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Why didn’t the Covid-19 vaccination roll-out work for immunocompromised people?

This is a guest blog.
Guest authors bring different perspectives and diverse voices to our blog. They do not always represent the views of The King’s Fund.

Authors

  • Gemma Peters photo

    Gemma Peters

    Chief Executive at Blood Cancer UK
  • Gemma Peters photo

    Gemma Peters

    Chief Executive at Blood Cancer UK

Following our report on the Covid-19 vaccination programme, Gemma Peters, Chief Executive of Blood Cancer UK, contacted us about the challenges people with blood cancer and others with compromised immunity faced during the vaccine roll-out. In this blog, she highlights the lessons that must be learnt from their experiences.

There is much about the Covid-19 vaccine roll-out in England to be proud of, and we should celebrate those things and make sure we are able to repeat them for the future. But it is equally important to learn from the things that did not go well.

And for many of the UK’s 500,000 immunocompromised people, who are at particularly high risk from Covid, the third dose rollout felt less a national triumph and more a Kafkaesque nightmare.

'Their weakened immune systems meant they were less likely to have been protected by the first two doses than the general population.'

Their weakened immune systems meant they were less likely to have been protected by the first two doses than the general population. Because of this, the Joint Committee on Vaccination and Immunisation recommended they have a ‘third primary dose’ eight weeks after their second dose (whereas other groups were to get a booster six months after their second dose). Because some immunocompromised people would be on immune-suppressing treatment and so might be better waiting for a few months before having their third dose, they would need written confirmation from their doctor before having it.

This made theoretical sense, but Blood Cancer UK worried the additional complexity risked making the programme harder to deliver. And with the infection rate rising, we feared the consequences.

The programme got off to a bad start when NHS England developed a roll-out plan that was complex and difficult to understand. It then exacerbated this with almost unbelievably poor communications, with immunocompromised people being told to wait to be contacted but communications to the system seemingly limited to some letters published on the NHS England website that large parts of primary care, in particular, did not seem to know about. This left many of the frontline staff supposed to be delivering the third dose roll-out unaware the programme even existed.

The result? Huge numbers of immunocompromised people were left anxiously waiting for a vaccine invitation that never came. When they called their GP or hospital team for help, many of the frontline staff they spoke to either did not know what they were talking about or wrongly told them they had to wait until it was six months after their second dose.

At this point, many immunocompromised people gave up trying. Others resorted to turning up to vaccination centres without appointments, pleading with staff there to give them a third dose. Sometimes it worked; sometimes it didn’t.

I never thought that in the 21st century I’d see cancer patients having to beg for lifesaving medical intervention they are entitled to. But this is exactly what unfolded last autumn.

'By early October, when every immunocompromised person should have been offered a third dose, we carried out a survey that suggested just 44 per cent of people with blood cancer had been offered one.'

By early October, when every immunocompromised person should have been offered a third dose, we carried out a survey that suggested just 44 per cent of people with blood cancer had been offered one. NHS England did not publish data on third doses, but in mid-November it finally confirmed that almost 30 per cent of immunocompromised people had still not been invited.

As well as the mental health toll, this failure almost certainly cost lives. There were 458 people with blood cancer who died of Covid-19 in England and Wales between October and December 2021. How many of them would have lived if the third dose roll-out had gone better?

As so often, people from ethnic minority groups were hit hardest. By mid-December, less than 50 per cent of immunocompromised people in England from Pakistani, Black African, Black Caribbean or Bangladeshi backgrounds had had a third dose. For people from a White British background, it was 84 per cent.

Given the huge anxiety and likely deaths caused by the failure of roll-out, NHS England owes it to immunocompromised people to fix the problems that caused it, not least because those problems are still affecting delivery of third doses and the roll-out of the boosters for the immunocompromised. It should focus on four things.

  • Two years into the pandemic, it is unacceptable that NHS England has neither a register of immunocompromised people, nor a reliable way of contacting them. It needs to establish one urgently, making sure it contains every immunocompromised person and that they can be easily contacted.

  • It still unclear who in NHS England was accountable for immunocompromised people, and this lack of either clarity or leadership has made most aspects of the pandemic worse for this group of people. There should be a named person responsible and accountable for the interests of immunocompromised people in the NHS in all four nations, and at the Department of Health and Social Care.

  • There was a persistent supply of misinformation through 119, 111, hospitals, GP practices, and vaccination centres. NHS England needs to understand and explain why it was so difficult to get critical information into the system.

  • While privately acknowledging the issues, NHS England’s defensive public statements failed to acknowledge the reality of people’s experiences. NHS England needs to find the courage to change its culture to one where it can be open when things that go wrong. Clinicians are expected to have a duty of candour – the national bodies should have one too.

If the NHS seriously addresses these four points, then something good can come from this failure. Yet I worry that the story of third doses for the immunocompromised risks being erased from the vaccine rollout narrative, and that the history we fail to learn will be the history we will end up repeating.