Need Advice on a Medical Issue Please — Scope | Disability forum
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Need Advice on a Medical Issue Please

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ColorfulFeathers
ColorfulFeathers Community member Posts: 1 Listener
Hello,

I am wondering if someone could give me an advice on my current situation. I am autistic so I apologise for the long post but it's the only way I can make sure I cover everything related to my experience. I thank you in advance for reading it and for any recommendations.

Like mentioned above, I am on the spectrum and all of my doctors are very well aware of that and my relationship with my birds that have been with me for over a decade, which are truly my life purpose and support.

In 2019 I moved to a new area in Scotland and immediately started having an intermittent cough which didn't stop. I registered in a new GP Surgery in the area and upon the first and second checkups, my partner and carer at the time helped me explain my situation to the doctor (I struggle to talk with people I don't know and this doctor to me was a complete stranger). The doctor dismissed my situation both times, without having my medical history and without even checking me in any way. He just labelled it 'anxiety' and left it at that, with no solution, meds or advice apart from 'try not to be anxious'.

Needless to say, I was very discouraged and a lot was going on in my life already so I just avoided going back to the surgery unless absolutely necessary, and did avoid this specific GP since.

Forward to 2020 when Covid started, my cough was still bad and could happen at any time like a fit, so when it started happening at the groceries or anywhere public, of course people were giving me looks, thinking I might had Covid and was going to infect them. They could have not known it was a problem started a year ago. 

Then going forward to the vaccines, I did the first 2 jabs. The very first one made me sick for a day like it did to everyone, and the second one didn't have the same effect, however my heart started to pound very fast for no reason during the day, with my left arm going numb, a cold and weird feeling on the left side of my neck and chest. It felt to me like I was going to have a heart attack several times every single day. So then I called 999 a few times, but they always referred me back to my surgery. And I had no choice but going back to them, dreading to seeing that same GP again.

My GP surgery at the time was not seeing patients, there was E-consult for a small amount of time and then it was removed. I tried to get appointments but the secretary always deemed my case not urgent, until my partner got really upset and managed to get me a phone consultation. Spoke with the GP (a different one of the same surgery) and was told it was panic attacks. Now, I know panic attacks. I had them all my life. These were not it. Plus my constant cough, sleeping horribly due to sleep apnea (which was undiagnosed at the time, and had to get it diagnosed privately later on) I mentioned to him and everything, so a bunch of blood tests were done and I was referred to the respiratory specialist and also ENT.

ENT said they didn't deal with sleep apnea anymore (???) and recommended a sleep test via the sleep clinic and other options, and the respiratory specialist gave me an appointment after my blood test came back for allergies, and I was positive with being allergic to pigeons, and pigeons only. No other type of bird of the ones tested.

Now, when I met the respiratory specialist, the first thing he said to me was to get rid of my birds, that he was not able to give me any type of steroids or other meds until I 'lived with the problem', I told him it was not an option as my birds ARE my life and asked if maybe more air purifiers around the house would help and he said no, was very adamant for me to give my birds away.

This caused A LOT of anxiety, on top of these 'panic attacks' I was getting, plus the constant cough plus the sleeping problems, I was super drained. I have a garden and planned to move the birds in there with an outdoor aviary, convinced that they were indeed the problem.

The respiratory specialist then recommended a few tests, including an MRI, which I have done. The MRI results were simply 'there are scars in your lungs'. Nothing else, no solution, no how dangerous or damaged they were, just there are scarrings. I went into panic mode and my GP was uncontactable because E-consult was removed (and still is) and the secretaries never seemed to think my questions or concerns were worth the doctor's time.

So I went to my Country of origin to do an MRI there and I got results within 3 days, with the disk to bring to my doctor in the UK. There were scarrings like suggested on the first MRI, plus a bunch of other things not detected in the first one, including a hiatal hernia. 

I spoke with my family's doctor on my country of origin and they said the hiatal hernia can cause the constant cough, plus the sleep apnea too. 

When I faced the respiratory specialist with these findings, he said the blood test suggested I was allergic to ALL birds, claiming there aren't tests that checks for different types of birds and therefore that had to be the cause of my cough. I had the blood test results in front of me, clearly showing that I was tested for many types of birds, including budgies, canaries and more and that they were all negative apart from pigeons. I made him aware of that but he kept saying that he could not see the test on his database (?????) and basically dismissed me. It was August 2023 and since then, he had received the second MRI disc with all images and I have another appointment (over the phone) with him in a few days.

This time my partner will speak to him and try to clear things out, because he strongly wanted me 'to get rid of my birds' (his words) and was not going to prescribe me anything until I did, when the problem is clearly somewhere else, and they failed to notice. If I didn't have a garden I would have needed to give them away for good and in that case then notice no improvement on the cough and then what? To me it feels like he just assumed it was the birds and didn't want to look into anything else.

Is this medical negligence? What should I do to rectify this? At least an apology would be nice since he completely dismissed what I said about the blood test with the excuse of not finding the blood test in his database.

Also, in the mean time I managed to get answers from a GP of my surgery about the 'panic attacks'. It comes out that is nerve damage caused by Covid/Jab causing those symptoms in my neck, chest and arm and a medication has been provided that helps but won't cure it. It was then when I saw this doctor in September 2023 that I mentioned the phone consultation with the respiratory specialist, and how he seemed not to have record of the blood test. The GP looked and said it was very strange as it is on my medical record. Also, at that time talking about my cough, it comes out that the first GP who saw me in 2019 and deemed it as 'anxiety', never actually recorded my coughing problem. Meaning that on my record, my cough started in 2020....

It's honestly so tiring to having to deal with all of this and having to fight for even having the chance to speak with the doctors over the phone, let alone appointments.

Any suggestion on how to approach this, please? Anything would be a really great help cause I don't know what to do anymore.

Thank you 🙏🏻
 

Comments

  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    Hi @ColorfulFeathers, first of all welcome to the Scope community. Thank you for telling us your story and experiences! This was quite the ride it seems, I'm amazed the push back when you talked to them about your birds being your life. If they really cared about your wellbeing I feel like they would have engaged to help find other solutions if the birds really were the actual issue. Our cat is our life and it'd be devastating to give her up so I understand.

    It sounds like both your GP and this specialist have let you down, there is some information about complaints process here: Complain about a service or provider - Care Quality Commission (cqc.org.uk)

    There are separate sections for GPs and Hospital services! I hope this might help
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
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