Welcome to Part 5 of the allergy to life side quest chronicles! Lucy vs The Leak continues to be on hold while I tell this horror story I found myself the main character of!
For those who are new here, hey! I’m Lucy. A 29-year-old who has been something of a medical mystery for over 12 years now. For some reason, my body likes collecting chronic conditions like they’re Pokemon! Whilst I can think of greater things to be achieving in my 20s, if some good can come from yapping about my experiences then I suppose that’s a win!
If you haven’t done so already, click back on that side quest specialties tab and have a read of the first 4 parts of this journey. Although, I’d probably recommend taking a break between each. It’s a lot of trauma, gaslighting and neglect to navigate in one sitting. Unless you are unfortunately used to such occurrences that is!
If you want an insight on what MCAS is from a credible source, check out the Mast Cell Action charity!
A&E Side Quest …
Following the incredibly useless series of events that made up the zoom meeting, your gal ended up back in A&E. Bloods remained abnormal, an arterial blood gas was eventually obtained successfully and was also abnormal and a chest x-ray unsurprisingly showed nothing. Annoyingly, the abnormal bloods and blood gases were dismissed in light of a normal chest x-ray.
That however is a story for another day!
Post Zoom Happenings …
Learning from past experiences, the urgent messaging system would provide me with a response at the same speed as sending a letter via pigeon. Therefore, it felt an appropriate time to blast out a direct (in more ways than one) email …
It read as follows:
“On the 16th April we had a zoom meeting to discuss what can be done to relieve the symptoms I have since my CT myelogram. Since That meeting I have been back to A&E on Saturday 18th April as my symptoms had not improved and it was painful to breathe. A&E took bloods and a chest X-ray. The X-ray was clear but the bloods were still abnormal. The consultant in A&E said there was nothing they could do as my chest was clear and the x-ray was normal. He did say that the NHS did not recognise MCAS and getting a referral would be impossible.”
Between the zoom meeting ending and this email being formulated, I’d had quite a bit of thinking time. My email continued:
“On another point, currently we have paid you £1975 which included £475 for the initial consultation. However, despite being advertised as a 75-minute appointment, only lasted 30 minutes. The urgent messaging service, which I was led to believe would be answered urgently, I had no reply to in regards my first message. My second message was then answered 7 days later. This is not what I would expect when paying for private medical care.
Not holding back …
Having slept on our discussion via zoom Thursday night, I don’t feel your responses addressed my concerns. Your email stated that you wanted to discuss my blood results properly rather than through a message because my symptoms and results needed a proper clinical evaluation, but all I was actually told was neurology needed to fix it, or to see an allergist/immunologist privately. I understand and accept the biologics discussed are not something you can prescribe, but as a doctor I was expecting more medical advice if I am being totally honest.“
Now, if you’ve read the previous part, you will remember his offer to refund the equivalent of what it will cost me to see a private immunologist. Well, you best believe I had trawled the internet with the intent of finding the most expensive immunologist available. The top figure rolled in at £725. The email continued:
“As the only option open to me is to see an allergist or immunologist privately, I have requested to see a specialist in London. As you said you would refund the amount to cover the cost of seeing a specialist I would like you do that please. The appointment is a two-hour face to face appointment and costs £725.“
Funnily enough, I didn’t have to wait too long for an acknowledgement. He stated the programme had been paused and a full response will be sent the next day …
Cue the AI like response …
Allow me to walk you through the full response accompanied by my co-existing internal thoughts.
“Thank you for writing, and I want to respond to each of your points carefully and honestly.“
If he manages to actually do this, I will literally eat my hat.
“First, I am sorry to hear you were back in A&E on Saturday and that you are still in pain. That must have been frightening and I hope you are feeling more settled now.“
More settled!? More?! Settled?! Catch me already annoyed because that pal reads like you are implying psychological origin and that is not route we are going down!
“The A&E consultant is unfortunately correct that NHS recognition of MCAS remains inconsistent, which is precisely why specialist private input is the right route forward for you.“
If only I had access to specialist private input … Oh, wait? I thought that was what I would be receiving for £1,500!
“On the clinical concerns you have raised, I want to be straightforward. Our zoom meeting on the 16th was focused on your post CT myelogram symptoms and I want to acknowledge that if you left that meeting feeling your concerns were not fully addressed, that matters to me.”
I mean, my blood is boiling just re-reading this! Given he has been anything but straightforward up to this point, I’m gonna set my expectations pretty (very) low. As for my feelings mattering to him, we will have to agree to disagree based on his actions so far!
Mattered, but didn’t quite matter enough …
“The referral to neurology and immunology was not a deflection, it was the clinically correct next step given the complexity of what you are experiencing. Some of what you are dealing with genuinely sits at the intersection of neurology and immunology and requires specialist input that goes beyond what any single physician can provide in this setting. The side effect occurred as a result of an investigation outside of the programme which is outside of my clinical knowledge, therefore needs to be dealt with by the appropriate team.“
I am having a flare up of the condition he diagnosed. How is it the responsibility of neurology, a specialty with no knowledge of MCAS, to manage the flare up. He himself states that the NHS recognition of MCAS remains inconsistence which is precisely why specialist private input is necessary. So, why is he now claiming an NHS doctor should be the one managing the flare up?
Not sure why the reaction is now being termed a side effect, but the procedure that caused it is irrelevant right now. He doesn’t need to understand how to perform a myelogram, but having categorically identified my symptoms as being an MCAS flare up, I absolutely expect him to be able to control it. After all, he is the self-proclaimed specialist!
Outside of his clinical knowledge? Give over! For that to be the case he would have to possess some clinical knowledge and so far I am yet to be presented with any evidence of any!
So much stupidity …
“Despite this I tried to help and go through the options via a 45 minute evening video call. I recognise that can feel unsatisfying when you are suffering and looking for answers but it is the most clinically safe option, especially as it occurred from external factors.“
Sorry but why is he making it sound like he did me a favour? That zoom call wasn’t out of the goodness of his own heart! It was paid for in my £1,500 and had already been cancelled twice by him previously!
So, the most clinically safe option is to pass the responsibility to someone who either doesn’t yet currently exist, or someone who won’t have any clinical knowledge because they are NHS headache doctors?! To quote Meghan Hunt in Greys Anatomy … so much stupidity!
Professionalism leaving the chat …
“Regarding the initial consultation, a full session was booked and allocated for you. Our records show the consultation covered everything clinically relevant, a treatment plan was agreed, and you confirmed at the time that you were happy with the plan. We are confident the time was used appropriately and that the consultation was conducted to a thorough standard.“
Yes, but that was before you went back on every documented promise you made … the key phrase there is confirmed at the time. Unfortunately, at this time I am not happy! You wanted my money, of course you were thorough then. Unfortunately, such professionalism and thoroughness left the chat the moment my £1,500 dropped in your bank account!
“Regarding the urgent messaging response time, I want to apologise unreservedly for the seven day delay to your second message. That is not the standard we hold ourselves to and I understand why that was distressing given your symptoms at the time. This is something we are actively addressing.“
Straight up apology not accepted. No more to be said on the matter …
More backtracking than the British government …
“On the refund question, I want to be fair and transparent with you. You have been on the programme for four weeks. If you feel the programme is no longer the right fit for you, we will of course refund you on a pro rata basis for the remaining weeks. That is the right thing to do and you have my commitment on that. What I am not able to do is refund the cost of a private specialist appointment as a separate commitment.“
Hang on a sweet second. At no point during that zoom meeting did he state the refund was pro rata. He stated he would refund the equivalent of what an initial appointment with a consultant immunologist would be. Not my fault the immunologist is as money hungry as him! Although I am guessing the sudden change of wording to pro rata refund means he wasn’t willing to refund £725 …
“What I can do is ensure your referral is handled properly and that you receive a comprehensive summary letter from me so that your appointment is as productive as possible and you are not starting from scratch.“
Ensure my referral is handled properly? Excuse me whilst I clean up my drink I spat out reading that! As for writing a comprehensive summary letter, aside from the fact it will most likely be anything but comprehensive, I see he is proving himself to be an overpriced secretary rather than a medical professional! I did however decline this on the grounds he would probably charge me for the letter!
Running out of witty subheadings now …
“I genuinely want to help you get to the right place clinically.”
No you don’t. If you did, you wouldn’t be putting so many obstacles in my way …
“If you would like to continue with a revised plan that addresses your concerns, I am completely open to that conversation.“
I mean … how can he now possibly be offering me the choice to continue with a revised plan when in the earlier stages of the email stated he can’t do anything?! Surely, my concerns should have been addressed the moment they were raised?
“And if you would prefer to take the pro rata refund and pursue care elsewhere, I will support that too and make sure you leave with everything you need. Please let me know how you would like to proceed.“
Yes. I could like to pursue care elsewhere. In fact, I reckon I’m getting better care via google than him and that’s free!
A very matter of fact reply …
I imagine it’s pretty obvious at this point I wouldn’t be hesitating to take the refund. As predicted, £725 was off the table and instead all I would be entitled to was £562.50.
Being £1,00 out of pocket for seemingly very little irked me, but that was a battle to fight via his formal complaints procedure. For now, because I no longer trusted him one bit, I hastily accepted the refund on offer.
I probably should mention, even at this stage I continued to struggle substantially with the same respiratory and throat symptoms raised to him on countless occasions.
Come back next time for the formal complaints saga!
May your symptoms always be believed,
Your favourite headache! X
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