Urgent action to support people with learning disabilities and autistic people

Figures released today by the Care Quality Commission show that there has been a 175% increase in the number of deaths among people who live in a setting either wholly or partly registered for people with learning disabilities or autistic people. 3,765 people died between 10 April and 8 May, compared to 1,370 last year. 

This does not mean that there has been a 175% increase in the number of people with learning disabilities or autistic people who have died. Many of the settings included in these figures are also registered for people in other groups such as people with dementia.

This afternoon, NHS England then released data showing 451 people with learning disabilities or autism have died of coronavirus. Uncertainties remain in this data too, and it does not take account of the indirect impacts of coronavirus on mortality rates for people with learning disabilities or autistic people, or example of barriers to treatment for other health conditions.

However, overall there is every reason to remain concerned. Health inequalities prior to the pandemic meant that people with learning disabilities were already likely to die younger than the general population. According the sample reviewed by the Leder Programme, the gap on average was 29 years younger for females and 23 years younger for males. 

Although it may be some time before we get good information that we can rely on, we cannot wait. We believe that actions must be taken in 9 areas to safeguard the lives and wellbeing of people with learning disabilities and autistic people who rely on social care services. These overlap with the actions required to support other people who are in social care settings, including care homes. We believe that the Secretary of State and Care Services Minister should take personal accountability for driving this forward.

There are still new reports coming in of unlawful blanket decisions to not provide healthcare to people with learning disabilities, or blanket impositions of Do Not Attempt Cardio-Pulmonary Resuscitation orders. This is despite statements made by NHS England and the Secretary of State that this practice is unacceptable. Ministers and NHS England must stay on the case until this is stamped out. All decisions about care and treatment must be taken solely on the basis of clinical need and must be informed as far as possible by the person concerned and their friends or family. Advocacy can play a major role in helping this to happen.

Supporting people appropriately in health care settings will ensure better health outcomes. Almost two months ago, NHS England produced well considered guidance for clinical staff on supporting people with learning disabilities and autistic people in relation to Covid-19. It is unlikely that this was fully disseminated and embedded into practice at that time, given the length of the guidance and extreme pressures and concerns experienced then. It should be revisited.

It is becoming increasingly clear that increased mortality due to the wider impacts of coronavirus may be at least as significant as that caused directly by Covid-19. This may disproportionately impact on people who already experience health inequalities. Measures to counter this must not be dispensed with as a result of the pandemic. This ranges from ensuring that support staff are aware of and act swiftly on health concerns, such as constipation, to the use of annual health checks with GPs which is recommended for all people with learning disabilities.

Under considerable pressure the Government have published statistics about the number of people who have died. However, this remains far short of a comprehensive picture, the CQC data tells us little about people with learning disabilities and autistic people; the NHS data is about deaths in hospital only.

What gets measured gets managed. It is critically important that accurate and comprehensive information about the direct and indirect impacts of coronavirus on the lives of people with autism and learning disabilities is gathered, published and acted on. 

It is simply unacceptable that there remain issues about access to personal protective equipment (PPE) for staff and carers supporting people with learning disabilities or autism, irrespective of whether these people live in care homes, in their own homes, or with their families.

Testing has to be readily available to anyone living in a care home, supported living environment or other social care setting, and to all members of staff and carers supporting them. Currently this has been reported to only be required to be available for staff working with older people, and to be applied inconsistently across the country.

Clear decisions must be taken about people moving into and out of care homes, especially people who are discharged from hospital. Testing and quarantine or separation need to be considered where this may be required, with the full involvement of the person. This will ensure the safety of the person and anyone they will live with.

Traditionally, many members of staff have moved between care settings, so they can provide flexible support to people. Many agencies have acted swiftly to reduce this to the bare minimum; this now needs to be consistently enforced by all care providers.

Where many people who use services live together and are supported by a large team of staff coming and going into their homes, difficult decisions may be needed about whether it is safer and better for people to move - temporarily or permanently - to new locations, and how this will be supported. The risks of moving also need to be considered, both to the person’s health and lifestyle and the risk of spreading the virus to others. The person’s views must be sought and their decisions and wellbeing must be paramount in such difficult decisions.

People who live in settings with a large number of people may be most at risk. As a long-term legacy of the pandemic, there should be a review of the use of large care setting, which have now been shown conclusively to enhance people’s risks.

Although the issue of large care homes may mainly affect older people, too many people with learning disabilities and autism do live in large settings for inpatient mental health settings. CQC data indicates there has been no increase so far in mortality in independent sector health settings where autistic people and people who have a learning disability may live. These comprise about half of the inpatient mental health provision for people with learning disabilities or autism and include large ward type settings. Whilst thankfully there does not appear to be an increased number of people dying in these setting, the risk remains. If it has not been done already, the prevention and response to potentially major outbreaks in these settings must be urgently planned for.

In 2018-19 there were 150,000 application to authorise a person living in a care or nursing home in England under the Deprivation of Liberty safeguards, most of these applications were approved. This includes many people with learning disabilities. Deprivation of liberty decisions have to be made on the basis of the person’s best interests. Coronavirus shifts the balance of best interest, as many larger care settings will now be more dangerous than people’s own or their family’s homes. This must be taken into account in decisions regarding deprivations of liberty.

Throughout all of this, understanding the person’s voice is critical. Coronavirus is not a reason to take decisions without involving the person affected - it is a reason why we need to listen more. Advocacy plays a critical role in this, and advocacy organisations are continuing to work through the pandemic to enable people to have a voice. Referral to advocacy must be considered whenever a person needs support to have a voice in important decisions. Frequently this will be a legal requirement.

We believe that every life counts, and every voice should be heard. To support people with learning disabilities and autism, the government must drive all these actions to safeguard and support people with learning disabilities or autism. We call upon the Secretary of State and Minister of State for Care to take action on these issues.

The title of this blog was changed after first publication.