There is no statutory paid leave for this, and Hugh’s Law is still only a proposal. Here is what you can claim — in time off, and in money most families are never told about.
Higher rate can be claimed from age 3, lower rate from age 5. It is assessed separately from the care part and is not automatic even under the end-of-life rules.
Time in hospital at their bedside counts. This is what unlocks Carer’s Allowance.
| Unpaid time off | Pay forgone | After tax and NI |
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If your child becomes seriously ill, there is no statutory paid leave in the UK for you to take. That is the plain answer, and it is worth stating first because a great many families discover it at the worst possible moment.
There is one exception. If your baby was admitted to neonatal care within 28 days of birth and stayed seven days or more, neonatal care leave gives up to 12 weeks of paid leave. A child diagnosed at three, or six, or fourteen falls outside it entirely.
If you came here looking for a Hugh’s Law entitlement, we would rather tell you plainly that there is not one yet. Hugh’s Law is a campaign, not a right. It is named for Hugh Menai-Davis, who died of cancer aged six after his parents spent long periods at his bedside, and it calls for statutory paid leave for parents in exactly this position.
The government consulted on it between 9 June and 1 September 2026, alongside proposals on paid carer’s leave. The consultation canvassed durations from one week to more than twelve, and pay anywhere from the flat statutory rate to 90% of earnings. Nothing was decided, no figure was fixed, and legislation was not expected before 2027. Until something is enacted, the entitlements below are what exist.
Four rights, all day-one, none of which an employer can simply refuse. Unpaid parental leave gives 18 weeks per child up to their eighteenth birthday, capped at four weeks a year — and where a child is disabled it can be taken in single days rather than whole weeks, which makes it genuinely usable for appointments. Carer’s leave adds a week a year, in half days if you want. Time off for dependants covers the sudden emergencies, with no annual limit and no notice required. And a flexible working request is often worth more than any of them for a long illness, because a permanent change to your hours lasts.
They stack, so you can use all four in the same year. They are also, apart from neonatal care leave, all unpaid.
This is where the real value sits, and it is heavily under-claimed. Disability Living Allowance for children is not means-tested — your income and savings are irrelevant — and pays a care component of £30.30, £76.70 or £114.60 a week, plus a mobility component of £30.30 or £80.00. At the maximum that is over £10,000 a year.
Where a child has a progressive condition and death can reasonably be expected within 12 months, the Special Rules for End of Life apply: the highest care rate is awarded automatically, the three-month qualifying period is waived, and the claim is fast-tracked to a decision within days. A clinician completes an SR1 and usually submits it directly.
The care component is also the gateway to Carer’s Allowance — £86.45 a week, about £4,495 a year, for a parent providing 35 hours of care where the child is on the middle or highest care rate. Time at a hospital bedside counts towards those 35 hours, as does overnight supervision and time spent arranging care, and many parents are well past the threshold without having counted. The one catch is an earnings limit of £204 a week, which applies to net pay after tax, National Insurance and half of any pension — a distinction that wrongly puts a great many people off claiming.
An unclaimed or refused DLA award therefore costs a household twice: the allowance itself, and the Carer’s Allowance it would have unlocked. Claims can be made again, and awards are frequently revised as a condition progresses. Contact and Citizens Advice both help with the forms free of charge.
No — and that is the gap this page exists to describe. There is one exception: if your baby was admitted to neonatal care within 28 days of birth and stayed seven days or more, neonatal care leave gives up to 12 weeks of paid leave. After that, nothing.
A parent whose child is diagnosed at three, or six, or fourteen has no statutory paid entitlement at all. What exists — unpaid parental leave, carer’s leave, time off for dependants — is unpaid, and between them they add up to well under half a year even if you use every day.
It is not law. Hugh’s Law is a campaign, named for Hugh Menai-Davis, who died of cancer aged six after his parents spent long periods at his bedside. It calls for statutory paid leave for parents of seriously ill children — exactly the gap described above.
The government consulted on it between 9 June and 1 September 2026, as part of a wider consultation on employment rights for unpaid carers and parents of seriously ill children. The consultation canvassed durations from one week to more than twelve, and pay ranging from the flat statutory rate to 90% of earnings. Nothing has been decided, no duration or rate has been fixed, and legislation was not expected before 2027.
If you have arrived here looking for a Hugh’s Law entitlement, we would rather tell you plainly that there is not one yet than imply otherwise. What you can claim today is above.
Four things, all day-one rights, none of which your employer can refuse:
They stack. You can use all four in the same year.
Disability Living Allowance for children is the main benefit here, and it is not means-tested — your income and savings are irrelevant. In 2026/27 it pays:
At the maximum that is £194.60 a week, or over £10,000 a year. The care component normally requires the child to have needed the help for three months and to be expected to need it for six more — but see the end-of-life rules below.
Where a child has a progressive condition and death can reasonably be expected within 12 months, the claim goes through under the Special Rules for End of Life. Three things change:
You do not fill in the medical evidence yourself. A consultant, GP or specialist nurse completes an SR1 form and usually submits it directly to the DWP. The mobility component is not automatic under these rules and is assessed separately.
£86.45 a week — around £4,495 a year — and it is not means-tested either. Three conditions:
The care rate is the gateway: without it at middle rate or above there is no Carer’s Allowance, which is why an unclaimed or refused DLA award costs a household twice over. Note that the earnings limit applies to net pay, after tax, National Insurance and half of any pension contributions — the carer’s calculator works that out, and a great many people rule themselves out by comparing the wrong number.
Yes. Time spent at a hospital bedside counts, as does supervision overnight and time spent arranging their care and appointments. It is not limited to hands-on personal care at home.
A great many parents are well past 35 hours a week and have simply never counted, because nobody told them the time counted. If you are close to the threshold it is worth going through it properly with Carers UK, who will do it with you free of charge.
One thing to check: if your child is in hospital for a long stay, their DLA can be suspended after a period, which would affect Carer’s Allowance too. Ask the DWP or a benefits adviser about your specific situation rather than assuming either way.
For the statutory rights above, they cannot simply refuse. Carer’s leave and time off for dependants cannot be refused at all; unpaid parental leave can only be postponed for up to six months; and a flexible working request has to be considered properly, with a decision inside two months and consultation before any refusal.
Beyond that it comes down to their policy. Many employers have compassionate or special leave schemes considerably more generous than the statutory floor, and almost none volunteer them — ask, and get the answer in writing. Acas advises free of charge if a request is refused.
Several things worth pursuing, none of which arrive automatically:
Also check whether your child qualifies for a carer’s assessment from the local council in your own right, and whether hospital travel costs can be reimbursed through the NHS Healthcare Travel Costs Scheme.
If a child dies under the age of 18, their parents are entitled to parental bereavement leave — two weeks, a day-one right, paid at £194.32 a week or 90% of earnings if you qualify. Both parents can take it independently, it can be taken as two separate single weeks, and it stays available for 56 weeks afterwards, so nothing has to be decided quickly.
It is worth knowing this exists in advance, because a great many families take a few unpaid days under emergency leave without ever being told there is a paid entitlement.
All free and independent:
Carer’s Allowance is the biggest single thing most families here are missing — and the £204 limit is not what it looks like.
