Why don’t they listen to what carers have to say?

True integration involves the NHS, local councils and families

Families are the biggest providers of care, yet carers can find themselves cut out of decision-making and bounced between different bureaucracies

Norman Lamb and Heléna Herklots
Guardian Professional, Wednesday 15 May 2013 08.30 BST

The 6.5 million carers in the UK providing unpaid care to their loved ones outnumber all NHS and social care staff put together.

Caring is a fact of life. Whether a partner falls ill, or a parent needs support as they grow older, or a child is born with a disability – it will affect us all at some point.

At times like these, families pull together to support each other. But too often they find that the services there to support them don’t do the same.

If you care for someone and they need support, you don’t really care whether it is the NHS, a local council or nearby mental health services that provides it – all that matters is that it is the right support, on time, from a caring and well-trained professional.

At the moment, families and carers can feel bounced between different bureaucracies, none of which seem to want to take responsibility. People are cut out of decision-making and find themselves drifting through an incomprehensible labyrinth of bureaucracy.

Better integration can solve that problem because it leads to the NHS, local councils and mental health services working better as a unit rather than as three separate entities. When services are integrated, all that matters is making sure that older, ill and disabled people and their families get continuous care regardless of their circumstances.

True integration cannot happen without the respect and involvement of the biggest providers of care in the country – families.

With 6.5 million carers in the UK, family members providing unpaid care to their loved ones outnumber all NHS and social care staff put together. Yet families often don’t feel part of the team. While they often say that individual doctors, nurses, social workers and care assistants deliver fantastic support, families can feel that health and social care services work for the system, not for them.

Recent investigations into Mid Staffs and Winterbourne View have shown the importance of NHS and social care services being open and transparent, always responding with clarity and urgency when families raise concerns about the quality of care.

But it isn’t just concerns that must be listened to. Providing the best care means listening to and respecting families’ wishes every step of the way.

That approach isn’t just the right thing to do. It is also very cost-effective.

For example, look at the issue of someone being discharged from hospital. If that is poorly handled – if the person’s family is excluded from plans, if they aren’t given information about local services and how to stay healthy – then it can lead to the person being re-admitted to hospital only a few days later. That cycle can and does go on and on and on, costing thousands of pounds and leaving the person’s family helpless.

In the worst cases, failing to support families can push them to breaking point and result in hospitals admitting both the carer and the older or disabled person. This situation is unacceptable but it is also preventable: in a recent Carers UK survey, almost two-thirds of carers supporting someone after a hospital discharge said they had either been consulted late or not at all, and one in three carers caring for someone recently admitted to hospital in an emergency said that it could have been prevented if they had had more support at home.

We need a transformational shift to a more integrated system, so that care is joined up and designed around the needs of the person.

Working with families from the start allows them to care better. The right advice and planning, along with integrated services, allows families to care for their own lives as well as their relatives’.

Norman Lamb is minister for care and support. Heléna Herklots is chief executive of Carers UK
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