Vaccine uptake and consent: what has changed since COVID-19?
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Vaccine uptake and consent: what has changed since COVID-19?

Nick Evans Health journalist

People with learning disabilities are considered an ‘at risk’ group for influenza and COVID, so how can nurses ensure they are vaccinated?

Rates of avoidable death are twice as high among people with learning disabilities than they are in the general population.

Learning Disability Practice. 27, 1, 7-9. doi: 10.7748/ldp.27.1.7.s4

Published: 08 February 2024

Respiratory problems are a major cause – despite the fact that people with learning disabilities have been eligible for the influenza vaccination for the past decade and have also been prioritised for COVID-19 immunisation.

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Picture credit: Tim George

People with learning disabilities under the age of 65 are classed as an ‘at risk’ group for influenza and are eligible for a vaccination from the NHS in all parts of the UK. The same is true for COVID-19 boosters.

Eligibility for vaccines

Everyone aged over 65 can get both vaccinations – although in Scotland universal eligibility for the vaccine starts at 50. Carers of people with learning disabilities are also entitled to both vaccinations.

People with learning disabilities are prioritised because they are particularly susceptible to winter respiratory viruses. Nine in ten have a long-term condition – and nearly half have three or more.

‘The evidence needs to be clear that carrying out the injection itself would not cause serious harm or distress compared with the impact of becoming critically unwell with COVID or flu’

Rebecca Crossley, senior clinical lead for children and young people with learning disabilities

But in terms of uptake, the picture is mixed. Data from winter 2022 show that 62% of people with severe learning disabilities had an influenza vaccination – the highest of all the at-risk groups, above those with conditions such as heart disease, diabetes and morbid obesity.

But once everyone with a learning disability is included the vaccination rate drops to 36%, the lowest of any at risk group. Both measures showed a small drop on the year before.

For COVID-19 vaccinations the numbers are much higher. Data from 2022 show more than 80% of people with learning disabilities had their booster.

There is a legal obligation for reasonable adjustments to be put in place to ensure that people with learning disabilities have equal access to healthcare services.

Reasonable adjustments

For vaccination this can include everything from providing easy-read leaflets about why it is important to be immunised, to offering longer visits and adjustments to the way the clinic runs.

Dan Scorer, head of policy at the charity Mencap, says that services are still not doing enough to accommodate people with learning disabilities. ‘The failure to make reasonable adjustments in healthcare is still a major issue that needs to be addressed, even though it is a fundamental right in the Equality Act 2010,’ he says.

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Vaccinations can now be done in people’s homes

Picture credit: iStock

Services need to become more innovative and learn from some of the good work that has been developed, says Mr Scorer.

‘The pandemic brought about some highly creative best practice, such as administering vaccinations at home or in people’s cars instead of clinical settings. We should be building on that.’

Reasonable adjustments to make when administering vaccinations

  • 1. Offer appointments at the beginning or end of the day when it is less busy

  • 2. Set aside quieter areas for waiting

  • 3. Carry out a pre-assessment to find out if the patient has a needle phobia

  • 4. Offer influenza vaccinations as a nasal spray if needed

  • 5. Consider using a numbing cream

  • 6. Be prepared to take steps to hide the needle, such as using a screen around the arm

  • 7. Distraction can be useful, such as listening to music or playing a game on a phone

Source: Mencap

Pre-COVID practices

RCN professional lead in learning disability nursing Jonathan Beebee agrees but says: ‘I do worry though that now that moment has passed, the adapted vaccination clinics have stopped and we’re drifting back to pre-COVID practices.

‘People are confused too. The messaging about COVID-19 and other winter viruses has toned down and they are not considered as scary as they were.’

Mr Beebee says there are steps that should be taken to make vaccination easier and more accessible.

These include presenting information in the best way for each individual, which for some may be easy read literature, while others may need more creativity such as modelling on a manikin, he says.

‘Familiarity can be helpful too. Consider whether they can have the vaccine at home or if they can visit the clinic beforehand.’

‘Adapted vaccination clinics have stopped and we’re drifting back to pre-COVID practices. Messaging about COVID-19 and other winter viruses are not considered as scary as they were’

Jonathan Beebee, RCN professional lead in learning disability nursing

Mencap recommends offering slots first thing in the morning or at the end of the day, when the clinics are not so busy, and having quiet areas where people can wait.

It recommends that nurses should offer the influenza vaccines as a nasal spray if the individual has needle phobia.

Staff should also ask about hospital passports, Mencap says.

Mr Beebee backs this up and says: ‘They contain excellent advice on how to communicate, what is important, any known allergies and much more.

‘Do all you can to make the experience pleasurable. It needs to be approached with a “no fail” mentality – that no matter what happens they have done really well. If they have a positive experience but the vaccination doesn’t happen then they are more likely to come back for a second attempt.’

Dedicated vaccination clinic for people with learning disabilities

The James Paget University Hospital in Great Yarmouth has gone one step further than simply making adjustments – it runs a dedicated accessible vaccination clinic for people with learning disabilities.

The clinic was set up during the pandemic and now offers COVID-19 booster vaccinations.

Everyone is pre-screened so that staff can work out what adjustments they will need – whether the vaccine needs to be administered in a bespoke way or whether full desensitisation is required.

Senior clinical lead for children and young people with learning disabilities Rebecca Crossley, who set up the clinic when she was the learning disability liaison nurse at the hospital, says: ‘Bespoke may mean the vaccine is given when the person is busy with an activity, such as bouncing on a gym ball or engaging in other sensory stimulating activity. We are guided by them.

Preparing for vaccination

‘We’ve also done vaccinations in the car or the garden outside. But there are others who take more time. We can spend two hours going through and preparing them for the vaccination.

‘We tend to start with pictures of the syringe and needle and then we move on to looking and handling the real thing. We might do some injections on an orange to show how far the needle penetrates the skin.

‘The important thing is a calm, quiet environment. We don’t have any clinical equipment in the room. But it is worth remembering that not everyone with learning disabilities is afraid of vaccinations – plenty are not.’

Capacity to consent

Unless there is reason to doubt capacity to consent to vaccination, capacity should be assumed. If someone is unable to consent, explore whether with the right support they could gain capacity.

But there will be people with severe and profound learning disabilities who are unable to consent. There may be someone registered as having lasting power of attorney for health and welfare who is authorised to consent for the person. But if there is not, a best interests decision may need to be made, as outlined in the Mental Capacity Act 2005.

Senior clinical lead for children and young people with learning disabilities Rebecca Crossley says such decisions should be taken as part of a multidisciplinary team.

‘It should be specific to that person. You need to look at the potential benefits and harms on both sides,’ says Ms Crossley, who works for NHS Norfolk and Waveney Integrated Care Board.

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Influenza virus under magnification

Picture credit: iStock

Ms Crossley, who set up an award-winning COVID-19 vaccination clinic for people with learning disabilities, adds: ‘As some people with a learning disability are at high risk from respiratory infections, it is most likely that vaccination will be in the best interests of the person.

‘The evidence needs to be clear that carrying out the injection itself would not cause serious harm or distress compared to the impact of becoming critically unwell with COVID or flu.’

Read the full article at rcni.com/vaccineuptake

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