• Research by Carers UK shows more than half of family carers (56%) were left out of planning for their loved one to leave hospital
• The majority (61%) were not given enough information and advice to care safely
• Health and Care Bill before Parliament sees carers’ rights to support watered down

New research from national charity Carers UK shows the NHS Discharge to Assess model, which sees patients’ ongoing care needs assessed only after they have left hospital, is failing to include family carers in the discharge process and putting patients’ health at risk.

A survey by the charity of nearly 2,000 people in England providing high levels of unpaid care for older, disabled or seriously ill relatives found a quarter (25%) had experienced hospital discharge. It found that the majority were not involved, consulted or given the right information to care safely when their loved ones were discharged from hospital.

The research reveals the devastating impact on carers left unsupported and floundering to meet the changed needs of relatives coming out of hospital, taking on unacceptable levels of care which in some cases were unsafe.

The key findings of the research show:

• More than half of carers (56%) providing significant care were not involved in decisions about hospital discharge
• Two thirds (66%) did not feel listened to about their willingness and ability to care
• A majority (61%) were not given enough information and advice to care safely and well
• Most carers (60%) said insufficient support was provided to protect the health and wellbeing of the patient or their own health
• 82% of respondents said they had not received a carer’s assessment.

Carers’ rights watered down

The predominant discharge model during the pandemic, the Discharge to Assess guidance issued in April 2020 made no mention of carers’ rights by law to a carer’s assessment where they are taking on a new caring role, and to be consulted about whether they are willing and able to care.

Persistent engagement by Carers UK saw carers’ rights finally included in the guidance, 16 months later in July 2021 in line with the existing law.

Helen Walker, Chief Executive of Carers UK, said:

“A patient’s care needs don’t just disappear once they have left hospital – their recovery and health in the longer term is in many cases dependent upon the day-to-day support of a family member at home.

“It is deeply shocking to discover that so many unpaid carers are being cast out of the hospital discharge process when their ongoing support is critical for the patient’s health. It risks patients having to be readmitted to hospital because the right support at home isn’t in place.

“An outline of carers’ rights – by law - to support were included far too late in the Government’s Discharge to Assess guidance. Going forward there needs to be a deliberate, system-wide effort to ensure carers are properly consulted about their relatives’ needs leaving hospital and supported to provide that care safely, if they are willing and able.”

Now, the charity is highlighting its concerns that the Health and Care Bill currently before Parliament repeals an important safeguard in the Care Act 2014. This measure ensures that when carers’ needs are assessed a determination is made about what support to provide to the carer to ensure that the patient is “safe to discharge”. 

Helen Walker continued:

“If the Health and Care Bill passes as is, this will be a major watering down of carers’ rights by the Government and a risk to patient safety.

“Carers already feel invisible in this process when in fact they are partners in care and should be treated as such.

“This Bill is a once in a decade opportunity for the Government to formally recognise the critical role played by unpaid carers supporting their relatives’ health. Following the pandemic carers need a positive legacy that sees their vital role acknowledged throughout the health system.”

Commenting on the report, Mike Adamson, British Red Cross Chief Executive, said:

“If we want people to recover well at home after a hospital stay, it’s obvious that carers need to be involved in the hospital discharge process. This research from Carers UK aligns with our insight with HealthWatch England from last year, which showed too many carers did not have necessary information or contact details after the person they care for left hospital.

“Since then we’ve seen positive changes with the recently updated hospital discharge policy, which includes our recommendations for holistic welfare checks and a direct contact point. We’d like to see these changes included in the upcoming Health and Care Bill and statutory guidance to ensure this progress is set in stone and everyone, including carers, can get the information and support they need after a hospital stay.”

Imelda Redmond CBE, National Director, Healthwatch England said:

“This important research builds on the work we did last year, which showed that many patients and their carers were not receiving the right follow-up support after leaving hospital.

As well as considering the needs of the patients, the NHS hospital discharge model needs to take into account any support needed by carers who may be providing assistance.

While a recent update to national guidance has responded to many of our recommendations and significantly strengthened carers’ rights, this is clearly not always being implemented on the ground. It’s essential that statutory safeguards for carers are maintained as legislation is updated, and that hospitals and local authorities work together to involve carers at every step of the hospital discharge process.”

Read our report on carers' experiences of hospital discharge.