COVID-19 vaccinations for individuals with a learning disability or severe mental illness

1. The Welsh Government published its national strategy in January 2021 setting out how the vaccination programme in Wales will be delivered as fast and as safely as possible. The strategy explains the groups of people who are considered a priority to receive the vaccination and follows the UK’s independent Joint Committee on Vaccination and Immunisation (JCVI) agreed list of conditions to be prioritised for vaccination. This approach is being taken by all four nations in the UK. The JCVI list is at Annex 1.
    
2. The list prioritises those individuals where the data has shown they are at increased risk of being severely ill if they contract COVID-19. The aim of prioritising people for vaccination is to reduce the number of hospitalisations and deaths.
    
3. The JCVI has set out that people with a severe/profound learning disability and individuals with schizophrenia or bipolar disorder, or any mental illness that causes severe functional impairment should be invited for vaccination in priority group 6.
    
4. Identifying individuals within these groups from health records may be challenging and could lead to some individuals not being identified for vaccination (the underserved population). These individuals will also require information to be accessible and will require reasonable adjustments to ensure high uptake of vaccination.
    
5. The principle and value of being more, rather than less, inclusive to avoid missing those vulnerable people who should be vaccinated is broadly accepted. 

6. The Welsh Government is taking an inclusion approach to the identification of those with severe/profound learning disability and serious mental illness. We expect this to result in more individuals being prioritised under priority group 6 than might otherwise be the case based on a strict interpretation of the JCVI guidance. We are providing practitioners with discretion to ensure no vulnerable person in these groups is missed or left behind.
    
7. Health Boards are responsible for delivery of the vaccination programme working with partner organisations, including GPs, the local authority and third sector organisations. 
    
8. Health Boards can utilise the local knowledge of third sector partners, local authorities, community learning disability teams, community mental health teams, and where appropriate specialist services such as substance misuse services and families or carers to identify people who are eligible to be added to the priority group 6 list.
    
9. The existing GP lists and identification codes for learning disability and serious mental illness will be loaded into the Welsh Immunisation System (WIS) and added to the priority group 6 list.
    
10. To ensure the most vulnerable are offered a vaccination, clinical discretion is required to add individuals to priority group 6, who may be eligible but not listed in the national system. 
     
11. General Practitioners, community mental health teams and community learning disability teams have a key role in helping to identify people who are eligible for vaccination under priority group 6. An inclusive rather than exclusive approach is encouraged.
     
12. In using professional judgement and clinical discretion the following risk factors will be helpful to consider:

• clinically vulnerable and frailty: the presence of pre-existing/co-occurring health conditions and level of complexity of those health conditions
• ethnicity
• socio-economic factors
• type of accommodation: living in a communal setting, for example, in supported living or a residential rehabilitation setting
• unable to practise consistently, protective behaviours such as social distancing, wearing a mask and hand hygiene
• ability to adhere to treatment routine and tolerate intervention
• known to services such as the community mental health team, or the learning disability team

13. This blended approach to identifying people is in line with approaches being implemented in other UK countries.

14. Individuals will generally feel less anxious having their vaccination in the familiar and smaller environment of their GP Surgery. To encourage take-up, vaccination should be delivered routinely, where possible, at GP practices rather than mass vaccination centres, unless a personal preference or medical reason requires otherwise. Consideration should also be given to use of other clinical settings, such as secondary health care clinics, in order to facilitate access to vulnerable groups and maximise up-take.
     
15. Considering an individual from this under-served group to have ‘opted out’ of vaccination should only be made where there is clear information the individual has chosen not to be vaccinated, and their decision is, as best as possible, recognised as an informed decision. 
     
16. Reasonable adjustments will need to be identified and put in place to enable individuals to be supported and to feel confident to attend and receive their vaccination; this should include taking the individual and/or family preferences into account wherever possible. 
     
17. Where a best interest’s assessment is required to support capacity, existing best interest processes involving families, support staff and appointed advocates should be used wherever possible.
     
18. Practitioners working in community mental health teams, and learning disability teams are skilled and knowledgeable in supporting the requirement for reasonable adjustments and best interests’ assessment. The guidance best interests at Annex 2 may be useful.

This priority list is being followed by all four nations in the UK. 

The list prioritises those individuals where the data has shown they are at increased risk of being severely ill if they contract COVID-19. The aim of prioritising people for vaccination is to reduce the number of hospitalisations and deaths.

1. People living in a care home for older adults and their staff carers.

2. All those 80 years of age and older and frontline health and social care workers.

3. All those 75 years of age and over.

4. All those 70 years of age and over and people who are extremely clinically vulnerable (also known as the “shielding” group) – people in this group will previously have received a letter from the Chief Medical Officer advising them to shield.

5. All those 65 years of age and over.

6. All individuals aged 16 years to 64 years with underlying health conditions ^{[footnote 1]}, which put them at higher risk of serious disease and mortality.

7. All those 60 years of age and over.

8. All those 55 years of age and over.

9. All those 50 years of age and over.

Principles of the Mental Capacity Act (MCA)

The MCA provides a legal framework in England and Wales for decision-making on behalf of people aged 16 or over, who cannot make decisions for themselves. It is important to note that capacity is decision-specific: it focuses on a specific decision that needs to be made at the time it is required.

There are five key principles that form the basis of the MCA and due account should be taken of these in implementing this guidance.

1. People must be presumed to have capacity to make their own decisions, unless proven otherwise, on the basis of assessment.
2. People should be offered support to make decisions.
3. A person should not be regarded as incapable of making a decision simply because their decision may appear unwise to others.
4. If a decision is made on behalf of a person who does not have mental capacity, then it must be made in their best interest.
5. Before doing something to someone or making a decision on their behalf, consideration must be given as to whether the outcome could be achieved in a less restrictive way.

Where it is proposed to provide an intervention to a person who has been assessed as lacking capacity to consent, in the absence of a valid advance decision to refuse treatment, a health and welfare attorney registered with the Office of the Public Guardian, or a court appointed deputy who is authorised to make the decision, a ‘best interests’ decision is required. The MCA sets out a checklist of factors which must be considered when making a best interest decision, these include:

• taking account of all circumstances relevant to the decision
• determining whether the individual is likely to regain capacity
• encouraging the individual to participate in the decision making, as fully as possible
• so far as possible, considering the individual’s wishes and feelings
• consulting others involved in the person’s life

Making a best interest decision to support vaccination where people lack capacity

Some people are fearful or anxious about having vaccines or other interventions using needles, this may be due to a range of reasons including inexperience of exposure to needles, or a poor historical experience, cognitive issues related to the ability to understand what’s happening, fear of exposure to pain or sensory issues.

Mencap has produced this useful factsheet on the COVID-19 vaccine.

For anyone to be able to make an informed decision on whether to have the vaccine their decision will be weighed up based on:

• the potential benefit of having the vaccine
• the potential side effect of having the vaccine
• the potential negative effect of not having the vaccine

Making a best interest’s decision around vaccination

Health services are required to have due regard to their obligation to advance equality under the Equality Act 2010; this includes recognising and factoring-in the vulnerability of different groups of people with protected characteristics; and inequalities in access, experience and outcomes in health services. 

Where it is decided that vaccination is in the person’s best interests, plans should be developed for the administration of the vaccine in a way that minimally interferes with the individual’s rights. This should include consideration of the requirement for a range of reasonable adjustments that may help ensure the safe administration of the vaccine. It is important that planning to support individuals to have the vaccine is in a person centred, least distressing and least restrictive way. 

Where there is no consensus as to whether the vaccination is in a person’s best interests, consideration should be given to instructing an Independent Mental Capacity Advocate (IMCA) and if it would be appropriate to consider an approach to the Court of Protection.

Where the reasonable adjustments felt to be required to ensure successful vaccination, are felt to amount to restraint as defined within the MCA, section 6 of the Act will apply. The necessity of vaccination has already been agreed, however further attention may be required to agreeing the proportionality of the proposed mode of administration, including any use of restraint. Those contributing to the best interest decision should consider:

1. the seriousness of harm associated with failure to vaccinate
2. the seriousness of any harm associated with proposed restraints, including physical and emotional trauma (also taking account of steps that can be taken to mitigate any such harm)

Reasonable adjustments

In order to support individuals to have a positive experience of the vaccine there are approaches that can be supported using accessible information and reasonable adjustments.

Communication: ensure that all communication is delivered in a way that the person can understand and is supported by whatever visual information they may need to enhance their understanding. Think about the best style to take with the individual, do they respond to happy, jovial communication or a more instructional style? Would a sentence strip, social story or now/next board help the person plan for what is happening?

Relaxation: consider whether the person can be supported to plan for having their vaccine by introducing some relaxation techniques, music, sensory smells and sounds, some deep touch to the arm (or area on the body) where the vaccine will be delivered, massage or use of massage-type equipment.

Practice: in preparing can you ask the person to practice sitting still, in a specific agreed place. Support the person to wear clothing on the day of the vaccine that will aide access e.g. a short sleeved t-shirt, if this is not what they like or how they would usually dress then encourage them to practice rolling up their sleeve. A dark coloured top might help the individual if they are anxious around blood.

Environment: think about making the environment as calm, friendly and engaging as possible for the individual, minimise exposure to items which may cause distress or distraction. It may be best to use an environment the person chooses, e.g. a quiet room or the lounge. Plan with them where they want to sit and be when they have the vaccine and what they might want afterwards e.g. first vaccine, then favourite TV programme. Minimise pressure on the person and plan for attempting less restrictive approaches with contingencies in place depending on how the person responds.

Preferred objects/activities: some people may benefit from seeing a story about the vaccine or having an injection, others may like to see someone else having the vaccine (on a YouTube video or in a picture). Role play using soft toys or dolls may be helpful in preparing the person.

Using pain relief/numbing cream: could be considered based on experience of how people have responded historically and whether there has been benefit.

Plan for distraction: can you have items at hand that may be calming and reduce their anxiety while waiting for and having the vaccine? Music, something on an iPad, a book or magazine, a sensory item, small things they could hold in one hand, food or drink items etc.

Deciding to try another time: it may be appropriate in some situations if the person is upset or distressed on the day of the vaccine that an attempt could be made at another time, in another environment or with another team. It is important to remember that currently there are two doses and if the experience of the first dose is too distressing or traumatising then the person may not be easily supported to access the second dose.

After vaccination: we need to be mindful that there may be some impact on the person’s behaviour post vaccine, they may have sore arm, headache or other effect that are difficult for them to understand and recognise these as potential side effects. Preparing a plan with the person for how they want staff to support them after having the vaccine is important for them and the team.

Deprivation of liberty safeguard resources

Lasting Power of Attorney and the COVID Vaccine

BMA Best interests-decision making for adults that lack capacity

BMA Best interests decision-making for adults who lack capacity toolkit

Mental Capacity Act: deprivation of liberty guidance and forms

Blog written by Alex Ruck Keene from Essex Chambers 

[1] Underlying health conditions:

• Chronic respiratory disease, including chronic obstructive pulmonary disease (COPD), cystic fibrosis and severe asthma
• Chronic heart disease (and vascular disease)
• Chronic kidney disease
• Chronic liver disease
• Chronic neurological disease including epilepsy
• Severe and profound learning disability
• Diabetes
• Solid organ, bone marrow and stem cell transplant recipients
• People with specific cancers
• Immunosuppression due to disease or treatment
• Asplenia and splenic dysfunction
• Morbid obesity
• Severe mental illness