Last week we wrote to every MP to outline some of the things which will be needed to protect and support people with kidney disease at this time and as we move into the weeks and months ahead. In light of the latest announcement we are explaining them here and encourage you to write to your own MP to ask what they are going to do to help you to live with Covid-19.
Fiona Loud from Kidney Care UK said “We urge the government to prioritise clinically extremely vulnerable people by making preventative antiviral and antibody treatments available now – and to rethink their further plans to charge for lateral flow tests and remove a duty to self-isolate whilst infectious. Despite Omicron being a milder illness for the general population, the impact on higher risk groups is being felt through increased infections and in the cancellation of surgeries and restrictions in transplant services. These further decisions and a record of really poor communication will make things harder for people with kidney disease who have already spent two years under Covid-19 stress”
It is going to take much longer for people who are especially vulnerable to Covid-19 to somehow learn to live with it. This will not happen without further support. People with kidney disease are extraordinarily resilient but they have had a very hard time during the pandemic. A paper from the UK OpenSAFELY study showed that, unfortunately, the rates of hospitalisation and death in those living with late stage kidney disease, on dialysis or with a transplant have been higher than in many other health conditions.
Those of us who are clinically extremely vulnerable are encouraged to keep our distance, stay very cautious and get boosted. But we have done nothing but stay cautious over the last two years; shielding advice was observed scrupulously but has now been simply dropped, although the vulnerability has not magically disappeared. As the OpenSAFELY study shows, this is a group that requires specific and tailored support. Now even the name has been quietly dropped and conveniently forgotten; it is, after all, inconvenient to admit there are hundreds of thousands of people, who don’t fit the ‘ride it out and take sensible precautions’ mantra.
Kidney patients and the many other clinical extremely vulnerable people need:
Immediate, simple access to the fourth dose of the Covid-19 vaccination programme. The JCVI are recommending a fourth dose for immunosuppressed people. But patients are telling us they need to push for it and that there is a lack of awareness in vaccine teams. It cannot even be booked online. This must change now.
Pre-exposure protection. The rollout of antiviral treatments is extremely welcome for people with kidney disease. However, rather than exposing people to the risk of Covid-19, we’d like to see the government pursue a policy of pre-exposure protection. We have been told that there are no such considerations in the UK. However, if we all need to live with Covid-19, we need a transparent debate about the potential for preventative treatments and all avenues pursued to support a prevention-rather-than-cure approach in people for whom the current vaccines are less effective.
Access to a four-course vaccination programme for those on dialysis and at late stage kidney disease, in line with the eligibility they already have for antibody treatments. This is clearly supported by the evidence of real life outcomes in terms of hospitalisation and death. It makes much more sense to vaccinate this group and gain whatever level of protection is possible than wait to be infected and then get treatments, end up in ICU or worse.
Financial support to prevent people having to choose between their health and their livelihoods. The removal of the work from home guidance will expose people to greater risk. We have prepared some guidance to help them, supported by 20 other UK charities.
Public recognition by our politicians that we exist and continue to need support, with updated information set to each of them directly. Many are staying away from others, or effectively shielding but without any support. For months we asked that people with kidney disease should be given some constructive information and advice. Late on Christmas Eve, finally some updated guidance for the former clinically extremely vulnerable group and new guidance for people who are immunosuppressed was published. It simply summarises the need to be cautious and links to the vaccination and antivirals programmes. This needs to go further. There was also a decision only to publish the guidance online and not to write to anyone, which means many people who need support and guidance won’t be aware of it anyway.
There is more that can and must be done to provide protection and support. This is not an intractable problem, there are clear and immediate steps that the Government can take to address these problems. Sadly, there is a likelihood that more people will continue to be significantly affected and unable to have surgery or a transplant, because their health has deteriorated so much during the pandemic or because they are not as well protected from Covid-19. The reality is that it is simply not possible to just move on and ‘live with it’.
What does the new guidance mean?
From now on
- The Government is no longer asking people to work from home if they can. People should speak to their employers about arrangements for returning to the office, and should follow the Working Safely guidance.
- Face coverings will no longer be advised in classrooms for both staff and pupils.
From Thursday 27 January:
- Venues and events will no longer be required by law to use the NHS Covid Pass. The NHS Covid Pass can still be used on a voluntary basis as was previously the case in Plan A.
- Face coverings are no longer required by law in any setting. Public health guidance will remain in place, suggesting individuals should continue to wear a face covering in crowded and enclosed spaces, where you may come into contact with people you do not normally meet.
- The Department for Education will remove national guidance on the use of face coverings in communal areas, with local Directors of Public Health able to recommend the use of face coverings in education settings across their area only where the Department and public health experts judge the measure to be proportionate due to specific health concerns. This is a temporary measure and Directors of Public Health continue to advise individual settings experiencing outbreaks.
Writing to your MP
If you’d like to write to your MP, remember to include your name and address and explain why this is important to you. Please feel free to direct them to Kidney Care UK and do let us know if you have written by emailing [email protected] You can find your MP’s details here.
Whether due to the kidney disease itself or to the medication we take, people with kidney diseases are clinically extremely vulnerable to Covid-19. That is why they were identified in 2020 as Clinically Extremely Vulnerable (CEV) and recommended to shield for a substantial period of time. Shielding was advisory but offered a structure of furlough support, targeted communications, food and volunteer support. It was paused in mid-2021 and completely disbanded in September 2021
The vaccination programme provides a lot of hope for people who are vulnerable and indeed vaccination offers some protection against Covid-19, but not the same level of protection as it does for someone who does not have kidney disease.
Those who are immunosuppressed (which includes people with kidney transplants and some with kidney disease on immunosuppressive medications) were recommended by the JCVI on the 2nd of September for a third ‘primary’ dose of a Covid-19 vaccination. This was because it was recognised that 2 doses were not going to make a strong enough antibody response and this is borne out by studies such as OCTAVE and one by NHSBT and the UK HSA. The third primary dose rollout was communicated very poorly and fraught with issues that has meant that still, in January 2022 (4 months after the JCVI made the recommendations we still have patients who have found it almost impossible to get a third dose. In December 2021 further guidance came out recommending a booster for this same immunosuppressed group three months after the third primary dose. For those who did manage to get a third primary dose in September or October this means that they are due now. Yet again some people are struggling to get a fourth dose and are being told that the IT systems in the NHS do not support it. It is not possible to book online, 119 does not know what to do and there are patients being turned away from walk-in centres because the IT does not work. This is unacceptable and we want to see action now.
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