Career Breaks: Parents of Seriously Ill Children

Mark Francois Excerpts

Monday 3rd February 2025 Westminster Hall

[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 18^th 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.

--- Later in debate ---

[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.