In July 2021 in England, and later in the other UK nations, the advice to clinically extremely vulnerable (CEV) people was relaxed as it was for the whole country. However they were still advised to take extra care “as someone who is at a higher risk of becoming seriously ill if you were to catch COVID-19”. The shielded patients list (SPL) had been used to identify and contact CEV people in England who were advised to shield and may have needed support to do so. It has also been used to identify and prioritise those who needed a vaccine first and we had been told that the list would be maintained in case it is needed again in future lockdowns. A letter will be sent to patients in England soon to make them aware of the end of the programme and provide further advice.
It has been very positive to learn that the vaccines have been effective in many CEV people but there remains a group of up to 500,000 within the wider group who study after study shows may not have not had an adequate response to the covid vaccines, particularly those who are severely immunosuppressed. This group has been prioritised for the 3rd dose, which we welcome. Recent data from the Office for National Statistics has sadly shown that of the 256 people who have died after having both vaccines (called ‘breakthrough cases’) 76% have been in people who are clinically extremely vulnerable, and 13% of the total were immunosuppressed. The pandemic is by no means over so we do not understand the timing of the shielding programme closure, given that the Government have recognised that those at higher risk may need additional support if the pandemic worsens during winter.
The shielding programme provided a structure through which those most vulnerable to Covid could be contacted and supported when infection rates were high and people were most at risk. In their announcement of the closure of the shielding programme in England, the Government explain that people at highest risk from Covid should in future discuss any issues or concerns with their clinician. We recognise that the individualised support and advice offered by clinicians is vital in helping people understand and reduce their risk from Covid, but consider that this should be supported by national infrastructure of the shielding programme.
Fiona Loud, Policy Director of Kidney Care UK, said:
“The pandemic is far from over for clinically extremely vulnerable people. Data shows that around half a million people(1) have not mounted an adequate immune response to their vaccines and people are still dying(2) despite doing everything they should to be safe. We are completely baffled and very disappointed by this decision to end the shielding programme in England and particularly concerned about the timing of this as we approach the winter months when we know medical teams across the NHS will be under huge pressures. We question whether they will have the capacity to answer individual patient questions on issues such as safety at work, when the shielding programme could have taken some of this pressure off by the provision of targeted advice for people at highest risk from Covid. The programme would also enable the prompt and efficient provision of support should the pandemic change course or cases surge.
“Kidney patients feel forgotten about. They deserve more than this; they need clear advice as to how to keep themselves safe(3); clear guidance for employers about keeping their workforce safe at work; and access to treatments(4) that have been shown to be effective for people who have not made an adequate immune response. Clinicians have a crucial role to play, balanced with their numerous other duties, but it seems completely the wrong time to remove this essential layer of support.”
Kidney patients need a plan
We would like to see a plan which includes:
- clear and updated advice as to how to keep themselves safe as the pandemic continues;
- clear guidance for employers about keeping their workforce safe at work;
- and access to treatments that have been shown to be effective for people who have not made an adequate immune response. Despite being granted government approval in August 2021, and following our repeated calls on the Government we have no information about how vital antibody treatments like Regeneron will be made available to kidney patients who are unable to make an immune response to Covid-19
We note that the Scottish Government has said that it will be maintaining its list and stated: "In light of that - and to avoid any mistaken assumption - it is important to confirm that the Scottish Government is not following suit at this stage. We will continue to use our equivalent list – the Highest Risk List. We have used this throughout the pandemic to communicate with those at highest risk and ensure they have advice. We will continue to keep it under the review, but for the moment we believe it is important to retain it”.
Kidney patients feel forgotten about. They deserve more than this; they need clear advice as to how to keep themselves safe; clear guidance for employers about keeping their workforce safe at work; and access to treatments that have been shown to be effective for people who have not made an adequate immune response.Fiona Loud Policy Director, Kidney Care UK
On 18 March 2020 the UK’s medical officers agreed a list of conditions which should go into a ‘Shielded Patient List’ which was intended to identify those people who are at highest risk from Covid-19. The conditions on the list were updated several times, in particular after using a tool called Q-Risk which looked at the actual outcomes from Covid-19 in people. At the start, people with transplants, and subsequently after much campaigning from Kidney Care UK people on dialysis were added to the shielding list. People at CKD stage 5 were also added in.
Advice to shield was strong, and many took it very literally, not even going out to the dustbins or going for a walk. The mental health impact of the pandemic was and remains very challenging as you told us very clearly through our patient experience surveys. As lockdowns came and went, shielding advice and support to work from home was welcomed by many, alongside the clearer messages about going out for a walk. However, kidney patients told us time and again that the communications to the shielding group were often late or not clear and Kidney Care UK spent much time speaking with the Department of Health and Social Care to make the case to improve communications. We convened focus groups with the shielding group at the Ministry of Housing, Communities and Local Government, and also with MPs, raising all sorts of parliamentary questions. We also supplied evidence to the Health Committee and engaged in similar discussions with both Welsh and Scottish governments.
- There are 3.9m CEV people on the Shielding List. Data shows that 80%-90% mount a good response to the vaccine, that still leaves about 500,00 who don’t.
- ONS data released shows that 252 people died between 2 January and 2 July 2021, despite having had received both doses – of these 193 (76.6%) were CEV
- The government winter plan now refers to the ‘former CEV’ list. Without some kind of database it will not be possible to target further doses to this group of people.
- Despite being granted government approval in August 2021 we have no information about how vital antibody treatments like Regeneron will be made available to kidney patients who are unable to make an immune response to Covid-19
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