‘Each vaccination brings promise of a brighter future’

Anna shares her experience of volunteering to give the COVID-19 vaccine to people with learning disabilities

I received a last-minute phone call asking if I could assist in COVID-19 vaccine delivery, and I was nervous. It was my first time vaccinating, I would be vaccinating people I didn’t know, and in a location I was unfamiliar with. 

To really tip my nerves over the edge, I was vaccinating people with learning disabilities. I have very little experience of nursing people with learning disabilities and I was worried about consent, capacity, reactions to the vaccination and my own shortcomings when meeting their needs. 

But all my worries turned out to be unfounded; the organisers had everything under control. 

I walked into a calm and welcoming vaccine hub and waited for residents and care home staff to arrive

Getting prepared

South East London Clinical Commissioning Group (CCG) had requested all residents with learning disabilities or mental health needs in care homes receive their first vaccinations by 15 February. A plan had been agreed within the Lewisham Primary Care Network (PCN) to focus on these residents in specific sessions across two vaccination sites. 

Some of the care homes had already vaccinated many of their residents, but the residents’ vulnerability and their underlying health conditions meant those homes – as well as a significant number of homes with no staff or residents vaccinated – had to be addressed urgently.

In advance of the vaccination date, Lewisham PCN ensured there were sufficient health care staff to administer vaccinations; and a health check hub was set up in the same location for any residents who required it. Care homes were provided with COVID-19 vaccination leaflets and consent forms in easy-read and other formats, giving relatives and friends plenty of time to discuss the vaccine and why it was being offered.

Meeting needs

I walked into a calm and welcoming vaccine hub and waited for residents and care home staff to arrive. The vaccine appointments were solely for people with learning disabilities and despite planning staggered appointments, breakfast in care homes can take time. We knew there would be a rush later on, but no-one was worried. 

All appointments had been lengthened to 15 minutes per person to help create a sympathetic environment, and volunteer stewards and local learning disability and mental health vaccination champions were ready to talk to residents, without putting pressure on them to have the vaccination. 

Accessible information leaflets about vaccination and health checks from Mencap and Speaking Up, as well as consent forms, were readily available. Staff trained in Makaton and learning disability communication were happily waiting to welcome residents and make them feel at ease. There was also a refreshments area with food and drink for residents while they waited.

Gaining consent

My main concern around vaccination consent was already addressed. Advanced background preparation had already been undertaken, and the team from Guy’s and St Thomas’ NHS Foundation Trust were on site to support residents with consent and to make best interest decisions if needed. 

As one of the vaccinators, I was included in these conversations with staff, carers and residents. It was a team approach - everyone was working to achieve the best outcome for each individual. 

This strategy also allowed residents to choose which vaccinator they wanted, and if one of the vaccinators was free and had the appropriate skills and competence, they could go and assist with the health checks.

Promise of the future

One hundred and ten residents were vaccinated that day – and I even received some spontaneous hugs. Given the pandemic where little touching is allowed, this came as a surprise, but it was a very welcome one. It relayed the residents' strength of feeling towards vaccination and the promise it gave for the future. 
One resident wanted to know when he could go back on the bus, another when to feed the ducks, and another signed to me that he wanted to see his sister who hasn’t been able to visit for a whole year. 

Each vaccination brings these desires closer to becoming a reality. I felt very fortunate to be part of such an organised vaccination set up, and to be able to support the vaccination of people with learning disabilities and their carers, who are so vulnerable to COVID-19. 

The organisation and set up of this specific hub cannot be underestimated, but it was so successful that it could be replicated for anyone with a cognitive impairment who needs COVID-19 vaccination.

Anna Crossley, RCN Professional Lead for Acute, Emergency and Critical Care

Anna Crossley is the RCN Professional Lead for Acute, Emergency and Critical Care.

I felt very fortunate to be part of such an organised vaccination set up, and to be able to support the vaccination of people with learning disabilities 

Top tips

All people with learning disabilities are different, so there won’t be a single solution that works. 

Jonathan Beebee, nurse consultant and Chair of the RCN Learning Disability Forum, shares his advice for vaccinating people with a learning disability.

  • Avoid keeping people with learning disabilities waiting. Most vaccination centres are fairly fast paced, and the only waiting is for 15 minutes after the vaccination in case of side effects. It may be that this monitoring can be delegated to the person’s support network, or that they can wait outside of the building. 
  • Numbing the injection site can make a big difference and save the person from any discomfort they might experience.
  • Help the person remain calm. Do not rush. Talk slowly, calmly and clearly. Consider if distractions will be helpful so the person is not watching the injection take place.
  • Some people with learning disabilities may have a hospital or communication passport. This will contain essential information on their communication and health needs, and what reasonable adjustments are required for that person. Take time to review this if you can.
  • Consider where is the best place for them to have the vaccine. Some people will enjoy going to a vaccination centre, some might cope better in a less busy GP surgery, and some may require the injection to be given at home.
  • There may be good reasons why people with learning disabilities and their families are anxious about vaccinations. Some people can be very sensitive to medication and they may have had bad experiences in the past. The vaccination is not mandatory, and choice needs to be respected.
  • However, some people with learning disability will be assessed as not having capacity to consent and that the vaccination is in their best interest. In these cases, the vaccination will still need to be done in the least restrictive and least aversive way. There should be multi-disciplinary decisions about these situations that involve family members. If interventions to undertake the vaccination appear to be going beyond what is reasonable, or requiring excessive restraint, the vaccine should be cancelled.

Related resources

A new picture book is being developed to help people with learning disabilities give their consent to having the COVID-19 vaccination.

Supported with £30,000 of funding from the RCN Foundation, it is hoped that this vital resource will increase understanding and boost vaccination uptake in this community.

Researchers leading the project will work in partnership with people with learning disabilities, nurses, carers, and the charity Beyond Words, which specialises in creating picture books for people who find pictures easier to understand than words. 

The book will be available to download as an e-book as well as in hardcopy. It is planned to be published in August 2021.

A free resource by Beyond Words, Having a Vaccine for Coronavirus, is already available to download. It is designed to help people think about the COVID-19 vaccine and what having the vaccine will mean.

More information 

The RCN’s Learning Disability Nursing Forum champions the health and social care needs of adults and children with a learning disability or autism. It has news and blogs, as well as signposts to essential resources for nursing staff.

For more information about the COVID-19 vaccination, please see the relevant section of our FAQs. They cover everything from the vaccine ingredients, associated allergies, required training and indemnity cover for immunisers, how to access the vaccine as a health care worker and advice on where you stand if you refuse to have the vaccine.

Read next...