Welcome to Part 6 of the allergy to life side quest chronicles! Lucy vs The Leak will return literally next week, but for now it’s time to continue to tell this horror story I find 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 5 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!
Making a formal complaint …
If you’ve followed along so far, I imagine it won’t come as much of a shock to find out I spent the days post pro-rata refund putting together a timestamped and foolproof formal complaint! As I say, if you’ve read the previous 5 parts, then you’ll know the details!
At point of submission, the complaint itself spanned 12 A4 pages with a total of 6578 words. This wasn’t excessive, it was necessary for any outside bodies involved with the investigation.
Getting a response vs responding to the response …
Sounds very remnant of that friends episode doesn’t it? They don’t know that we know they know? Anyway, I received a reply to the 12 page document and responded with an 18 page annotated document. In fact, before I spill some of the details, I would like to take a moment to apologise to my high school English teacher. I upheld the position throughout high school than annotating stories was a pointless life skill. Turns out I very much needed every single one of those skills to correct this inaccurately written response to my complaint!
This doctor broke his response down into subheadings, so I am going to do the same. I will include anything said by him in bold and italics. However, please remember as I am choosing to keep the doctor unnamed for now, there are some parts removed in order to ensure this!
Subheading 1 – The initial consultation
A detailed management plan was agreed including the full 8-week protocol structure, medication plan, check-in schedule, and zoom milestones. Lucy confirmed at the time that she was happy with the plan and wished to proceed.
The key phrase in this remains “at the time.” During the consultation, several promises were made that were not upheld. Particularly, promises around access during emergency flare ups.
She was then sent a further email from the admin team with the programme details to allow time to make her decision. The treatment plan sent following the consultation reflects the thoroughness of that discussion.
Following up on this, I have reviewed the MCAS programme sent by the admin team and highlighted the following paragraph:
“Please note that if your case involves significant medication sensitivity, complex reactions, or other complicating factors, establishing a clear diagnosis may take slightly longer than the initial two-month block. If additional time is required, a revised plan and associated costs will be discussed with you in advance of the programme end date.”
There is no doubt I experienced a complex reaction alongside other complicating factors, but nowhere in this does it state that if such situations occur he is unable to deal with them or that referral elsewhere would be necessary. Had it have done so, and knowing my body loves a rare complication, my decision to go ahead with the programme would have been different!
Subheading 2 – Myelogram and contrast agent
At the initial consultation on 5th March 2026 …
Rookie mistake there because the appointment didn’t take place until 11th March 2026!
before Lucy had enrolled in the programme, it was noted in passing that a myelogram was scheduled at the National Hospital for Neurology and Neurosurgery at the end of the month.
This part made my blood boillllllll … It categorically was not noted in passing. My ongoing investigations for a CSF leak were explicitly explained to him. Proving this, he formally documented in the initial consultation notes under the “investigations” section “myelogram scheduled at end of month at National Hospital for Neurology and Neurosurgery.” He then documented under the “management plan” section “myelogram proceeding as scheduled at National Hospital for Neurology and Neurosurgery, London at end of month.” Finally, he documented for a 3rd time under the “key takeaways” section “proceed with myelogram at National Hospital for Neurology and Neurosurgery at end of month.”
There was absolutely no doubt he knew the procedure was upcoming.
I want to be direct about what this timeline means. I had no actionable opportunity to provide pre-myelogram guidance because I was not informed the procedure was imminent during the programme period, despite having two structured clinical touch points in the days immediately before it took place, including one submitted the day before the procedure itself.
This is not true. He had 19 days from the initial consultation, where he was first informed of the procedure, to provide pre-myelogram guidance. I am also baffled how he, a medical doctor, can expect me, a patient, to know to ask such specific questions about pre-procedure guidance and circumstances when I was not aware they were even a thing. It without doubt is his responsibility, as the specialist actively medicating a condition, to provide all appropriate information related to it.
I accept that at the initial consultation, before enrolment, I could have flagged the myelogram as a potential MCAS trigger and advised Lucy to inform the procedural team of her suspected diagnosis. That would have been good practice and in hindsight I wish I had done so.
I genuinely laughed at the irony of him writing this. I mean talking about a direct admission and total contradiction of his above points! I think it’s safe to say from this paragraph he absolutely was aware of the procedure!
Subheading 3 – Urgent message response times
Lucy sent a further urgent message on 7th April describing her A&E attendance, elevated heart rate and blood pressure, the administration of IV fluids, and ongoing symptoms despite steroid treatment. I acknowledge that the response time to this message did not meet the standard Lucy was entitled to expect and I am sorry for that.
He specifically documented in the initial consultation 24/7 urgent messaging access available for emergency flare ups. Taking such long periods to reply to a service he request be used in emergencies is simply not acceptable. That’s like calling 999 and getting an answer phone message!
I want to provide some context without in any way minimising Lucy’s experience. Throughout this period Lucy was actively receiving clinical attention from A&E, her GP, and her specialist headache nurse. She was not without medical oversight during this time.
This is not context. It is an excuse for the failings on his part.
Firstly, this did not and does not on any level excuse the lack of input and intervention from him; the doctor who had happily accepted £1,500 off me. Secondly, I am unsure of how we can class dismissal from a GP as actively receiving clinical attention. In regard to A&E, it was explained to him the A&E consultants’ explicit explanation of the NHS being unlikely to intervene with MCAS. He even acknowledged this as true directly!
When he did reply on 10th April following an email into his admin team, he stated persistent chest tightness, worsening breathlessness and throat irritation as symptoms he takes seriously. He finished this response by stating, “if symptoms are not improving within 48 hours or worsen at any point please contact me directly and we will consider a short course of prednisolone.” Point here being he was already aware I had taken not one but two courses of prednisolone with no benefit!
Getting sitcom worthy at this point …
I also want to note that when I became aware of the full picture of her symptoms I responded promptly, arranged an urgent evening review at short notice, and implemented a clear and detailed clinical plan. I do not offer this as an excuse for the response times. I offer it as relevant context to the overall clinical picture.
Mans really loves his chat GPT phrases doesn’t he! Almost as much as he loves incorrectly documenting events! He was aware of the full picture literal weeks before so definitely did not respond promptly!
In terms of his urgent review at short notice, he conveniently missed out the following context: this zoom meeting had already been cancelled and/or missed by himself TWICE!
Finally, on the note of “implementing a clear and detailed plan,” I must have not been in the room when that happened! Either that or he’s throwing the word “clinical” around to try and make what he did sound more substantial than it was!
Subheading 4 – Management of post-myelogram reaction …
When Lucy and I spoke on 16th April I conducted a detailed clinical review.
I mean it was something, but it definitely wasn’t detailed or clinical!
I advised initiating contact with the National Hospital for Neurology and Neurosurgery regarding the post-procedure reaction.
He did not advise initiating contact regarding a post-procedure reaction; he stated “neurology should be dealing with it because they are the ones that caused it. They performed the procedure, so the responsibility is on them.”
On the comment made during the 16th April call that neurology should be dealing with the reaction, I acknowledge this was poorly expressed and caused significant upset.
It didn’t cause significant upset. It significantly minimised the physiological symptoms I was experiencing and directed the focus towards an emotional response rather than medical.
I apologise for it. What I should have said more clearly is that the procedural team at the National Hospital carried a responsibility to be informed of the post-procedure reaction and to document it in Lucy’s neurological record,
He did not mean this. If he meant this, he would have stated that. Requesting I contact NHNN to have my reaction documented is a completely different sentence to “neurology should be dealing with it because they are the ones that caused it. They performed the procedure, so the responsibility is on them.”
while the clinical management of the mast cell response was something I was actively addressing through medication optimisation and specialist referral. Those are two complementary responsibilities, not an either-or situation, and I expressed it poorly.
For a doctor who has been to medical school and completed training, he isn’t the brightest … He was not actively addressing the clinical management of the mast cell response. The increase in medications should have been initiated immediately, not several weeks down the line. As for specialist referral, if he is unable to deal with complication that can arise he should have made that explicitly clear before taking £1,500 off me.
On the suggestion of writing a strongly worded letter I acknowledge this was an unfortunate turn of phrase that did not reflect the seriousness with which I was approaching Lucy’s situation and I apologise for it.
I wholeheartedly believe he not only knew what he was saying but also meant it.
Subheading 5 – Referral to immunology …
The failure was not in making that recommendation. The failure was in making it later than I should have and in not being able to name specific practitioners in the moment when Lucy asked. I acknowledge both of those shortcomings.
It was not only a failure in the moment, but an ongoing failure as even in follow up emails there was no mention of the appropriate specialist to approach regarding my care. This is a definitive example of medical negligence because he was indisputably aware of what specialist care I required but failed to refer me to the appropriate specialist!
Furthermore, actively knowing of such limitations of his prescribing and the potential, albeit maybe small, to require such treatment is again something that should have been made explicitly clear before accepting my £1,500 because this limitation would again have changed my decision to go ahead with him as my doctor!
Actively stating more specialist care is required and then also actively refusing to transfer it to the appropriate person for fear of losing money is not okay by any stretch …
Subheading 6 – Website and advertising claims …
Your complaint raises concerns about the language used on our website and social media, specifically descriptions of expertise in complex chronic conditions, a proven track record in MCAS, and the integrated MDT coming soon page. You allege this language is misleading and that Lucy was induced to enrol on the basis of claims that were not delivered upon.
Lucy herself reported significant improvements in nausea, gut symptoms, skin symptoms, and fatigue in her check-ins dated 22nd and 29th March, which is direct evidence of clinical benefit from the treatment protocol in her own case.
The programme is physician led and the clinical decision making throughout, while affected by the communication failures I have acknowledged, was clinically sound and appropriate.
I would love him to clarify here if he is stating that leaving me with significant breathing difficulties alongside concerning throat symptoms was clinically sound because I experienced improvements in my gut and skin symptoms?!
Enough brain cells lost …
This is only approximately half of the document, but I’ve lost enough brain cells as it is pointing out his contradictions and mistakes!
Will I be accepting his half-hearted apologies and completely empty words? Of course not, but that’s a chapter to be continued another day!
For now,
May your symptoms always be believed,
Your favourite headache x
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