The girl, the nerve and the clinic

‘I’m sorry but your MRI and nerve conduction studies have been much of the same’.

Pain Consultant, St Thomas’

I’ve spent the last 8 years battling to be heard in a saturated back-logged NHS. I’ve been known to be like an Xl Bully dog when meeting a neurologist, pain consultant or GP. I never thought I would be like that as a patient but until you need that help you’ll never know what kind of person you’ll be. I often compare it to being cheated on, we’d all say we’d never take the man/woman back but it’s harder to know when you’re living in that experience. So, let’s discuss the item on the tip of my tongue.

In January 2023, my neurologist discharged me having reached no definitive conclusion but felt his knowledge would no longer serve me. To be honest with you, I’m grateful because being spoken to like a moron was not what I clapped for in 2020. It was this appointment, that I said what I’ve told anyone who wanted to hear it, “Thank you for your time and investigations, but please stop telling me to think differently or to distract myself from neuropathic pain. It’s deeply insulting to a patient who has spent her own money to get into this state of remission. It’s also inappropriate that half of what you say to me verbally, you’ve never dictated to your secretary for my post-appointment letters. It’s ME not Chronic Fatigue Syndrome too.” DROPS MIC. When I repeat everything back to my family, I’m always asked if I actually said that or if I was rude. I want to say to every single person feeling unheard in the health system, YOU CAN advocate for yourself, YOU CAN be bold and YOU CAN be polite. The three can and do go hand in hand with each other. I wonder if more women are asked if they were polite during these types of conversations, as opposed to their male counterpart because God forbid if women have a back bone when advocating for their needs. Three weeks later, I received a letter which did in fact reflect every sentence he verbalised to me; and used ME not CFS, case closed.

After he discharged me, he made a referral to his colleague at St Thomas’ who was a pain management consultant at their pain clinic. I had made it clear I had no time or desire to be seen by a pain specialist due to their very bad reputation. But, at this point I had to exhaust the options by visiting one at a much larger and established NHS Trust. Pain clinics have an even worse than my reputation in parallel parking; I’ve never met any patient who has come away feeling heard or even listened to. So, I went into the appointment feeling pretty unsure what to come away with, this leads me to an important point, how can you go into these appointments feeling prepared?

Advocating for yourself at appointments:

  1. Prepare your own file that can act as a symptom tracker; when do your symptoms flare or feel worse? Have you tried some holistic therapies? Have you seen any other clinicians? Are you on any medication? Or what medication have you tried?
  2. Research your clinician – I’m a big fan of doing a backgrounder on my specialists because they give me a nice idea of their interests and perhaps their personality. Most Doctors, like any academic will have an interest in a particular area of medicine. I’ve found that neurologists like researching migraine and the possible options for managing the pain of a migraine. While, the pain folk specifically like comparing two alternative medications against each other like an ITV Game Show. I also like to quote them with their own work. I often joke by telling family members that I plan on asking how the consultant’s trip to Dubai went in 2009; they think I’m joking and I’ll let you work out whether I am joking or I am being dead serious
  3. Recording your appointment, in most health settings you will have waited a while for that specific appointment so you want to take away as much as possible. Ask to record the appointment via your phone/smart watch or ask a family/friend to come with you, not to speak on your behalf but to help relay anything back to you post appointment. I ride on lots of adrenaline in appointments so I sometimes find myself remembering every tiny detail while family members forget those bits.
  4. BE BOLD. I’ll say it until the cows come home, but you must be bold enough to hold your consultant to account. We as a society put our health professionals up as God; they’re not Gods. They are human beings with a medical qualification; they are not magicians, genies or witches. Plus, they make mistakes too. Like, I make a typo Dr X also makes mistakes. As a result, you can challenge the professional if you feel they’re using waffle to make their passive aggressive dig come from a place of evidence.
  5. Remember, what’s the worst that can happen? I always come at my appointments with this question because it gives me the confidence to fight for my needs. In my opinion, the worst thing will be that your name is moaned about on an NHS intranet and frankly I take quite delight in being an office meme. You challenging their expertise won’t discharge you, because they can’t discharge you for asking questions. Let’s remember that if you were having a kitchen fitted and the carpenter made a cock up with a cupboard door you’d tell them before paying their invoice. So, why can’t you challenge your NHS professional? Reframe their credentials as ‘service provider’.

The pain consultant I saw was different from previous specialists. He heard and validated my experience; he understood the impact chronic pain has on a patient. He could see that in the last four years, I had sacrificed so much in the pursuit of regaining my mobility back. I changed cars, jobs and lifestyles in the hope of regaining my pre-relapse body. Sadly, however, the tests he requested revealed the same as the 2017 and 2021 MRIs. ‘I hate to say this, but the tests I re-ordered were the same as previous scans’. The biggest change with this clinician was that he said it from a place of compassion and validation as opposed to telling me I must be imagining this crippling nerve pain and fatigue. In most settings, normal test results should be celebrated because nobody wants to go into appointments to receive difficult news; but for patients with chronic pain a normal test result typically comes with medical gaslighting and ignorance. So, for me, to have received normal test results from a person who was speaking to me like a human was absolutely amazing and probably helped me digest and process the outcome greater than previous appointments of the same nature.

As the consultant concluded our appointment, I apologised for wasting his time and again there are good eggs in the current system. ‘Why are you apologising? We’ve done an MRI which is absolutely no problem. I am sorry, however, that our clinic cannot offer you anything you’re not already undertaking privately. Please do come back in the event it progresses further.’ I said, I felt like I had provided the NHS with its very own Agatha Christie novel which he found rather amusing. The first consultant to have a sense of humour and personality, I’ve described the four consultants I’d seen, as having the temperament of a garden chair in previous pieces of content.

I named this blog post as the girl, the nerve and the clinic because I wanted the Sir Kenneth Branagh to see a potential Hercule Poirot storyline. But, the reality is, if I can’t make light of the last four years then who can? Weirdly, the appointment providing me with nothing new gave me a weird sense of closure. After a relapse that lasted for three years, I have now been able to say goodnight to that chapter; the chapter of chronic pain, rounds of medication and side effects. It will forever frustrate me that I have had to invest my own money and time into the treatments that are benefiting me and not readily accessible on the NHS. That, however is a blog post in itself. So, maybe let’s unpack that next week, for now goodnight and where are my twirl bites?

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