this community need specific intervention that allows them to access the healthcare that they need, when they need it. While a blanket annual health check is not necessarily the right way forward, it is absolutely critical that historically overlooked groups who are not served as well as others by our healthcare system are not overlooked when we shift to community and prevention work.

I very much welcome the strong investment that the Government are making in our NHS; it is vital in order to turn the NHS around and ensure that it is there for generations to come. I would welcome the Minister’s thoughts on how we can incentivise prevention as well as providing acute care.

[Madam Deputy Speaker (Judith Cummins)]

I call the Chair of the Select Committee.

--- Later in debate ---

[Layla Moran]

We should be celebrating examples of where this works well, not shutting them down.

In Oxford, the Hospital at Home programme, run by Oxford University hospital ambulatory team, does incredible work. I visited 91-years-young Mavis the other day, who was receiving top-notch ultrasounds in her home—ultrasounds of better quality than those that she would have got in the hospital. That saves hundreds of pounds for the NHS and means no long trip for her and her family. That is definitely something that we should do more of.

Let me turn to the estimates, because they are why we are here. The supplementary estimates have been published. I will not hit anyone over the head with them—they are incredibly heavy. They are worth a read. They talk about a £198.5 billion day-to-day spending budget. At face value, that is an increase of £10.9 billion on the estimate from July, but £9.2 billion is for staff pay increases. Let us be clear: staff deserve that pay rise. It is long overdue. Retention and mental health are important, and we must invest in our workforce, but that does leave just £1.7 billion.

[Jen Craft]

Will the hon. Member give way?

--- Later in debate ---

[Joe Robertson (Isle of Wight East) (Con)]

I commend my hon. Friend the Member for North Cotswolds (Sir Geoffrey Clifton-Brown) for his introduction to the debate. I agree with the majority of what I have heard so far.

We must understand the context of the large figures announced by the Government. In particular, the £10 billion for the NHS next year sounds like a big figure, but as my colleague and Chair of the Health and Social Care Committee, the hon. Member for Oxford West and Abingdon (Layla Moran), was right to inform us, the vast majority of that money—around £8 billion to £9 billion—will be taken up by union pay deals, the national insurance increases brought about by the Chancellor, and inflation. When all the essential costs that the NHS must meet are taken into account, the £10 billion represents a shortfall. The NHS will be able to deliver only if it produces productivity gains. We must understand that £10 billion will not even meet the required costs of the NHS.

[Jen Craft]

Does the hon. Member not consider the workforce a vital part of the NHS? Properly funding the workforce, through a pay deal that appropriately recognises the effort they put in, is part of the work of turning around the outlook for our NHS.

[Joe Robertson]

I agree with all those things, and I am happy that the hon. Lady and I agree with each other. I hope that she acknowledges that £10 billion does not cover the basic requirements of the NHS. It delivers nothing more; in fact, it delivers less. The NHS will be able to continue to grow only if it delivers productivity gains, and it should.

Oral Answers to Questions

Jen Craft Excerpts

Tuesday 11th February 2025 Commons Chamber

[Stephen Kinnock]

The hon. Lady will know that the Government’s position on the Terminally Ill Adults (End of Life) Bill is one of neutrality. I am on the Bill Committee simply to speak about the Government’s position on the workability and operationalisation of the Bill. We look forward to seeing the amendment that will be brought forward by my hon. Friend the Member for Spen Valley (Kim Leadbeater). Any comment we make or position we take will be based on the operationalisation of that amendment, should it become part of the Bill and, ultimately, should the Bill gain Royal Assent.

[Jen Craft (Thurrock) (Lab)]

Thurrock community hospital does fantastic work on integrated care, particularly on integrated mental health care. On a visit, representatives said that what makes the hospital successful is a commitment to working across integrated care boards, the local authority and other relevant partners in the community, as well as a commitment to meeting people where they are, finding out what is important for them and working from there. Does the Minister see that model as integral to the reform of mental health care in this country? Will he join me on a visit to Thurrock community hospital to see what it does and what can be learned from how that work is undertaken?

[Stephen Kinnock]

My hon. Friend is a doughty campaigner on this issue in her constituency. She is right that the integration of services is crucial to ensuring that we get the best possible outcomes for people who are struggling with their mental health. I would be very happy to discuss with her the possibility of me visiting her constituency.

Health and Adult Social Care Reform

Jen Craft Excerpts

Monday 6th January 2025 Commons Chamber

[Wes Streeting]

The right hon. Gentleman is right to say that we need a debate as a country about the balance of financial contribution between the individual, the family and the state. I well understand why David Cameron was so concerned about catastrophic care costs and people having to sell their homes to pay for their care and the problem he was trying to solve. With every Government since, the issue has been seen as less urgent than others, but that does not mean it does not matter or that we should not consider it as part of the Casey commission. We need to consider all these issues in the round and, as much as we can, build a consensus not just in this House, but throughout the country about the balance of financial contribution and what is fair, equitable and sustainable.

[Jen Craft (Thurrock) (Lab)]

Just before Christmas, one of my constituents visited my surgery and gave me pause to reflect on the massive, often lifelong impact on loved ones who have someone in the social care system, and the devastating impact on their ability to work and to live healthy, fulfilling lives. Does the Secretary of State agree that the commission will lay the foundation for real change so that people in the social care system and their families can live the healthy, fulfilling lives they deserve?

[Wes Streeting]

I strongly agree with my hon. Friend, who has done much already in the past six months to champion social care. Whether people are in residential care home settings or we are doing everything we can to ensure that they can stay in their own homes, everyone deserves to live comfortably, well supported, with independence and with dignity. That is why the steps we are taking, particularly through the disabled facilities grant, will be immediately impactful on thousands of people across the country in just the next three months. We have so much more to do, and that is why I am genuinely excited by the work of the commission.

Winter Preparedness

Jen Craft Excerpts

Wednesday 18th December 2024 Commons Chamber

[Madam Deputy Speaker]

I call a member of the Health and Social Care Committee.

[Jen Craft (Thurrock) (Lab)]

Last week, I visited Basildon hospital, which is relied on by my constituents and people across Essex. Staff in the emergency department told me that they were operating under intense pressure all year round, and that it is indeed winter all year for them. That is due to a lack of beds, the terrible condition of parts of the estate and inadequate primary care services, meaning that people turn up at the ED when they should be somewhere more appropriate. What steps is the Minister taking to turn the page on 14 years of decline, and to ensure that Basildon and hospitals across the country have the resources and structures they need to better manage seasonal and year-round pressure?

[Karin Smyth]

My hon. Friend has already been a fantastic advocate for her local NHS services. Like the hon. Member for North Shropshire (Helen Morgan), my hon. Friend is absolutely right to highlight the acute pressures all year round. We did not always have winter crises under the last Labour Government. It was tough; I worked during some of that time, and it did happen, but getting used to such levels of bed occupancy and pressure in the system all year round is a direct legacy of the Conservatives and what they did to the NHS, particularly with the Lansley reforms, and their refusal to take a grip of it. This matter of a summer crisis going into a winter crisis is a real problem. That is why we are committed to these short-term measures to stabilise and support the system over the winter. However, as I said in my statement, we will also look at medium and longer-term reform so that we do not have to revisit this scenario year on year.

Income Tax (Charge)

Jen Craft Excerpts

Tuesday 5th November 2024 Commons Chamber

[Jen Craft (Thurrock) (Lab)]

This Budget will make a real difference to the lives of my constituents. It is designed to fix the foundations of our economy, to turn the page on the failed policies of the previous Government, and to deliver the change that people across the country and in my constituency voted for.

As hon. Members on both sides of the House have made clear, we have all seen, experienced and heard about the decline of the last 14 years. The economic failures of the previous Government left our constituents worse off than they were in 2010. Every day, families in Thurrock tell me about the challenges they face. Public service performance is at a historic low, and behind every statistic is the real-world experience of one of my constituents, whether it is the tragic loss of life while waiting to see a doctor following heart surgery, the learning-disabled man I met who had resorted to pulling out his own teeth because he could not see an NHS dentist, or the parents desperate to receive a diagnosis for their child’s special educational needs so that they can start receiving the support they need.

Nowhere are the Conservatives’ austerity and broken promises more obvious than in our NHS. My constituents face some of the most acute GP shortages in the country, with each of our local surgeries caring for an average of nearly 3,500 patients. People continue to struggle with NHS dentistry, with only 31% of adults in Thurrock having seen an NHS dentist in the last two years. Nearly a third of patients at the local trust have waited more than six weeks for a diagnostic test. I welcome the commitment to provide an extra £22.6 billion of funding for day-to-day spending for the health service, to cut waiting times and deliver 40,000 extra appointments every week. The commitment to more capital funding cannot come soon enough. I look forward to working with Ministers to ensure that benefits are felt in Thurrock, particularly in areas such as Tilbury, where health inequalities are felt more keenly.

On a personal note, I welcome the commitment in the Budget to deliver for unpaid carers. From my own experience as an unpaid carer, I know that the increase in the amount that carers can earn without losing their carer’s allowance, as well as the commitment to review the current cliff edge of carer’s allowance, will be welcomed by those who do the vital work of caring for their loved ones.

For so many people, this Budget will tackle the challenges our country faces. Our party founded the national health service and brought it back from the brink after years of Tory neglect. On the campaign trail, I told my constituents that we did it before and we will do it again. This Budget delivers on that promise, and I am proud to support it.

Access to Primary Healthcare

Jen Craft Excerpts

Wednesday 16th October 2024 Commons Chamber

[Jen Craft (Thurrock) (Lab)]

I begin by reflecting on the version of the NHS’s foundation set out by the hon. Member for Sutton and Cheam (Luke Taylor). I was unfamiliar with that, so I thank him for that history lesson.

The fate of our GP services is felt nowhere more keenly than in Thurrock, where we have the highest ratio of patients to GPs in the country. At a coffee afternoon a few weeks ago in Aveley, in my constituency, where the local medical practice has perhaps the highest patient load of the entire area, we discussed some of the issues facing the community, as well as the solutions. It was a microcosm of this debate. People thought they deserved to be able to see a GP, but my constituents, particularly those in Aveley, showed a bit of common sense about what they could expect after 14 years of a Conservative Government running their healthcare services into the ground. They know that they do not always need to see a GP. They know that sometimes a face-to-face appointment is not necessary. However, they also want to know that the healthcare they need is there when they need it. GPs at the meeting had a similar reflection—they want to be able to spend the time that they have with their patients, not form filling, not running around bureaucracy, and not referring back to secondary providers. They want to spend their time delivering the best medical care possible.

A great example of community healthcare is provided by Orsett hospital, our local community hospital. What it does it does very well, providing blood tests, dialysis and so on. People can get the care they need on the doorstep. However, the hospital has been under threat of closure for as long as I can remember. I was born there, and since then its services have been taken away one by one.

We have a healthy scepticism in Thurrock for neighbourhood health hubs. We have been promised them for a number of years, but, thanks to a combination of Conservative Government incompetence and Conservative council incompetence locally, we no longer have the money to provide them. In my constituency, out of the three healthcare hubs that we have been promised, all we have so far is a hole in the ground in Tilbury, one of our most economically deprived areas.

I said earlier that some solutions also came out of that discussion. If we are to turn around primary healthcare, we need buy-in from our population. People need to know what services are available to them. They need to be in charge of their healthcare, including their preventive healthcare. They need to know what is coming up on the horizon for them and how they can take steps to change outcomes for themselves. I conclude by welcoming this Labour Government’s approach to turning around the NHS towards a preventive and community model.