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Robbie Moore (Keighley and Ilkley) (Con)
I beg to move,
That this House has considered e-petition 638449 relating to career breaks for parents of seriously ill children.
It is a pleasure to serve under your chairmanship, Ms Vaz. No parent should have to go through the upset and anguish of seeing their child diagnosed or suffering with a serious illness. Sadly, it is not within our power to prevent these terrible situations, but what is within our power as legislators is to provide support and reassurance to parents who end up in those traumatic situations. We can help ease not only the process, but the parents’ return to work at the end of their child’s treatment, or throughout the child’s treatment, should the individual circumstances permit.
We should remember that the workplace and being in work is often about more than just money, although of course money is very important. Work gives us a sense of purpose, belonging and normality. It can therefore be a terrible situation for a parent if they rather unexpectedly find themselves in the position of not only losing their job, but fearing for their child’s health. Sometimes, with care treatment plans being longer than expected, additional complexities may arise if the child is particularly unwell. Depending on the child’s illness, they may need to attend regular appointments at the hospital, sometimes more often than was originally envisaged, or there may be a dedicated treatment centre that is further than one may have initially realised. Therefore, the treatment and care that has to be provided by the parent is sometimes not known at the outset and can be particularly onerous.
Some children may need around-the-clock care and attention, with no other family member or friend to provide that additional care, or the parent may simply be the only person the child has to care for them. At the end of the treatment, whether it is successful or not, it can sometimes be incredibly difficult for the parent to return to the workplace. Indeed, the job may not be waiting for them at the end, ready for them to return to. The parent may struggle to get back into the jobs market at a cost to them, their children and the state.
Let us take the situation of Christina Harris, who started this petition and who, I am honoured to say, is with us in the Public Gallery. Indeed, I was honoured to meet Christina before the debate, and it is great to see her, her friends and her child, Skye, here. Skye was diagnosed during a Christmas period, and on the first day back to work, Christina was told that she would not be paid and was shocked to discover that she had no statutory protection to fall back on. Skye’s treatment, once diagnosed, was to take approximately two years. Although Christina’s employer could not provide her wages during the time that Christina was caring for Skye, her employer at least kept the role open to Christina while she was initially absent from work.
Six months in, Christina was asked to attend a meeting with her employer in which she felt that she was put in a very difficult position, and her employer was completely unwilling at the start to discuss the flexible working options. After another six months, Christina’s employment contract was terminated, despite her having provided 19 years’ of service to the same company, and obviously she still had to deal with Skye’s care. It is great to see that Skye is on the mend and returning to a good state of health. After a year of uncertainty, Christina was left taking part-time work to make ends meet while struggling with providing the care for Skye.
This situation is unlike any other regarding parenthood and work. Let us take the example of a parent having an accident; parents have access to bereavement leave. One of the better parts of the Employment Rights Bill that is going through this House includes a right to neonatal leave and pay, easing this exact issue for newborns, but not for older children. Even in the classic case of unplanned pregnancy affecting a career, parents still have nine months to prepare, but a child can become ill at a moment’s notice and through no fault of the parents or the child. Despite that, however, the options for support are incredibly limited, which is why the petition is before the House.
Wendy Chamberlain (North East Fife) (LD)
The hon. Member pointed out some of the increased employment rights that we should see under the Employment Rights Bill. In the previous Parliament, there was no employment rights Bill, but private Members’ Bills did improve the situation in part: the Worker Protection (Amendment of Equality Act 2010) Act 2023 on flexible, working promoted by my hon. Friend the Member for Bath (Wera Hobhouse), and my Carer’s Leave Act 2023. That suggests we need more support for parents—paid carer’s leave—so that people like Christina do not suffer in the way that the hon. Member for Keighley and Ilkley (Robbie Moore) has outlined.
Robbie Moore
I thank the hon. Member for her intervention. That absolutely highlights the importance of why the petition needs to be considered by the Government and the Minister of the day. The Employment Rights Bill that is working its way through the House includes some positive measures. Potentially, this petition is an additional thought that the Minister should consider, given the strength of feeling shown through the number of people who have signed it.
In the vast majority of cases, these situations are completely unexpected. As I said, who knows when a child is going to become seriously ill? A diagnosis for a child can come out of the blue and a parent has to deal with it.
Rachel Gilmour (Tiverton and Minehead) (LD)
The hon. Member has brought to mind the occasion when my youngest son, after playing rugby, was diagnosed with a suspected brain tumour. As I live in the middle of nowhere, in Somerset and Devon, the flashing-blue ambulance took two and a half hours to get to the nearest children’s specialist unit. This is not just about losing a job or the wages; it is the enormous stress and anxiety it puts on parents, particularly in rural areas such as mine. Does the hon. Gentleman agree?
Robbie Moore
Absolutely. That highlights the associated challenges for parents, and not only the financial ones that can unexpectedly be put on them, but the emotional challenges and anxiety-related issues. Whether the scenario involves a short-term care plan being put in place or something much longer, that anxiety is absolutely there and needs to be recognised.
As I was saying, a diagnosis for a child can come out of the blue, and a parent, of course, has to deal with it. They have no other choice but to make the situation work, and that can be incredibly difficult. Complexities will arise in the care programme of the child, no doubt, and it will be emotionally draining for all involved, but the parent has to get on with it. This injustice certainly resonates across the country.
John Lamont (Berwickshire, Roxburgh and Selkirk) (Con)
My hon. Friend is speaking very well about the challenges and issues. It was great to meet Christina and Skye before the debate started. Does my hon. Friend recognise that many employers follow good practice, paying parents during a time of care and keeping jobs open, but the petitioner and I are concerned about those employers who are not following good practice? That, I hope, is what the Government will address.
Robbie Moore
Absolutely, and I thank my hon. Friend for that intervention. Not all employers sing from the same hymn sheet by providing that good level of support and care to their employees while they are going through very traumatic situations. Some employers are very good, but not all carry out the same level of care for their employees during such difficult situations.
That is why Christina’s petition has been so well recognised in the amount of support that it gained, gathering 102,316 signatures. In my Keighley and Ilkley constituency, I have received many pieces of correspondence on this issue, and it can be harrowing—as a Member of Parliament, as I am sure all of us have done this—listening to some of the very real challenges that parents face in such situations, including the financial, support and emotional challenges.
In support, the Petitions Committee carried out its survey on the back of Christina’s petition, asking people who had signed it how the severe illness of children affects them as parents. I am thankful to the 9,609 people who submitted a response to the Petitions Committee as part of our review of the petition. The huge response rate to not only the petition, but the follow-up demonstrates just how much of an issue this is, and I hope that the Government will respond accordingly to some of the concerns that have been raised. The survey suggests that the majority of parents affected do manage to cope with the challenge, but crucially, this is only possible for those who have understanding and accommodating employers, as has been mentioned.
Alison Bennett (Mid Sussex) (LD)
I recently spoke to my constituent Kat from Hassocks, whose son Teddy has battled life-threatening neuroblastoma since July 2022. Kat told me that although her employer went above and beyond to support her, she is the exception and not the rule. With many employers either not able or not willing to do so, does the hon. Member agree that it is unacceptable for there to be—in Kat’s words—“a total lottery” regarding whether parents of seriously ill children receive employment support?
Robbie Moore
The hon. Member’s intervention gets to the nub of the why this petition is so important: not all employers are doing the right thing by their employees. That parent may be a single parent or have no support around them, and they can end up in a very difficult situation, having to deal quite immediately with the challenge that they face. A lack of reassurance in the workplace can add to their anxiety.
Wendy Chamberlain
I am grateful to the hon. Member for allowing me to intervene a second time. It is right that we acknowledge employers who are doing this well. I declare my entry in the Register of Members’ Financial Interests: I am a vice-president of Carers UK. That organisation runs an important network that shares good practice among employers, and I urge any constituents who have signed the petition to get their employers linked in with it.
Robbie Moore
The hon. Member must have read my speech, because I will come later to the importance of all employers and employees being aware of the rights that already exist. There are a number of protection measures out there. The challenge is that employers and employees do not necessarily know what support is available.
Through the survey conducted by the Petitions Committee, we can see, as in Christina’s case, that when an employer is less flexible—or outright unhelpful, as we have seen in certain circumstances—things quickly get worse. Some 99% of respondents believed that employers should be required to provide career breaks for parents of terminally ill children. What Christina and thousands of other people are calling out for is statutory reassurance that, as soon as they are able to go back to work, the job will be available for them, at least for a limited period.
That reassurance—that as soon as treatment is complete, life can go back to normal—is hugely important for the parents’ mental health and to help them plan their future financial situation. Many families can afford to take a short-term hit to care for their child, although not all can, and they cannot do so without a guaranteed time period within which they can get back into the workplace at the end of that employment break. That is why I reiterate the importance of the petition.
The key point about reassurance was raised with me by It’s Never You, a charity run by two individuals who care deeply about the issue because they suffered the tragic loss of their own child from the terrible illness of cancer in 2021. When I met them, they passionately explained that getting support in place from day one is a major issue. For the first 90 days after a child has been diagnosed with a terrible illness, parents have to go through an incredible amount of restructuring in their life, so having their employer’s support from day one is vital. As employers themselves, those individuals are all too aware of the burden that a statutory requirement for a career break would have on smaller businesses, but they correctly highlighted to me that the lack of any Government-directed standard or benchmark is a recipe for chaos—and, as has already been indicated, many employers and employees do not necessarily know what level of support is available when a child is diagnosed with a serious illness.
Helen Maguire (Epsom and Ewell) (LD)
We have heard so many stories of individuals who lost their jobs as a result of taking time off due to having seriously ill children, adding stress to an already unbearable situation. We have heard stories of good employers and not-so-good employers. Does the hon. Member agree that it is vital that we understand the extent of the situation, and that the Government should commission research into the number of families impacted each year? If we had more information, that would help us to determine the best solution.
Robbie Moore
I always agree that it is fine in this place for us to be designing guidance, regulations or indeed other legislation, but unless it practically works and has the positive impact it was designed to have, it benefits no one. More datasets and data collected and available to Government to help them make the right decisions is always welcome. I endorse the hon. Lady’s point.
Employers and their employees often struggle to come to an acceptable arrangement, as the group It’s Never You has indicated, so it is important that the Government outline the support that is already available to those employees and employers, whether that is a break or flexible working. We should also be encouraging businesses to think outside the box, as highlighted to me by the Rainbow Trust and the Chartered Institute of Personnel and Development when I was preparing for this debate. They told me that flexible working is vital; for the parent of a sick child with complex needs, it is so important that flexible working, or part-time work, can be put in place. But, as many employers said to me during my preparation for this debate, although good employers do as much as they can to facilitate the needs of a parent with a seriously ill child, not every job environment allows flexible working to take place. That has to be recognised.
One problem that was raised by all the parties I spoke to about this issue was just how long it can take for support, such as carer’s allowance, to kick in. Again, we come back to the crucial first 90 days, a period that is in part defined by how long it takes state aid to arrive. In those 90 days, parents can feel completely lost when it comes to knowing their rights and how they can use those rights to ease their situation. Businesses may be just as ignorant of the rights and support mechanisms actually available, and time spent researching that, once a challenge has been put to them by a parent with a seriously ill child, can delay support being put in place. I therefore urge the Government to ensure that, through the best means possible, employers are well equipped with the right amount of support, and that their rights and those of employees are laid out.
My first question, which I hope the Minister will be able to answer today, is: how will the Government ensure that employees are aware of their rights before a crisis is put before them; and how often are employers made aware of the obligations on them? Secondly, what work are the Government undertaking to ensure that support such as carer’s allowance is delivered as quickly as possible? For many families, their income can drop to zero overnight, and reaching the end of the first month can be the greatest challenge. With a doctor’s note or an employment record, it should not be difficult to determine the truth of an applicant’s status.
Finally, the key point, which has been reiterated throughout the evidence given to me in preparation for this debate, is that the most important change is about giving certainty to struggling families, to allow them to get through and recover quickly from these terrible ordeals. I hope the Minister will be able to confirm that the Government are looking at providing some clarity through statutory requirements for the provision of career breaks for parents of seriously ill children. We know from the work undertaken on neonatal complications that the Government are open to the concept, so what logical reason can there be for this support to end with an arbitrary cut-off, based on the age of the child?
I hope the Minister will listen carefully to the contributions that are made in this debate. I thank Christina and the more than 100,000 signatories who have provided support for this debate to happen in this House. I also thank everyone who contributed to the work of the Petitions Committee in preparation for this debate and those who responded to the survey undertaken by the Petitions Committee. I look forward to hearing hon. Members’ contributions to this debate.
Mr Mark Francois (Rayleigh and Wickford) (Con)
Thank you for calling me to speak in this important debate, Ms Vaz. I look forward to serving under your chairmanship this afternoon. I also thank my hon. Friend the Member for Keighley and Ilkley (Robbie Moore), for so ably introducing the debate and for doing it in such an empathetic manner. He mentioned that the Petitions Committee initiated a survey to gather further data on the extent of this situation, and I commend the Committee for its initiative in doing this. I will refer to some of the findings from that survey shortly.
We are here today to debate e-petition 638449, which calls for career breaks for parents of seriously ill children. Let me give the House some background to what led us here this afternoon. I am proud that the originator of this petition, Christina Harris, is my constituent. She emailed me back in early summer 2023, explaining the circumstances that she faced in trying to care for her lovely daughter, Skye, who was undergoing a course of serious medical treatment, about which her employer, a local estate agent, seemed quite unsympathetic. Having read her email, I invited her to come to one of my regular twice-monthly constituency advice surgeries, and she duly arrived there in July 2023, by which time the number of responses to her petition was already into five figures.
When we met, Christina and I discussed at some length the background to Skye’s condition and the pressure that it had put on Christina as she tried to juggle work and family responsibilities in caring for her daughter as any loving parent would want to do. Christina seemed to me to be very focused on what she was trying to achieve. She had what the military call “a very clear sense of mission”, and she told me she was determined to achieve the 100,000 signature threshold in order to provoke a debate in Parliament. I must confess that, while I was sympathetic to what she was trying to achieve, I did explain that gathering 100,000 signatures was no mean feat, and it could prove to be quite a challenging endeavour.
I am pleased to report to the House that Christina was completely undeterred and assured me of her absolute determination to press on. Importantly, she said, she was doing this not just for her daughter, but on behalf of other families who find themselves in similar, very difficult circumstances; she was doing it for them too. By the autumn, Christina had made dramatic progress and her petition had breached the 100,000 signature threshold. This resulted in the two of us visiting 10 Downing Street to deposit a hard copy of the petition as an aid to her campaign. This subsequently generated a degree of positive publicity, including from the BBC and our local newspaper back in south Essex, the Echo, which has been very supportive.
Given her tremendous efforts in this regard, I am delighted to report that Christina is present in the gallery this afternoon to witness the debate, and that she has brought Skye with her so that she can appreciate her mother’s efforts for herself. Very importantly—and with Skye’s permission—I am delighted to report that she has rung the bell and is now in remission. May God grant that that remains so. As well as congratulating Christina and Skye, I place on record the fact that of the top 10 constituencies which have generated signatures in support of this petition, four of them are in Essex: Basildon and Billericay, with 1,034 signatures; Castle Point, with 1,304 signatures; Maldon, with 1,324 signatures; and my own constituency of Rayleigh and Wickford, which—I say this with a certain degree of pride—topped the league with 2,096 signatures, although the credit for that goes entirely to Christina and her supporters, not to me.
Unfortunately, as has already been mentioned, we do not have firm statistics on how many families find themselves in this predicament, but it may be instructive that some 9,609 respondents to the Petitions Committee survey left comments or suggestions in their reply, and of that number, 12%, or 1,153 respondents, declared that they were parents or guardians in those circumstances. It would therefore be wrong to dismiss this problem as affecting only a handful of families this year; it appears to be wider than that.
Although Skye was fortunate to receive treatment at Great Ormond Street hospital, which is a world-class institution for the care of sick children, it nevertheless placed a great deal of strain on Christina and her family. Unfortunately, Christina was ultimately dismissed by her employer because she had prioritised the care of her child over her career. For the record, Christina attempted to negotiate with her employer over a period of time to come up with some kind of flexible working arrangement, but ultimately her employer was unsympathetic.
In response to this petition, a number of parents and guardians replied with their own experiences of being in that situation. Some of their accounts, hanks to benign employers, were positive. For instance, one wrote:
“My husband and I have two separate careers in two separate fields. When our daughter was diagnosed with leukaemia at 7 months old, both of our employers supported us. We were both able to take leave and be paid for the entire duration of my daughter’s terminal illness... Our employers support to us, in what was literally a nightmare, was the reason we were able to stay by our daughter’s side at all times. She was never alone.”
Similarly, another respondent reported:
“The impact of my employer’s support greatly affected my ability to support my child. If my employer had not been so supportive and accommodating, the consequences of my child's diagnosis would have been far reaching in our lives and I am incredibly grateful.”
Overall, 58% of those who responded said that their employer was either supportive or very supportive when their child was seriously ill. A similar proportion, 54%, reported being granted flexible working arrangements to help them to care for their child. Conversely, however, 30% of respondents who were parents or guardians said that they became unemployed or stopped working during or after the period when their child was ill. One of those respondents reported:
“I was the sole earner, but we had young children at home, as well as our sick child. I was on unpaid leave for 6 months, with no financial support except from charitable help. It has taken years to climb out of the debt we were left in."
The testimony of a nurse working with families in such situations is both instructive and moving. This nurse reported:
“I have supported so many families as a children’s palliative care nurse who have had to go to work while their child was dying due to concerns of losing their job. Some of these families then lost their job during their child’s journey.”
In practice, so much of this issue seems to come down to how supportive and understanding—or not—individual employers are prepared to be in these very difficult circumstances. Such circumstances can be even more challenging for those who are self-employed and risk receiving little income or no income at all if they choose to stop work to care for their child. It is important to restate that 99% of the respondents to the survey agreed with the proposition that career breaks should be granted to the parents of seriously ill children.
In advance of this debate, I asked the House of Commons Library if it could provide some specialist advice on this issue and on what assistance is currently available to parents in what was Christina’s situation. As the Library reports, the Carer’s Leave Act 2023 introduced the right for employees to take up to one week’s unpaid leave each year to care for a dependant. That is helpful, but it in no way addresses the scale of the challenge in Christina and Skye’s circumstances.
I also asked for the Library’s advice on whether the Employment Rights Bill, which is currently going through Parliament, would help to alleviate the problem. For the record, I have some reservations about the overall effect of the Bill on the jobs market and the Government’s growth objectives, but I wanted to know, in a non-partisan way, whether any measures in the Bill would assist parents in Christina’s situation. The Library’s conclusion was as follows:
“Clauses 11 to 15 of the of the Employment Rights Bill would make some reforms to family related leave provisions. This is primarily around removing the qualifying periods for unpaid parental leave (sometimes called ‘ordinary’ parental leave and paternity leave), making them day one rights for all employees. Employees can take up to 18 weeks in total of unpaid parental leave up to their child’s 18th birthday, with a maximum of four weeks per year, for any reason related to their parental responsibilities, which could for example, include caring for a seriously ill child”.
However, the Library pointed out that there is no specific provision in the new legislation to allow for a career break for a parent with a seriously ill child. As the Library puts it,
“You ask whether the Employment Rights Bill 2024/25 includes measures to require employers to offer career breaks for parents with a seriously ill child. In short, the Bill does not include such a provision.”
I say again to the Minister that this is not meant to be a partisan point; it is just an attempt to summarise where we are in legal terms regarding what a parent in such terrible circumstances might be entitled to.
When I previously discussed this matter with Christina, including at my surgery, she was well aware of the pressure on the public finances; she appreciates that any help that could be given in these circumstances would need to be finely targeted to protect the interests of the taxpayer. Nevertheless, given the relatively small number of families who find themselves in this situation each year—compared, for instance, with the number of families who might qualify for parental leave following the birth of a child—the public expenditure implications of any ameliorative action should be relatively modest. Moreover, Christina’s proposal is that a career break could even be unpaid, if that was the only way that the employer could afford to keep the job open. The employer might employ someone else to fill the role in the intervening period, but Christina is not suggesting that the employer would necessarily have to pay both the person who was filling in and the person having the career break.
Given all that, I am genuinely interested in hearing from the Minister what proposals, if any, the Government are looking at to assist Christina’s family and other families in similar situations. Specifically, given that Christina has gone to all this time and trouble, what is the Government’s attitude towards her suggestion—and that of the signatories to the petition and respondents to the survey—that career breaks should be provided for the parents of seriously ill children?
I place on the record my admiration for my constituent Christina Harris and her daughter Skye in bringing this important issue to Parliament. When I first met Christina two years ago, she told me that she was determined to achieve 100,000 signatures or more for her petition. I commend her for having succeeded, and for coming along with her daughter to witness these proceedings for herself, and thus seeing the results of her efforts. I emphasise again that each year a relatively small number of families find themselves in these very challenging circumstances and therefore that the public expenditure implications of any very targeted relief to aid parents whose seriously ill children make it very difficult for them to work, should be relatively modest. Indeed, Christina has suggested that granting a career break should even be unpaid if that is the only way of an employer keeping the job open.
I hope that the Minister can provide some comfort to Christina and hold out hope for a solution to her and Skye, as well as other families who may find themselves in similarly challenging circumstances. I thank the more than 2,000 of my constituents in Rayleigh and Wickford, plus all others across Essex and indeed the United Kingdom, who took the time and trouble to add their names to the petition that has led to the debate today. It is a very good example of people power in action and I hope it will yet lead to a positive outcome, not just for Christina but for other families in a serious situation.
Robin Swann (South Antrim) (UUP)
It is a pleasure to serve under your chairmanship, Ms Vaz. I thank the hon. Member for Keighley and Ilkley (Robbie Moore) for introducing the debate and pay tribute to Christina for starting the petition that allowed the issue to be brought to this Chamber. I also wish Skye continuing good health.
No parent should have to choose between work and supporting a sick child through a terminal illness, life-limiting illness or serious illness that leads to an extended stay within a hospital facility. As was mentioned by the hon. Member for Keighley and Ilkley, the charity It’s Never You, founded by Ceri and Frances Menai-Davis, has petitioned for Hugh’s law. From its research, it has estimated that this issue affects up to 4,000 children per year across the UK who are spending 60 days or more in hospital. That is a rough estimate, but although 4,000 sick children may seem small compared to what our health service supports, that is 4,000 families who experience the likes of the challenge faced by Christina and Skye’s family.
I will deviate slightly now, because it is personal experience that so often shapes debate around here and how we bring forward progress. Our youngest son, Evan, was diagnosed pre-birth with a congenital heart defect. He had a single kidney and atresia of the bowel. We were told before Evan’s birth that we could expect an extended stay in hospital to support him through his initial stages of life. He celebrated his first birthday in hospital; he spent the first 13 months of his life in the Barbour ward of the Royal Belfast Hospital for Sick Children. I pay tribute, as I am sure many parents would, to the workers on children’s wards who take on additional caring responsibility given the additional strains put on family life.
Although today’s petition looks at the financial implications of having a child in hospital over an extended period, many families also face emotional challenges in how they try to find not just a work-life balance, but a family-life balance as well. Many have other children at home who need support. I value the strength of today’s petition, because it is what this place should be about. We need to support families and individuals on a very local, specific, individual basis. Surely, if we have been elected to this place, that is what we should be about. I thank the right hon. Member for Rayleigh and Wickford (Mr Francois) for encouraging this debate and the petition, because subsequent surveys have indicated just how crucial this issue is.
I look forward to the Minister’s response. There is an expectation on Government that surely we could do something for the families and children who find themselves in these circumstances. Unfortunately, as a Government, as politicians and as a health service, we leave the work to be carried out by charities and families. I speak from experience. When I was Health Minister in Northern Ireland dealing with these circumstances, we had the Northern Ireland Children’s Health Coalition, which was 13 local charities that came together to look for a young patients fund to support parents in this situation financially. If the best we can really do is to look to charities to carry that work forward, there is a failing in what we and this Government want to be about.
It was estimated that the financial cost to a family was £351 per day. There is a suggestion that even unpaid leave would be welcome, but we also have to look to what the call is from Hugh’s law in regard to supplying financial support. In response to the petition, we surely have to consider how we can support families and children so that we take part of the financial stress away. That would also alleviate the emotional stress put on the parents and families who support the children who have extended stays in hospital.
In closing, I thank the Petitions Committee for granting this debate. I thank the contributors and I especially thank Christina for starting this initiative and getting the debate to this place.
Clive Jones (Wokingham) (LD)
It is a pleasure to serve under your chairship, Ms Vaz. I extend my thanks to the hon. Member for Keighley and Ilkley (Robbie Moore) for opening the debate so eloquently.
Like so many others in this debate, I want to start by acknowledging Christina’s heartbreaking story. Receiving my cancer diagnosis was hard; it changed my life and the lives of family members. Although it was happening to me, it had an equal or greater effect on my two teenage daughters. I just cannot imagine having those roles reversed—that must be very, very difficult. My Liberal Democrat colleagues and I send our sincerest hopes and best wishes for a full recovery to Skye. I am so pleased that she has had the opportunity to ring the bell.
The emotional turmoil that Christina and her wider family must have gone through in those first few hours, weeks and months is unimaginable. Yet through all that she has campaigned to correct an injustice and ensure that people receive better support than she did. That is selfless and brave. She has identified a real problem that exists in our society, which is that families of chronically ill children are not adequately supported by the Government. Families are forced to stop focusing exclusively on their child and instead stress about finances from day one.
A cancer diagnosis introduces new, unavoidable costs, from transport and energy to food and accommodation, which Young Lives vs Cancer predicts costs an average extra £700 a month on top of household incomes falling by an average of £6,000 a year. Although there are options such as taking sick leave, compassionate leave or reducing working hours, those eventually become exhausted, and not everybody can take them up. Those provisions are not intended to be used when someone has an unwell child. The losses in income and steps taken to try to juggle work and caring come despite there being a social security system. It is a distinctly difficult experience to navigate, and the existing support available is just not enough.
There are numerous problems with the existing system that categorically mean that it does not work. The three-month qualifying period that young cancer patients go through leaves families waiting for support after diagnosis, incurring an average of £2,000 in additional cancer-related costs and losing an average of £1,500 to £2,500 of household income before they can even apply for any support. Some families have to remortgage their house because the costs have been overwhelming. Research from Young Lives vs Cancer also highlights that nearly half of parents could not access flexible working arrangements, and three in five parents felt they had to go back to work before they were ready. Many will have found that extremely stressful, and that is why I support the campaign for Hugh’s law. There needs to be some form of day-one financial support for parents, instead of them having to battle through bureaucracy and impossible choices.
There is a precedent for providing that support. When a child is born, parents who stop working to care for newborns receive financial support through maternity leave. The Neonatal Care (Leave and Pay) Act 2023 provides parents of sick newborns with up to 12 weeks’ paid leave in addition to maternity or paternity leave. Why should it be different for those parents who need to stay with their seriously ill child who is no longer a small baby? I call on the Government to look further into the proposals set forward in the petition and to refer them back to the House so that their full merits can be debated.
Throughout this debate, Members have said that the United Kingdom needs to thoroughly modernise its employment rights and improve workplace protections that would benefit parents of seriously ill children. The Liberal Democrats have led the way on that debate—not this particular one, but the overall debate. My hon. Friend the Member for North East Fife (Wendy Chamberlain) introduced the Carer’s Leave Act 2023, which created an entitlement for employees to be absent from work on unpaid leave to provide or arrange care for a dependant with a long-term care need.
Unpaid carers are the backbone of our society. Millions of people care for loved ones, doing everything involved in day-to-day physical caring, including washing, dressing and feeding, yet far too many unpaid carers go without adequate support and struggle to balance caring responsibilities and work. Many people across the country have made the difficult decision to leave their jobs because they simply cannot make it work. I am proud that the Carer’s Leave Act provided greater support and the flexibility that people need. Let us also be clear that those changes benefit employers as well, leading to reduced recruitment costs and improved retention and wellbeing.
Kevin McKenna (Sittingbourne and Sheppey) (Lab)
I thank the hon. Member for Keighley and Ilkley (Robbie Moore) for introducing this debate. Demelza hospice in my constituency of Sittingbourne and Sheppey has come to me a lot on this issue. When it comes to employers, the interactions between employment and health and wellbeing are complicated and multifaceted. Some of the things that parents, or any worker, get from their employment include structure, relationships, support in the workplace and a sense of wellbeing. How does the hon. Member for Wokingham (Clive Jones) envisage juggling those dynamics, so that people do not lose all the benefits they get from employment and employers? They include not just the financial benefits, but the wider package—where people sit in society and how they operate in their day-to-day lives. Some of these conditions last a long time, so there is obviously a danger of them losing those connections with the workplace, as well as their acuity in the work space.
Clive Jones
The hon. Gentleman is absolutely right. Where somebody is off work for quite a long time, they will need the support of their employer. Very often, they could have been working for that for quite some time, so they have built up a history with them, and 99.9% of the time it will be a good history. They should be supported, but the Government have to help with that; it cannot just fall on the employer, especially over an extended period.
I would like to know what steps the Government are taking to encourage employers to do the right thing and offer career breaks. Will the Government review the proposal in the petition and come back to the House with a debate to discuss its merits? What additional support are they considering offering the families of seriously ill children?
Dame Harriett Baldwin (West Worcestershire) (Con)
Thank you for calling me to speak, Ms Vaz.
This debate on the petition has highlighted an unimaginably difficult situation when one’s child is seriously ill. In a series of important speeches and interventions, my hon. Friend the Member for Keighley and Ilkley (Robbie Moore), my right hon. Friend the Member for Rayleigh and Wickford (Mr Francois), and the hon. Member for South Antrim (Robin Swann) have highlighted specific examples of the very difficult situation that arises when one’s child is sick, not only in one’s own family, but with one’s employment.
As my right hon. Friend the Member for Rayleigh and Wickford highlighted, his constituent Christina Harris has campaigned on behalf of this cause after experiencing a very difficult situation when her daughter Skye fell ill. The reality of this situation has really hit home across the country.
One is immediately prompted to think, “What employer would not be incredibly supportive of an employee who finds themselves in this hopefully rare situation?” However, as we have heard in today’s debate, not every employer is necessarily supportive, there is inconsistent support, and many employers do not know the law in this area. For the benefit of the record, I will set out the statutory support that parents currently receive.
Through the Maternity and Parental Leave etc. Regulations 1999, after one year’s qualifying service, all employees are given the right to take unpaid parental leave. This entitlement is for up to 18 weeks in total at any point in the child’s first 18 years of life, with up to a maximum of four weeks in any individual year. This leave can be taken for any purpose connected with looking after a child, which would of course include caring for a seriously ill child.
I understand that this provision is set to change with the Government’s Employment Rights Bill, which will give parents a right from day one of their employment to start taking 18 weeks of unpaid leave to care for their child until the child turns 18. However, it is important to note that although the Bill will provide a day one right, it will not address the circumstances outlined in the petition, which calls for a career break specifically for parents of seriously ill children.
Also, although some measures in the Employment Rights Bill are well-intentioned, the Bill as a whole is problematic because it increases the already heightened pressure that employers and businesses are facing, further to Labour’s Budget of broken promises. Through the national insurance jobs tax, the hike in business rates and the incoming employment regulations, the Labour Government are sharply hiking up the cost of doing business and employing staff. Indeed, the Bill alone is set to cost £156 per employee.
But hon. Members do not have to listen to me; the chairman of the CBI has also stated that the new employment regulations would hamper growth and cause job losses. The Government’s own impact assessment of its workers’ rights package estimates that it will cost business £5 billion a year. Furthermore, I think that employers will not only not employ new people; they will also let people go. There could be quite an ugly rush before some of these measures come into force—arguably, we have begun to see some of that in the recent employment statistics, which have been disappointing.
The previous Government supported legislation that provides support for parents, including those caring for ill children or facing other difficult circumstances. To summarise some of the measures that the previous Government took, first they supported the Neonatal Care (Leave and Pay) Act 2023, which gained Royal Assent in May of that year. In January 2025, the Government announced that, from April 2025, parents with babies in neonatal care would receive a day one right to additional time off. The regulations build on the work of the previous Government, and we welcome this Government continuing it. The previous Government also supported the Employment Relations (Flexible Working) Act 2023, which was passed in July of that year. The Act increases the number of requests for flexible working that an employee can make in a year, reduces the time an employer has to administer a request, and requires an employer to consult with the employee if they are going to reject the request.
The previous Government also supported the Carer’s Leave Act 2023. Since it came into force, all employees are entitled to up to one week’s unpaid carer’s leave every year to provide or arrange care for any dependants with care needs due to a disability, old age, physical or mental illness, or injury expected to last at least three months. That could give some parents of seriously ill children an additional week’s leave each year on top of their unpaid parental leave entitlement. That is a summary of things as they currently stand.
The petition was submitted during the previous Parliament, and the previous Government replied:
“The Government understands the difficulties, worry and challenges faced by parents with seriously ill children. While the Government is very sympathetic, it is not practical to provide a specific right”
for them to take a career break. They continued:
“Nonetheless, we would encourage employers to go further and consider what compassionate leave policies, flexible working arrangements and supportive work environment they may be able to offer beyond that required by legislation alone.”
We left it there at the time of the election, and so I leave it to the new Minister to outline what his Government plan to do.
The Parliamentary Under-Secretary of State for Business and Trade (Justin Madders)
It is a pleasure to see you in the Chair, Ms Vaz. I congratulate the hon. Member for Keighley and Ilkley (Robbie Moore) on securing today’s debate, and on the thoughtful way in which he presented the issues.
I thank Christina Harris, who started the petition and did an incredible job in getting 100,000 signatures. We have all now heard the story of why she had to stop work to care for Skye. It is great to see both of them in the Gallery, and it was good to hear the positive news about Skye’s condition. As we heard, 19 years with an employer was not rewarded with the loyalty that she had shown that company. Obviously we cannot rewrite history, but we can discuss what support is available and what we might be able to do in the future.
We all understand the unimaginable difficulty of having a seriously ill child and all the consequences that come with it. Hon. Members have spoken well about the difficulties that families face in those situations—the contributions have been heartfelt and serious. The hon. Member for Keighley and Ilkley said that work is about more than just money—my hon. Friend the Member for Sittingbourne and Sheppey (Kevin McKenna) also mentioned that in his intervention. That is absolutely right. There are benefits to working that go beyond simply financial reward, although of course we do not want to underplay that.
The hon. Member for Keighley and Ilkley also talked about the anxiety that having a seriously ill child can bring. Clearly, nobody wants to add to that anxiety with uncertainty about employment prospects. The right hon. Member for Rayleigh and Wickford (Mr Francois) spoke eloquently, as the constituency Member for Christina, about the campaign that she has run. He also highlighted some interesting survey results, which encouragingly indicated that a majority of employers do the right thing, but also that, unfortunately, a sizeable minority do not.
I thank the hon. Member for South Antrim (Robin Swann), who spoke powerfully about his own personal experiences. He set out the emotional challenges for not just the individual in the employment relationship but the whole family when a child is seriously ill. I am grateful to him for highlighting the work of the charity sector, which supports so many families in this difficult situation. Of course, he was right that, in an ideal world, we would not want people to have to rely on charity in these difficult situations.
The Liberal Democrat spokesperson, the hon. Member for Wokingham (Clive Jones), spoke about the financial impact of this issue and the delays in the benefits system. I will certainly pass on his comments to the Department for Work and Pensions.
The Opposition spokesperson, the hon. Member for West Worcestershire (Dame Harriett Baldwin), was right to highlight some of the work the Conservative Government did in this area. There is more to do, which is why we have introduced the Employment Rights Bill. She reeled off some of the opposition to it, but the CBI used to oppose the minimum wage, and we all know how that turned out.
I want to start by recognising the dedication and compassion of parents and carers across the country. They make a vital contribution to society, supporting those who need it at the most critical time. Sadly, people in that situation may have to stop work altogether, and they may not get a choice over whether they stop work altogether. Just half of all adult carers are in work, and a quarter are economically inactive.
Evidence indicates that disabled or unwell children are more likely than disabled adults to need continuous care. We also know that more than half of those who provide over 10 hours of care a week report that it impacts their work. That suggests that, as we have heard, the parents of seriously ill children face distinct challenges in balancing work and caring responsibilities. Given that that is clearly an issue, it is important that we think about how to support carers and parents of seriously ill children to balance those responsibilities with other parts of their life, including work.
As the hon. Member for Keighley and Ilkley said, there do appear to be issues in terms of awareness of the support that is already available to parents. So I thought it would be helpful to follow the Opposition spokesperson’s lead and outline what is available and what will be coming on stream shortly.
As has been mentioned, all employee parents are entitled to 18 weeks of unpaid parental leave over the first 18 years of a child’s life. That can be taken in blocks of four weeks, or for longer periods if there is agreement with the employer. The Employment Rights Bill will make that a day one entitlement.
Parents of a child who is disabled or living with a long-term health condition are also entitled to carer’s leave, as we have discussed. That can be taken flexibly in half or whole days or in one go over the course of a year. In line with our plans to make work pay, we intend to review carer’s leave. As Members will be aware, it has been in force for only just under a year, so there is some way to go to understand exactly how successful it has been in supporting carers in the workplace. We will also be engaging closely with smaller employers and sector bodies through that work to ensure that we fully understand the potential impacts and benefits that further policy development could bring.
From April this year, as has been mentioned, employees who are parents of babies in neonatal care will have access to a new entitlement to up to 12 weeks of neonatal care leave and pay. That includes a day one right to up to 12 weeks of neonatal care leave and a pay entitlement for eligible employees. That will enable thousands of parents to care for and be with their children in neonatal care without worrying about whether their job is at risk.
Another area where more support will be coming down the line as a result of the Employment Rights Bill is improved access to flexible working. That will help people to balance work and other responsibilities—for example, where there is a need to care for a child. It was interesting that the employer in Christina’s story just would not have that discussion about flexibility. Hopefully, the new right to flexible working will lead to a different kind of conversation in future for people in that awful situation.
There are existing protections in the Employment Rights Act 1996 for employees suffering detriment as a result of taking leave for family and domestic reasons, or where an employee is dismissed and family-related leave is the principal reason. In addition, parents of seriously ill children may be protected from employment discrimination by association with a disabled person under the Equality Act 2010.
Of course, employment rights are only one part of the much wider package of support available to families when a child is seriously ill. The accelerating reform fund will provide £42.6 million over 2023-24 and 2024-25 to support innovation and scaling in adult social care and to improve services that support unpaid carers.
A range of financial support is also available through social security. Help is provided via disability living allowance for children aged under 16 and via personal independence payments for those aged 16 and above. Those benefits are available if a child’s or young person’s condition or illness is both of a long-term nature and gives rise to daily care or mobility needs. Those benefits are a contribution to the extra costs that may arise, as we have heard. For those in receipt of the highest level of benefit, they mean an extra £9,583 a year tax-free. The benefits are usually paid to the parent of the child to help with the overall family finances, and they are free to use the money as they see fit.
The hon. Member for Keighley and Ilkley and several other hon. Members mentioned that it can take time to access some of these benefits. However, where there is, tragically, an end-of-life diagnosis, claims are fast-tracked, and recipients are guaranteed the highest rate of the DLA care competent or the enhanced rate of the PIP daily living component from the date of the claim.
The Government have recently announced that, from April this year, there will be an increase in the carer’s allowance weekly earnings limit, from £151 to £196 a week. That is the equivalent of 16 hours at the national living wage, and is the largest increase in the earnings limit since the carer’s allowance was first introduced in 1976. It will mean that carers can earn up to £10,000 a year while still retaining their carer’s allowance, which is worth about an additional £2,000 a year.
That is some of the work that is being undertaken, but I understand that some hon. Members wish to go further. As the debate has highlighted, a number of important issues need to be considered, including the scope of any approach and what any entitlement would look like in practice. There is certainly a need to fully understand the extent of the issue. We need to consider the length of time that would be requested, whether it would be paid or unpaid, the process that would need to be followed, who would be eligible to make an application, and whether other interventions may be more effective than an entitlement.
Mr Francois
I thank the Minister for his generous remarks about some of the speeches he has heard. For the record, he took the trouble before the debate began to introduce himself to my constituent, which I am sure was appreciated.
I heard what the Minister just said. I was a Minister once, and sometimes, after a debate like this, I would go away and think, “Do you know what? I think they might have a point.” In the hope that he feels the same way, and having heard what he has just said about looking at potential solutions, can I ask whether he would be prepared, ideally before Easter, to meet my constituent and perhaps myself, along with his officials, for an exploratory conversation based on this debate to see what the art of the possible might be? He has met my constituent informally. Will he now meet her formally? I would be very grateful if he said yes.
Justin Madders
As a former Minister, the right hon. Gentleman will know that the best way to get a Minister to agree to a meeting is to ask them directly in the Chamber. I will, of course, be happy to do that.
I will explain a little more what the Government are looking at in this area. I recently met the Minister for Care, from the Department of Health and Social Care, and the Minister for Social Security and Disability, from the Department for Work and Pensions, to discuss how we will improve the lot of carers and make progress in this area. We are determined to ensure that there are meaningful improvements, and the issues we have debated will certainly be fed into that discussion. We want to make sure that unpaid carers are able to navigate their responsibilities and stay in employment, if at all possible. There is ongoing work in Government on the wider programme, and what we have heard in this debate will certainly add to that. After I have met the right hon. Member for Rayleigh and Wickford, I may have further thoughts to submit to the machine.
It is fair to say that there is a lot going on in this area, and there is a lot to consider. This is an important subject; it is one of the most difficult times in anyone’s life when their child is seriously ill, and we want to ensure that we get the balance right in supporting parents during this difficult time.
Robbie Moore
To sum up, I first want to thank Christina, because without her and the circumstances she has brought to our attention, we would not have had the petition, the over 100,000 signatures that have attached themselves to it and therefore this debate. On behalf of the Petitions Committee, I thank not only Christina but Skye for their absolute courage and endeavour throughout the incredibly difficult challenges that they and their family have had, and for enabling us to bring this debate forward.
This has been a really robust debate—in the politest of senses—in terms of the subjects that have been covered. There has been real recognition of the fact that more data needs to be collected so that we can ensure that the legislation being introduced by Government is practically workable on the ground. We have also covered off the fact that not every employer is necessarily doing the right thing in terms of their own obligations. It is good to see that the Government have recognised that more work needs to be done to make sure that each employer and employee knows their obligations to one another so that, should the difficult circumstances arise where a child is ill, the employer will put out the best protection as quickly as possible to meet their employee’s needs.
I reiterate that there is space potentially to improve the Employment Rights Bill, based on the concerns raised throughout the debate. It is good to hear that the Minister—through my right hon. Friend the Member for Rayleigh and Wickford (Mr Francois)—has guaranteed a meeting. Let all those who signed the petition be well aware that a meeting will follow this debate, and we can only hope that there will be good outcomes from it.
My final point is that, where carers are permitted to have carer’s allowance, they should not have to wait for an end-of-life prognosis for the payment to be fast-tracked. The Government machinery should be able to operate much more quickly, so that the carer of any child who is ill can get the allowance as quickly as possible—certainly within the 90-day period, and not at the last minute.
On behalf of the Petitions Committee, I thank all hon. Members who have contributed, and I thank those in the Gallery—Christina, Skye and their friend—for attending the debate.
Question put and agreed to.
Resolved,
That this House has considered e-petition 638449 relating to career breaks for parents of seriously ill children.