It would be unconscionable for people in the position of my wife to miss out on the potentially life-saving medication they may need because of poor execution, communication or bureaucracy, writes James Moore
Like the Downing Street parties, it seems that it’s a case of lather, rinse, repeat when it comes to immunocompromised people getting hold of the treatments that they need to stave off the vicious little bundle of protein, fat and RNA that causes Covid-19.
Last month, all NHS trusts, foundation trust medical directors and clinical care group medical directors were sent a communication regarding contacting their patients about the new Covid treatments now available to them. This should have resulted in said patients receiving letters telling them about these treatments, and outlining how they were to go about getting them should they have a bad brush with the virus.
The plan was for them to be issued with PCR tests to keep at home. They would be able to use these upon the onset of Covid symptoms and, if the test came up positive, they would receive an assessment for treatment with the available antivirals or monoclonal antibodies.
And lo, the Lord said let there by light. And there was light! Because you can file this under the heading “damn good idea”. How often does that happen in today’s Britain? Of course, you can see the problem. What does happen very often in today’s Britain is that the good ideas that find traction get mucked up by poor execution, communication or bureaucracy.
Clare Jacklin, CEO of the National Rheumatoid Arthritis Society, told me that while some people are getting the letters, and the kit, and everything else they need smoothly, others are very definitely not. My wife is among them.
Blood Cancer UK said much the same thing. It is launching a survey of its members to discover the extent of the problem, having heard repeated incidences of people not getting letters or tests. A similar exercise threw a spotlight on the problems immunocompromised people were – and in some cases still are – facing with getting the jabs they need.
To get the same coverage as you or I get from two primary shots and a booster, they need three – plus an immunity-boosting fourth. Such an exercise might throw a spotlight on the extent of the problem across its client base. Anecdotally, there seems to be an issue with postcodes. There may also be an issue with some specific conditions getting left off the list, as it were.
The survey should shine a light on this as regards blood cancers. Other such exercises would be needed for other conditions. My wife’s experience with both issues – the fourth vaccine shot and the PCR test – would indicate that the problem comes down to parts of the NHS not communicating effectively with other parts, and the top not always communicating effectively with the ground level.
A call to the hospital she is under was kicked over to the GP, was kicked back to the hospital. A further call to the 119 service – specifically set up to answer questions or provide help with coronavirus vaccinations, testing, the NHS Covid Pass, etc – yielded no help at all. The person on the other end of the line appeared not to have been informed about any of this.
I wonder if the service needs to invest in some internal comms people? Perhaps they need to be given some clout too. This ought to be one for the vaccines minister to pick up and run with. The previous incumbent, Nadhim Zahawi, was propelled into the cabinet, perhaps deservedly given the relative success of Britain’s programme.
I’ve heard good things about him from people in the know, although it should be said that clearing the very low bar of not being completely crap will do that for you in the current administration.
Whether that applies to his replacement, Maggie Throup, remains to be seen. When I contacted the Department of Health and Social Care, I was shunted over to NHS England. In other words, I was given the same sort of runaround as my wife – and other immunocompromised patients – have been experiencing. It’s just a lot more serious for them.
For the record, NHS England said: “Thousands of the highest risk patients with Covid-19 have now been treated with these life-saving drugs as part of this service, which is only a few weeks old, and local doctors are ensuring patients are treated where they might benefit from treatment.”
I suspect that my wife will ultimately get her case sorted out. She is possessed of the sort of calm implacability one needs to prevail over British bureaucratic snafus. But that isn’t true of everyone. Too many people aren’t used to this sort of fight, which, really, no one should have to conduct. Coping with a serious medical condition is stressful enough.
To keep up to speed with all the latest opinions and comment sign up to our free weekly Voices Dispatches newsletter by clicking here
Jacklin describes the situation as “frightening”. “I worry about people contacting various professionals and then hearing ‘I don’t know’. What sort of confidence does that build to say they are in good hands?”
She urges those in that position to speak to the patient group relevant to their condition, if they find themselves wrapped up in NHS red tape through being left off the list. I would second that. The NHS, GPs, trusts and clinics are all under terrible pressure. Jacklin doesn’t want to be seen to be throwing bricks at them and nor do I.
But at the same time, it would be unconscionable for people in the position of my wife to miss out on the potentially life-saving medication they may need.