The increasing use of private sector hospitals to look after patients with complex learning disabilities has left patients at risk of abuse and poor quality care, hospital leaders have warned.
The current system is too fragmented with responsibilities split between multiple different agencies at both a national and local level, NHS Providers, which represents NHS hospitals, has warned.
It said this meant services were poorly placed to meet patient needs with problems being exacerbated by what it described as a stigma against learning disabilities coupled with widespread cuts to hospital and community service budgets which meant thousands of patients were forced to stay locked up in institutional care.
In a new report NHS Providers said there was “clear evidence of historical inequity” in the way services for people with learning disability and autism were commissioned by NHS England which it said “left these groups of service users disadvantaged in terms of their health and wellbeing, life chances and expectancy, and in extreme cases open to abuse.”
The Care Quality Commission rated more than 80 per cent of NHS hospital wards for people with learning disabilities as good or outstanding in April this year. Almost a quarter of independent hospitals, 22 per cent, were rated inadequate by the regulator, a jump from 5 per cent in July 2019.
NHS Providers said examples like the abuse of patients at Whorlton Hall in 2019 showed progress on improving care was “unacceptably slow.”
Saffron Cordery, NHS Providers deputy chief executive said NHS England should stop commissioning hospitals centrally itself and instead allow services to be developed locally.
She told The Independent: “I don't think the way that services are actually commissioned and delivered puts us in a position to be genuinely confident about quality across the board.
“We need to make sure that the public, politicians, service users and their families, have confidence in the services that are both commissioned, and provided. That has to be our fundamental starting point. What happened at Whorlton Hall and previous events have really highlighted the fact that on occasions people can't be confident in the services that are provided.”
She said mainstream NHS services would not be provided in the same way and care for learning disability patients had suffered “more atomization and fragmentation” adding: “I would trace that back to the root cause of it being a stigmatised service that hasn't come front and centre of people's minds.
“It is much easier to hold NHS services to account. They sit as part of a wider trust and health system. What we have got is a situation where because of the nature of the provision, we aren't seeing the same level of focus on quality improvement that you get when it sits within an NHS trust for example.
“The line of sight, the accountability, the ability to control factors that impact on quality of care delivered is more difficult.”
Since 2015 the government and NHS has been committed to reducing the number of people with learning disabilities and autism who are detained in hospitals long term.
NHS England’s long term plan set a new target of reducing hospital numbers by 50 per cent by 2023-24.
The latest NHS data released earlier this month showed 2,100 learning disabled and autistic patients were detained in hospitals. There were also more than 5,500 instances of patients being restrained by staff.
The report said money was supposed to be released for community services as a result of closing hospital beds but it said: “Beds in learning disability and autism services have closed at the same time as investment in community care has reduced.”
It said funding for community learning disability services had actually fallen 35 per cent between 2013-14 and 2017-18.
These long term cuts and rising demand have further increased the health service’s reliance on private sector providers while the commissioning of services overall is disjointed.
As an example, the report said: “Trusts may be commissioned to carry out autism assessments – the waits for which can span years – but not commissioned to deliver services that would provide the care and support for people diagnosed by such assessments. In such cases, individuals may have to travel beyond their local area to access the care and support they need.”
Saffron Cordery added: “We want to see as many people as possible, for whom it's appropriate, to be outside of an institutional setting, that's absolutely right, but you can only do that if you have really good and resilient community provision. Reducing inpatient beds shouldn't come at the cost of providing appropriate care for people.
“We needed, at worst, to see double running, or at best, have built up the resilience first and then started the process of moving out into community.
“Fundamentally, we need to change our attitudes to learning disability services, we need to really tackle the stigma and understand how it has a structural impact on the nature of services. We need to make learning disability services mainstream, front and centre.”
An NHS England spokesperson said: “Learning disability and autism services are held to the high standards and quality requirements that all NHS care is expected to meet for their patients, which this report rightly highlights most NHS learning disability services do achieve.
“It is absolutely right that we need to spread good practice across all parts of the country, which is why the NHS is funding exceptional local services to become learning disability ‘exemplar’ services, which can drive improvements in quality in people’s care, everywhere.”
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