We all want to see more joined-up care: patients, carers, other service users, government and professionals are all signed up to it. But who is responsible for sorting out integration, and who will be accountable, asks National Voices director of engagement Jules Acton.
National Voices, the Royal College of GPs and the Alzheimer’s Society explored this question at the recent party conferences through three fringe events.
We posed a direct question – what is your role in joining up care? – to some key players in social care and health. They included RCGP chair, Dr Clare Gerada, local councillors and national party representatives including health minister, the Rt Hon Simon Burns MP.
Barbara Pointon set the scene. Barbara is a former carer to her husband, Malcolm, who lived with Alzheimer’s for 16 years. She held up an illustration of Malcolm’s dizzyingly complex “web of care” and gave a heart-rending account of the challenges they faced in navigating: “primary care, secondary care, domiciliary social care, respite and day care, benefits, residential and nursing home care, A&E, community physical, social and mental health care, palliative care, specialist nursing care and family social care”.
Dr Gerada, who was on the panel at all three events, boldly rose to the challenge with a clear statement of her responsibility as a GP: “My job is the single point of contact. My job isto make your life better. I’m your advocate”. Her straight-talking was appreciated by the audience and there was general consensus that patients need a single point of contact to navigate both health and social care for them.
However, many people pointed out this isn’t working currently. Many GPs aren’t carrying out this role and other staff, including specialist nurses and charity advocates, are often better at it. Dr Gerada agreed to take a look at ways forward, taking dementia as an example, to find out who should be the best main point of contact in the future.
Our national party representatives included the Rt Hon Simon Burns MP; Liberal Democrat health spokesperson Baroness Jolly and Labour health spokesperson, Baroness Thornton. There was general agreement - across the three events - that their role as legislators is to put in place an effective framework to make integration work but we heard much less clarity on the levers for integration and how they might work on the ground under the proposed reforms.
Health minister Simon Burns stressed the government’s commitment to looking at the problem of fragmented care for people with long-term conditions and improving social care, including taking account of the Dilnot review on financing care. Meanwhile, the second phase of the NHS Future Forum was looking at how to achieve more integrated system of care. He was challenged on how the Health & Social Care Bill would translate integration into reality. For example, under the “any qualified provider” reforms, how can patients make an effective choice in an area where there might be, say, 30 local providers – e.g. physiotherapists?
He was also challenged on the role of Monitor and the overall tension between the government’s aims of integration and competition. The desperate under-funding of social care and the need to drive forward the Dilnot recommendations came up several times.
Baroness Thornton criticised the Health & Social Care Bill, showing particular concern that it will erode the accountability of the Secretary of State. Baroness Jolly said the bill could be improved by firming up the responsibilities of the secretary of state, also by ensuring we have good quality data, collated centrally. She wanted to ensure local HealthWatch has some teeth - with breadth and depth of membership and the ability to refer back to the Care Quality Commission. She, too, wanted to understand more about Monitor and the levers it will use to integrate care.
The councillors on our panels were all members of their Local Government Group’s Community Wellbeing Programme Board:David Rogers, Liberal Democrat (East Sussex & Lewes); Linda Thomas, Labour (Bolton) and Dr Gareth Barnard, Conservative (Bracknell Forest). There was a marked difference in perceptions of their own roles under the reform proposals; the degree of autonomy and power local authorities will have and how they will relate to other local bodies.
Cllr Rogers said GPs are the key players in joining up care although many organisations will be involved. He felt pooled and shared budgets could help. However he felt full integration may never be possible while NHS care is free at the point of need and social care is not.
Cllr Linda Thomas said Health & Well Being Boards should be the arbitrator between what the GPs deliver and what carers need. She would like to see the government giving overall responsibility for coordinating care to local authorities – with the resources to match.
Cllr Dr Gareth Barnard said people in local government need the courage to disinvest in some services and reinvest in others. He felt confident with the framework under the Bill, adding that Health & Wellbeing Boards must have a strong performance management framework and adequate resources. He said overview & scrutiny committees have a key role in talking to service users and dissecting what isgoing on.
In conclusion, all three events demonstrated a passion to make to make integration happen. There were some clear demands: we need more clarity on who is responsible for what; we need to ensure they listen to patients, carers and other service users; and we need to ensure they have the powers to make integration work.
We need to see ownership. We need to see leadership. And we need to see progress. The cost in not getting this right over the next few months is immense, both in terms of suffering and also in terms of wasted resources. On this we’ll give the last word to former carer, Barbara Pointon:
“Over our 16-year journey I lost count of the number of battles I had to wage with officialdom on so many fronts…The big divide between health and social care, although it’s a bit narrower than it was, still creates mountains of bureaucracy – both paperwork and electronically and sucks up hours of professional time spent in meetings. Many assessments seem to me to be not so much about a patient’s needs, but who should pay for the care. I was very grateful to all the health and social care professionals – they were magnificent. But both they and I frequently agreed that the fragmented systems of care, crawling under layers of management and paperwork, is frankly … no longer fit for purpose, especially for an ageing population with multiple conditions – its inefficiency must cost millions.”