[Relevant document: Summary of public engagement from the Petitions Committee on employment rights for parents of seriously ill children, HC 587, reported to the House on 29 January 2025.]
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.
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.
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.
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?
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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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.
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.