How to support someone with a learning disability to get the Covid-19 vaccine

The vaccines for Covid-19 have already protected millions of people across the UK from the virus and enabled us to look forward to a Covid-free future. Some people who have a learning disability may need extra support to get the Covid-19 vaccine.

People at higher risk from the virus are receiving their vaccines earlier than those at lower risk. Those aged 16-65 who live with a severe or profound learning are included in Priority Group 6 and have already been invited for their first jab. This was done by inviting everyone on the GP learning disability register, but if you are not on it and have a learning disability, you can request your vaccination and you may be eligible.

The process of being vaccinated can be more difficult for people with a learning disability, but it is all the more important that they do so, because data shows that they are significantly more vulnerable to the virus. Public

Health England found that the death rate from Covid-19 was 4.1 times higher in those with a learning disability compared to those without, but estimate that it could be up to 6.3 times higher.

What might they find difficult?

Any degree of learning disability can affect how a person experiences being vaccinated. Everyone’s experience of it is different, but some difficulties can include:

• Understanding coronavirus, why they are having an injection or the relation between coronavirus and the pain they feel in their arm when they are vaccinated
• Making an informed decision as to whether or not to have the vaccine
• Anxiety or fear about the needle or vaccine
• Increased distress during the side effects of the vaccine, such as a sore arm or feeling ill afterwards
• Understanding what is being said to them on the day
• Feeling uncomfortable or distressed about something new or not part of their usual routine

Explaining the vaccine

It’s important that the person receiving the vaccine understands it, as they have to be able to give consent.

For some people, their learning disability may be so severe that they are considered to not have the mental capacity to make an informed decision as to whether or not they would like the vaccine. Having a learning disability does not automatically mean that somebody lacks the capacity to make their own decisions. They have the right to choose under the Mental Capacity Act, unless they have been specifically assessed as lacking capacity by medical professionals. In this case, the decision will be made by their doctor or, if they have one, Lasting Power of Attorney (LPA) for Health and Welfare.

If the person has not been assessed as lacking mental capacity, they have the right to choose, even if you disagree with their decision. They should be empowered to make this decision by being given necessary information in a way that they can understand and weigh up their options.

Ways you could explain the vaccine include:

• Providing easy-read information. There are leaflets and printable documents available, here are a few of the best:
  • Easy read – A guide to your COVID-19 vaccination for people with a learning disability and their carers
  • London Learning Disability Covid-19 Vaccine Information Pack
  • Mencap Coronavirus Vaccine Information
  • For people who are pregnant, may be pregnant or are breastfeeding, there is an additional guide: Easy read guide for women who might get pregnant, who are pregnant or are breastfeeding their baby
• Watching videos or listening to podcasts together. While this can greatly help their understanding, it’s important not to overwhelm them with too much information at once, so find videos that just give the essential information they need.
• Asking a friend or family member who has had the vaccine to talk to the person about their experience.
• Getting them to explain their understanding and to write down any questions they have. You could then find the answers in their easy read guides or ask your doctor together.
• Role-playing the vaccine process so they know what to expect

Booking the vaccine

Under the Equality Act 2010, people with learning disabilities have the right to reasonable adjustments when they have their vaccines. This means adjustments to help with any difficulties they may have with the vaccine on account of their disability.

GPs in Liverpool have gone above and beyond in this respect, by providing clinics specifically for vaccinating people with learning disabilities and their needs.

When you book the vaccine appointments, you can request a form to say which adjustments they might need. In England, it looks like this and they should fill it in themselves or with help. Some adjustments require a reason that they are needed to be given.

Reasonable adjustments can include:

• Choosing somewhere familiar to them to receive the vaccine. For example having the vaccine at their local GP surgery may be more comfortable for them than a large venue they have not been to before. Not all GP practices are able to administer the vaccine but where possible, they do
• Having an appointment early or late in the day
• Being accompanied by someone to support them
• Requesting that a particular doctor or nurse administer the vaccine
• If they are having the vaccine in a hospital, asking that a learning disability nurse be present
• Making sure they are seen at the time the appointment is booked so they don’t have to wait or queue
• The vaccination room being quiet and free of distractions
• Use of easy words or another form of communication by the medical professionals administering the vaccine
• Numbing cream or other medication before the vaccine
• Having the needle hidden
• A distraction, like a games console or their phone
• An easy-read leaflet about after-effects to take home

On the day

On the day of the vaccine, they will need to bring their booking reference number and a facemask, unless they are exempt from wearing one. They can also be accompanied by someone to support them, such as a friend, family member or carer.

Before the injection, they will need to give written consent. The Government provides an easy read consent form that people with learning disabilities can use to accept or decline the vaccine.

After the vaccine

People with learning disabilities may find it particularly difficult to cope with the after-effects of the Covid-19 vaccine. They may feel ill for a day or two and need extra reassurance that this is normal. Make sure they know this in advance and support them to plan something nice to get them through feeling ill, like a film and pizza day.

If they think something isn’t right, contact their GP.