Caring for the carer – what’s in it for integrated care systems?

As a unpaid carer for over 50 years, caring for my husband, mum and other relatives, I know that looking after someone with mental health issues can have a huge impact on the whole family.

I realised I was an unpaid carer when social care staff helped me to understand that what I was doing in providing 24/7 care for my mum was over and above me being her daughter. They helped me apply for a Carers Allowance and get practical help from social services.

We don’t always hear from carers about the aspects of caring relationships that can impact upon their life, such as relationships with other family members and friends, and career prospects, often leading them to become terribly isolated.

Unpaid carers can suffer breakdowns and young carers are more at risk of developing anxiety and depression. The Health and Care Act 2022 says that carers must be asked if they are willing and able to care. They may be willing and not able, or able but not willing and if so, the statutory duty to care rests with the local authority.

Health and care services care for the individual but it’s also important that they recognise them as members of families and acknowledge the impact of that.  Family members often take on the additional responsibility of caring for a family member whilst not identifying themselves as a carer.

Recognising yourself as a carer is the first step to getting the support you need. I’m passionate about that and all the issues that relate to carers and their families such as health, employment, personal relationships and relationships with children.

Unpaid carers have a monetary value which Carers UK estimates as £162 billion a year yet they receive little support or recognition of the huge savings they contribute to the health and social care system. They deserve to be valued and supported and its vital that integrated care systems (ICS) collaborate to care for the carer.

I am one of seven public advisors for NHS England, recruited to bring our experience and perspective to help inform national strategy, policy and implementation. After thirty years of campaigning locally, I welcomed the opportunity to share my experience nationally.

I would encourage ICSs to reach out to people with lived experience like me. With a grass roots knowledge of unpaid caring, we can draw the various threads together and help systems realise the benefits of identifying, listening to and caring for all carers.

Integrated health and care services can make a huge difference to carers, by helping them to identify as a carer in the first place and offering them support they have a right to. ICSs have a real opportunity here to make a difference, to encourage best practice and positively influence the lives of carers and their families.

Historically, when there has been structural change in the NHS, carers have had to fight to have their voices heard. Its positive that the Health and Care Act 2022 puts duties on ICBs to involve unpaid carers and those they care for in decision-making.

Carers must now be involved when decisions are made about changing or developing a service and there is an expectation they will be involved with their loved one’s prevention, treatment, diagnosis and care. Carers also have important new rights, such as the right to Carers Leave, and they must also be involved if their loved one is being discharged from hospital.

These are all positive steps forward, but I would also encourage ICSs to provide resources to support carers as this is cost effective and will save money in the future because without support, we know the worry and stress can lead to physical and mental health problems for carers down the line.

It’s important that systems recognise the difference between unpaid carers, as enshrined in law, and care workers and not conflate the two. ICS strategies must understand the circumstances and needs of unpaid carers and those of paid care workers and that they are not the same.

By law systems need to recognise carers as partners to be listened to and fully involved, but I would also like to see ICSs train staff about carers’ rights and one day see the status of carer become a protected characteristic.

There have been positive steps forward and I will be watching with interest how ICSs respond to their duty to care for carers also and how well CQC monitors these new duties.

More information about ICBs legal duty to involve carers is set out in the Statutory Guidance ‘Working in Partnership with People and Communities’

Janice Clark

Janice has been an unpaid carer for over fifty years caring for relatives who could not manage without her help because of disability and illness. Her areas of interest in health and social care are mental health care; dementia care; the care of older people and cancer care. Her sons and grandchildren have been, or are currently, young and young adult carers. This is an area of carer’s needs that is close to her heart, and she champions the rights of families and children who provide care to be recognised and better supported. This involves encouraging education, the NHS and social care to work closely together in a whole family approach.