Barriers to healthcare for people with a learning disability during the pandemic

The impact of coronavirus

Long before the coronavirus pandemic, people with a learning disability experienced shockingly high health inequalities. Our Treat me well campaign has been trying to fix this since February 2018.

However, the coronavirus (COVID-19) pandemic has made things much worse.

People with a learning disability have died from COVID-19 more than 6 times the rate of the general population.

This page, and our latest report, My Health, My Life: Barriers to healthcare for people with a learning disability during the pandemic, explains the impact of the pandemic, and what we think needs to happen now.

See full report (PDF) See easy read report (PDF)

What went wrong

Our report explains the main findings, that:

people with a learning disability were told that they may not receive life-saving treatment.
some hospitals failed to provide adequate care while government guidance on visiting resulted in the removal of critical support.
there was a reduction in access to learning disability nurses and some acute learning disability nurses were redeployed to other units.
inappropriate discharge from hospital meaning many people left hospital too quickly with some emergency readmissions following soon afterwards.
remote consultations (e.g. over the phone or video call) were not suitable for many people with a learning disability.

I'm not well enough

‘I wasn’t happy because I didn’t think I was well enough for discharge. Me and my sister knew that it was too early. I said I’m not well enough and they said I was fit enough to go home and that I was going to be discharged, but a few days later I was back in there.”
– Leroy who has a learning disability

What needs to happen now

Mencap’s Treat me well campaign has being working at transforming how the NHS treats people with a learning disability for nearly 3 years.

As well as continuing this important work, we are calling for the following areas of change.

Click each subject below to find out more about what we're asking for.

Clearer guidance

Guidance around healthcare during COVID-19 needs to specifically address the needs of people with a learning disability.

This must be addressed as part of the initial guidance, not once guidance has already been released.

Ambulance guidance must be clear that carers and advocates can accompany people with a learning disability to hospital.

DNACPRs must be reviewed and removed from the records of patients who did not give informed consent , or for whom proper decision making did not take place.

Reasonable adjustments

As well as being part of the law within the Equality Act 2010, reasonable adjustments are very important for people with a learning disability.

What people think is ‘reasonable’ may change when times are busy, but adjustments still need to be considered and made where possible. This can be a matter of life and death.

The government and national health bodies must share clear guidance about reasonable adjustments and use specific COVID examples to show how hospitals can make reasonable adjustments, even in a time of crisis.

Remote consultations

An urgent review needs to take place of the equality of remote consultations (e.g. that take place over the phone or by video call).

This review should focus on people with a learning disability, as well as other vulnerable groups who may be excluded from accessing healthcare services, such as older people.

Learning from deaths

We need further action to understand why so many people with a learning disability have died during the pandemic and to stop this from happening in the future.

Longer term, the inquiry into the handling of the pandemic must look closely at why so many people with a learning disability died.

Lessons must be learned from this tragedy, so that mistakes are not made again.

Training

The last few months have shown that healthcare is in desperate need of a culture shift, addressing how the healthcare system view people with a learning disability at times of crisis.

Training should be prioritised to make sure that all healthcare staff are confident in providing flexible, personalised care for people with a learning disability within their specialties.

The current trials of the Oliver McGowan mandatory training in learning disability and autism will be key in making this happen in England, and in Wales this will continue with the development of the Paul Ridd mandatory training.

Vaccination

The evidence from LeDeR and PHE shows that people with a learning disability have been disproportionately impacted by COVID.

The government must prioritise vaccination for people with a learning disability, who have died at over 6 times the rate of the general population.

DNACPRs are constantly being put in place

“DNACPRs are constantly being put in place for people with a learning disability and often inappropriately… [We] challenge them daily but still these are happening.”
- Learning disability nurse, surveyed by Mencap in June/July 2020.

What you can do

If you have a learning disability or care for someone who does, there are some things you can do to make healthcare during COVID-19 as safe as possible.

These things include:

ask your doctor about the COVID vaccination as they become available – this is one of the most effective things that you can do to protect yourself and those around you from COVID-19. Some people with a learning disability will be prioritised for the vaccine .
check your medical records for DNACPRs - these should not be on your records without your permission and full understanding of what they mean. It is your right to remove them at any time.
request an annual health check – having an up to date record of your health leads to better outcomes in the long term, and could be useful if you have to go to hospital.
request a flu jab – if you get flu and COVID at the same time, you are more likely to become seriously unwell. Flu jabs keep people healthy and will help to ease pressure on the NHS during the winter months, when they are more likely to be stretched.
ask for reasonable adjustments - these are still required by the law, and make an enormous difference to someone’s healthcare experience and outcomes.
sign up to fight for healthcare equality in your local area through the Treat me well campaign.

Things were very different

“I was in and out of hospital many times from December last year up to August this year… Back in December I had one of my family by my bed most of the day. This was comforting and helped me deal with questions from doctors and nurses. But when I went into hospital in June this year in the middle of the COVID pandemic things were very different… The staff are doing incredible work helping people every day under very difficult circumstances, but when they interpret the rules differently this causes real difficulties for patients with a learning disability and can affect their quality of treatment.”
- Peter who has a learning disability

Hear from Vijay

Vijay talks about Mencap's latest report which explains the barriers to healthcare for people with a learning disability during the pandemic, and why reasonable adjustments are so important.