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15th March 2021

Facing Fears: How to support people with a Learning Disability who fear the COVID-19 Vaccine

Facing fears on both sides: Reassuring people with a learning disability and their families who are offered the COVID-19 jab

It was a good day when the Government announced they would offer the COVID-19 vaccine to people with a learning disability. It didn’t come easily, with the need for high profile intervention from Jo Whiley who highlighted the story of her own sister – who contracted COVID-19 mid campaign, and thankfully made a recovery.

There is an understandable push to vaccinate people with a learning disability, but the term is very wide, and there are some issues to think through to bring both reassurances to people with a learning disability and their families.

What we must remember is, where people have the capacity to make a decision about having the vaccine, they should own that decision.

What information has been given to the person?

Mencap have provided a page of information including;

  • Easy read about the vaccine
  • Guide about the Learning Disability Register and
  • Letter to join the register
  • NHS guides and
  • Advice for GPs

Within this information, it encourages people to consider contacting their GP or community learning disability nurse for help in understanding or discussing the decision.

SCIE has a good general guide about the pandemic entitled 'COVID-19 Guide for Care Staff Supporting Adults with Learning Disabilities or Autistic Adults'.

What has been risk assessed?

Every person with a learning disability has different needs. If a vaccine is going to be taken up, the whole experience and aftercare should be risk assessed. Things to consider include:

  • Preparation including clothing – to ensure easy access to the injection site
  • Travel arrangements including social distancing, PPE and time management
  • Arrival and waiting at the site (arrangements could be made to ensure queuing is handled by speaking to the GP and logistical team)
  • Responses to GP/vaccination staff
  • Waiting after the vaccination (calm place)
  • Being with the person once home/monitoring their medical needs

Who is pushing for the vaccination?

If you are accompanying the person for their vaccination, they may change their mind once there – it isn’t about getting it done at all costs. If there is overwhelming fear and a refusal where someone has capacity, then encouragement is fine but coercion and strong arming is absolutely not.

A doctor will refuse to give the jab if it is felt that the drive for having the vaccine is coming from someone other than the person with learning disabilities (who lacks capacity and does not want it) as it may be determined this is not in their best interests.

Who is not?

Great sensitivity should be displayed to parents and family members who feel that vaccination has had a detrimental effect on their adult child’s health or where it may cause immense stress to have it.

I am particularly thinking about Autism. Although autistic people are not in a priority group, those with severe or profound learning disability will be in priority group 6.

As a service, it is important to give clear information which only highlights the facts of the process to everybody. This is a painful time for people wanting the best for their loved ones, but it is very important to empathise and direct them to the best information available. The National Autistic Society has released information on their COVID 19 Hub relating to vaccines.

Be kind

The greatest advice I can give is to treat every person as an individual, go through the process in the way that works for them. Where anger or fear show up from family, the individual or carers – this is an honest symptom of the pandemic. No one wanted to make these decisions, and we should treat each other with kindness through this difficult time.

*All information is correct at the time of publishing. Use of this material is subject to your acceptance of our terms and conditions.

Abi Spence

Registration and Inspection Specialist

Abi has worked for and with Government agencies relevant to social care for the past 12+ years. Primarily with the Department of Health, Social Services Inspectorate, Commission for Social Care Inspection (CSCI) and since its inception the Care Quality Commission (CQC). As part of this long involvement Abi has developed a wide and detailed understanding of relevant issues and has worked closely with stakeholders such as people that use services, carers, providers, local government, the Department of Health, Ofsted and the Audit Commission. Read more

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