Campaigners celebrate ‘crucial victory’ after adults on GP learning disability register get vaccine priority

All adults on the learning disability register will be prioritised to get a coronavirus vaccine, the Government has announced, following calls from BBC presenter Jo Whiley.

People with severe and profound learning disabilities were already part of group six – adults aged 16-64 with underlying health conditions – but care minister Helen Whately has confirmed all people on the GP learning disability register will now be invited for a vaccine as part of this group.

Charities and care providers welcomed the move, calling it a “crucial victory” for people with learning disabilities and their families.

The change comes after a recommendation from the Joint Committee on Vaccination and Immunisation (JCVI).

The JCVI said GP systems may not always capture the severity of someone’s disability, meaning some adults more severely affected by learning disabilities may not have been previously invited along with others in group six.

Recent analysis for the JCVI showed a higher risk of mortality and morbidity in those on the GP register with learning disabilities.

Whiley (pictured) has previously questioned why she was offered the vaccine before her sister Frances, who has the rare Cri du Chat genetic syndrome and was recently in hospital with Covid-19.

She tweeted she was “crying with joy” at the news and told the BBC: “This is a great day – I am so relieved, I’m so happy for all those people who’ve been living in fear.

“I’m very grateful to the Government for listening, because it’s a very complicated situation and it’s very difficult to categorise people according to their disability, it’s very, very tricky and that’s become apparent, I think, over the past few months.

“This is clear, this encompasses everybody, and all those people who have been feeling very neglected, feeling like they don’t matter, that we don’t care, now know that we will be protecting them.

“This is absolutely crucial and I could not be more delighted. This is a massive step forward.”

The JCVI has also called for the NHS to work with local authorities to identify adults in residential and nursing care, and those who require support in the community, who may not be registered.

This will mean at least 150,000 more people with learning disabilities will now be offered the vaccine more quickly, it said.

Whiley said her family feared they would lose Frances a few days ago, but she came home from hospital on Tuesday and has got her appetite back.

She added: “This is the first step in her recovery, it’s going to be hard work from here on in, but she’s doing great.”

She appealed for people not to delay if they have a loved one with a learning disability who is not on the GP register, adding: “I think now attention has been shown on these people, on your situation. So pick up the phone today, call the surgery, just make yourself known, make the person that you care for, you love, known, and you will get vaccination.”

Professor Anthony Harden, JCVI deputy chairman, acknowledged that leaving it to local health authorities to determine which people had more severe learning disabilities in their areas had led to some inequalities in the rollout.

He told the Science and Technology Committee that letting local leaders decide was “the most straightforward way” but added: “I do accept that has led to some inequalities throughout the country.”

Professor Wei Shen Lim, JCVI Covid-19 chairman, 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 six, and to reach out in the community to identify others also severely affected by a learning disability but who may not yet be registered.

”The JCVI will continue to consider the emerging evidence and will keep its advice under review.”

Health Secretary Matt Hancock said he has asked the NHS to implement the advice “immediately”.

Steve Scown, chief executive of not-for-profit support provider Dimensions, said the news will “mean peace of mind and a quicker return to normality for thousands of individuals and their families across the country, who have already experienced greater anxiety than most throughout this time”.

Jackie O’Sullivan, executive director of communication, advocacy and activism at learning disability charity Mencap, said people must check if they are on the register and ask to go on it if they are not.

She added: “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.”

Dr Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group (VODG), said: “Today’s announcement will be of great relief to many families, but we must also hope that this has been a lesson in listening for the Government and it will finally commit to an inclusive and equitable approach in its Covid-19 policy responses for everyone with a disability, especially given that we know disabled people have been disproportionately affected by the pandemic.”

Campaigners with learning disabilities celebrate vaccine news

One campaigner said he “feels like I’ve banged in about 10 or 20 goals” after the Government announced the prioritisation of all adults on the learning disability register for a coronavirus vaccine.

People with the most severe and profound learning disabilities were already part of the priority group six, adults aged 16-64 with underlying health conditions.

However, Care Minister Helen Whately confirmed that all people on the GP learning disability register will now be invited for a vaccine as part of this group.

The announcement was made on Wednesday following calls from leading charities and the high-profile case involving BBC presenter Jo Whiley’s sister Frances, who became ill with Covid this week.

Harry Roche, 32, from Hertfordshire, an ambassador for the learning disability charity Mencap, has a learning disability and autism, and has been campaigning for vaccine priority.

“It just feels like I’ve banged in about 10 or 20 goals!” he told the PA news agency.

“It means a lot to the learning disability community.

“I was excited and relieved because it took a lot of effort.

“It feels like all the campaigning I’ve been doing (has) paid off.

“It’s been tough work, we’ve been working tirelessly.

“That includes making videos, speaking to the press, campaigning on social media.

“Mencap and people with a learning disability and their families campaigned tirelessly for this, and I think today is a day to celebrate something special.”

Before Wednesday’s announcement, people could be prioritised for vaccination based on individual or local circumstances by their local authority, clinical care group or GP – but many with a mild or moderate learning disability were still left out.

This was despite concerns that they could be at greater risk from the virus – a study by Public Health England found that people with learning disabilities in England were up to six times more likely to die with coronavirus during the first wave of the outbreak.

Learning Disability England’s membership and engagement lead Gary Bourlet, 61, from Westgate-on-Sea in Kent, has a mild learning disability.

He has already booked his first vaccine appointment following Wednesday’s announcement.

“I’m excited,” he told PA.

“I heard from a group of people with a learning disability and they were cheering and excited about it.

“They can’t wait.

“I’m hoping to get back socialising again, I miss my friends.”

However, he said that people with learning disabilities are “tired” of having to fight for such adjustments.

“It has always been like that for people with learning disabilities.

“We have to keep on fighting all the time to get our rights,” he said.

“We’re a bit tired and fed up with always trying to fight our corner all the time.”

Jackie O’Sullivan, executive director of communication, advocacy and activism at Mencap, urged people to check if they are on the register and to ask to go on it if they are not.

She added: “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.”

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