My Assumptions about the NHS — UK Healthcare

Hi, I’m Amy, you may know me as that kid that spoke about coding a lot around 2013. Well, I’m supposedly a grown up now and let me tell you — adulthood has been a baptism of fire. Made harder by the fact that I was never told to expect many of the issues I came across.

The past 4 years have been hard, but something that made it easier was other people’s stories. So, I’m sharing some of my stories in a hope to help someone else out there.

Story 1: Assumptions about the NHS — UK Healthcare

Assumption 1: The process is simple

When I was younger, I had this naïve understanding of how going to the Doctors’ worked. In my head in was a simple process. You explained the issue, the GP knew what the issue was and either prescribed you something to fix it or sent you to a consultant who could explain things and help further.

But then in 2017 I got the hiccups, and they didn’t stop…

After a month of the hiccups I went to my GP, initially anxious of being a bother. It felt ridiculous — it’s just the hiccups, but hiccupping all the time can cause more issues than you’d initially expect — things like increased fatigue, reduced concentration and reflux (vomit in my throat).

My GP was perplexed, and so began the first of many times I witnessed a confused GP googling what to do about my symptoms in front of me. Turns out GPs are humans and not fountains of all medical knowledge — who knew?

Initially, I was sent to an ENT (ear nose throat) consultant, but I soon began to feel like a hot potato being passed from doctor to doctor to doctor.

Expectation

Reality

Assumption 2: We have drugs for most common problems

I was mistakenly under the impression we had drugs for most common issues. I soon found out I was wrong. We don’t have any drugs designed specifically for hiccups, or ‘tics’ as they were later identified. Instead we have drugs designed for other medical issues which we discovered may also be helpful for hiccups and tics.

So my GP tried one of these drugs, an antipsychotic called Chlorpromazine.

It worked in that it made me so sleepy I was hardly awake the whole week I tried them for, and the problem didn’t happen when I was asleep.

It also made this thick fog set into my brain. At the end of 6th form, I had planned to put fibreoptic lights into my prom dress, however when I got to the makerspace my spatial reasoning and problem-solving skills weren’t accessible. I just sat on the floor and ate a block of cheese instead.

Assumption 3: The system will be explained to you

As a young person using adult services, it’s often assumed that you know how the process works when that was not the case. Throughout my experiences with the NHS over the past few years, I have felt very alone and lost at points.

I remember after a neurology consult, being handed some letters for some scans and being expected to know I was supposed to tour the hospital handing them in at various reception desks rather than them using internal communication systems.

The NHS also requires a level of self-advocacy for chronic issues that my anxiety initially didn’t afford me. I have learnt that healthcare should be a partnership between you and your doctors. It’s ok to put forward your perspective and options and work together to find solutions which work for your body.

It’s also ok to chase things*, as awkward as I felt about it, and there have been situations where being slightly pushier than normal was not rude as I expected, but reasonable. The NHS is great but it’s not without its flaws. Things do get missed and lost, so bringing things up when this happens will help them to provide you with the care you deserve.

*I acknowledge that this has been in my experience as a white cis presenting female, please advocate in a way that feels safe for you and your circumstances.

Assumption 4: The NHS is a cohesive unit

I wasn’t expecting the NHS to be fully up to date with the latest technology, but I was at least expecting the technology it used to be consistent between hospitals and trusts. It’s not. It’s really not.

As such I think there’s about 7 different places I must look to see if I’ve received a hospital letter. Which is a nightmare when you receive as many hospital letters as I do!

The current list is via:

- post

- 4 different websites

- 2 different emails

There may be other places I have forgotten… Really, it’s a minor miracle I haven’t missed an appointment. But that’s more down to the consistency of text and phone call reminders more than my or the NHS’s letter organisation.

Assumption 5: Diagnosis is all important and happens on a quick timescale

It’s four years later and I’m still not fully diagnosed. For me finding the right diagnoses is still important but not in the same ways as it used to be to me.

I have been in therapy for maybe 3 years at this point, and what I initially saw as one problem turned out to be a giant knot of problems — and I didn’t have the language to explain each individual problem yet. For me, therapy has been about finding out the colour of each thread in the knot and I’m now in a better place to work on undoing the knot. However, when I started, I was expecting to receive a diagnosis straight away whereas that hasn’t really happened yet.

The problem: the expectation

The problems: the reality

I initially struggled to believe the issues I was having were valid without a diagnosis to officially prove them. I also believed that diagnoses were clear distinct boxes rather than regions on a spectrum with very blurred boundaries.

It’s now clear to me that on mental health and neurodiversity spectrums there’s not one clear box that I fit into, but that doesn’t make my struggles any less valid. Additionally, I can borrow coping strategies from other diagnoses to figure out what makes sense for me.

The importance I still see in official diagnosis is in asking workplaces and university for accommodations. That said though, after an amount of pushing from me, Imperial College London has mostly been great at providing me with accommodations which are helping me to succeed in my degree despite no final diagnoses yet

I’m starting to see diagnostic labels as like sexuality and gender labels, in that they are useful for signposting other people to a rough explanation of yourself, but they’ll never be enough to explain the whole story.

Assumption 6: The label Disability doesn’t apply to me

I think deep down I initially saw disability as a bad word — something to be scared of. When I disclosed my hiccups issue to the university, I was surprised to get referred to the disabilities officer, as it wasn’t a label I had previously considered for myself.

I had initially disclosed it only to make my professors aware I wasn’t being rude if hiccups interrupted their lectures — they had evolved into more loud velociraptor-esque hiccups by this point — and I wasn’t hungover as one professor revealed they had assumed.

However, meeting with Andy, the disabilities officer, was one of the best moments in my university experience. He became a good friend and pillar of support through difficult times. He also was a strong advocate for me pursuing therapy, which I was initially unsure of

Whether things were bad enough for me to consider doing.

As the hiccups evolved into a tic disorder, we worked together to figure out what accommodations would be useful in collaboration with the university’s disability service.

My favourite thing about Imperial College’s disability service is that you don’t require a diagnosis to receive help, just evidence of the problems which you are having. They have been invaluable to me and a major factor in me not dropping out of university.

Conclusion

Overall, I am so grateful for the healthcare I have received but was not aware of the pitfalls that existed before going in. Having my expectations confronted was stressful and at times left me feeling hopeless and scared. I wish I had been more aware and so hopefully now you will be too now you know more about what you can expect.

Ultimately, this process has helped me appreciate that the NHS is one of the UK’s greatest assets which we cannot afford to lose. It’s been invaluable to me over the past 4 years, and I would not have been able to afford the same amount of care privately. Many of the issues I have discussed I believe result from chronic underfunding and as such we need to campaign to protect our NHS — particularly after the trying times it has been through over the pandemic.

Thank you for reading and please leave a comment with your thoughts and experiences below.

Best wishes

Amy x