Covid-19 has shone a light on many latent issues in our culture, social systems and personal responses. One thing it has highlighted for me is how having chronic conditions has affected my ability to trust the health system. That’s a hard thing to admit, and to qualify, I love the NHS and am so thankful it. For the most part, the health care professionals I have come across on my travels have been fantastic. But the reality is that not all medical experiences are positive – and when you live with a long-term condition, negative experiences can have a cumulative and long-term effect. Chronic illness bloggers from around the world testify that this is an issue whichever health system you have access to.
The Covid-19 vaccination programme in the UK brought this trust issue to the surface for me. I was keen to have my jab well before Tiny and Small returned to school and was happy to wait my turn. But as January rolled round and I began hearing about friends receiving their first dose of the vaccine, a worry that I would be overlooked crept in. I was undoubtedly pleased for my friends, but each jubilant social media post I saw came with an anxious, stabbing thought, “What about me? Why haven’t I heard anything?”
The Government’s mantra, “We haven’t forgotten you, please don’t contact the NHS” makes perfect sense when you see the immense pressures hospitals and GPs are currently facing. In reality, I don’t know what else they could have said. But when you live with a chronic illness it is likely that you have been let down before by the health system. Like countless others, I have had to fight for diagnoses and referrals, had serious symptoms dismissed, test results lost and essential prescriptions not signed off. While I happily forgive these mistakes (human error happens, particularly when people and services are stretched), the reality is, each little error or oversight has an impact. The experiences make messages like, “We haven’t forgotten you” just that bit harder to believe.
In reality, I did feel forgotten, and I know I am not alone in this. I have several clinically vulnerable friends who have had issues getting the vaccine, one of whom was told by her doctor’s receptionist she was ‘a nuisance’ to call and ask what was happening. She has been stuck on her own at home since March, and this was such an unhelpful thing to hear. I did actually call my own GP just to check I was in the right category and was shocked when the receptionist told me I probably wouldn’t get vaccinated until late March. It turns out she was completely wrong as I received my letter days later, but her words sent me into an anxious spin. Sadly, this misinformation will lurk at the back of my mind and I will instinctively find it harder to trust my GP surgery. Likewise, I doubt my friend will ever forget being called ‘a nuisance’ for asking for help. There’s nothing intentional or malicious about it, it’s just how trust works.
These personal histories that so many carry feed into the way we interact with each medical appointment and staff member. I make a conscious effort to listen with openness and assume the best, but I do find myself double checking dates and processes and asking many more questions that I used to. Perhaps this is just wisdom and experience, but I certainly feel that I need to be armed to fight for the care I need. And every time I have to take up that fight I think of those who are unable to – who just let it go, or who end up becoming a ‘nuisance’ when they just need someone to reassure them they are safe and will receive the care they need.
The vaccine situation got me thinking about what can be done to rebuild trust between health services and the people that rely on them the most. I don’t have any answers and it seems like a minor problem compared to the multitude of issues the NHS is facing in the wake of Covid-19. But I wonder if finding ways to rebuild trust will improve job satisfaction and relieve pressure for staff as well as improving life for patients? Speaking for myself, if I am clear on what is happening and trust that it will be followed through, I am less likely to call and ask questions, more likely to be polite and kind to staff and less likely to complain.
There is also a decision that we can take as patients – to notice and value positive experiences and make sure they are banked in our memory. For every failure, there are generally many more instances of great care and it’s easy to take these for granted.
The reality is that I was not forgotten. I got my vaccine in the time frame I was told to expect and all the staff were friendly and efficient. Hopefully this will help build that unconscious trust in a positive direction!
The Chronic Parent 