Help us to campaign for a stepchange in the support unpaid carers receive from the NHS.
There are 4.7 million unpaid carers in England and the value of carers’ support is worth £152bn in England alone. This is the same as the budget of the NHS. Unpaid carers outnumber health staff by around 3:1 and yet they often feel invisible and unsupported.
Carers UK is campaigning for a series of amendments to the Health Bill (NHS Modernisation Bill) 2026, which would provide unpaid carers with the right to a break, improve information and advice from the NHS as well as ensuring that health systems routinely identify and look after the health and wellbeing of unpaid carers.
The Bill presents an important opportunity to help tackle key challenges that unpaid carers face that we’ve highlighted most recently in our evidence form carers – A fresh new approach to supporting unpaid carers. We want to see carers’ vision for the NHS turned into a reality. Carers tell us they often feel invisible and unsupported at key points by the NHS. We want to improve support offered to unpaid carers by the NHS, from better identification, to measures to improve their health and wellbeing and the provision of key information and advice to help them care safely and well. We are also using the Health Bill as an opportunity to strengthen carers’ access to breaks and respite, seeking a legal duty to provide breaks where these have been identified as a need in the Carer’s Assessment.
We are therefore campaigning for the following amendments to be introduced:
- Clarity on access to the Single Patient Record for unpaid carers, after the right permissions have been granted.
- Duty on Integrated Care Boards (ICBs) to identify and record unpaid carers
- Duty on ICBs to promote the health and wellbeing of carers
- Duty of health bodies to provide information and advice to carers
- Right to a break for unpaid carers
We are also supporting amendments proposed by other organisations, such as National Voices, which would protect the independence and accountability of patient and carer voice in health services – and ensuring that feedback and complaints get acted on.
These amendments would make a significant difference to the way that the NHS supports unpaid carers.
Identification
Currently, just one in five carers are identified by their GP practice, meaning around 1 million unpaid carers are missing out on support such as priority vaccinations, referrals to Carer’s Assessments and inclusion in discharge planning. The duty for Integrated Care Boards (ICBs) to identify and record unpaid carers could be a real gamechanger for unpaid carers in accessing this vital support.
Information and advice
Carers often undertake complex tasks that would typically be carried out by healthcare professionals such as administering medication, with little training or support. Placing a duty on health bodies to provide information and advice, would allow carers to safely provide care, helping keep those they care for out of hospital.
Improving health and wellbeing
Carers are substantially more likely than the general population to experience poor physical and mental health outcomes. Placing a duty on ICBs to promote the health and wellbeing of unpaid carers would help prevent carer burnout and protect the sustainability and long-term resilience of our NHS and social care services.
Right to a break
Only a small number of carers receive a Carer’s Assessment every year and of those, around 7 in 10 only get signposting and advice rather than actual support, such as respite and breaks. We are looking to strengthen legislation to ensure that carers have a right to a break following a Carer’s Assessment, where there is an identified need. r voice.
The Health Bill introduces the legal framework to create a Single Patient Record, which would bring together health and social care records in one place. We are campaigning for clear and unambiguous access to the Single Patient Record for unpaid carers.
Carers tell us that they are tired and exhausted by having to repeat information time and again, chasing test results and appointments on behalf of the person they care for, having to coordinate care when the NHS fails to do so and right errors and mishaps when information is not shared properly. 13% of carers spend 40 hours a month on NHS admin. The Single Patient Record offers an opportunity to make a real difference to unpaid carers and the amount of time they would need to spend coordinating care if they are given access, with the right patient permissions in place
The Bill also includes explicit provisions to ensure that unpaid carers continue to be involved and consulted following the abolition of NHS England and Healthwatches. We are concerned, however, that the abolition of Healthwatches also removes independence and transparency from the system. We would like to ensure that the right structures and safeguards are in place so that feedback and complaints from patients and carers get acted upon. Carers UK is supporting National Voices amendments to strengthen accountability and action in response to patient and care
If you would like to read about these amendments in more detail please see our briefing here.
How can you support our campaign?
We are asking organisations to demonstrate their support for these amendments by adding their name to our campaign. You can register your support by completing our online sign-up form.
We are encouraging individuals to contact their MP and urge them to support these amendments to build widespread Parliamentary support. You can email your MP using our template letter on our webpage here.