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What should you do if you have blood cancer and cannot get a third Covid vaccine dose?

30th Sep 2021

With many people reporting issues with the rollout of third doses of the vaccine, we’ve set out what you can do right now to try to get your third dose if you have not already been invited for it.

Page updated 25 October 2021

At the beginning of September, in response to JCVI advice, the UK Government announced that people who are immunocompromised (including people with blood cancer) were to be offered a third dose of the Covid vaccine.

We welcomed this, because people with blood cancer have weaker immune systems and so are less likely than the general population to have been protected by the first two doses.

The NHS said it would start giving these third doses to immunocompromised people, but for several weeks we have been inundated with calls from people who are struggling to get their third dose.

Something has clearly gone badly wrong with the roll-out. In some cases, GPs or treating teams haven’t been aware they should be giving people with blood cancer a third dose; other GPs or treating teams want to give people a third dose but are struggling with the process. We’ve been working hard behind the scenes to ensure the NHS can sort this issue out as quickly possible.

We understand this is an anxious and frustrating time for people with blood cancer, who rightly want to get the maximum protection against Covid as soon as possible. While we are pleased that the NHS has recognised the urgency of this by writing again to GPs and hospital teams, we remain concerned about everyone getting their invitations.

We will update this blog when we have more information, but in the meantime, we’ve set out what you can do right now to try to get your third dose if you have not already been invited for it.

The third primary dose should be given at least 8 weeks after your second dose, as explained in the NHS letters linked above. This is different from a booster (for people without blood cancer) which is being given 6 months later.

Text messages from NHS England

We understand that in England, people who are immunosuppressed are now getting text messages from the NHS informing them they should have a third dose of the vaccine. While it's a positive step that the message is getting out to people in this way, we know that many are still having difficulty contacting their GP or hospital team as directed. This is of course extremely frustrating and we're continuing to talk to the NHS about improving the system around this.

We hear that some people have successfully received their third dose by walking into a mass vaccination centre. However, NHS England's advice is still to contact your GP or hospital team to book your third dose. If you’re currently having blood cancer treatment, or had treatment recently, it’s important to take medical advice about the timing of your third dose.

Steps you can take to get your third dose

We know that many GPs and hospitals are overwhelmed with calls about this, and some people with blood cancer are being told they should be waiting to be invited rather than reaching out. But given how important it is to get the third dose, and that they were supposed to have started several weeks ago, it is worth being as persistent as possible.

Wherever you live in the UK, show your doctor the guidance from the JCVI and this joint statement from us and the British Society for Haematology, which explains who should be getting a third dose.

If you are struggling to get your third primary dose, but you are invited for a booster dose (which may be happen if you’re over 50 or have another health condition), you should take it. But ask the person giving it to you what vaccine you're having and what dose is being given. This is because if Moderna is being used as a booster in the general population, it is given as a half dose, and people with blood cancer should be given a full dose. You should check this with the person giving you the vaccine. Pfizer boosters are always given as a full dose. We have been told that Moderna is not being used for booster doses at the moment so it should not be an issue, but we expect the NHS to start using them for booster doses in the next few weeks.

If you’re still finding it difficult to get a third dose, call our support line on 0808 2080 888 and they can talk this through with you further.

Here's what we know about booking your third dose in each of the four UK countries:

England

In England, you should be contacted by your GP or hospital team offering you a third dose. Your hospital might ask your GP to arrange it for you. On September 30, NHS England sent a letter to all GPs and treating teams setting a deadline of October 11 for people who are immunocompromised to be offered a third vaccine dose (unless they have got medical advice that it is not the right time for them to have a vaccine). You could show these letters to your GP or treating team if you are having problems getting a third dose: Letter sent to GPs about third vaccine doses; Letter sent to treating teams about third vaccine doses. Some people have had success by going to their haematology team first, who can then contact your GP.

Immunosuppressed people in England are now receiving text messages from the NHS encouraging them to get the third dose, but are still being directed to contact their GP or hospital team.

Scotland

In Scotland , you should get an invitation from the NHS or your Health Board. Third doses are explained in Scotland’s Autumn and Winter Vaccination Strategy (pages 11-12), which states, 'Initial letters will be issued inviting individuals to a scheduled appointment at community based clinics from week beginning 27 September 2021, with work ongoing with specialist clinicians to identify and invite other severely immunosuppressed patients in due course.' If you haven't been invited yet in Scotland, speak to your specialist doctor or GP and show them the document linked above. If you still have problems, you could contact your area's Health Board. Several Health Boards have information about third primary doses on their website, for example: NHS Western Isles and NHS Highland.

Wales

In Wales, those who are eligible are being identified and contacted by their Health Board, which will offer an appointment at a mass vaccination centre. See this web page from Public Health Wales explaining about third doses. If you need to contact your Health Board, you can find contact details on this list of Health Boards in Wales.

Northern Ireland

In Northern Ireland, people will be identified by their Trust clinician or GP and invited in to receive a third primary dose. See this web page from NI Direct explaining about third doses. If you need to contact your Trust, use this list of Health Trusts in Northern Ireland.

Not sure if you're eligible for a third dose?

If you’re not sure if you are eligible for a third dose, a good rule of thumb is that if you have blood cancer and were told earlier in the pandemic that you were clinically extremely vulnerable, then you should probably be getting a third dose.

Or if you have been diagnosed since then or think you should have been considered clinically extremely vulnerable, it is worth talking to your hospital team – the only people who have blood cancer who might not be eligible are those who have been in remission for some time and their immune system has fully recovered. But it’s still worth checking if you think you should be invited but haven’t been.

For some people, their doctor may advise them that it is not the right time to have their third dose, for example it may be better to wait to have it if you have just had a stem cell transplant or are taking treatment that will make their immune systems less likely to respond to the vaccine. These decisions are made on an individual basis but it’s still important you are clear on why you might not be receiving the third dose at this stage.

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