In September 2021, the Joint Committee on Vaccines and Immunisations (JCVI), whose guidance informs decisions about vaccination programmes across the UK, advised that people with weakened immune systems should have a third dose of the COVID-19 vaccine. The third dose is only being offered to people who are less likely to have had a strong immune response to the first two doses because they were immunosuppressed at the time of their first and second doses. The JCVI said that the third dose is to be given at least 8 weeks after the second dose.

You’ve told us that it hasn’t always been made clear what the third dose is, why you may or may not need it, and what the difference is between the third dose and the booster. You’ve also shared the problems you are having with booking an appointment.

We’ve shared your experiences with Departments of Health/Public Health across the four nations, as well as the JCVI. We’ve also worked with other charities to raise your concerns directly with government ministers and officials, through the media, and to politicians and employers.

We’ve called for:

Clearer communications
Better IT systems to identify, book in and record doses of the vaccine
Meaningful employment advice
Continued meetings between charities and the Vaccines Minister
A Minister for Immunocompromised People

Clearer communications

Given the confusing information surrounding the roll out of the third dose we have asked for clearer information from the government and the NHS to communicate what the third dose is and how to get it.

Better record sharing and IT systems

The roll out of the third dose has exposed a weakness in NHS IT systems, which do not support shared data by GPs and hospital specialists. This makes it very difficult to identify those who are eligible for the third dose. This, combined with the pressures of expanding NHS waiting lists, upcoming winter pressures and roll out of the booster programme has thrown up unique challenges. This article written for the BMJ (British Medical Journal) explains how hard it is to set up a vaccination process.

We have highlighted our concerns with current IT systems in regular meetings with officials and raised the importance of future shared care records, personalised care plans and IT systems which give GPs and hospital teams access to the same information about what medicines individuals are taking.

Meaningful employment advice

Working with other charities, we’ve shared your anxiety around returning to work. We asked the UK government to encourage employers to let staff with health conditions to work from home or make reasonable adjustments like travelling outside peak hours to manage their personal risk level. We’ve invited the UK government to work with patients’ organisations, clinicians, and employers to produce clear and meaningful guidance that promotes safe working for all. We believe this information should be made available via hospitals and NHS websites and signposted to at appointments.

Regular meetings

In coalition with other charities, we’ve written to the new Vaccines Minister, Maggie Throup MP, to raise these views and ask for regular meetings, as we did with the previous Vaccines Minister Nadhim Zahawi MP (now Education Minister).

A Minister for Immunocompromised People

We’ve joined 12 charities and a group of MPs and Peers, to call on the UK government to appoint a Minister for Immunocompromised People. This role would help to ensure that the needs of people who are immunocompromised across all nations of the UK were considered and prioritised. The Minister would also ensure this group receive the appropriate support while COVID presents a continued risk to their wellbeing.

Making sure that policy makers, NHS leaders and politicians are aware of the needs and concerns of people with Crohn’s and Colitis is a critical part of our work. Thank you for sharing your experiences which enables us to do this.