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

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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.

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Comments

Robert M Wright

Comment date
23 March 2022

Agree with every word of the above. It describes exactly what we experienced as parents of an immunocompromised child. Namely, a lack of clarity, poor communication and the onus upon us to continually chase until we were able to book the third dose.

Kevin Bright

Position
Retired,
Comment date
23 March 2022

I too fell foul of the botched rollout of the 3rd primary vaccine dose.
My hospital consultant confirmed my need for such a dose and to contact my GP to arrange this.
“Not us” said my GP, contact National Vaccine rollout. “You are not eligible as it is not 6 months since your second dose” was the National Vaccine response. 14 phone calls to Hospital, GP and National Vaccine later I was making no progress.

I then wrote to my GP practice manager and to the local CCG explains the problem and enclosing information from the Blood Cancer UK website plus a copy of the JCVI instructions. Within a few hours of delivering the letters I received a phone call from the practice manager saying “ they had recently become aware that there was a problem with the rollout and I would receive a letter the next week detailing how I could arrange a Vaccination appointment.

On the Wednesday of the following week I received a text message (I live in an area of poor reception so it was by chance that I received it at all), I immediately used the link in the text to try and book an appointment. There were no appointments available! Next day I rang the phone number in the text, recorded message saying “Due to staff shortage we are unable to take your call, please ring next week or leave a message”.

Having left a message I received a call the following Tuesday and was able to book an appointment but this was still two and a half weeks later which by this time was the end of October.

The knock on effect being that I was not eligible for my 1st booster until the end of January. A week before the due date I rang my GP Surgery and was told “we have not yet received instructions on how to provide the booster dose for the immunosuppressed ” ring again when you are eligible” . I was unable to book via the National system as this was still showing the 3rd primary dose as a booster dose. One day after the due date I rang the surgery again. Good news, they were now rolling out the boosters. Bad News, somehow I was not on their list of those eligible. Fortunately a member of staff remembered me from the 3rd primary dose saga and agreed that I needed the booster, unfortunately all appointments were booked for their existing supply of vaccine. Ten days later they received a fresh supply and I received an immediate appointment.

Knock on effect I am not eligible for the spring booster until mid May. Am I confident that anyone will know that I am eligible to have this 3 months after the first booster? Not in the slightest!

Gemma is 100% correct in stating what NHS England need to do. Let's hope NHS England are aware of this too, unfortunately this far into the pandemic I now expect to be disappointed.

Susan Mew

Comment date
22 March 2022

I see the same pattern being repeated with lack of access to antivirals to immunosuppressed

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