Mark Davies describes the stress of trying to navigate senseless bureaucracy so that he could get his sons vaccinated

It was a huge relief when the UK’s Joint Committee on Vaccination and Immunisation announced in July that children aged between 12 and 15 with a clinically vulnerable parent would be offered the covid vaccine. 

I have myeloma, an incurable blood cancer that attacks the immune system, bones, and kidneys. I had a stem cell transplant in June, a procedure which wiped out all my immunity from childhood vaccinations, along with any protection I might have had from covid-19. I am extremely vulnerable to infection and, as a result, am in my own personal lockdown at home, only meeting people outside and at a distance. 

I’m also the father of two boys who are at secondary school. When I came out of hospital, we kept them at home, worried about the risk of them bringing the virus into the house and putting me at risk. The announcement in July therefore offered our household hope of one less thing to worry about. 

It then went quiet for a few weeks until we heard via a BBC report that patients like me would be contacted during the week of 23 August. That didn’t happen. Worse still, when I called our GP surgery, they referred me to NHS 111, who referred me back to my GP. I tried the NHS 119 service for booking vaccinations and was directed back to my GP again. It was the same with the haematology team at the hospital and our sons’ school. The worst thing about it was that literally no one I spoke to was even aware of the policy for people in my situation. 

I have since discovered that GP surgeries were sent a letter on 13 August outlining what steps they should take to ensure the children of vulnerable parents received a vaccination appointment. But in our case this seems to have been too late to get processes in place to make sure the vaccinations actually happened. I know other people in the blood cancer community in a similar situation who’ve had the same experience. 

I made a fuss on Twitter and received a welcome response from Nikita Kanani, deputy SRO of the covid-19 vaccination deployment programme. But it was the office of Helen Hayes, my excellent local MP, which made the difference, along with a responsive local clinical commissioning group. Through those routes I have, at last, managed to get my sons vaccinated. But it shouldn’t have been this difficult. 

How many others in the cohort of several million people who are immunosuppressed or immunocompromised have children who could be eligible for the vaccination but simply have no idea they could get it? How many others are playing a game of phone tag with various parts of the NHS and getting nowhere? The lack of information and, seemingly, any kind of coordinated plan is a disgraceful way to treat some of the most vulnerable people in our society. 

I lay the blame primarily with the government. Ministers should have a plan for delivery when these announcements are made. It happens all too often: Sajid Javid’s promise to communicate with vulnerable patients in the wake of “freedom day” hasn’t happened, for instance. And before anyone laughs at my naivety, I used to work in government at a senior level. It doesn’t have to be this way. 

Once announcements are made there needs to be a proper, coordinated, thoroughly considered approach to communications. Finally, and most importantly, it has to be clearer who in a complex system is taking responsibility and ownership. Part of my frustration was being unable to work out which part of the NHS was leading on this issue, and even now I’m still not sure. 

This is the first time in my life I have felt so powerless in the face of bureaucracy and I am well aware that makes me very lucky indeed. But it is a scary, hollow feeling, which exacerbated an already stressful situation. 

I’ve also been fortunate that since I started cancer treatment I have been very well looked after. But the disconnect my struggle has revealed between complementary parts of the healthcare service, and the lack of overlapping information flow, feels extraordinary. 

I appreciate that many reading this are probably unsurprised to hear that parts of the NHS seem siloed. But these failings are not beyond remedy. They require properly resourced operational communications teams, a systematic approach to joining the dots between delivery teams, and providing simple resources to those teams so that they are not in the dark about important new developments affecting their patients.

It also requires leadership and a greater focus on patients’ experiences. Ministers who announce welcome improvements need to be terrier-like in following them up on behalf of patients. Their apparently blithe indifference to whether an announcement becomes reality is staggering to me. 

All parts of the NHS need to be thinking more holistically about the ripple effect of new initiatives. As is the case increasingly in consumer business, the voice of the end user (whether customer or patient) needs to be taken more seriously than an occasional message from SurveyMonkey. 

Not being part of the NHS, I am probably describing the need for a fundamental cultural change that many are already aware of and working towards. I really hope that’s true, because my experience as a patient has been of an extraordinary organisation let down by astonishing yet resolvable gaps in areas where small changes would make a really big difference.

Mark Davies is a myeloma patient currently on leave from his role as communications director of the World Wide Web Foundation. He is a former journalist and was a special adviser in government between 2005 and 2010. Twitter @markdavies67

Competing interests: nothing further declared.