In this commentary, Kirsty Liddiard, Katherine Runswick-Cole and Dan Goodley use their research findings to critically appraise the employment support proposals for parents of seriously ill children, included in the Department for Business and Trade Consultation into employment support for unpaid carers. They highlight concerns over the potentially restrictive definition of “seriously ill children” and suggest evidence-backed support options to enable parents to stay in work.
Defining “serious illness”- the need for an inclusive, nuanced approach
On 9 June 2026, the UK government launched a consultation on enhancing employment rights for unpaid carers and parents of “seriously ill children” (closing on 1 September 2026). The consultation explores whether current rights, including unpaid carer’s leave and flexible working, are fit for purpose in terms of the support available to working parents of seriously ill children. Potential reforms include: extending unpaid carer’s leave, introducing paid carer’s leave, or creating a statutory ‘right to return’ following periods of absence due to caring for a “seriously ill child”. The consultation also seeks views on a proposal for one-off paid leave for parents of “seriously ill children”.
This proposal responds to the campaign for Hugh’s Law by the charity It’s Never You, which was set up by Ceri and Frances Menai-Davis after losing their six-year-old son, Hugh, to cancer in 2021. While caring for Hugh, they experienced firsthand the financial and logistical strain of managing work and care but found that there was no statutory entitlement to leave from work. This led them to advocate for Hugh’s Law, which could make a positive change in the lives of up to 7,000 children and their families. We welcome the difference this will make to those children and their families’ lives.
At the same time, it is important to recognise that evidence shows there are 99,000 children in the UK living with life-limiting and life-threatening impairments. The charity Together for Short Lives describes four categories of life limiting conditions which are: life-threatening conditions for which curative treatment may be feasible but can fail; conditions where premature death is inevitable; progressive conditions without curative treatment options; and irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health.
As these different categories show, children with life-limiting and life-threatening conditions have very diverse experiences. The consultation asks us to consider how we define “serious illness” and how many days leave parents of “seriously ill children” should be entitled to. We think any definition of “seriously ill” needs to be wide, and nuanced.
For example, in our research we have worked with children and young people who are in palliative care for a long time – palliative care is more than “end-of-life” care. We also worked with children and young people who experience acute periods of illness, followed by long periods of being well; for many children and young people “serious illness” is periodic, fluctuating and unpredictable. “Serious illness” is rarely a contained event. We routinely found throughout the project that children and young people often outlived their prognoses from clinicians, that things change, and that the trajectory of serious illness is not always linear or known.
All families’ experiences are different, and so eligibility to use the entitlement must be wide, and based on their requirements to lead flourishing lives. If the definition of “serious illness” is time bounded, it will exclude children who have short, and often intense, periods of ill health that recur over extended periods of time, often decades. At the moment, it seems that fewer than 10% of children with life-limiting and life-threatening impairments and their families will benefit from Hugh’s Law.
Hugh’s Law proposes that the right to leave and pay (for parents) will extend to children and young people up to the age of 16. This is inconsistent with existing education legislation and policy which entitles disabled children and young people to an Education, Health and Care Plan (EHCP) up until the age of 25. We suggest that these rights should be extended to 25, in line with the support offered by an EHCP.
Key recommendations – workplace support, flexibility, and addressing systemic barriers for parent carers
We welcome the proposals to support employers of parents of “seriously ill” children, their families and employers. However, we would argue that (i) guidance for employers on how to support parents be co-produced with parents; (ii) that flexible working arrangements are always a necessity; (iii) that parents experience a right to return to their same role/post/status after having time away; and (iv) that financial support in the immediacy of crisis/acute illness/admission will always be beneficial to families. Furthermore, more generally, there is a need for greater recognition of the skills that carers bring to the workplace because of their caring responsibilities, such as managing multidisciplinary teams and advocacy.
Finally, we call for a wider consideration of systemic factors which affect all parents of disabled children. Mothers of disabled children routinely leave the workforce entirely because of the lack of accessible and affordable childcare. The data shows that only 16% of mothers of disabled children are in employment, compared with 61-75% of mothers of non-disabled children. In 2025, Freedom of Information data revealed that 5,000 children who have an EHCP do not have a place in school. What’s more, 20,000 children with SEND attend ‘unregistered alternative provision’ settings. These settings are not schools but provide some form of, often part-time, education for children. The consequences of lack of school places are clear. The charity Support SEND Kids found that 40% of parents of disabled children left work altogether and nearly half (48%) reduced their hours or changed to a more flexible role.
There is evidence from research with disabled people that shows that flexible working practices help people to obtain and to remain in employment. However, the research also shows that flexible working is virtually non-existent for new employees. A lack of flexible working is a significant barrier for disabled people seeking employment, but it is also a barrier to work for parents of seriously ill and disabled young people. The unpredictable and often challenging nature of caregiving in this circumstance means that flexibility in employment would likely enable parents to work and care more sufficiently. Researchers argue that the government has a role to play in promoting flexible working more widely for disabled people. We would add that increasing opportunities for flexible working is crucial for parents of seriously ill and disabled children and young people.
Our commentary on this consultation is informed by evidence from a 3 year research project funded by the Economic and Social Science Research Council (ESRC), Living Life to the Fullest: Life, Death, Disability and the Human (ES/P001041/1; Liddiard et al. 2018, 2019, 2022). The Living Life to the Fullest project sought to forge new understandings of the lives, hopes, desires and contributions of children and young people with ‘life-limiting’ or ‘life-threatening’ conditions. With children and young people alongside as our co-researchers – and in collaboration with parents and families – the project was a space which explored experiences of disability from the perspectives of children and young people.
And so we end with the powerful words of Sally Whitney-Mitchell, a young co-researcher in The Living Life to the Fullest project and advocate for children and young people with life-limiting and life-threatening conditions:
Regardless of the length of life or the timescale one has before it ends, each life can be lived to the full, fully completed and that every moment of that life is important no matter how long it is. In regards to the young people living with LL/LTIs that have participated in our project, it is clear that every moment up to the point of death is important, valued and lived fully. The provision of palliative care and hospices for patients allows this ‘fullness’ of living and allows them to “live the best life they can
(Whitney, 2019).
References
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Liddiard, K., Goodley, D., Runswick-Cole, K., Whitney, S., Vogelmann, E., Watts, L., Aimes, C., Evans, K. and Spurr, R. (2022) Living Life to the Fullest: Disability, Youth and Voice. Bingley: Emerald Publishing.
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Whitney-Mitchell, S. (2019) Death and dying: it’s biography not biology that matters most at the end. Online. Available from: https://livinglifetothefullest.org/2019/02/04/death-and-dying-its-biography-not-biology-that-matters-most-at-the-end/#:~:text=That%2C%20regardless%20of%20the%20length%20of%20life,death%20is%20important%2C%20valued%20and%20lived%20fully.
About the Authors
Kirsty Liddiard is a feminist disability studies scholar and disabled researcher whose co-produced research centres on lived experience, emotion and embodiment as core axes through which to understand the everyday lives of disabled people and their families.
Kirsty co-directs the university’s Participatory Research Network (PRN), a university-wide, cross faculty initiative that nurtures and supports participatory research and co-production approaches across the University of Sheffield. To learn more about PRN, please click here.
Professor Katherine Runswick-Cole has extensive experience of working alongside children, young people and adults with learning disabilities, their families and allies in research. She has published widely in the areas of: critical disability studies; disabled children’s childhood studies; inclusive education and care. She is the mother of two adult children, one of whom has the label of learning disability.
Professor Dan Goodley is interested in theorising and challenging the conditions of disablism (the social, political, cultural and psycho-emotional exclusion of people with physical, sensory and/or cognitive impairments) and ableism (the contemporary ideals on which the able, autonomous, productive citizen is based). He draws on ideas from critical psychology, medical sociology, medical humanities, philosophy, sociology and education. A key intellectual project relates to exploring the ways in which critical disability studies can disrupt and change knowledge within education, medicine and science and technology.
