Boris Johnson ignores pleas for COVID-19 care home tests for people with learning disabilities

Care homes for people with learning disabilities and autism are facing “discrimination” from the government after being denied COVID-19 tests.

Prime Minister Boris Johnson and Health Secretary Matt Hancock promised all care homes’ staff and residents will be tested by 6 June but government guidance reveals this is not the case for all care homes.

134% rise in learning disability/autism deaths

There has been a 134 per cent rise in deaths in care of people with a learning disability and/or autism for the period 10 April to 15 May, when compared to the same period last year, figures (published 2 June) by the Care Quality Commission (CQC) reveal.

Deaths notified to the CQC between 10 April and 15 May from providers registered to give care for people with a learning disability and/or autism, reveal between 10 April and 15 May 2020, 386 people with a learning disability died who were receiving care, up from 165 deaths for the same period last year.

This year, 206 deaths were as a result of suspected and/or confirmed COVID-19 and 180 were not.

Kate Terroni, the CQC's chief inspector of adult social care said: "We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives.

"These figures also show that the impact on this group of people is being felt at a younger age range than in the wider population – something that should be considered in decisions on testing of people of working age with a learning disability."

People with learning disabilities and autism living in care homes have been unable to access COVID-19 tests via the government’s online portal for care homes and guidance reveals care home residents younger than 65 won’t get access to tests before 6 June.

'By 6 June, every care home for the over 65s will have been offered testing for residents and staff’, the government has stated in its ‘COVID-19 recovery strategy’ document.

'Lost faith’

Mark Topps, care home manager for Little Wakering House in Southend-on-Sea has spent weeks trying to get COVID-19 testing kits delivered via the government's portal for his staff and 13 residents.

His care home supports people with learning disabilities and autism and he is not alone when it comes to being refused testing kits because his care home 'does not qualify'.

After promises from Matt Hancock (during a daily briefing on 15 May) that testing for under 65s would be rolled out, Mr Topps found himself unable to get any tests via the portal and says he has “lost faith” in what the government says.

“When Matt Hancock said that they were going to be testing all frontline care homes, I was delighted. When I put in my location ID, the portal tells me I can’t progress any further and I don’t meet the criteria.

"I called the portal’s helpline number and I was told that at the moment they are only testing people aged over 65 in care homes and people with dementia.”

While some of his residents have dementia and underlying health conditions, Mr Topps only has one resident over the age of 65.

Unless a care home’s main CQC registration category is to provide services for older people, residents in that care home will not be tested.

Mr Topps has since been told that a glitch in the system has meant copying and pasting the location ID rather than typing it into the portal, leads to the ID being accepted. In response, Mr Topps said: "The stress and emotions and wasted time I have spent on this when I could have been focusing on my residents is an absolute joke."

‘Close to tears' as 'discrimination is still there’

Mr Topps has not seen his own children for over nine weeks and has been apart from them and his wife, as part of his efforts to protect residents from the coronavirus.

He describes feeling “very emotional” after repeatedly failing to get tests for residents, many of whom have underlying health conditions who he says should have the automatic right to be tested.

“I found myself close to tears on some days where I’m trying to argue with people about why I feel that they should be tested.

“I think sadly people with learning disabilities and people with autism have always been left behind. I think they’ve always been discriminated against. This just highlights the fact that actually that discrimination is still there.”

The issue of the use of CQC registration categories as the basis by which care homes can access tests, has led to many care homes being refused tests.

A nursing home, supporting people under 65 with complex care needs, has said it has been denied tests after its manager contacted the local health protection team to ask for 80 testing kits for all staff and residents.

The nursing home said: “They said they could not help and the manager was referred to the new national portal and turned down because the CQC location number was not a registered older people/dementia care home".

After telephoning to query it, the care home said it was diverted back to the CQC to access tests for symptomatic residents only.

Dr Rhidian Hughes VODG, chief executive of the Voluntary Organisations Disability Group (VODG), which represents voluntary groups supporting a million disabled people, said the CQC figures "are a wakeup call for government to put right its testing programme that is currently neglecting disabled people of working age who use care services.

“The current focus of the testing programme is on older people in care homes with a diagnosis of a dementia. That decision needs to be reviewed urgently so that symptomatic and asymptomatic disabled people can readily access tests".

Mark Topps has only been able get a test for himself and the care home’s cook, after driving to a testing centre. However, many of his staff don’t have cars and face up to a 70-mile round trip to a test centre with an available booking slot.

Mr Topps has called the government's response and support for care homes during the coronavirus pandemic, a "shambles". “Even though I was tested negative today, I may not be clear in a few weeks’ time. Care homes need regular testing, every week.”

The VODG has warned, if testing is conducted away from the home; requiring travel to a testing station, then regardless of PPE, the person transporting people to a test is “at significant risk of infection” – unless the provider has access to a large minibus. In many cases, the only available transport would be the staff member’s own car.

The VODG stated: ‘No responsible provider would ask or allow a member of staff to transport someone who uses their services to a test in these circumstances’.

Government ‘guided by clinical advice’

The Department of Health and Social Care (DHSC) told carehome.co.uk: ‘We are prioritising testing for homes that specialise in caring for older people and those living with dementia in line with PHE and SAGE advice. They will all have been tested by early June.

‘Expansion of testing to other care settings and retesting of care homes will continue and be guided by clinical advice on relative priority and available testing capacity.’

A DHSC spokeswoman said the DHSC has published guidance on supporting people with a learning disability or autism.

The spokeswoman said: “We continue to work with colleagues across the system to build a picture of how COVID-19 is impacting people with learning disabilities, autism or both, and to ensure that they can get tailored support.”

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