The Joint Committee on Vaccination and Immunisation (JCVI) has advised the government to invite all people on the GP Learning Disability Register for Covid-19 vaccination.

Approximately 150,000 extra people with a learning disability will now be eligible along with adults with severe and profound learning disabilities, and those with learning disabilities in long-stay nursing and residential care settings who were already included in the vaccination priority group 6.

The news comes after months of campaigning by learning disability charities such as Mencap and Learning Disability England for the JCVI to urgently prioritise all people with a learning disability for the vaccine.

It also followed lobbying by BBC DJ Jo Whiley whose sister Frances has a genetic disorder and lives in residential care. Frances had not yet received the vaccination and was admitted to hospital with Covid-19 following an outbreak in her Northampton care home.

Severity of any disability may not be well recorded in GP systems

A Public Health England report last November found 451 per 100,000 people registered as having a learning disability died with Covid-19 between 21 March and 5 June, a death rate 4.1 times higher than the general population after adjusting for other factors such as age and sex. But as not all deaths in people with learning difficulties are registered on these databases, researchers estimated the real rate may have been as high as 692 per 100,000, 6.3 times higher.

The JCVI said one of the reasons behind the decision was that GP systems may not always capture the severity of someone’s disability, meaning some adults who are more severely affected by learning disabilities may not be invited for vaccination alongside people with other long-term health conditions.

It asked the OpenSAFELY team to perform an updated analysis in those with various code sets for learning disabilities on GP systems and to include data from wave 2 of the pandemic. The updated analysis confirmed a higher risk of mortality and morbidity in those on the GP register with learning disabilities – it’s expected that individuals with more severe learning disabilities are more likely to be on the list.

To ensure those most at risk of death or hospitalisation are prioritised for vaccination, JCVI supports the plan to invite anyone on the GP Learning Disability Register – as well as adults with other related conditions, including cerebral palsy – for vaccination as part of priority group 6.

JCVI also supports an approach for the NHS to work with local authorities to identify adults in residential and nursing care, and those who require support, for example as part of assisted living in the community, and those in shared accommodation with multiple occupancy.

Professor Wei Shen Lim, COVID-19 Chair for JCVI, said: "The JCVI’s advice on Covid-19 vaccine prioritisation was developed with the aim of preventing as many deaths as possible. People who are severely affected by learning disabilities are at higher risk of death from Covid-19.

"As the severity of any disability may not be well recorded in GP systems, JCVI supports the NHS operational plan for anyone on the GP Learning Disability Register to be invited now for vaccination as part of priority group 6, and to reach out in the community to identify others also severely affected by a learning disability but who may not yet be registered."

Important for people with a learning disability to check they are on the register

Jackie O'Sullivan, Executive Director of Communication, Advocacy & Activism at learning disability charity Mencap, said: “This is a hugely welcome announcement, and fantastic news for people with a learning disability. Now everyone on the GP Learning Disability Register can get access to the Covid vaccine.

“It's now crucially important that everyone with a learning disability checks that they are on the register and asks to go on it if they are not. Being on the register has many benefits and entitles people to annual health checks and prioritisation for future vaccinations, as well as allowing them to get the Covid vaccine and be confident they are protected.”

In order to reduce the risk of increased unnecessary deaths in people with a learning disability during the coronavirus outbreak, the Government said it was essential that annual health checks continue to be carried out.

Kirsty Matthews, CEO of Hft, a national charity supporting adults with learning disabilities, also welcomed the news but said that to ensure the vaccine rollout is thorough and comprehensive, it is vital that the government works with other agencies - including local authorities and care providers - to identify everyone with a learning disability who is eligible rather than rely on the GP Learning Disabilities Register. 

She added: “Despite today’s announcement, we remain concerned by the continued lack of clarity about when everyone with learning disabilities, regardless of age, will be invited for vaccination. Given the government’s poor track record on supporting people with learning disabilities throughout the pandemic, we are worried they will continue to be at the back of the queue for the vaccine, and risk isolation from society, even beyond 21 June.

“Hft would therefore like to see the government follow Scotland’s example and clearly prioritise everybody with a learning disability to ensure that no one has to face an unnecessary wait for the Covid-19 vaccination.”