Career Breaks: Parents of Seriously Ill Children

(Limited Text - Ministerial Extracts only)

Monday 3rd February 2025 Westminster Hall

[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.