Within the Health and Care Bill, there are clear responsibilities set out for NHS trusts to involve carers, including young carers, in the planning and delivery of discharge from hospital. By Jen Kenward

As we begin to move forward from the full effects of the covid-19 pandemic and take stock of lessons learned, we also need to prepare for the legislative changes set to be implemented as part of the Health and Care Bill. The Bill has now achieved Royal Assent and is passing into law, it is encouraging to see new legal duties for the NHS to involve carers throughout this legislation, going some way to levelling the sector up with its local authority counterparts.

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The Bill will specifically place new duties on NHS England and Improvement to involve carers in a more strategic way through public engagement; these new provisions also require involvement with carers in relation to preventive treatment or care, diagnostic processes as well as the ongoing care and treatment of the person that they care for. Importantly within this legislation there are clear responsibilities set out for NHS trusts to involve carers, including young carers, in the planning and delivery of discharge from hospital.

Research published by Carers UK, in September 2021 showed that “of nearly 2,000 people in England providing high levels of unpaid care for older, disabled or seriously ill relatives a quarter (25 per cent) 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”. During the pandemic the “Discharge to Assess” model was primarily used and whilst for many people this enabled a more satisfactory and swift discharge from an inpatient setting, for carers of people with more complex needs it often failed to acknowledge or require a focus on their rights to assessment or ability and willingness to provide ongoing care.

The key findings of the Carers UK research were:

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

The findings of this research were very much in line with an earlier report on hospital discharge, published by Healthwatch in 2020, we clearly need to do better.

So how will the new legislation help close this gap in care planning and delivery? The first thing is perhaps to acknowledge the issues with discharge from hospital are not new. The challenges of finding appropriate, timely, social care placements and support packages is well documented and the experiences of the pandemic have magnified these challenges in such a way that the impact on unpaid carers, who have taken on so much more during this time, has become critical as their own health and wellbeing has been affected.

In a previous article I highlighted the opportunities that genuine integrated working across systems presented and it is here that I think we can really start to deliver on these new duties. As the emerging guidance for Integrated Care Boards is developed, we are seeing carers referenced more consistently. Key areas of work such as urgent care response and virtual wards that now clearly reference carers are really positive indicators of a shift from seeing recognition and support of carers as an add-on to something that is integral to business as usual and critical to planning of safe and effective care.

By embedding the identification and support of carers into core business, we start to join the dots and work towards continuity of practice between settings across systems that can see carers own health and wellbeing supported alongside the person they care for. Whilst the Health and Care Bill has identified some key areas of practice, they do not function in glorious isolation, they connect, they “integrate” across systems. As we think through how we transform and improve experiences of stages of care, such as discharge from hospital, and work to recognise the value, input and expertise of carers we must deliver this in a way that is connected to the purpose of integrated care systems. In short, if we don’t join the dots, we won’t benefit from the full picture.

NHSE/I continues to support the “System Led Support for Carers” award with the HSJ. Over the years we have seen fantastic examples of system-wide approaches that truly recognise the vital role unpaid carers play in supporting family or friends who would not cope without their support. We know the economic value of their input has helped to sustain health and care services and the pandemic has certainly magnified this and again through this most challenging time we have witnessed significant innovation and action. Entries for this year’s award are open until 10 June, it recognises ICSs working to deliver the long-term plan ambitions to support unpaid carers with resources and structures which demonstrate real integration across organisations such as the NHS, local authorities, voluntary and private sector providers System Led Support for Carers Award | HSJ Awards