Vaccine hesitancy: how a bespoke pathway helps people with learning disabilities

Learning disability nurse Rebecca Crossley’s vaccine clinic adapts to each individual

Learning disability nurse Rebecca Crossley’s vaccine clinic adapts to each individual

  • Nurse Rebecca Crossley consulted parents and carers to create a vaccination pathway for people with learning disabilities and autism
  • Each individual is assessed to see what will help them tolerate vaccination and the special clinic is changed to meet their sensory needs
  • Ms Crossley’s project for an accessible vaccine clinic won the Learning Disability Nursing category in the RCN Nursing Awards 2021
Learning disability nurse Rebecca Crossley vaccinates a patient
Rebecca Crossley vaccinates a patient Picture: Tim George

While learning disability nurse Rebecca Crossley was receiving her COVID-19 vaccination, she realised that it would be a difficult experience for her clients to go through even though it was imperative for them to have it.

People with learning disabilities and autism are up to six times more likely to die from COVID-19 compared with the general population, according to research by Public Health England in late 2020.

This heightened risk is related to high rates of co-morbidities in those with learning disabilities and also because many are likely to have had difficulty following government advice about self-isolation, social distancing and infection prevention and control, such as wearing a mask.

‘I realised it might not be a pleasant experience for people with anxiety or sensory needs’

Learning disability nurse Rebecca Crossley

Learning disability nurse Rebecca Crossley
Rebecca Crossley Picture: Tim George

Ms Crossley started working on developing an accessible vaccine clinic for people with learning disabilities and autism, as well as those with severe and enduring mental health conditions.

‘I reflected on the environment and asked myself how they would feel,’ says Ms Crossley, who worked as an acute liaison nurse at James Paget University Hospitals NHS Foundation Trust in Norfolk.

‘I started noticing everything around me – every sound, movement and touch – and realised it might not be a pleasant experience for people with anxiety or sensory needs.’

Approval from parents and carers sought for vaccine pathway

She began organising engagement events with people who would be using the service and meeting parents and carers to find out what they wanted, resulting in the pathway being truly co-produced with the families who would be using it.

‘We needed to get it right from the beginning, because people needed to return for a second dose,’ she says.

Ms Crossley wrote up the pathway for approval by parents and carers before seeking the support of the clinical commissioning group (CCG), vaccination leads and directors of nursing.

‘I undertook a scoping exercise to see what was out there and to make sure I hadn’t missed anything, but couldn’t find anything so we had to start from scratch.’

Creating a vaccine pathway: what parents and carers asked for

  • No queuing iconNo queuing – dedicated time slots, personalised times, ‘don’t faff about – jab and go’
  • No questionnaires on the day
  • Social stories explaining what was going to happen
  • No plasters
  • Photo of the person administering the vaccination
  • Plenty of time allocated for potential delays
  • Mental capacity iconMental capacity addressed before the appointment
  • Short clear instructions – three-word sentences, ‘less talk more action’
  • Be able to use Makaton sign and symbol language
  • Accessible information throughout the journey
  • More information about the consequences of not having the vaccine

Before the vaccination Ms Crossley undertook screening calls. ‘Screening is the most important aspect of the pathway,’ she explains. ‘It’s when you understand the person’s needs so you can make gold standard reasonable adjustments.

‘The screening takes 20-30 minutes, depending on complexity of the person who we will be moulding the clinic around. I have a prescriber with me in case anyone needs an individual assessment.’

She sourced a room that she could tailor for people’s sensory needs and put colleagues behind a screen so no equipment was visible.

Social media proved to be an effective way of telling people about the clinic

‘I also source person-specific materials, for example toy tractors for a young man who loves tractors,’ she says.

She sent photos to parent and carer groups. ‘We invited parents and carers to walk through the clinic to make sure that we had got it just right,’ she says. Then she promoted it through social media and the CCG.

‘The networks and parent carer groups I needed to reach are active on Twitter, so that proved an effective way of telling people about the clinic,’ says Ms Crossley, adding that on just the first day they had 69,000 ‘impressions’ on Twitter, reflecting the number of times an item appears on users’ timelines.

There have been challenges, including the needles on AstraZeneca doses, which were found to be too firm and housed in one unit, rather than arriving as two separate items.

Positive feedback from 1,000 people vaccinated

‘They were not viable to use on people likely to move around,’ says Ms Crossley, who managed to resolve the issue after raising it with the pharmaceutical company.

The clinic vaccinates the family, paid carers and members of support bubbles in addition to service users and has received 100% positive feedback from the 1,000 people it has vaccinated. This included people with severe needle phobias who previously had never had a vaccination. It has a 99.9% success rate.

‘Rebecca made the case for what we should provide and how we should provide it, and worked with colleagues to make it happen’

Paul Morris, director of nursing and patient safety at James Paget University Hospitals

‘We have one man who is still too anxious but we will keep trying,’ says Ms Crossley. ‘We are vaccinating needle phobic young people too, and have been giving those who need it boosters and their flu vaccinations on the same visit.’

RCN Nursing Awards logo

Recognised for learning disability achievements in RCN Nursing Awards

Ms Crossley won the Learning Disability Nursing category in the RCN Nursing Awards 2021 for the project.

James Paget University Hospitals director of nursing and patient safety Paul Morris said: ‘Rebecca made the case for what we should provide and how we should provide it, and worked with colleagues to make it happen.’

Ms Crossley said: ‘I am proud of myself, the teams I work with and of James Paget University Hospitals as a whole. Without the trust’s open-minded approach the clinic would not have happened.’

A parent’s experience of the accessible vaccine clinic

Georgina Sait
Georgina Sait

‘When the vaccine programme was being rolled out we were so relieved.

‘Our son, who has severe learning disabilities, autism, epilepsy, diabetes and anxiety, had been classed as extremely clinically vulnerable and was shielding.

‘When I saw the footage of the vaccine clinics my heart sank as I knew he would not be able to tolerate all the waiting and crowds. I rang my GP surgery to see if they could offer a vaccine in a more accessible way but sadly was told no.

‘Rebecca Crossley, however, offered hope. She contacted me and several other local parents to say she was thinking of setting up a vaccine clinic for people like my son and asked what elements would help, any special adaptations that would be needed and what would help my son in particular?

‘She is a true advocate of co-production and this was a great example of how innovative she is. She thinks creatively about each individual and how to help them overcome their fears. I cried with relief and crossed my fingers that she would get permission.

‘Thankfully, James Paget University Hospitals backed her all the way, and the accessible vaccine clinic was launched. It was amazing, a quiet room with sensory play, a garden, no uniforms, no stress, no medical equipment in sight.

‘Many services up and down the country have replicated what she has done. My son had both his vaccinations.

‘By making it possible for individuals who are clinically vulnerable to access a vaccine in a safe way without undue stress and trauma, Rebecca’s passion to serve the autism and learning disabilities community has saved lives.’

Ms Crossley added: ‘Not all people have access to a clinic like this – we have had enquiries from as far away as Wales, London and Cornwall. We have shared this with teams in Canada, Holland and Germany, but I would like to see similar clinics accessible for every postcode in the UK.

‘I would urge learning disability nurses not to take no for an answer. This is a “must do” not a “nice to have”.’

The chair of the RCN Nursing Awards judging panel, Joanne Bosanquet, who is chief executive of the Foundation of Nursing Studies, praised the project’s vaccine uptake figure as being ‘almost unheard of’.

She said: ‘Rebecca also supported clients to be vaccinated who hadn’t been able to for over ten years. Rebecca is highly inclusive and deliberately focuses on those who are historically under-served.’

Three tips for setting up your own vaccine clinic

1. Make sure the pathway is developed through genuine co-production and shaped by parents and carers

2. The screening call before the vaccination appointment is crucial – allow enough time to understand what the individual will need in order for them to tolerate the vaccination

3. Make sure the environment is fully adaptable for sensory needs

RCN Nursing Awards 2021: all the winners