Living on Plague Island

Antivirals are a key method of preventing clinically vulnerable people from being hospitalised and/or dying if they are unfortunate enough to catch Covid. Antivirals are often used in hospitals but drugs such as paxlovid are also available for some lucky people to use at home, although they need to be used in the early stages of infection. Current UK policy and practice, is woeful and is now regarded as significantly worse than other developed western countries to the extent that the World Health Organisation has issued a sharp rebuke to the UK government.

Eligibility and processes

To obtain antivirals for use at home you need to have received a letter from the NHS explaining that you can access free NHS Lateral Flow Tests (LFTs) and ‘may be’ eligible for anti-virals. It is unclear exactly how many people have been identified as potentially eligible, but it may be well under 1 million and restricted to people who are immunosuppressed. My husband has received such a letter but has never had the need to access antivirals.

We do know that many clinically vulnerable people have not received a letter and older people do not qualify on the grounds of age alone.

The process for obtaining antivirals was, until recently, that LFTs could be requested on-line or by phone and would arrive by first class post via a central system. If you tested positive you could then phone a central number and, if your eligibility was confirmed by a clinician, antivirals would be couriered to you. This system was far from perfect, but the impression is that it worked for many eligible people.

This system has now been discontinued and the new system involves:

• obtaining LFTs by taking your NHS letter to a pharmacy,
• if you test positive you then need to contact your GP, consultant or 111 to try to obtain antivirals
• If a clinician confirms your eligibility they will issue a prescription which you then need to get dispensed at a pharmacy.

What could possibly go wrong? Quite a lot actually – the system is said to be a shambles for the following and other reasons:

• many pharmacies don’t stock NHS LFT’s and have not been told about the new system;
• Many GP practices don’t know about it and/or are so hard pressed that they are unable to deal with requests from patients in time for the anti virals to be effective;
• Even if one obtains a prescription many pharmacies do not stock antivirals and there is no central system that people can access to find out which pharmacies stock them. The result is that people are left travelling very long distances in an attempt to locate antivirals.

Clearly the new system is near impossible for people who live alone and who do not have anyone to invest quite a bit of time in helping them. If an immunosuppressed person has Covid it is surely blindingly obvious that they are not going to be fit enough to go through the above process, not to mention the dangers associated with Covid positive people entering pharmacies.

On top of this the government has delayed plans for a wider roll out of antivirals to a far larger number of high and moderate risk patients for 12 months, and it is inevitable that this will lead to stockpiles of antivirals near their use by date being destroyed this winter. This makes no sense at all to the clinically vulnerable as the UK faces heading into a winter of rising hospital admissions and deaths.

Call for an Early Day Motion debate in parliament

In the light of all of these problems a cross party trio of MP’s led by Daisy Cooper, Lib Dem, have put forward a proposal for an early day motion (EDM) as follows:

EDM 85 text

That this House calls on the Secretary of State for Health and Social Care to reject the request from NHS England to delay the roll-out of Covid antiviral treatment Paxlovid; further calls for the additional funds and resources necessary to be provided to NHS England to ensure this treatment reaches all recommended patients this winter; notes with grave concern that a 12 month delay would deny treatment to an estimated 10 million patients at high and moderate risk of hospitalisation and death from Covid-19 infection; further notes the lack of any government strategy to support the immuno-compromised to live with covid; regrets that this request comes at a time when the National Health Service is likely to face unprecedented seasonal pressures with 80% of NHS leaders expecting this winter’s capacity crisis to be more extreme than last year; recognises the alleviatory impact that such antivirals will have in reducing hospital admissions; censures the request as out of step with the 10 November 2023 update to World Health Organisation guidance which strongly recommends Paxlovid for high risk groups; notes that a decision to delay access to life-saving treatment has potential wider implications for patient access to future innovations; and is astounded that such a recommendation would be considered appropriate when the Department for Health and Social Care already holds a stockpile of this drug, of which more than half would expire and have to be destroyed during the period between 30 November 2023 and 29 February 2024.

I and others have written to our respective MP’s urging them to support the EDM. Here is my letter to Chris Philp.

Chris Philp MP, House of Commons

24 November 2023 

Dear Chris Philp

I am writing to request that you support the Early Day Motion EDM 85 (tabled 21 November 2023) on Paxlovid and clinically vulnerable patients.

For your convenience I have reproduced the text at the end of this letter.

My husband is immunocompromised and has been identified by the NHS as suitable for antivirals. 

However, we are fearful of actually having to try to access antivirals for him. As you may be aware the process for obtaining antivirals changed last month. Rather than phone 119 and give the code number from the NHS letter as before, patients are expected to contact their hard pressed GPs or 111 out of hours and I know from many people that this new system is not working. 

We are fearful about the coming winter and the motion urges the government to provide resources to NHS England in order that treatment reaches all recommended patients this winter. 

I am not sure how far you are aware of serious concerns about the way in which the government’s ‘Living with Covid’ strategy has been implemented. The lack of proper air filtration systems in public buildings and the dropping of mask mandates essentially means that the clinically vulnerable have been left behind to the extent that it is even too dangerous for them to visit a hospital. This is certainly our experience. In common with 90% of clinically vulnerable households recently surveyed, we have avoided or cancelled appointments that involve attending a healthcare setting. 

At least we previously had the comfort of knowing that my husband would receive antiviral drugs if he  caught Covid. We don’t have that comfort any more and I urge you to take action by supporting this motion and by pressing the government.

You will also be aware that the wider roll out of antiviral treatments to patients at higher risk of hospitalisation is being delayed by 12 months. At a time when NHS waiting lists are at an all time high this seems illogical. Antivirals are self administered and the wider roll out could help to reduce hospital admissions. You will be aware that the World Heath Organisation has stated that it is astounded by this, particularly when one considers that the Department of Health and Social Care holds at stockpile of antivirals which will need to be destroyed after their use by date is reached.

I urge you to support this motion.

Yours sincerely 

Gillian Smith 

Update

I received a reply from Chris Philp on 27 November. Essentially it outlines in pretty unclear terms what future policy might be. It does not address my concerns about the difficulties being reported by numerous people about the difficulties of getting hold of antivirals even if they have an NHS letter and code.

Update January 2024

It is difficult to say whether the issues outlined above are getting any better or not. However, my reason for posting this update is that someone who lives nearby tested positive over the Christmas period. She discovered that there is a dedicated unit at St George’s hospital, Tooting (see photo) and was able to self refer to the service with ease. This makes me wonder whether there are similar units at the main hospital in other health authorities. It might be worth exploring if you have difficulties.