Wednesday 20 February 2019

Gigg's Hill Surgery Failing Again

As I added in my last blog post about the Health Ombudsman here, this clearly says near the end of the letter that I am NOT allowed to contact the GP surgery further.

The Health Ombudsman could not take this, not the fact they wrote a letter a couple of weeks after with no notes into account, (as they have no notes to provide me) even though this had not happened at the start of when I notified them, but I did tell the Ombudsman once it had!

The first part of Giggs Hill's reply was here.

Apparently its OK not to fill in paperwork correctly then... no one cares after all? 😡

Health Ombudsman can't even review my case...

A few weeks ago I finally got a letter back from the Health Ombudsman in regard to my complaint to their official reply last year. (See here) It has only taken almost a year since I sent it to them on 5th February 2018!

I am honestly shocked, I feel this letter is more insulting than the last one, the system is a joke and the GP surgery are probably laughing. 

I have attached the reply here, partly as I want others to know what a farce the system is and hopefully that others will learn from this and write their letters differently. With every single concern listed as a seperate issue, & providing proof if possible! 

Although after a brain tumour it was as much as I could manage to write the basics of a letter at the times I had to write this, just giving the details I did was tough. Making sure it made basic sense took days as it was. I certainly wasn't up to pointing out each and every concern and matching it to what was written or said that contradicted something...

the Health Ombudsman is a system certainly not here to support the patient.


I have no words... 😡😭😡😭

Although I would like to point out that, conveniently, as it has taken the Ombudsman almost 2 years (since my first letter on 17th February 2017) to reply, and that I am now very close to the three year cut off point in which to claim damages to the GP Surgery. And so I cannot find a legal company to take my case on (simply as they won't get all the medical details back in time, let alone get a case together)... yet why would I use a legal company if I could rightly claim back my private fees through the Health Ombudsman... a service I once thought was for the patient's benefit... ❓

Plus, if they had listened to me on the phone when I called them about my case, they would have known I HAD contacted the GP surgery asking for the 'Significant Events Analysis Meeting'. Part of their reply was here and the rest and where I got told not to contact them anymore is here.

As they all but say 'You didn't write it in the correct way... so it doesn't count!' 😡


Monday 11 February 2019

What do you wish someone told you when you were first diagnosed with a brain tumour?

There are so many levels to this question… 

My first instant reaction is I wish I had been told:   

“That you will still be alive almost 3 years later!”

as just knowing I would get through the operation would have calmed my first fears…

I also certainly admit the fact that I WAS told that it was a hemangioblastoma as soon as I saw the scan photo and that 'they are slow growing, non cancerous tumours and can be fully removed during surgery' was a massive help in itself! Some positivity in the terror…

Certainly in the wish there would most definitely have been an:

 “I’m so sorry we didn’t listen to you, we truly fucked up in not diagnosing or referring you, or even realising there was an issue” 

from the doctors at Giggs Hill - my GP surgery.   
A personal sorry. 
Bringing me round some flowers or a card. 
Actually saying and meaning sorry, admitting they messed up and were at fault for not picking up any concern from my symptoms… 
(I’m still waiting Dr Vo and Dr Milne - better late than never...)

But trying to work out what else I would have liked to have known, left me muddled, as I don’t know what order of things, if at all, I would have liked to have known… 

  • If I knew pre op that I wouldn’t feel ‘normal’ for a very long time, would it have upset me? 
Yes I am pretty sure it would have.
  • If I had been told that I would leave hospital after 48 hours, would it have reassured and calmed me massively? 
Yes, just the thought of staying in for 5-9 days after surgery was terrifying.
  • But if I had been told that I would leave hospital and come home with what felt like no support, would it have scared me? 
Yes for sure.
  • That my vision would not be the same almost 3 years later, and I would still struggle to see things close up? 
  • That my abilities would change - that I would struggle to multitask or even cook dinner; forget how to spell or even think of the correct words, let alone struggle to say them and it take ages to get better? 
I wouldn’t have wanted to know, I couldn’t have coped.
  • That my hair would cover the scar almost straight away, then grow back and no one could ever see it?
Massive relief, like someone telling me I no longer needed a limb amputated!
  • That I would be able to go back and listen to my husband’s bands playing rock music a few weeks after? 
That part of me will still be there. Gratitude.
  • If I was told I would have a numb, lumpy and dented head forever, a dip in my neck and none of it will ever feel the same? 
It would have been hard to accept, as don’t think you can fully understand until you can actually physically feel and understand what a numb skull means…

It took a couple of weeks after diagnosis to be told:

 ‘Your head might never feel the same, but you'll be alive’… 

I wish I’d been told that when I was diagnosed. 

The same words that have come to haunt, as well as comfort me, many a time since.

…in fact that is the hardest part. 
Not knowing. 
Finding out your own answers from struggle and time. 

Not knowing if the extreme dizziness after surgery would last for a week, a month or years. Even the neurosurgeons don't know. If you knew you only had another week to cope with, you could face it easier, not feel so down and defeated and just damn exhausted. It’s the not knowing that’s hard. Not having a crystal ball.

Other brain tumour survivors that I asked, who have had the same type of tumour, also had similar feelings:

"D'you know, it's probably a completely 'backwards' way of thinking, and not really answering the question, but I was so delighted to be told I had a brain tumour, having suffered horrendously for 3 months where it was feeling more and more like my GP practice thought I was making it all up, that confirmation that I WAS seriously ill was more than I could have hoped for.
It was an enormous relief!"

"I am sorry that I was not told how much suffering and struggle the recovery might cause - that it would change my life and my abilities. All the info given was based on the tumour and it's removal."


"I thought I'd have the op and be the person I had been 4 years before all the symptoms started. I'm worse now and can't work."

Although I am very grateful for not being religious after hearing this comment!:

"They would encourage me, instead of telling me that it may be a punishment from God. And that I need to search whom I had wronged and ask them for forgiveness!"

How punishment can come into it, I have no idea! 😳

And if you also had a brain tumour...please comment as to what you wish you had been told. 



Thursday 7 February 2019

A poem to my surgeon and the nurses...

I wrote this last May, on my second cranioversary (my craniotomy anniversary!) but only just decided I will post it on my blog.

I never sent it to St George's, despite planning to after, as I felt it a bit odd and stalker like to do so! Maybe if you are a nurse or doctor you can let me know if it would be acceptable... but whatever, this is dedicated to you  💜 
...and especially to Mr Jones and all the nurses on Brodie Ward at St George's 💜😇💜

Thank you

I know it was your job
A daily task for you
But I don’t know if you truly realise
The thanks of all you do

My kids wouldn’t have a Mum
My husband not a wife
There would be an empty hole
If you didn’t save my life

As every day I know
That I wouldn’t still be here
Without your knowledge and your skill
And shed a silent, thankful, tear