We are not your path to fame and glory. . .

I'm now in a situation where are lack of treatment since the start of the pandemic has rendered me immobile and now because I’m immobile I've been abandoned by the NHS. 

Okay, initially treatment had to be suspended because of Covid and there being no face to face appointments but I asked multiple times for temporary alternatives and was not only ignored good morning occasion had the phone put down on me.

Those temporary alternatives would at least have kept me going until such times as the hospital was back to face to face appointments.

Not having any treatment during that period meant my mobility gradually reduced and it has now got to the point where not only am I housebound but I am now trapped upstairs unable to get down to even open my own front door.

So the very people who have created my immobility have now abandoned me and guess why folks. It’s because I’m immobile!

Quite a lot of what I have wrong with me had they been treated at all let alone promptly and appropriately would have been either curable or reversible. Instead continual delays over the years by the medical profession has meant most of my conditions are now irreversible.

To cap it all I have now been well and truly shafted by an NHS Trust. I complained about a clinic letter written by a consultant which was almost entirely factually incorrect. And when they finally investigated and sent their response that too was also factually incorrect. So I pointed out the errors and awaited their response.

Nearly 4 months on despite me contacting them several times I still haven’t received that final response. At the beginning of May 2022 I was told repeatedly they were drafting a letter and now this week I have been told they were waiting for the appointment I had on the 30th of May before making a final response.

Why? The appointment has no bearing whatsoever on the complaint, I was complaining about a clinic letter made by a different consultant. A clinic letter that was written back in September 2021 so including whatever transpired in an appointment with a different consultant in May 2022 is like a rape case going to court and the victim being told but you had sex yesterday, there's no relevance to the case.

Gone 17:00 Friday afternoon I got a phone call from that second consultant's PA wanting to know if I'd read the letter they sent by email.

She also told me he’d made another appointment for me and it’s at the hospital face to face. When I said I'm housebound I was told that’s okay as he’s arranging to send a taxi for you. I was really fuming as I had quite clearly told him on more than one occasion at the last appointment that I was not only housebound but now stuck upstairs unable to get down to the front door. I mean how the hell am I supposed to get to a taxi if I can’t get down to the front door? Am I supposed to teleport?

And there was me stupid enough to think that he was actually listening to me at that appointment, perhaps he was but that case he’s obviously got a bloody short memory!

Up until now I haven’t looked at the clinic letter he sent for approval as I don’t think my nerves can take much more. **

Things clinicians need to bear in mind:

So much money and time is wasted in the NHS simply because staff do not listen to what the patient says  

And if they do actually listen they then go on to cherry pick the bits they want to take forward and deliberately exclude the rest

Listen to us and that means listening to understand not simply to respond or to further your own agenda

If a patient says X then that is what you document not what you think the patient should have said  

Too many clinicians also rely too heavily on what others have written in the notes regardless of whether it’s true or not

Stop playing Chinese whispers if you’re told a fact is incorrect then correct it and don’t continue to compound the issue by copying in the incorrect facts

As patients we come to you because we need help not to further your career 

It’s not the 19th century when there were very few educated people such as doctors, lawyers, clergy etc

Most patients these days are not only well educated but also savvy especially those of us with long-term conditions

We’re not part of some massive great experiment to further your career

First and foremost we are human beings in our own right we’re not simply guinea pigs.

If what we have wrong helps further your career that’s a bonus, your first consideration should be our health and wellbeing not your bloody career

We are not here simply to further your careers

What you’re providing is ours by rights it’s not charity

Over the years I’ve had some good doctors but I’ve had far more in the way of atrocious doctors who were totally incapable of listening intelligently.

Yes I am annoyed and I'm entitled to be annoyed because it's my life we're talking about not simply a career and why should I pay the ultimate price simply because people would not listen to me?

Having said that I think it's too late I think I've paid the price.

** 

Since writing this post I've had that second appointment with the replacement consultant via MS Teams. 

It's as I thought none of the promises previously made re: way forward and treatment have been or are to be followed up.

It's as I thought none of the promises previously made re: way forward and treatment have been or are to be followed up. 

He spent the whole appointment looking around his room rather than at me and then despite knowing I needed help to proceed especially as all the aggro had made my epilepsy, OCD & FND worse increasing falls etc which in turn has seriously impacted and exacerbated my physical conditions.

He was also aware I was suicidal yet felt it okay to say with glee he wouldn't be making another appointment as there was nothing he could do to help.

So they get me into this mess but they get to walk away!

My biggest mistake was not becoming a revolving door patient as it seems the more you try to help yourself or lighten their load the quicker they'll crap on you from a great height.

I have now reached the end of the line. Shame I don't have access to a prescription pad or the forms for requesting tests etc because then I wouldn't be in this mess.