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What might Integrated Care Systems mean for people with a learning disability, autism or both and the managers of the services they rely on?

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By Clive Parry, England Director at the Association of Real Change (ARC England)

Typing Integrated Care Systems (ICS) into Google results in a page in which all but one website places healthcare front and centre, with no mention of social care.

The oddity is a Wikipedia entry which, when you open it, describes ICS as bringing together “the organisations planning, buying and providing publicly-funded healthcare – including mental health and community care services – to the population of a geographical area”.

The National Health Service (NHS) ICS leadership page tells us that “ICS Leaders and Independent Chairs for NHS England and NHS Improvement Integrated Care Systems (ICSs) and sustainability and transformation partnerships (STPs) have responsibility for the future of the health and care (emphasis added) systems within their region, to improve the health and care of the population covered by each respective system” and the Chair’s role is “to oversee greater partnership working between the NHS and Local Authorities”.

Social care is mentioned as a member of a partnership but not, apparently, as an equal, therefore raising a concern about how ICSs will balance health and social care priorities for people who depend on local authority commissioned services.

When the services and support that people with a learning disability rely on is wrapped up in the all-encompassing ‘social care’ heading (which for many people means residential services for older people) what they need from their commissioners and the services they use become even less visible and therefore even less well-understood.

It will also concern the leaders and managers of services who want to provide the kind of high-quality person-centred support that is built on the principles of choice and control.

ICSs won’t be the first time that a concerted effort has been made to push health and social care planning together; Transforming Care Partnerships (TCPs) brought together commissioners of both in a structured way with the specific purpose of preventing admissions of people with a learning disability, autism or both into locked and institutionalised settings.

How successful TCPs were is something of a mixed picture which makes it difficult to predict how Integrated Care Systems might work for this group of citizens.

The annual LeDeR report paints a shameful picture of how society is failing people with a learning disability – 85% of people in the UK population pass away aged 65 or over, but for learning disabled people in the same age bracket this falls to just 38%.

The likelihood of dying between the ages of 18 and 49 is 6.4 times greater for people with profound and multiple learning disabilities. The pandemic has thrown into stark relief the pre-existing health inequalities that we have known for many years are driving the high mortality rates of people with learning disabilities.

The fifth annual Action from Learning Report includes some great examples of co-production and joint working in the responses to the Covid-19 pandemic, as well as pilots and localised examples where health and social care are tackling some of the specific causes of death for learning disabled people. However, this also means that the work being done to address these well-known causes of death is far from universal.

As the LeDeR reviews transfers to a new partnership led by Kings College and UCLAN the themed deep dives will create an opportunity to understand in much more detail the reasons why people with a learning disability die younger from specific diseases and health issues (for example respiratory conditions) than the rest of the population.

Perhaps the new ICSs will create an opportunity to change this ensuring the good work that is happening in some CCG and Local Authority areas is universally available and commonplace.

Most Safeguarding Adults Reviews adopt a multi-agency process which nearly always includes a recommendation that the different teams involved in people’s lives should work together more closely and communicate with each other more effectively.

The people who are often best placed to bring together the multi-agency and multi-disciplinary teams that surround the people supported are the Service Managers because they and their staff teams truly place the learning disabled person at the centre of their thinking.

Let’s hope that what transpires within ICS implementation happens with the same clarity with which the senior leadership roles and responsibilities have been defined and that it is also applied to localised relationships between those who are in direct contact with people with a learning disability and their loved ones.

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