No One There...

A while back I was sitting in the car listening to the radio when an advert started, it was from the Metropolitan Police saying "If you are ever the victim of a car theft or break in then you can report it online"

I double checked with my husband what they had said.

"So they seriously think it's acceptable to have someone break in your house, steal your items and then you email them?!"

What happened to times when a local police officer came round ASAP, looked for finger prints if they thought it would help and seemingly tried to get a resolution on the case. Find the culprit and prosecute them.

Now you may have even seen the person who you think may have been involved, know some of their details of where they were going (with YOUR stolen items) yet you email them instead?!

I can only imagine how awful and neglected you feel as you don't even have a police officer listening - someone you feel 'may' be able to do something about it. Get your items back, some justice and stop them doing the same to others in the future...

Yet now, for whatever reason, it seems like they don't care. 
The people you thought would help 
don't do more than take your details.

But imagine you have details of the burglar, they spoke to you beforehand. You had trusted them to do a job at your house. You told them your concerns about the valuable items you had, you had even written it down to clarify it. While there they said things that showed they realised how valuable your items were but they said they had secured them.  That on a later occasion you even saw them carrying items from your house to their car, not knowing what they were...

But when you tell this to the police and they question the burglar, and give you their response - that they never said these words, that you were fine with them taking the items, that the incidents you and a friend both saw and heard didn't happen.

Then to make it worse, as they are a respected member of the community their word is taken over yours. How can you prove what you said and what they told you? You know they said things that would clearly incriminate them, but no one is listening.

 

They even lied about some things you know they didn't do or say but you have no proof.

 

Why would you video a conversation you had before you knew there was a problem?

You report it to the police and while they take your information, you get no support. No help in writing up your side of the story or checking they have details they need, you have to find your own witnesses, no help from a lawyer, nothing. But you still produce all the evidence you can find. Adding why you feel they are saying what they are now, and not what they did. Saying that you struggled for months after this incident, replaying it in your mind, knowing how much their actions hurt you. What they stole. How much you lost. You are still in shock from the incident, others have agreed their actions hurt you physically and emotionally, the lies just rubbing salt in the wounds.

Then, eventually, your case comes to court, and you have every hope that any judge who reads your info will do it justice. You don't want them locked up, just held accountable for what they did. Say sorry to you in person. Pay you back for what they stole and the direct expense you encountered from their actions. Maybe a contribution to your struggle and tears. But more importantly, to be fully held accountable, so it won't happen to anyone else.

You have faith that the 'truth will out' but after you give your evidence, your case is held in secret. 

You were alone, yet they had friends, family and support of others as they are a respected person. They also have both experience in knowing what to say and a legal team to advise them. Plus they are able to respond to each of your concerns and get the final say on what happened. You were never allowed to question them or hear any of what was said.

So after all this you get told that a small one of their actions was wrong...

... they shouldn't have shut the door in your face after they stole from you! 

But everything else they did was acceptable as they 'didn't mean to', and they are normally a respectable and helpful citizen. 

They didn't think the items they stole were yours or would hurt you. Their lies were believed (after all you cannot prove otherwise) and so they were just told to get their boss to say sorry.

Their boss can't even be bothered to sign the letter he supposedly wrote.

You feel sick, angry, upset, disgusted, violated, hurt 

and completely worthless. 

Your word was nothing. 

You are nothing and they don't care. 

No one cares.

But you still believe it was an accident on the judges part. Maybe you didn't explain it correctly? So you spend weeks writing your points again for an appeal, explaining how it happened. It takes months for a second secret hearing. 11 months in fact.

When you do finally get a reply they tell you that they haven't even read it as you didn't supply new evidence. But you did. YOUR evidence. It doesn't count.

Then you realise that they took so long with the case it is beyond the time limit for a private prosecution (even if you had the money.) You feel disgusted, unfairly treated and so angry. You know they are continuing working and none of their other customers know they steal... 

... That's how it is dealing with the Health Ombudsman. 

A total farce.



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Why are some days this exhausting?

I have had a tough couple of weeks, actually it’s more than that but my timescale is totally messed up and Mañana might as well be imprinted at the bottom of my email and to do list!! 

But the ombudsman letter really got to me. 

It feels like they were saying I was lying, that I wasn’t that ill after all and I should be fine now, and I am a nobody anyway, so fuck off and shut up. 

I don’t even deserve a decent apology, much less pay for them to back expenses for my private doctor and scan, and certainly not any kind of compensation for the extra agony of being stuck of the sofa for a few extra months… the fact they didn’t even review my complaint letter properly or address the main issues I had with HOW they expect a patient who has just had brain surgery to know how to write the bullet points correctly 😲 …

Once again if you are poor and cannot afford to pay anyone to support you… you are worthless.

I have felt it.

Then last week I had the most snotty, tickly nosed cold going… felt like my eyes wanted to stream all day and that I wanted to constantly sneeze. Combined with a husband who also had the same, along with blocked sinuses - so he couldn’t breathe out his nose and snored all night keeping me awake … and I was shot. Or wanted to be!

But over the weekend I felt better and so on Sunday spend a couple of hours sorting out my Facebook posts for my brain tumour page: JoBarlow  - It's all in my head  I always save posts from my Facebook or elsewhere when I see them and then after a couple of weeks or so, schedule them to post to the page. So I did this, about 5 weeks’ worth, as I hadn’t done it for a while and the scheduled posts were due to run out in a couple of days.

Last night I had also remembered to write a list of urgent ‘to do’s’ and this morning did many of them… almost a couple of productive days. 😊

Then this afternoon I was looking at adding a post I had seen and wanted to share. Scheduling it to post on the one day I had kept spare in March (purposely for this item) when on it I realised it said #BrainTumourAwarenessMonth, so thought that it would be a good idea to add this hashtag to all the rest of the months posts.

Which I did. 

But as I got to finishing editing number 31, I clicked on one of them to check something and realised it had my words, but no link to the article underneath, the link had disappeared as I edited it. I then checked the other posts and they were ALL the same… unless I had fully written the post myself without a link, I had somehow deleted the most of it!!! 😭

I tried to go back and look at the edits, but it just said I had deleted a link and I could find no way of getting it back… 

So I go on my computers history and do manage to find some of the saved articles, but the majority were in my saved items on Facebook, which was now empty as I had deleted them as I posted … and so I got a blank link! NOTHING! 😭😭😭

Two and a half hours later and I am thoroughly pissed off … it didn’t take me this long to post them originally, but even taking this long, I still have lost most of the links (I could find about 10 in my history, but many of these were from posts scheduled for April that were still there anyway!) I got SO confused working out which I had done, what days were empty and everything. 😖

Wondering why the fuck was I even bothering?

Does anyone even read them, or care?

Do they help anything or anybody?

And after all, I am not earning any money from this – and I could seriously do with some. 

Should I just abandon it and do something else? 

But then I realise I had a simple task of (re)posting a few Facebook or website links and I totally messed it up… I couldn’t even be employed at this, something I often feel I CAN do? If I did this to someone else’s Facebook page, I would be sacked on the spot… 

I then had to print off an email and in doing so the printer jammed totally stuck with paper wedged inside, and I could see no obvious way of removing it, so I gave up…

I realise my brain has had enough… yet I still have to make dinner. 

But whilst doing so I managed to:

• Slice into my nail with the knife, then almost my hand while cutting sweet potatoes.
• Dropped one potato almost on the floor, the other went flying along the worktop.
• Tried to get the curry powder from the spice container, and dropped the whole container all over the floor, stock cubes going everywhere (thankfully, for once, I had the lids on everything properly) and while picking it up, burnt the onion I was cooking.
• Turned the tap on, it hit an item in the washing up bowl and sprayed me with water as well as caused a puddle on the floor.

I then gave the dinner to Dave to finish (I had a doctor’s appointment to get a referral about my vision which I will talk about later) and came back to find dinner, thankfully, ready to eat.

• After dinner I went to add water to our large water filter, filling it right to the top, but as I put the lid on and added the jug I filled it with on the top it, the water overflowed gushing down the side of the filter, all over the worktop and the paper left on the side near to it.
• I mop some of it with the cloth that was there, but go to get other cloths and knock the cleaners from the cupboard into the floor as I get them.
• Make tea and drop the teabag jar as I am doing it up.

At this point I decide that’s enough and I’m going to bed …

• and in tying my hair up drop the hairband on the toilet seat (I don’t know how many hair bands have gone down my loo?)
• Knock the toothpaste tube in the sink as I go to put it back.
• Go to shut the window and get a comb caught in the blind (just caught before it also fell down the loo!)
• Turn the bath taps on, and forget to run the cold tap for a while… thankfully I realised after a while (and before I got in!) but had to fill the rest of it with cold water!

So… if I didn’t feel useless enough before - I do now!
Hopefully it will be a better day tomorrow?

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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!' 😡







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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? 

Destroyed.

• 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. 

❓❓❓

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