The Health Bill contains some important provisions and with the right clarifications, could be life-changing for England’s 4.7 million unpaid carers. However, it needs to go much further to make a transformational difference, to fully deliver better outcomes for unpaid carers, as well as patients and staff.  

Below, Emily Holzhausen CBE, Director of Policy and Public Affairs, shares detailed thoughts on the potential this bill has to create positive change and outlines where the bill needs to go further to ensure carers are properly identified by services, receive the right advice, and support with their own health and wellbeing.

The Single Patient Record

“The Single Patient Record, which will combine health and social care records, could bring about real change for carers – by cutting down on the number of times they have to repeat information, making sure they can see test results quickly, and help manage care remotely. 

“Carers tell us they are fed up, exhausted and emotionally drained by having to repeat information and needing to coordinate so much. Nearly four out of 10 carers are overwhelmed and frustrated by the administration involved in caring. A staggering 13% of unpaid carers providing substantial care say they spend 40 hours a month or more on administration.

“This could help to reduce stress placed on families, delivering better outcomes for everyone. We asked the Government to give us concrete assurances that regulations to make patient information available to other people who act on the patient’s behalf would include carers. It was really welcome to hear the Minister, Karin Smyth MP, confirm that this was their intention, recognising the role that carers play in supporting others.”

Carer involvement and feedback

“In abolishing NHS England and Healthwatch, the landscape of carer involvement in the NHS will also change. The Government has ensured that its new proposals include carer involvement explicitly, which will make a difference. We’re pleased that the Government has retained this in the new provisions, because too often carers feel invisible and overlooked. However, it’s not enough, given that Healthwatch, an independent body is being lost, and there are no real mechanisms to make health bodies and local authorities act on feedback.

“The system has a lot to learn from unpaid carers since as they provide the bulk of care – a staggering £152 billon worth a year in England, outstripping NHS staff by 3:1. With health bodies and local authorities effectively marking their own homework, carers need strong assurances in law that their feedback will make a difference.  Only 18% of carers think a complaint to health and social care will be acted on. This is simply not good enough and leaves carers feeling irrelevant and powerless to change a system that doesn’t always work.”

Carer identification and support

“Carers UK wants the Bill to go further in several areas; carer identification, carers’ health and wellbeing, and the provision of information and advice to carers. Local authorities have a duty to provide this, but it’s extraordinary that a similar direct duty does not exist for the NHS. This has to change.”

“Only 14% of carers were given the right information, advice and support to care safely and well at the point of hospital discharge – a shockingly low figure. In some cases, this led to readmissions to hospital. When you are new to caring and responsible for care, it can be complicated, bewildering and deeply scary. The NHS often assumes you know what you are doing and this is not always the case.

“It’s vital that we place the same duties for local authorities to provide information and advice to carers on NHS bodies, and a direct duty to promote carers’ health and wellbeing. Caring is a social determinant of health and yet key parts of the NHS do not see carers’ health promotion as their business. 72% of unpaid carers are in poor health compared with 61% of non-carers. 

“It’s really not too much to ask when carers are doing so much in the first place.  We will see better outcomes for everyone if we do; patients, staff and, of course, carers.”

The right to a break

“The final provision Carers UK is seeking within the Bill is a right to a break. If you are caring for 24 hours a day 7 days a week, this can be key to preventing carer burnout and yet we know that they are in short supply. 40% of carers haven’t had a day off for more than a year. These new rights have been gained in Scotland and breaks come high up on carers’ agendas.

“The Care Act 2014 theoretically creates the architecture for providing breaks to carers but stops short of saying that carers have a right to time off.  There are several ways that this could be delivered and this would need to be funded properly. Carers have been asking for a right to a break for years. This is the Government’s opportunity to turn this into a reality for many carers.”