Vaccinating unpaid carers: the need for a clear plan

Unpaid carers play a vital role in supporting vulnerable children and adults, providing essential care worth more than £132 billion a year to family and friends who are ill or disabled. With access to formal care services disrupted by the pandemic, seven in 10 unpaid carers are now doing even more. Many people are relying on this lifeline of practical support to keep them safe and well. 

Rightly, unpaid carers have been included in the Covid-19 vaccination programme priority groups list, but until now there has been no clear plan for identifying carers, with wide variation in how this is happening in different places.

GP practices in some areas have been vaccinating people based on lists from local carers’ groups, while other practices have sent letters to anyone who might be a carer based on practice records of people with a disability. In some vaccination centres, if a carer has accompanied a high-priority patient (such as an adult over 80) for their vaccine, they might be offered one too, yet elsewhere vaccinations for carers may not even have started.

Thankfully NHS England have this week written to practices and primary care networks asking them to vaccinate unpaid carers, and are set to publish their Standing Operating Procedure with further details. What is in it will be vital, as without a clear plan for how the vaccination programme will identify unpaid carers, many could miss out.

How have carers been identified for the vaccination programme?

Details on this have been thin on the ground. According to government guidance, adult carers are defined as “those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill”.

Of the 61 million people currently living in Scotland, England and Wales, only 2% – or just under 1.5 million adults – receive a carer’s allowance, according to records held by the Department of Work and Pensions. But analysis by Carers UK estimates there are up to 13.6 million carers in the UK – most of whom would miss out if the vaccination programme for carers is based only or primarily on the criteria of receiving a carer’s allowance.

This approach also risks leaving certain groups out. Specifically, it risks excluding young adult carers who are in education more than 21 hours a week; adults who are working and earn more than £128 per week; and those providing a substantive number of hours of care (for example between 20 and 30 hours per week) but less than the threshold of 35 hours – all of whom are ineligible for a carer’s allowance. Young carers under the age of 16 would also be excluded.

Can bringing in data from local councils and GP practice records help to identify carers?

Data from local councils realistically offers little by way of additional help, given that 48% of local councils in England don’t know how many carers currently live in their area.

One good option might be to bring in data from GP practice records, which do also identify carers. The problem is that these records are woefully incomplete, and creating a carers’ vaccination list based on them would likely only pick out a small proportion of carers.

What needs to happen now?

The upcoming Standing Operating Procedure should give more details about how vaccinations for unpaid carers will work in practice. The plan needs to be clear, and built around three core principles:

1. It must be comprehensive

Health informatics teams need to work with vaccination programme leads to make the best use of available data to identify unpaid carers, meaning vaccinations are offered to the right people. That will mean pulling together data from multiple sources including local councils, GP practices, and records held by the Department of Work and Pensions on who receive a carer’s allowance.

2. It should be fair and inclusive

Encouraging carers who think they should receive a vaccination to get in touch with the NHS – as has happened recently for those over 70 – could help. But social media campaigns and work with membership organisations must not disadvantage certain groups of carers. They include unpaid carers who don’t have access to or lack confidence with social media, or BAME carers less likely to belong to a membership organisation.   

3. It needs to have clear and consistent messages

It’s essential that all carers in the UK get clear and consistent messages about who is eligible for vaccination priority – particularly as the response to the pandemic has been criticised for a lack of consistency in its messaging.   

Government guidance on the vaccination programme prioritises people who are receiving a carer’s allowance, and those caring for someone with a very high level of disability whose welfare depends on their carer.

Advice to carers provided by the Scottish Coalition for Carers gives a slightly different message, suggesting that to be prioritised for a vaccine you do not have to receive a carer’s allowance or be registered as a carer with your GP, and that you can be intending rather than actually providing care.

Carers need to know what they can expect, while messages about who is eligible also need to be consistent.

Unpaid carers must also join the vaccination campaign success

While good progress is now being made vaccinating the 1.5 million paid carers working in social care, it’s important that unpaid carers – of which there are nine times as many – are not forgotten. 

It is reassuring that welcome steps are now being taken on this. But without a concrete and actionable plan, many unpaid carers could fall through the gap – missing out on vaccinations that are an essential part of the government’s strategy for protecting the health and social care workforce during the pandemic, and putting vulnerable adults and children who depend on their care at risk.