VACCINE: Sharing positive experiences and stressing the importance of prioritisation for people with a learning disability

One Mencap service based in Northern Ireland that has been fully vaccinated speaks to Enable about their experiences as the charity stresses the importance of the vaccine in saving lives of people with a learning disability. 

Since the first vaccine was administered in the UK on 8 December 2020, charities including Mencap have stressed the importance of prioritising people with a learning disability who are six times more likely to die from the coronavirus. 

Staff at the service received the vaccine alongside tenants

Since the beginning of the pandemic, the Northern Ireland service has been contacted by their area’s healthcare board, the Southern Health and Social Care Trust. The main supported housing service supports 17 people with a learning disability. 

“In March last year I had an email that linked us with someone who helped us with PPE, she came fortnightly just to see how things were going,” explains service manager Anita. 

“Then about September time I got an email from the trust asking for all the details of doctors and the health numbers of everyone who is in our service, we sent that off in October and then I got an email two days before 20 December to say there was a team coming to the centre.”

The urgency of the service being vaccinated was reassuring for Anita: as care home residents and staff were routinely tested throughout the pandemic, the tenants or staff at her service hadn’t been offered the same. 

“We had an advocate who tried to fight for us to get testing but we didn’t, so when we were one of the first services to be offered the vaccine we felt very privileged and felt that the Southern Trust understood how important our work and our tenants were in this process,” reveals Anita. 

Preparation

Ensuring their tenants were informed about what a vaccine is, why it is important and what will happen on the day was an essential part of the team’s preparation. 

“My job is made very easy by having an amazing team around me, some staff haven’t seen family in ages and they have done that to protect tenants,” explains Anita. “We had a meeting with all the tenants and explained what the vaccine was, that it wasn’t that we were injecting them with the virus and that it was the protection, and they all agreed to have the vaccine.

“I knew they would have questions, especially those who maybe in the past haven’t even had the flu vaccine because they believed they were being injected by the flu, I went and did research and just tried to put it into layman’s terms.”

Anita knew the importance of informing the residents even before she knew they would receive the vaccine, wanting to keep them updated through every step of the pandemic to minimise any uncertainty or fear. 

“Our tenants do watch the news like anyone else and were aware that when you go to hospital you go yourself and no one comes to visit you, they were all very worried they would have to go to hospital by themselves, so we always said just because you have the vaccine it doesn’t mean you’re not going to get sick, you may get the virus but you won’t be ill from it,” stresses Anita. 

“That really reassured them, we weren’t giving them any sense of life will go back to normal and you’ll never contract it, they understand they still have to wear a mask and social distance and that none of that has changed, but they know what the vaccine actually is instead of us just assuming that they would take it.”

Reassurance

Anita and her team utilised easy-read information provided by Mencap to inform tenants and prevent scaremongering from dramatic headlines or figures that are difficult to process.

Taking the time to give a realistic explanation of what the vaccine is and how it will help them wasn’t only helpful for tenants: it helped to reassure staff, too. 

“It was helpful for me as well,” admits Anita. “I’d never really taken as much as paracetamol and staff asked if I was going to take it, I thought I can’t sit and explain how safe it is to the tenants and the reasons they need to get it and not take it myself.

“I think we have a responsibility to suppress the virus and the vaccine seems to be the only way out of it at this stage so I was very happy to take the vaccine, the majority of staff found it a real privilege.”

On 20 December 2020, a team of nursing and admin staff arrived at the centre and vaccinated five people at a time in a designated room. 

“It went so smoothly,” emphasises Anita. “They came in at 9:30 and were gone by 11:30 and that was everyone having their first vaccine done, there were no side effects just a bit of a sore arm the next day.”

The team returned on 12 January 2021 when everyone at the service received the second dose of the vaccine. 

Confidence

Since receiving the vaccine, the atmosphere at the service has completely changed, Anita says: “Before we were having people who were saying go to the shop to get me a newspaper and we were saying you need to come with us, and now they will come into the shop, they’re more confident going out and about; before they would have preferred to stay in the house.”

Tenants were also concerned about their parents’ health before getting the vaccine, but as the majority of over 60s have now been given their first dose, they feel more comfortable and worry-free. 

“They were saying I’m worried about keeping mum safe, so now they have the vaccine they’re confident that mum and dad are safe as well,” adds Anita. “We’re just seeing them be so much more confident than before and they ask if college will start back soon, we don’t see that starting until at least September but at least they’re asking and seeing things getting back to normal.”

Advice

After such a successful journey in receiving the vaccine, Anita would encourage other services or people caring for loved ones with a learning disability to work together to explain its importance. 

“We are all in this together, it was so important to bring them along on the whole process,” stresses Anita. “It’s not that we kept every fact from them then said here’s this injection you’re getting, whenever there was news about a vaccine we explained it.

“I think it’s just taking the individuals ability to understand and retain the information into account.”

Taking all of these factors into account, along with including family members in the process, meant that the short notice before the vaccine didn’t faze tenants. 

“It was very short notice, just two days before we were told the team was coming so having that pre-plan that they understood everything prior to it, then the last conversation was, ‘ok they’re coming and this is what will happen’,” explains Anita. “It wasn’t a big shock, we had pre-planned and had meetings with tenants about it.”

Priority

The service’s positive experience and the speed at which they received the vaccine is reassuring, but the fight for people with learning disabilities in the UK to be prioritised has been an uphill battle for Mencap and the families they support. 

Over the last few months, charities and celebrities have spoken out about the unfair treatment of this group, demanding action is taken.

Edel Harris, chief executive at Mencap, says: “Too many people with a learning disability are still waiting, despite being at a high risk of dying from the virus. People with a learning disability are six times more likely to die from COVID-19 than the rest of the population.

“It’s unacceptable that within a group of people hit so hard by the pandemic, and who even before COVID died on average over 20 years younger than the general population, many are left feeling scared and wondering why they have been left out.”

Yesterday, on 24 February, the Joint Committee on Vaccination and Immunisation (JCVI) issued advice that any adults with severe or profound learning disability, and those with learning disabilities in long-stay nursing and residential care settings, should be offered the vaccine in priority group six.

Jackie O’Sullivan, executive director of communication, advocacy and activism at Mencap, says: “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.”

Adults with less severe learning disabilities are still not currently prioritised, but this news is a positive step in ensuring people with a learning disability are treated with respect and equality before it’s too late. 

If you are concerned that you or a loved one should have been contacted about receiving the vaccine, contact your GP. 

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