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COVID-19 vaccine consent and learning disabilities: implications and advice

Information on how to gain consent and support people with learning disabilities to get vaccinated

Information on how to gain consent and support people with learning disabilities to get vaccinated

  • Why all people with learning disabilities should be in a priority group to have the COVID-19 vaccine
  • The importance of gaining consent before immunisation, and when and how to make a best interests decision
  • How to plan for the vaccine invitation with a list of resources as well as a consideration of issues about capacity to consent

COVID-19 vaccinations are being rolled out across the UK. Yet despite

Information on how to gain consent and support people with learning disabilities to get vaccinated

  • Why all people with learning disabilities should be in a priority group to have the COVID-19 vaccine
  • The importance of gaining consent before immunisation, and when and how to make a best interests decision
  • How to plan for the vaccine invitation with a list of resources as well as a consideration of issues about capacity to consent
Suzie Shakespeare, senior immunisation nurse prepares Gavin Howcroft, who has global developmental delay, for the COVID-19 vaccine in Stevenage, Herts. Picture: Alamy
Suzie Shakespeare, senior immunisation nurse prepares Gavin Howcroft, who has global developmental delay, for the COVID-19 vaccine in Stevenage, Herts. Picture: Alamy

COVID-19 vaccinations are being rolled out across the UK. Yet despite widely known health inequalities facing people with learning disabilities, they are not a distinct priority group.

In the list of nine priority groups for the first phase of the vaccination programme, adults with Down’s syndrome are in priority group 4. People with a severe or profound learning disability are in priority group 6, alongside other high-risk adults aged under 65.

A petition to government calling for it to change its prioritisation for this cohort has more than 16,000 signatures.

Gaining consent for vaccination

Easy Read Vaccine Q&A leaflet

Vaccinations against COVID-19 are not mandatory and where people can give or refuse consent we have a responsibility to ensure consent is sought.

Many people with learning disabilities will be unable to consent, but others will be able to consent if given the right support.

Nurses, carers and families should begin planning as soon as possible, so they are prepared when the invitation to receive the vaccine arrives.

Why the vaccine is important for people with learning disabilities

People with learning disabilities were up to six times more likely to die from COVID-19 compared with the general population during the first wave of the pandemic, according to Public Health England.

Respiratory disorders were also found to be the primary cause of death for people with learning disabilities in recent research.

It is common for people with learning disabilities to have difficulty understanding social rules.

It might be difficult to understand the concept of social distancing, and physical contact with others may be an important part of their lives.

They may not be able to understand the importance of other COVID-19 guidance, such as handwashing and wearing face coverings.

Difficulty with social distancing and lockdown measures

This means some people with learning disabilities will be more at risk of contracting and spreading the virus.

A key defining characteristic of having a learning disability is depending on others to meet daily needs.

People with learning disabilities live in a wide variety of settings, including their own homes, with families, in supported living settings and in residential care homes.

Whatever the home setting, people with learning disabilities are likely to need people to come and go in their homes to help them meet their needs.

Therefore, their ‘support bubbles’ may be larger than those who do not rely on others.

Lockdowns have been difficult for many people, but they have been particularly hard for some people with learning disabilities who have limited ability to occupy themselves in their home, reduced coping skills, and need high levels of activity and time outdoors.

Vaccination offers safety and reassurance to people with learning disabilities and those who support them. It provides hope that restrictions can be lifted and they will be able to return to a time when they can enjoy seeing neighbours and being involved in their communities.

Vaccine anxiety

All of us can relate to fear about being ‘jabbed’ by a needle and the pain it may cause.

We are able to rationalise this by understanding the pain will be minimal and will soon be over. We understand that the long-term benefits outweigh the short-term pain.

Vaccination may be given as part of a best interests decision for an individual
Vaccination may be given as part of a best interests decision for an individual Picture: Alamy

But some people with learning disabilities may not be able to rationalise things in this way and will understand the immediate pain, but not the long-term benefits.

Others may have had negative experiences that cloud their view of injections.

Support should be given to reduce anxiety. However, if a person has capacity to consent and their anxiety leads them to choose not to have the vaccine, this decision must be respected.

If an individual is unable to consent – as will be the case for many people with severe and profound learning disabilities – then a best interests decision may be made to say they should have the vaccine regardless of these anxieties.

The best interests decision, a principle outlined in the Mental Capacity Act 2005, will need to include detailed thinking about how to reduce anxiety as much as possible and to ensure the procedure is done in the best way for the individual.

Six considerations for vaccination consent

  1. Unless you have reason to doubt capacity to consent to vaccination, capacity should be assumed. Bear in mind that people may and can refuse, even if this seems to be an unwise decision
  2. The person administering the vaccine is the ‘decision maker’. If the person with learning disabilities is going to a vaccination centre, the process will be fast moving and there will not be time for complex decisions. The person administering may not understand learning disability issues, so preparing in advance will be a big help
  3. There may be someone registered as lasting power of attorney (LPA) for health and welfare that has been authorised to consent for the person you are supporting in situations like this. If there is someone with LPA they can consent on the person’s behalf, but planning will still be needed for how to administer the vaccination
  4. If someone is unable to consent, we need to consider if they could gain capacity, if they were given the right support
  5. But if someone is unable to consent then a best interests decision needs to be made that involves their family and people who know the person well. How the person has responded to previous vaccinations will be an important consideration, and if they have ever expressed their views on this or similar issues in the past
  6. There are a variety of consent forms from the government, including those to collect views of relatives. Although these are aimed at people who are in care homes, they may be useful for other settings too

It may be necessary to hold the person supportively when the injection is given to ensure safety of the service user and the vaccinator.

If holding the person would do more harm than good, then this also needs to be weighed up when making decisions about the vaccine.

Some people may be hypersensitive to medication.

For these reasons, family members may be anxious about their loved ones having the vaccine and these factors should be considered as a high priority when deciding best interest.

Reasonable adjustments

People with learning disabilities are legally entitled to reasonable adjustments to access healthcare services.

An NHS vaccination centre in Stevenage
An NHS vaccination centre in Stevenage Picture: Alamy

Proactive steps must be taken to remove any barriers they may face, regardless of whether they have given consent or procedures are being done in their best interests.

Each individual has unique needs, but here are a few considerations for nurses:

  • Vaccination centres can be busy and people need to follow strict social distancing rules and observe one-way systems. If the person you support will struggle with this, it may be better to arrange for the vaccination to be done at a GP clinic or pharmacy. It may even be possible to arrange for a home vaccination.
  • The person may need familiar people to be with them, which may not always be possible in some settings.
  • Timings should be considered. First appointments of the day may suit some people to avoid waits. For others, later in the day might mean they are more alert. Consider avoiding a clash with preferred activities. Extra time for appointments may also be required.
  • Is there anything that can be done to reduce anxiety while you are waiting? A place to wait alone might be beneficial or having activities in the waiting room to occupy and relax people. People need to wait for 15 minutes after the appointment to check for allergic reactions. It should be discussed whether the person needs to wait in the clinic area for these observations or they can be monitored elsewhere.
  • Consider if distractions will be beneficial as the injection is happening. For some, knowing when the injection is coming is better than a surprise. For others, looking elsewhere and singing a favourite song might help.
  • Consider a supportive and comforting touch. For some people this will give them confidence. It may be necessary to use restrictive touch to ensure that the vaccine is administered safely. If so, plan this to ensure it is the least restrictive use of touch possible for the shortest time.
  • Desensitisation work may be beneficial for some people. It may not be possible to visit the place where the vaccination takes place beforehand, but it may be possible to role play what the vaccine may involve, for example sitting down, rolling up a sleeve, feeling a small scratch on the top of the arm. Using role-play dolls or teddies may be appropriate and will aid understanding and acceptance for what will happen.
  • The use of topical pain relief that numbs the injection site may be required and make the experience more enjoyable.
  • Hospital or communication passports can be useful tools to ensure all involved are aware of how the person communicates, what their preferences and dislikes are, and how to make health interventions successful.

COVID-19 vaccines requires two doses, at least three weeks apart.

The success of the second dose will be reliant on how successful the experience of the first dose has been.

It is, therefore, worth investing time to ensure the first dose administration goes well.

Planning is crucial

Be prepared for the vaccination invitation

Inform yourself about the COVID-19 vaccine from sources, such as UK government websites, the NHS, the RCN, the British Medical Association and the Medicines & Healthcare products Regulatory Agency to answer questions and concerns.

Leaflet on COVID-19 Vaccine

Gather accessible information for people with learning disabilities that might help those you support:

If you are not sure whether the person you care for will be able to consent to the COVID-19 vaccine, begin planning what you can do to assess capacity and support decision-making.


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