At Kidney Care UK we are deeply concerned that delays and confusion within the healthcare system as to how immunocompromised individuals (including between 30,000 and 50,000 kidney patients) will receive the third dose of their Covid-19 vaccinations means that many continue to remain inadequately protected as we approach Winter. We encourage anyone who is offered a third vaccine does to take up the additional protection it offers.
Following a deluge of calls and emails from patients who were finding it impossible to book a third dose, the Charity conducted a survey and found that of those eligible for the third vaccine, 87% had not had their vaccine (or had not got an appointment scheduled to receive it). Of those who had not had their vaccine yet, over half (51%) had contacted their GP to arrange it and experienced problems trying to do so (the remaining 49% had not contacted anyone about it; some were not even aware they were eligible to a third dose at all). We are pleased to hear that some units & Trusts that have managed to get their transplant patients vaccinated with a third dose but need to see far more of this happening nationally to avoid a postcode lottery where the amount of protection you have depends on which Trust you are with.
NHS England asked us to find out which practices were not able or willing to assist people with a third dose. We have passed the names of over 80 practices to them and each are being sent specific information about the third dose for immunosuppressed people. Thanks to everyone for your emails. We are pleased to let you know that new guidance to enable you to get your third dose of the Covid-19 vaccination has now been issued.
Throughout the pandemic it has been very clear that this group is at very high risk from Covid-19 and on 1st September the Joint Committee for Vaccination and Immunisation (JCVI) gave its approval of a third dose to improve their immune response. When they have attempted to book this there is a complete lack of understanding of the process from many GPs, kidney doctors or the 119 vaccination booking service, or the IT systems are not in place to support it. People who are immunosuppressed are very aware that they are likely to have a much lower level of protection against Covid-19 from two doses of vaccine. While they wait for the third dose process to be sorted out, they are dealing with the worry of transmission in schools, workplaces or at the shops, particularly now that restrictions such as mask wearing and maintaining social distance have now been removed. Many feel they have no choice but to isolate until the third dose offers them the hope of some protection.
Communication was sent out almost a month ago from NHS England to all GPs, specialists, and vaccination hubs that emphasises the urgency of ensuring heavily immunosuppressed or immunocompromised people have their third dose of the vaccine as soon as possible (and this third dose can be given 8 weeks after the second dose). Yet systems have not been put in place locally, many GPs are insisting it is not their responsibility to help this group, or refer them to the booster programme, a completely separate programme, meant for those in groups one to nine previously prioritised for the first and second doses, to be delivered six months after the second dose.
Some of the comments we received included:
“Called my GP who referred me to 119, called 119 who referred me to GP – I still have no idea how to book 3rd primary dose.”
“I feel a little concerned that I may fall between the two stools of those responsible for calling me (the hospital and the GP), feeling reluctant at this point to contact anyone knowing how overworked they are.”
“I contacted GP surgery to try to book my third covid vaccine. Explained that my renal team had done an antibody test which had come back negative and said I should be a priority for the vaccine; was told they are doing it by age and are concentrating on over 80's. Will get to my age group (40's) maybe by end of October. Someone will contact me then. I work in a primary school where the virus is going round.”
Fiona Loud, Policy Director at Kidney Care UK, says: “This lack of clarity is causing a huge amount of stress, anxiety and frustration amongst thousands of kidney patients. This coupled with the announcement that the shielding programme has closed and people at highest risk are now considered ‘formerly CEV’, means that this group are returning to work and public places with no specific national advice or support, and no access to the third dose that could push their protection beyond the inadequate level provided by the first two doses. It is simply not good enough, and kidney patients deserve more than this. They feel completely let down and many have told us this is the most worried and anxious they have felt throughout the entire pandemic.”
Steve Harrison from Lincolnshire had a kidney transplant in December 2020 and is eligible for the third dose; “Arranging the third vaccine has been a nightmare. Neither my consultant or my GP knew about it. I sent them both the letter that the JCVI had already sent out and was told a week ago that it would be arranged. I chased it again this week only to be told that nothing has been organised and I still haven’t been identified as being in need of the third dose. I have spent days speaking to doctors, consultants, the CCG and I am are still no closer to having my vaccine booked. It’s so important that I get this as it’s another layer of protection to an already compromised immune system but yet again I feel forgotten. Shielding ending, restrictions lifting, the world getting back to normal and moving forwards yet I feel like I am moving backwards.”
Steve’s wife Donna added: “The system feels broken and there is no communication between hospitals and GPs. We shouldn’t have to demand, to fight, for something Steve needs to protect him and that we’ve been told he is eligible for.”
New guidance being issued
The Charity have contacted NHS England, the Vaccines Minister Maggie Throup, the Director of Primary Care, the Royal College of General Practitioners and the Department of Health and Social Care to explain the issues on a number of occasions in September. Following these discussions, all NHS Trusts and GPs have been contacted again by Professor Sir Keith Willett, SRO Vaccine Deployment NHS England, Professor Stephen Powis, National Medical Director of NHS England and Dr Keith Ridge CBE, Chief Pharmaceutical Officer for England on 30 September. This is the letter to GPs and this to Trusts. They have been given urgent instructions that action be taken immediately to contact all those eligible for their third dose by 11 October. We have also been advised that whilst the system is being updated centrally it is acceptable to record these third doses as booster doses although we are seeking confirmation that this will be rectified within six months so that if immunosuppressed kidney patients need to then have a booster dose the system will allow this to be recorded as such.
Thank you for sharing your experiences with us. We know it is a worrying and frustrating time for so many people right now. You are not facing this alone.
Last night NHS England sent us this further advice which you might find helpful, to explain what happens next
Some people who are immunosuppressed due to underlying health conditions or medical treatment may not mount a full immune response to COVID-19 vaccination, and the JCVI recently recommended that a third primary dose will help reduce the risk of getting seriously ill from COVID-19.
NHS England and NHS Improvement wrote to all hospitals and GP practices on 2 September, asking them to identify and contact all eligible patients for a third primary dose with immediate effect. In further letters to all NHS trusts and GP practices on 30 September, NHS England and NHS Improvement asked these sites to ensure they had identified and contacted all eligible patients by 11 October.
Who will contact me about my third primary dose?
- If you are immunosuppressed your hospital or your GP should contact you to organise a third Covid-19 vaccine dose as part of your primary course. You will also be eligible for a booster dose after a further six months.
- You may receive communication from both your hospital doctor and your GP to arrange your jab. It doesn’t matter who contacts you first – your GP or your consultant – the most important thing is that you get your jab as soon as possible to ensure you are protected.
- If your hospital cannot offer you a vaccination on site at the time of your visit, you will receive a letter from your consultant, copied to your GP, so you can access a vaccination at an alternative clinic near to where you live.
When will I get the jab?
- Your hospital consultant will advise on when is the best time to receive your vaccine, which will depend on where you are in your treatment journey for your condition. They will also let your GP know.
- In line with the JCVI’s advice, the third primary dose should ideally be given at least eight weeks after the second dose, with special attention paid to current or planned immunosuppressive therapies.
- Where possible, the third primary dose should be delayed until two weeks after the period of immunosuppression, in addition to the time period for clearance of the therapeutic agent and, if not possible, consideration should be given to vaccination during a treatment ‘holiday’ or at a relative low point of immunosuppression between doses of treatment.
Where will it happen?
- Your hospital consultant or GP will let you know where you can receive your vaccine – in most cases it will be at your usual hospital, or if that’s not possible it could be at a local vaccination site. If it needs to be at a local site, like your pharmacy or GP-led centre, your consultant will let your GP team know so they can work with you to arrange it.
- To be vaccinated at a local vaccination centre, you will need to bring your consultant letter with you so that the team there have all the information they need to vaccinate you.
