How did the third Covid vaccine dose roll-out go so badly wrong?

Along with other immunocompromised people, people with blood cancer have weakened immune systems and so are both more likely to become seriously ill if they contract Covid, and less likely to have responded well to the Covid vaccines.

Because of this, the Joint Committee on Vaccination and Immunisation (JCVI) decided that the 500,000 immunocompromised people in the UK should be given a third vaccine dose (which is different from the booster dose, which covers many more people and was announced later). But two months after that decision, many thousands of people have still not had a third dose.

The failure of the roll-out has caused huge anxiety among people with blood cancer, and the delays may have led to deaths that could have been avoided. We think it is important to set out how this failure happened, and so have produced this long read to tell the story of it. We hope it will help the Government and the NHS learn lessons from what has happened.

On September 1, the JCVI announced that immunocompromised people would be given a third vaccine dose.

While we might have been expecting this to be called a “booster” rather than a “third dose”, the fact that the immunocompromised were being called up first for another dose was not a surprise. On June 30, the JCVI had issued interim advice that a potential booster could be offered from September, and that the highest priority group would be immunocompromised people aged 16 and over.

On July 12, Sajid Javid, Secretary of State for Health and Social Care, told the House of Commons: “The booster programme begins in September and the immunosuppressed and clinically vulnerable will get priority in that; they will be in the initial cohort.”

Just over a week later, Vaccines Minister Nadhim Zahawi told the House of Commons: “The JCVI… has placed the immunosuppressed at the top of the priority list. That campaign will begin in early September.”

On August 19, JCVI member Adam Finn said a decision was “imminent” and suggested the most vulnerable, at least, would be eligible for it.

So the NHS and the Government had plenty of time to get ready to be able to implement the third dose roll out when the announcement came.

Given the challenges there had been earlier in the pandemic with contacting specific groups of vulnerable people, around shielding for example, we were worried about whether the NHS systems would make it difficult to be able to invite immunocompromised people for vaccination.

Following the JCVI’s announcement on September 1, Sajid Javid said: “The NHS will contact people as soon as possible to discuss their needs and arrange an appointment for a third dose where clinically appropriate.”

We issued a statement to the media in which we called the announcement “great news”. But our statement also expressed concern that “in the past, too many people with blood cancer have been missed out in this sort of blanket communication and it is vital that this time everyone gets an invitation promptly”.

NHS England did, indeed, respond promptly. The following day it announced it had sent a letter to all GP practices and organisations across the NHS, setting out “the actions we are asking systems to take from today to begin vaccinating this group with a third dose as part of their primary vaccination course by 13 September 2021”.

Almost immediately, people with blood cancer started asking us if they should get in touch with their GP or hospital team. After discussions with the NHS, we decided to advise people to wait until September 11 (10 days after the JCVI’s announcement) before getting in touch with their GP or hospital, to avoid putting extra pressure on the system.

We accept that our advice to get in touch with GPs after 10 days did add to GP workload. But given what has happened since, with hindsight we wish we had advised people to contact their GPs and hospitals earlier.

It did not take long before our concerns about the roll-out deepened.

We were disturbed that we were getting calls and emails from people with blood cancer who told us GP practices and hospitals had told them they did not know anything about the third doses, or that they knew about them but did not think they had a role in inviting people for them or did not know how to use the system to invite people for them. This was the first indication something had gone badly wrong.

Then on September 14, the JCVI announced a booster programme for everyone aged over 50 or who had a health condition that made them vulnerable to Covid, except if they were immunocompromised. Immunocompromised people should have a third dose and not a booster, the JCVI confirmed, and there are two differences between third doses and boosters:

• You can have your third dose eight weeks after your second dose, whereas the booster was only to be given six months after a second dose.
• For Pfizer, boosters are the same as third doses. But for Moderna, boosters are only a half-dose, while third doses are full doses.

Having a third dose programme at the same time as a separate booster programme might make medical sense but was clearly a recipe for confusion. And within days, we were hearing reports that health professionals did not understand the difference between the two, and of people with blood cancer being wrongly told they had to wait for six months after their second dose.

Before long, over 80% of calls to our support line were from people struggling to get the third dose. We were regularly hearing the same issues from callers around GP practices not knowing about the third dose or their role in it.

With the Covid infection rate rising, we began to hear from people with blood cancer who had failed to persuade their GP to help them and so had gone to their local mass vaccination centre, pleading with the staff there to give them the vaccine.

People with blood cancer aged over 50 also started getting invitations for their booster and were unsure if they should accept. After consultation with the Blood Cancer UK Vaccine Taskforce, we decided to advise people to accept the invitation, as it was better to get another dose of the vaccine as quickly as possible and worry later about how to change the person’s records.

The stress of trying to get a third dose was clearly having a huge impact on people’s mental health, with many people feeling belittled, disempowered and frustrated by being wrongly told they were not eligible for a third dose. We were regularly getting calls from people who felt they had been abandoned and that this meant that after all the challenges from the pandemic over the last 18 months, despair had set in.

During this time, we were talking formally and informally with the NHS leadership, who acknowledged it was not going well but were confident a fix was imminent.

The story was then covered by the Daily Mirror on September 17. Despite NHS England having accepted things needed to improve, there was no acknowledgement of this in the quote NHS England gave to the Mirror, which was as follows: “The NHS is already vaccinating those who are immunosuppressed with a third jab and the timing is decided by patients and their clinical team who know about their ongoing care and treatment. If you haven’t had your invite yet, the NHS will be in touch shortly."

A spokesperson for the Department of Health and Social Care told the Mirror: “We are working with the NHS to make sure everyone eligible for this third dose receives it as quickly as possible”.

But after another week where the situation only seemed to be getting worse, on September 21 we wrote to senior NHS England leadership, asking them to urgently address it. Then on September 28 and with no sign of things improving, we wrote to NHS England Chief Executive Amanda Pritchard, expressing alarm that almost a month into the programme, many GP practices and hospitals still did not even know the third dose programme existed.

On September 30, NHS England told us they had written a letter setting a firm deadline of October 11 for every immunocompromised person to have been invited for their third dose, and that they were confident everyone would get an invitation by then.

That day, the letter went to all NHS trusts (and a similar letter to all GP practices). Like NHS England’s comment to the Daily Mirror, the letter did not acknowledge any problems with the roll-out. But under the heading “immediate action required,” it stated that every immunocompromised person needed to be invited for their third dose by October 11.

We remained worried, but given NHS England’s assurances we decided not to talk publicly about our concerns until after October 11. We thought it was only fair to give the NHS the chance to fix it, now that they were visibly doing something about it. With hindsight, this was probably a mistake.

The following day, we were called by the BBC, which was covering the story. As per our decision the previous day to hold off on commenting publicly, we did not give a comment. They did an article about the issue, and the story was covered on BBC radio and TV. Again, NHS England’s response did not acknowledge the roll-out had gone badly.

As part of this coverage, Health Secretary Sajid Javid was asked about the issue on BBC Breakfast. He replied that the “vast, vast majority” of immunocompromised people had already been invited for the third dose, and that the last few would be invited by the end of the following week.

This was incorrect. We did not know the proportion of immunocompromised people who had been invited, because at this point Northern Ireland was the only part of the UK that was publishing third dose data (Wales and Scotland have also since started to publish data). But we knew the “vast, vast majority” claim could not possibly be correct because:

• We were getting so many calls from people who could not access third doses;
• Kidney Care UK (which also supports immunocompromised people) had told us their support line was also getting lots of calls;
• The NHS leadership had acknowledged the roll-out had gone badly.

We responded by tweeting that “it’s surprising to hear that the Health Secretary seems to be so out of touch with what’s happening on the ground”.

At around this time, the Mail on Sunday was also covering the issue. In its article on October 9, it wrote: “NHS England has told us it is currently battling to resolve technological issues as a matter of urgency, and aims to enable GPs to correctly categorise third primary doses in the coming weeks.” As far as we know, this is the only time the NHS has publicly acknowledged there has been a problem with the roll-out.

With NHS England’s October 11 deadline approaching, we decided to carry out a survey of people with blood cancer to see if they had been invited for their third dose.

We put the survey live at 5pm on October 11, and closed it less than 24 hours later. We were astonished by the level of response, as 2,891 people with blood cancer completed it. That’s over 1% of everyone with blood cancer in the UK.

The results were no surprise – just 44% of people with blood cancer said they had been invited for a third dose. This was over a week after Mr Javid claimed the “vast, vast majority” had been invited.

We should point out that there are always issues with this kind of survey, because the sample was self-selecting and may not be representative. So we should look at the 44% as a finger-in-the-air rather than an exact figure. But while imperfect, it is still the best publicly available data on third dose take-up in England. Two-and-a-half months into the roll-out, NHS England has still not published any data on this.

We wrote a press release about the survey that got coverage in the media. NHS England responded to the story with the following quote: “In addition to hospitals and primary care teams identifying and offering patients the third dose, the NHS is now directly contacting all eligible patients to ensure no one is missed.” Again, we were disappointed by the failure to acknowledge the problem.

The day before this press release was published, we met with NHS England, who told us they were about send text messages and letters to every immunocompromised person with blood cancer, telling them to get in touch with their GP or hospital.

These texts and letters went out in the following days. Many of the people getting them were learning for the first time they were supposed to be getting a third dose. But in many cases, the texts and letters only added to the frustration because the GPs and hospitals these people got in contact with then did not know how they were supposed to be arranging the third doses.

The calls from worried people with blood cancer kept coming. By now, we were informally advising people to go to mass vaccination centres with a letter proving they had blood cancer. We knew some people were having success with this, but it was hit and miss, and it was heart-breaking to hear the stories of desperate people who were being turned away.

By now, we were calling for the Government and the NHS to announce that immunocompromised people would have the right to get a third dose at their local vaccination centre if they showed proof of their condition.

NHS England told us they were looking into this, but were concerned that some immunocompromised people might end up not getting their third dose at the best time. This is because some people are on medication that suppresses the immune system and so they should wait before having the third vaccine dose to give it the best chance of working.

We accepted that allowing people to go straight to vaccine centres would be likely to mean some people would get the third dose earlier than they should. But we believe the potential harm of this would be much smaller than the harm caused by the situation where many thousands of vulnerable people cannot get their third dose.

On October 20, there was a Downing Street press conference that included Health Secretary Sajid Javid and Steve Powis, NHS England’s National Medical Director (who had co-written the letter to NHS trusts on September 30).

We hoped this would be a chance for the Government and NHS to highlight the importance of GPs and hospitals giving immunocompromised people their third dose. But neither Mr Javid nor Prof Powis mentioned the issue at all. Then in the final question, Guardian journalist Peter Walker asked about charities’ concerns that so many immunocompromised people had not yet been able to get their third dose.

Mr Javid replied that some immunocompromised people had not yet had the third dose because their treatment meant it was not the right time. There are some people where this is the case, but this does not explain the many thousands of people who should have had their third dose by then but could not get one.

Over the next couple of days, more people called our support line. They included:

• A GP asking us to help them register someone with blood cancer for a third dose;
• A cancer specialist nurse asking where blood cancer patients could get third doses;
• Someone with blood cancer who had been told by their GP practice they had to “wait their turn”.

Then NHS England told us they had changed the rules so that people could now attend a vaccination centre if they had a letter from their GP or hospital that confirmed they should have a third dose. But this did not address the key issue – GPs or hospitals not knowing about the third dose.

The calls to the support line continued, and it was beginning to feel like an issue that would never be sorted. But then on 29 October, we saw the first signs things were improving. There were suddenly fewer people looking at our website page on the third dose; fewer people were talking about it on social media; and we were getting fewer support line calls.

So our best guess is that things have got significantly better over the last couple of weeks. But our fear is that while people who pushed for a third dose have now been able to get one, there are likely to be many thousands of people who have already been told the wrong information, do not feel able to challenge their healthcare professional, or are unaware of the third dose programme, and so still have not had a third dose. Without the data it’s impossible to say how large this group of people is, but these people remain at increased risk of dying if they contract Covid.

With Moderna now being used more in the booster dose, we also worry that some immunocompromised people might get the wrong vaccine dose (ie the half dose of the booster rather than the full dose they are supposed to get as a third dose). In Scotland, 140 immunocompromised people have been given the wrong dose of Moderna. We also know this has happened in a small number of cases in England.

The NHS across the UK needs to redouble its efforts to make sure every immunocompromised person gets a third dose. Things are better in Scotland, with data showing they have provided a third dose to a large proportion of the eligible group. In Wales and Northern Ireland, the NHS is publishing data, but it sadly shows they need to do better.

As has been the case for many weeks, every day is another day when people with blood cancer are being put at risk of avoidable death because of the failure of the roll-out.

Just fixing the current problem is not enough. For the next few months and perhaps longer, the immunocompromised will need the NHS and the Government to support them. The experience of the last two months has raised serious questions about their ability to do so.

The key questions raised by the failure of the roll-out are:

• Why was NHS England unable to make many GP practices and hospitals aware of their role in the roll-out of the third dose, even after it became clear thousands of people were being given potentially fatal wrong health information?
• Why has NHS England failed to publicly acknowledge the problems with the roll-out?
• Given the failure of the third dose rollout, why did Sajid Javid wrongly claim on October 2 that the “vast, vast majority” of immunocompromised people had been offered the third dose? And if he misspoke, why has he not corrected this?

The last two months have also made it clear that four important things need to change:

• The NHS needs to ensure the data and systems are in place for it to be able to easily communicate directly with the immunocompromised. It is clear Covid will to be with us for the foreseeable future, and so the NHS will need to communicate with the immunocompromised on an ongoing basis. We need to make sure these problems are not repeated.
• The NHS needs to understand why it has been so difficult to get important health messages to hospitals and GP practices, so that it can do this better in the future.
• The NHS cannot give immunocompromised people the support they need until it has the courage to publicly admit when things go wrong. The fact that it has not done this will make it the harder to rebuild trust with immunocompromised people.
• Over the last couple of months, there has been a serious problem of lack of accountability within both NHS England and the Department of Health and Social Care. It has never been clear who has had responsibility for immunocompromised people. At the Department of Health and Social Care and at the NHS in all four nations, there needs to be a named person responsible and accountable for the interests of the immunocompromised.

We will continue to campaign for the NHS and the Government to give people the support they need. If you want to hear more news about this, and about how the pandemic is affecting people with blood cancer, sign up to our e-newsletter. For support dealing with blood cancer or covid, contact our Support Service.

In the next few weeks, it is expected that the JCVI will confirm that people who are immunocompromised need a fourth dose. The NHS needs to start planning for this now. It is also important that the JCVI gives careful attention to how easy it will be to roll-out its guidance will be to roll-out in the real world. The last couple of months have shown what can happen when vaccination roll-out is complicated and has to be done quickly, and so the simpler the guidance for the next dose is, the better.