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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The Alternative Guide for After Brain Surgery

You realise why they have a full length mirror opposite the toilet in hospital bathrooms. Simply as you cannot turn your head to look sideways to find the loo roll or look down at what you are wiping. Just use the mirror! 😂

If you are in any way sensitive please note that steroid tablets stop you sleeping, or in fact relaxing. Making you feel like, what I can only imagine, is overdosing on coffee spiked with amphetamines. So make the most of sleeping while you can immediately after the general anesthetic. It was the only occasion where I slept for more than 2 hours at a time for the whole week I was in hospital. As soon as I stopped taking the steroids, I was shattered.

In hospital (probably another lovely side effect of the steroids) you will hear every bleep or noise of all the various machines (and each person has at least one machine), the phone ringing, the nurses talking outside – just everything. Each bleep will be like an alarm clock going off and jolt you to your core every time. 😣 Like I said... you can't sleep!

Get some music and use earphones to stop yourself going insane. I had an iPod with various meditation, relaxation or healing albums, many of which I was already used to, so I could just listen and know my body was relaxing even if I couldn’t sleep. It blocked out the hospital noise as much as it distracted me with something I liked. I also had a variety of music, including a live album where I could pretend I was back at a concert and listening to the whole stadium singing alone (feeling happy is so healing in itself) and also some heavier songs for if anything kicked off on the ward that I wanted to block out. Seriously - my iPod was my number one must have - music saved my sanity! 💜

Ear plugs were far too much for me, as it amplified every bodily noise inside me (which wasn’t good when I was already hypersensitive from the steroids) plus they didn’t distract or block out the ward noises.

The day after surgery it felt like I had a tap dripping in my head… It’s almost like when your ear clicks, but inside your skull and it shakes you up on every level! Don’t worry it’s just your cerebrospinal fluid filling back up again. I did my version of craniosacral therapy – holding my hand on my sacrum area and visualising bringing the fluid down my spine and the universe healing me, which I am sure really helped. My sacrum started pounding under my hand as the clicking in my head reduced, then stopped. Although if you do it for too long you get a numb hand and if you tell your neurosurgeon what you are doing expect them to think you are just a little insane!😉

You feel like you have a bee buzzing inside your brain- in the area where the tumour was. Apparently this is ‘normal’ too.

Having a tube stuck down your throat for several hours really feels like you cannot swallow or cough fully after. Raw honey was so soothing, and don’t try and eat anything other than small pieces of soft food for a few days. Biting into a whole apple is not a good idea!

Arnica, have some Arnica homeopathic tablets… and take them every time you need a pain killer. In fact most of the time I felt they were better than the pain killers and also I didn’t have the horrid side effects of feeling ill and nauseous too. I don’t care if the nurses thought they were placebo… it’s the best placebo I’ve ever had! 😀

And while we are on Arnica … Arnica cream. Oh my! This was my addiction! Put it around the scar (not on it) and it felt like someone had just massaged my head, un-knotted the pain, cooled it and calmed me all at once. Every couple of hours I kept asking someone to apply some more 💜

They glue your hair away from the incisions. It’s not so bad on yourself – unless you look in the mirror or try a selfie! 😬 But looking at 5 other women in the ward all with their own variety of huge scars and mad stuck up glued hair is slightly disconcerting. They all look like they have been in some awful horror film and are still in prosthetic. The bruises many have on them also add to this look really well... 👀

Leaving hospital is surreal. It all looks different in the same way another country does when you first go there on holiday. You see signs on buildings, birds in trees and even beauty in Tooting! Make the most of it, it doesn’t last long!

The first few weeks at home after brain surgery I slept most nights without waking, plus also needed 2 decent naps a day minimum. I could sleep 11 or more hours a day for months after. Before surgery I used to wake up when my kids so much as walked to the toilet in the night, after they could have had a party in the room next door and I wouldn’t have heard! I often woke to find my whole family were up and showered and I never heard a thing or be told the dog barked for several minutes in the night, or the doorbell had rung. 😫 It’s also a great and very valid excuse for not answering the phone etc.

If you have surgery in your cerebellum, they cut your neck muscles. This hurts. Far more than anything else did. About day 10 the muscles started cramping up and I ended up taking paracetamol and codeine (after not having any pain killers since day 2) They didn’t really help much and I just felt spaced out and nauseous instead. The best thing was to get someone to press the muscles and lightly massage them as it stopped the insane cramping. When I moved position or got up to walk to the toilet my husband literally had to stand behind me as I walked continuing to press the muscle as hard as he could just to make it bearable. 😱

As the numbness and swelling in your head wear off, it is replaced by an itch you can’t scratch – inside your head! It feels like it is under your skull and no matter what you do, you can never itch it. It’s just like an itch under the bottom of your foot when you have thick shoes on and can’t touch it no matter how much you scratch around your shoe 😒… it can drive you insane! The best thing to do is either scratch your neck as it can ‘sometimes’ help relieve it a little (but you have to be careful not to do this too much and make your skin sore) or just sit on your hands. It goes off eventually!

You wish it was Halloween and you felt quite a bit better than you do - so you could actually go out. As you know you would win the best Halloween costume ever with real staples in your head. 😁

If you ever want to get rid of someone show them the photos of the staples in your head – they kind of start to freak out and go a little squeamish and leave soon after 😂 (Unless they are a nurse or doctor…well actually it works with some of them too...  😕)

You may feel like you are dreaming the whole experience of brain surgery as it doesn’t quite feel real. Unfortunately you aren’t, it’s just a weird dream like experience that continues for weeks.😬

But... the upside is. For a while after you get a sort of high... you survived brain surgery... what should have killed you... and you feel just a little bit proud 💪

Medical Records - Lost for a Reason?

So yesterday I received this reply from Giggs Hill / Glenlyn Medical Centre…

I don’t know whether to laugh or cry?! Although I have actually done both… with a little added sarcasm…

OK so I got the Freedom of Information and Data Protection Acts wrong- although it is not clear on the FOI .gov page that this is not used for applying for your personal health records- as it says you can apply for health information with FOI. I am not a legal expert, 

but I do know that when I asked for my health records last year and for Glenlyn to include the ‘Significant Events Analysis Meeting’ (SEAM) about my case, I got my records back but the SEAM part was ignored. 

Several phone calls and months later and still we were ignored- so I decided the only way I could get this information would be to request it formally. I chose the wrong one, but I have a, sort of, reply…

Deep breath…

So… one part is- Glenlyn have taken ‘advice’. I assume this means legal advice as to what and how they can provide information. But I don’t know. Glad to know they can afford it when they cannot even afford to refund me back the private fees I incurred when their staff messed up…

Next- they say the letter I had last year was an outline of this meeting… yeah right, the letter was about as useful as saying the outline of a brief has the full information on it! 

The only Doctor this letter said anything specific about was the first Dr, who I agree did what was “appropriate”- I totally understand ENT issues are far more likely cause of dizziness than a brain tumour! Plus she did also say to come back (which I did) once I had all the test results if the dizziness continued and they would pursue the next step.

On this supposed SEAM  letter it says: 

“A Significant Event Analysis Meeting like this is a standard medical way to learn from events where there have been negative outcomes or a patient has concerns regarding their care. Involved parties are encouraged to consider both things that went well and those that could have been done better. We have looked back through both your complaint letters at your clinical records, investigation results and the specialist letters. The doctors have openly reflected on their notes and decision making in the light of your subsequent diagnosis.

Unanimously we are very sorry that you and your family are having to endure this condition and the treatment associated with it. We acknowledge that you most likely already had the Hemangioblastoma to some degree when you first presented. We would have liked to have reached the diagnosis sooner in the hope that this might have limited the impact on you and we are sorry this did not happen”

Neither of the comments about Dr Vo or Dr Milne say anything specific as to what Glenlyn’s findings were about them… 

do they really think I believe this was the ONLY thing they recorded about this Significant Events Analysis Meeting? Really? Even though my letter was written 19 days after the meeting, they remembered it all? Wow! I want some of those memory pills… 

Also when I have been  re reading these letters again, I have now seen some contradictions and comments that ‘incriminate’ the doctors far more that I realised or wrote about in my first letters to either the GP surgery or the health ombudsman. Brain surgery definitely takes its time to heal from, and it seems no one cares one bit about supporting me in my complaint. 

Plus they apparently failed to complete a report into what they said… how very convenient! The most they can probably now get is fined a few £ for not following the correct procedure- but who will care? Will the General Medical Council (GMC) be interested? The Health ombudsman? Probably not… 

But a fine for not doing paperwork correctly is possibly better that having to pay out for admitting they messed up if I see the report of the meeting. Well unless they can put you in jail as they can for not doing your council tax right…

I am going to add my comments to this bullshit:

A Significant Event Analysis Meeting like this is a standard medical way to learn from events where there have been negative outcomes or a patient has concerns regarding their care. where they fucked up and they know it, but have been subject to an official complaint from a patient who has nothing better to do, when their health is already suffering, than try and get their head together and write to complain . And hey there is nothing better than a patient who has just had brain surgery- after all their brain is not working the best for a while and you can probably convince them far easier than many…

Involved parties are encouraged to consider both things that went well they didn’t have to pay for an MRI out of their budget, or even a prescription … And well they didn’t kill me, and I didn't  have a stroke- so they don't have to pay out compensation for that… win, win eh?

and those that could have been done better. well you did finally write a referral letter…only 3 appointments late and non urgent, when the very same issue was deemed urgent by a different doctor a few months earlier. So you did ‘do your job’ to the best of your (somewhat limited) knowledge …

We have looked back through both your complaint letters,  and replied ignoring or twisting the comments written in your clinical records of me, as well as lied about things where you know you will be found guilty

investigation results and the specialist letters. where the doctors failed to follow the advice of the specialist and thought it appropriate to do nothing, even when the causes of my symptoms hadn’t been found…oh and I almost forgot- you then wanted to drug me with diazepam or ‘elastoplast’ the issue with painkillers… 

The doctors have openly reflected on their notes and decision making in the light of your subsequent diagnosis. I bet… and they thought ‘oh shit!’… I hope it gives them many sleepless nights- so they NEVER do this again…

Unanimously we are very sorry that you and your family are having to endure this condition I am not stupid - I know I would have had to endure ‘this condition’ anyway, well apart from the few extra months stuck on my sofa thinking I was dying while your doctors said I was ok… what does upset me is you idiots calling it ‘a condition’ rather than actually apologising for ignoring me for 3 months, admitting you made a mistake and giving me some compensation for what I paid out for -when it should have been you doing so…

and the treatment associated with it. funny that you didn’t even manage to take my staples out after surgery then?… even with 5 days notice…  and even after the day I sent the private scan results in showing a fuck off great lump in my head and Dr Strickland called me saying ‘let me know if there is anything we can do..’ … actions …um …speak louder than what?? … oh words…that's it…

We acknowledge that you most likely already had the Hemangioblastoma to some degree when you first presented. Some fucking degree?? What like 359 fucking degrees of it you fucking morons… Hemangioblastoma’s on any medical literature are SLOW growing, I had this bloody (sic) thing years… what was also showing when I presented was the hydrocephalus where the tumour was causing fluid on my brain, yet you failed to note that my dizziness and head pains got worse each time I sneezed, coughed or strained- which are classic signs of increased pressure within the skull… red flags on any medical literature…

We would have liked to have reached the diagnosis sooner …liked. I’d like it if you would have the decency to admit you are sorry and fucked up by paying me back the private costs of an MRI and a contribution to the extra pain you put me through. The only reason you’d have liked it too is so that you couldn’t be found guilty of this.

in the hope that this might have limited the impact on you I guess a couple of months less sitting on the sofa feeling dizzy 24/7  might have helped many things…

and we are sorry this did not happen” …yes I bet. Well I don’t want to reduce your 100K or so income do I? … I have no idea how you manage to survive on it, especially considering it takes weeks to see you and I cant even get you to sign your own letters you have written to me, you must be so busy… maybe you would like to swap and manage on about 11K since we lost half our customers while I was ill for so long and my husband had to care for me. I am sure I could probably do just a good job as you anyway…after all what is NICE, NCBI, GP notebook and the NHS website for…