Through the recognition and support of carers and engagement of them in our planning we can build our health care systems in a way that is truly integrated and focussed on genuine need and that will be used effectively by our communities. By Jen Kenward
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In February the government published its white paper on integration, it highlighted the huge challenges experienced across health and care systems and set out legislative proposals for a Health and Care Bill, aiming to build on the collaborations seen since the start of the COVID pandemic and shape a system that’s better suited to the changing needs of our communities. But, do we really understand what integration is, what it means to those living in our communities with complex needs and have we listened to the true experts by experience, unpaid carers, to fully appreciate the impact that integration can have? And, critically, have we understood that many unpaid carers have been masterminding integrated care for the person they support for years?
In a previous thought piece, I reflected on the vital role that unpaid carers play in sustaining health and care systems. We know the fiscal value of carers input and we cannot match or replace the personal role that they play in supporting family members and friends. We also know that without unpaid carers we just would not cope, and this reliance has been magnified during the pandemic as services were interrupted, delivery modes changed or in some cases withdrawn.
I recently spoke to a carer about her experiences of looking after her daughter, who was born with complex physical disabilities as well as a neurodiverse condition. She described how she has brokered and managed up to 32 different services around her daughter at any one time; co-ordinated hospital visits, inpatient stays involving high risk surgery and the management of discharge processes to ensure her daughter has been safe, secure and able to live in the family home where she feels most comfortable. Often, she has done this despite health and care services, rather than because of their support. Whilst this is a very focussed example of someone managing this situation, it is also a masterclass in integration – this mum gets it.
Individual focused
The lesson we can take from these individual experiences is that integration will only work if it is based around the needs of our communities and the people within them that require the most complex support. Whilst we need a ‘system’ approach, it has to have the individual in mind. What is also clear is that we need to make sure everyone has an equal place around the planning table, with the example of 32 services supporting one person it is vital to recognise that this crosses, health, social care, local authority functions, voluntary sector organisations and, most importantly, the unpaid carer who has understood the critical need for the individual. Can we afford to leave out the experts on our doorstep? I am hoping the answer is no.
With health and care services looking at how we recover from the impact of Covid-19, planning for winter pressures and reviewing lessons learned in the past 18 months, there will no doubt be challenging questions about capacity, embedding digital solutions and planning how we reinvigorate services. Across the country we have seen phenomenal work going on to support unpaid carers, recognising that this group of people have taken on more than ever before, their numbers have increased as the pandemic has changed the lives of so many and we have the opportunity to pinch these innovations with pride and firmly place support for unpaid carers in our core business. Through the recognition and support of carers and engagement of them in our planning we can build our health care systems in a way that is truly integrated and focussed on genuine need and that will be used effectively by our communities.
This week I will be part of the panel judging this year’s HSJ award for ‘System Led Support For Carers’ an award that recognises Integrated Care Systems for the work they are doing in collaboration with key stakeholders to improve the identification of and support for unpaid carers, including improving access to services for this vital group of people. We know that unpaid carers often experience poorer health than their non-carer peers, so shining a light on systems that recognise this and are proactively looking at how to learn from and include carers tells a powerful story. We will not get integration right if we don’t offer a place at the planning table to the real experts, our unpaid carers.
