Amend the 28-day rule for the Carer’s Allowance for carers giving hospital care
Just seen this from Debbie Hustings on LinkedIn (Triangle of Care UK Programme Lead; Former NHS England Unpaid Carers Lead (London); Armed Forces Health Champion), I’d no idea about this.
Why the 28-Day Rule for Carer’s Allowance Needs Reform — and How You Can Help
Many unpaid carers in the UK are already providing life-sustaining support to family members often 24/7. Yet current benefit rules can cut off Carer’s Allowance just when the care needs remain as high as ever. That’s because of the way the 28-day rule is applied.
Under existing regulations, if the person you care for (aged 18+) is in hospital for more than 28 days, their qualifying disability benefit such as PIP or DLA usually stops. Because Carer’s Allowance is dependent on that benefit continuing, the allowance stops at the same time.
This assumes that the hospital has taken over all of the care. But that doesn’t reflect reality for many families. Unpaid carers frequently continue to provide essential hands-on support in hospital, including:
• communication assistance,
• feeding and dysphagia support,
• safety monitoring and medication oversight,
• personal care that wards are unable to reliably meet.
For these carers, stopping financial support at the 28-day mark makes little sense especially given the financial pressures and stress that come with long hospital stays.
What the Petition Says
A new petition has been launched calling for the 28-day rule to be amended so that:
• unpaid carers continue to receive Carer’s Allowance beyond 28 days while they are still providing essential care in hospital, and
• NHS trusts are required to confirm in writing when they cannot meet a patient’s care needs and when a carer must stay to provide such care.
Signed and sent a personal email to local MP. I’d encourage everyone to write to their MP to follow up and ensure they are aware of the Petition and ask them to get their colleagues involved as well.
This post also highlights how ‘normalised’ it has become that we’ve become unpaid hospital workers ..or rather, in my case - how I don’t trust care overnight, medication or communication.
There are some lovely people working very hard but the reality, is a lack of trust and care SO I hope this petition reaches 10k at least
@Michael_CarersUK - this makes me wonder if there’s a question or any research around unpaid carers taking care of loved ones IN the hospital? Is it part of the State of Caring Report? Thoughts on these points:
The NHS is the biggest employer in the UK and yet we still feel the need to care for loved ones in the hospital - demonstrates the lack of trust and suboptimal quality of its operations.
Mix in that Carers Allowance is stopped when the person you care for in hospital, but we’re caring for them in hospital = there’s a double-negative-impact on unpaid carers
I think I’m right in saying that children on DLA stay on it for 56 days , after a similar campaign about 10-15 years ago. This to allow parents to stay and reassure their child, and care for them. In dementia cases at the very least, that makes sense.
Hi Victoria - I hope you’re doing well. I passed on your question to Melanie in our Policy team and she suggested that you have a look through our NHS report which is based on data from State of Caring 2025. Melanie said that this report contains some relevant data (e.g. on hospital discharge).
I hope this is helpful but let me know if you can’t find what you’re looking for.
Hi @Michael_CarersUK Thanks, but from all the reports and this one - I don’t think the current questions in the State of Caring, covers the situations where unpaid carers are caring for their loved ones IN the hospital.
There’s an assumption that once in hospital, nurses, doctors are caring for the patient 100%
However, per the petition and @Charlesh47 point about children on DLA there are unpaid carers supporting their loved ones in the hospital and I agree that this makes sense for dementia cases too.
I’ve stayed overnight in hospital twice and was rejected once from being allowed to stay to care for my Dad, because it was ‘against hospital policy’.
The petition is focused on securing carer allowance, but I’m suggesting that there needs to bemore questions and research on unpaid carers needing to care for loved ones in the hospital - in particular for Dementia sufferers, or those with rheumatoid arthritis or other disabilities (like my father) who require help with eating and drinking and toileting.
I lack the trust, confidence, and now, never assume that when a call button is pushed someone will be readily available …perhaps it’s time to dispel the illusion of bedside care post emergency, and at least, give carers their right to stay with the scared child/dementia patient/disabled loved one AND give them at least their carer’s allowance for filling the nurse employment gap!
‘a virtual ward’ at home cannot be the solution in these cases where hospital equipment and rapid access to IVs and meds is needed…contrary to the ‘hospital to community’ push.
What the Petition Says
