Learning Disability Today
Supporting professionals working in learning disability and autism services

Will Integrated Care Systems end inequality for people with a learning disability?

With demand for health and care growing as resources become increasingly scant, there has never been a better time for greater collaboration between health, social care and other services to improve efficiency and provide a more joined up experience for local communities. This is why in July last year 42 Integrated Care Systems (ICS) were established across England as part of the new Health and Care Act.

The aim was to bring commissioners and service providers of health services together with local authorities and partners to plan and deliver integrated services to improve the health of the local population.

The four core purposes of Integrated Care Systems are to improve outcomes in population health and healthcare; tackle inequalities in outcomes, experience and access; enhance productivity and value for money; and help the NHS support broader social and economic development.

For people with a learning disability, traditionally high users of both health and social care, this presented the opportunity for stakeholders to set out longer-term agendas that could reduce current health inequalities.

Although Integrated Care Systems begun life at a time of crisis for both the NHS and social care, many charities and health organisations were optimistic that these core purposes would mean the needs of vulnerable groups, including people with a learning disability, would be a priority.

Devastating health inequalities

The most recent Learning Disability Mortality Review (LeDeR) highlighted that men and women with a learning disability die over 20 years earlier than the general population. It also estimated that 1,200 people die avoidably every year when timely access to good quality healthcare could have saved them.

With Integrated Care Systems now responsible for ensuring that LeDeR reviews are completed for their local area, it was hoped that this would create an opportunity to understand why preventable deaths happen and ensure that actions are implemented to improve the quality of services to reduce health inequalities and premature mortality.

It was also hoped that the good work happening in some Clinical Commissioning Groups and Local Authority areas would be universally available and commonplace.

Clive Parry, England Director at the Association of Real Change (ARC England), said that this is not 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.

He added: “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.”

Introducing Integrated Care Systems report

A report out this week by the Public Accounts Committee gives the first glimpse on how the Integrated Care Systems might help improve the health of people with a learning disability.

It found that there is a risk that ICSs will struggle to make progress on local or longer-term priorities such as increasing healthy life expectancy and reducing avoidable ill-health given the national focus on shorter-term challenges such as the elective care backlogs and A and E waiting times.

At national level, not enough is being done to focus on preventing ill-health nor is there any effective arrangements for joint working between government departments to tackle the causes of ill-health.

It concluded: The ‘Integrated’ element of ICSs as well as their accountability arrangements appear under-developed: there is a concerning lack of oversight for ICSs. NHS England’s core responsibilities for overseeing the delivery of healthcare in the NHS absorbs most of its focus.

“The lack of leadership from the Department on the relationship between health and social care is worrying and could mean Integrated Care Systems become a missed opportunity to make meaningful progress on how the NHS and local government work together. It is not clear who will intervene if joint working between the NHS, local government and other partners breaks down, and local health bodies’ responses to concerns raised by MPs on behalf of their constituents have been very patchy. In short, on ICSs, the jury is clearly still out.”

What does this mean for the future?

The King’s Fund warned at the start of the year that deep performance challenges in the health and care system may draw ICSs into being simply another layer of performance management. With so many visible challenges in the acute sector they may also end up side-lined as the day-to-day business goes on between the centre and trusts.

Public Accounts Committee chair, Dame Meg Hillier MP, agreed with this and said that the Integrated Care Systems reforms have potential but there is no clear responsibility for ensuring that social care is properly integrated with healthcare or that patients will see the difference on the ground.

She added: “Far from improving the health of the nation, staff shortages and the dire condition of the NHS estate pose a constant risk to patient safety. But government seems paralysed, repeatedly rethinking and delaying crucial interventions and instead coming up with plans that do nothing to address the fundamental problems of funding and accountability.

“Changes will not succeed if they are imposed on the NHS in its current state. Government needs to get a grip on the wider, full-blown health and social care crisis it allowed to develop from long before the pandemic.”

Need to move NHS and social care away from a constant state of emergency

The NHS Confederation, the membership organisation that brings together, supports and speaks for the whole healthcare system in England, Wales and Northern Ireland, was more cautiously optimistic. It said that the introduction of ICSs was overwhelmingly supported by the sector, but they were never intended as a silver bullet that will solve all the entrenched challenges facing the NHS and social care.

Judging their success on this, and after only seven months since entering the statute books, would be unfair as we know these macro issues require additional investment and support at a national level.

Sarah Walter, director of the ICS Network at the NHS Confederation, added: “The committee is right to note that in order to allow these new bodies to thrive, more needs to be done to move NHS and social care away from a constant state of emergency. This means allocating appropriate levels of sustained capital investment, delivering on the workforce strategy, moving away from overly bureaucratic and prescriptive national targets, and bringing an end to the intensifying waves of industrial action where huge amounts of time and resource are having to be set aside to fire-fight.

“Once these issues are resolved we will begin to see more tangible progress on improvements to population health outcomes in the years ahead.”

Mencap, however, says that the conclusions of the report set out a worrying picture of the need for leadership and clarity on how ICSs will improve healthcare and address the health inequalities that millions of people with a learning disability face.

Ismail Kaji, who has a learning disability and is a Parliamentary and Government Engagement Officer at Mencap, said: “People with a learning disability die on average over 20 years earlier than the general population. The government must ensure that ICSs are driving forward better work between health and social care, including getting more staff for health and social care, to make sure people with a learning disability get the right support at the right time to lead happy and healthy lives.”

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