#DWP & #ATOS at it again please read! – #disability #ESA & #ATOS

I just read an article that has hugely saddened me, please keep reading and follow the link to get the full story.

A blind woman has been made seriously physically ill by ATOS and the DWP working in a way that totally disregards the Equality Act.

Having just read the facts of what happened I am so stunned that I really don’t know what to say.

The matter boils down to one of what’s sometimes called a print disability. The term print disability can be used to describe anyone who is unable or would struggle to read standard print. It’s an umbrella term and can be used to describe conditions such as total blindness, dyslexia and intellectual disabilities.

In this case the lady in question uses Braille or audio instead of standard print and ATOS & DWP are unable to produce this.

They then told her that she would have to find someone to fill out the form for her.

The stress of this landed her in hospital.

As I said at the beginning this saddens me you might think that’s a strange reaction, maybe it is but for me it’s personal.

As I’ve mentioned before my mum is almost totally blind her way of dealing with written correspondence is Braille.

My mum requested the same form as the woman in this story in Braille and got the response at the other end of the phone that said ‘I’m not sure if we do Braille but we should I will try and get it for you’.

The form the arrived in standard print with a deadline to have it completed and the threat that missing that deadline will result in loss of benefits.

My mum is lucky she got help from my dad and a local charity but for thousands of other people this is not the case.

I have also had help to fill out the form in question. I’ve also had the stress of trying to get it done in time for the deadline bearing in mind I get one hour of support a week!

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Former Archdeacon of Wells, Dick Ackworth, denounces unfair ‘benefits test’ – read why and sign his petition. #ukmh #MentalHealth

My own ‘medical’ was an absolute farce!

My assessor was provided with evidence from all my consultants but still when it came to my visual acuity test I said what I could see and my assessor said ” now try really hard”. As if if I put enough effort in I wouldn’t be blind!

My mum is also going through an ESA appeal as they found her fit for work when she quite clearly isn’t!

These tests cause nothing but stress and are carried out in a way that is often demeaning and causes distress.

They are not fit for purpose.

Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

Blindness Is The New Cancer

As you may know I have an eye condition that effects my Macular in a similar way to Age related Macular Degeneration (AMD), but alas I am not seventy! In March I had a Sub-Macular Haemorrhage caused by sever Myopia (short-sightedness) and a combination of all the other eye conditions I posses (currently about 8).

A few weeks later at a routine appointment (that was nothing to do with my eye conditions) my GP decided to give me an eye test and inform me of a new brand of vitamin that was good for the eyes. Further research showed that it might help but at £60 for a months supply for me (being a poor student) it was never an option, and to be honest I was not sold on the idea that a vitamin pill would even help my condition.

Then I saw this story telling me that a supplement could  ‘slows down blindness’.  Research suggests if you have AMD and consume a diet high in antioxidants or even better high doses of antioxidant supplements it will slow down the rate of deterioration.

That’s it sorted then eat a load of fruit and vegetables and you’ll be fine… NO!

Exactly a week previously the story was “Oily fish ‘can halt eye disease'” . It suggests that  eating Oily fish ‘like mackerel and salmon’ appears to slow down or even halt the progression of AMD.

So if you eat a diet of purely oily fish, with a side of antioxidant rich fruit and vegetables you should be all right… Maybe!

None of the above dietary suggestions will cure AMD and make it all go away they are only theories worked out by scientists who have run trails who’s sole aim is to prove their theory to make money.

To further complicate matters there are two types of AMD, Wet AMD and Dry AMD.

Currently there is no reliable treatment for Dry AMD, wet AMD does have treatment options that can slow down the disease but wont completely eradicate it.

My main point of this long rambling post is this – There are loads of ‘cures’ and preventative measures flying around in the media for cancer we are used to seeing them if we took  every precaution we would live in contaminate free clean rooms, naked and with sterile safe foods shipped in every day. It is not reality nor is it practical do possible everything possible to prevent cancer because we simply don’t (in most cases) know what causes it.

Blindness is the same in this respect there 1001 things we can apparently do to stop us going blind but in reality Ophthalmologists (eye doctors) have not yet identified all the eye conditions that effect the human race yet let alone start on what actually causes them. Thus preventing them and curing them is impossible, but the media will still go for the story of the next cure for blindness to sell its content for a profit.

My Day On The Ward

It’s just over a week now since I spent a day on the short stay ward of the eye unit, it was a long day particularly as I was sat there for about 4 hours waiting for it to be my turn.

Then when it was my turn all went well,  I didn’t see the needle coming towards my eye scream cry and then run, I was calm.

The whole op itself was about as horrific as I expected, my eye was numbed with drops and then rinsed out and then numbed and then rinsed a good few times.

Then I discovered there where actually two needles to go in the eye, needle number one was to numb it all and was supposed to sting, I love how oxymoronic that is!

I braced myself for the terror of the numbing needle and it was a complete anti climax didn’t sting at all really.

Then I got told to look left so the big gun, needle complete with Avastin could be inserted.

It hurt a lot!

My surgeon had to apply a lot of pressure to get the needle to pierce through my sclera (the white bit of the eye) and when the needle did get through it hurt a lot and there was a very odd popping sensation, I suppose you would expect that really but it was gross!

I can now conclude that the numbing injection number one did not work!

Due to the amount of pressure the surgeon had to apply my eyeball was very bruised and a lot of the surface blood vessels leaked so I left hospital with the white of my eyeball blood red.

As the numbing drops wore off I gradually got more and more pain in my eye, it streamed with tears constantly (which was irritating).

I had real big problems going outside in the sun and wind and stuff so I ended up having to patch my eye to make it  more comfortable. I can now safely say that I have heard every pirate joke going!

It’s taken a week for it to fully settle down and there is still some discolouration but I look less like a freak now.

I have to go back to see my specialist to discuss how it went and if it needs to be done again 4 weeks after it was done, its been 10 days and so far I have not had an appointment come through  so I think I will be chasing up the appointments system yet again!

Avastin is go!

Well today’s trip to the eye unit was LONG  over 4 hours long in fact so that was fun, especially as I have developed some form of cold/flu thing.

My pressures (as predicted by me) have gone back down to normal and the opinion of the consultant I saw was that it was they dilating drops that made it read so high on Saturday.

I had to have another Fundus Fluorescein Angiography which is a diagnostic procedure used to look at the blood vessels at the back of the eye in involves injecting a small amount of dye called Fluorescein into the blood stream so it can be watched going through the blood vessels and any leaky ones can be seen and photographed.

Last time the nurse got the cannula into the vein on the inside of my elbow first time, on this occasion however it took 5 attempts involving 2 technicians, 2 nurses and eventually a doctor!

It was a very crowded room and although it is mostly funny (I was trying to laugh about being a pin cushion) things got so desperate that one of the nurses went for the vein that runs kind of down the side of your thumb to wrist area and wowser that hurt a lot more than any of the others and worst still it failed!

So eventually a doctor had to come down because the nurses are only allowed 2 attempts each and after the second nurse they have to go up to doctor level, and the doctor got it first time, I had the test and all was well.

Then I saw a consultant who looked at the test results and had a little look at my eyes and basically there is still an active area of leaking from the blood vessels that should not be there, as the funding has been approved that means all systems are go and I should hear when my appointment is going to be within 2 weeks.

This is all good but there is however a slight down side.

Due to the complications of having glaucoma and Nystagmus (uncontrollable eye movement) and my eye history the consultants got together and decided that it would be better for me to have the injection done in theater. 

Instead of being in and out in 5 minutes as a outpatient I am going to be an in patient spending the majority of a day on the ward and due to it being done in theatre no hand holding companions will be allowed, I will be fine but it adds a whole new dimension to everything and is a little naff.

In total I will have 3 injections directly into my eye of Avastin each one will be 6 weeks apart and then after the last one I will have another Fundus Fluorescein Angiography to see how things stand, the good thing about all this is that hopefully most of that will fall over the summer break so there should not be too much disturbance to next years uni.

I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!

First off I’m trying not to actually think about the prospect of having a needle put into my eye whilst I am awake, I know I won’t feel it because my eye will be numbed but still for most people I think it is a fairly horrific prospect.

My consultant has asked my PCT (primary care trust) for funding to treat me with Avastin a drug originally used to treat colon cancer; by injecting it into the eye it can be used to get rid of the blood vessels that should not be there. (it’s the leaky blood vessels that have just caused me to lose some vision in my right eye and will if left untreated result in losing all the sight in my right eye)

Surprisingly I typed in ‘Avastin’ and ‘eye’ into Google and got up a result page that actually talks about the cause of the blood vessels in my case (high myopia) and the fact that it is not just old people who get the probelm, have a look if you get a chance at  www.maculacenter.com/Procedures/Avastin.htm.

A cut down version:

“There are other eye conditions that cause loss of vision due to abnormal growth of blood vessels in the back of the eye.  These can occur even in young patients, and include, but are not limited to, conditions such as high myopia (nearsightedness)histoplasmosis, angioid streaks, and eye injury.  Sometimes there is no known reason for the abnormal blood vessels.  Without treatment, vision loss may be quick and severe.

POSSIBLE BENEFITS AND “OFF-LABEL” STATUS

AvastinTM was not initially developed to treat your eye condition.  Based upon the results of clinical trials demonstrated its safety and effectiveness, AvastinTM was approved by the Food and Drug Administration (FDA) for the treatment of metastatic colorectal cancer.  As a condition of approval, the manufacturer produced a “label” explaining the indications, risks, and benefits.  The label explains that AvastinTM works by blocking a substance known as vascular endothelial growth factor orVEGF.  Blocking or inhibiting VEGF helps prevent further growth of the blood vessels that the cancer needs to continue growing.

 

Once a device or medication is approved by the FDA, physicians may use it “off-label” for other purposes if they are well-informed about the product, base its use on firm scientific method and sound medical evidence, and maintain records of its use and effects.  Ophthalmologists are using AvastinTM “off-label” to treat AMD and similar conditions since research indicates that VEGF is one of the causes for the growth of the abnormal vessels that cause these conditions.  Some patients treated with AvastinTMhad less fluid and more normal-appearing maculas, and their vision improved.  AvastinTM is also used, therefore, to treat macular edema, or swelling of the macula.”

So there we are then I will, if the PCT decide to fund it be getting treatment to hopefully stop me going blind in my right eye very quickly, I have just one question:

Anyone think they can stomach holding my hand while I have it done?

The consultant calls…

On Tuesday evening I got a call from a consultant at the eye unit, very nice consultant Mr T phoned and apologised for all the mix ups and revealed that they are still unable to find 10 years worth of my notes, the early ones about eye sugary I had at 11 weeks old onwards.

He said he wanted me to go in today (Wednesday) for some tests and to see a different consultant that specialises in the back of the eye Mr S.
So today I dropped everything and headed off to the eye unit/day centre for 1 o’clock.
The bus I normally take is called the U6H and is part of the Uni Link service, this goes round half of the world and then goes to the eye unit taking at least an hour. I took a different route to the bus stop than I normally would to try and save time, on the way I realised I was going to pass the First Buses office so popped in there to ask if there was a quicker bus. Less than 5 Minutes later I was on the number 4 heading to the hospital even better it took less than 20 minutes!
(Oh dear! I have just realised what a sad anorak I sound like sitting here blogging about bus timetables!)
So anyway arrived a bit early and was told to basically go away by the receptionist and come back at my appointment time,  so I went for a walk.
Then I did my distance vision test, and only managed finger counting with my right eye. This is where the nurse or whoever stands about a meter away from you and holds up fingers to see if you can count them. 
That’s a deterioration because I can normally see the top letter of the eye chart from about 2-3 feet away, so great I have probably lost a bit tiny bit of vision, or quite possibly I am just having a bad day and if I where to do the test again tomorrow would do better who knows!
Then I got sent through to a new waiting room with comfy chairs and a water cooler absolute luxury compared to the other waiting room! I then got a call from a nurse who was tasked with explaining everything to me.
My pupils don’t really get bigger or smaller with changes in lighting condition’s so the nurse was unsure whether there was any point putting drops in my eyes to dilate my pupils so had to go off and ask a few people. 5 minutes later she re-appeared with a tissue for me so immediately knew it was eye drop time. I am indeed special and required 2 different types of eye drops to try and make the muscles in my iris dilate.
Then I had a few tests, a scan of the back of my eye which was like watching a funky laser light show and quite fun.
Then I had the big event as it where a Fundus Fluorescein Angeiography Basically in super easy to understand Jemma speak they inject you with dye and then take loads of pictures of the back of your eye.
The dye is essential so that the doctor who gets the pictures can see the blood vessels and stuff at the back of the eye, its the whole point of the test. I was told about the risks and  that it would turn my wee florescent yellow, like the colour of Gus’  harness and that my skin would probably turn yellow too. when the dye hits the blood vessels of the stomach it would probably make me feel sick and quite often people are sick, sometimes people also become breathless and faint, and rarely people have a minor skin reaction such as a rash. Then I got the talk about the possibility of going into anaphylactic shock and death and the need for resuscitation.
At this point I defiantly started to get nervous, I love the way that after telling me that there was a slim chance of having a sever reaction and death the nurse took my blood pressure and heart rate! I’m sure you can guess what that was like.
Then I got injected with the dye, I was very impressed that the nurse managed to find a vein on her first attempt and in the dye went.
You will be pleased to hear that I didn’t die instantly or puke all over them, but I did fell very sick and the room did spin for a few seconds and then all was fine. Oh and the nurse was right my wee is still very very highlighter yellow! 
So then I went and sat in the big waiting room with no comfy chairs or water fountains, even worse I was sat with a window behind me that had to be kept locked, it was rather hot! Luckily I was not sat there long and consultant called me in I’m going to abbreviated what he said and simplify it a bit.
Basically because I am short sighted and my eyeball is the wrong shape it has developed weak areas,  in these weak areas blood vessels have formed that should not be there. These blood vessels have popped a bit, it might have been a few of them or just one, so there is a collection of blood in the jelly bit of my eye. The blood will take about 6 months to be reabsorbed into my body and go away, but the blood vessels will not go away.
This is the bad news bit, there is every chance that I will have another submacular haemorrhage it could be bigger and completely destroy the vision in my right eye leaving me with nothing in that eye (my left eye is completely fine),  Or I could never have another bleed again.
Nothing can be done about the collection of blood already in my eye nature just needs to let it slowly filter away, which means I will have up to 6 months of living with this bloody floater popping in and out of my vision, trust me its annoying.
As for the blood vessels causing the problem, there is a treatment but it is not currently available on the NHS for my condition, so we would have to apply for funding.
It’s very rare for it to happen to someone my age, because it is my most rubbish eye that has been effected the consultant I saw was a unsure as to in his opinion it is worth treating, I informed him that I don’t want to lose the vision in my eye without a good fight first, so he is taking to the professor and will ring me next week.
I need to add quickly that this does not normally happen to people who are short sighted at my age, it sometimes happens to people with other eye diseases when the are over the age of 75 so nobody panic.
So in short I got a lot more info today about whats going on and although it is bad news I intend to fight if the professor thinks the treatment will improve the condition of the back of my eye, it will not get rid of the blood that’s already leaked or make my sight any better but it could stop me having a giant hemorrhage and losing it all.

Eye Casualty

After a night of worrying and not hearing anything I got a phone call from my mum who was equally worried, she (with my permission) rang The Eye Unit to find out what was going on.

She was told basically that I needed to get to Eye Casualty as soon as possible.
So I got a few bits together got ready and headed out.
I got as far as the PELICAN crossing outside my halls and had to turn back, someone had smashed a tonne of glass all over the pavement and the crossing, I can’t see glass so only knew when I was already stood on it.
Gus cut his paw, he refused to move so I did what I am trained to do in situations such as this, I picked him up, I got a few paces and he decided he was not having any of it so bit me, I dropped him, it was a true comedy moment, he did then decide to move however! I dashed back to halls and the residence manager bandaged up my dog and cleaned the wound, it was very small.
Then there was the frantic OMG I don’t know what to do panicked phone call to my mum, who told me to go straight to Eye Casualty because they where very concerned and sort Gus out later on.
So I got a TAXI to Eye Casualty saw the receptionist, who again could not find my notes.
I sat for an hour or 2, had a distance vision test and waited a bit more.
My notes where somehow found and I saw a doctor.
The doctor apologised for me being told to go in to Casualty, and told me that the doctor I saw yesterday had written a letter to a consultant to get him to look at my notes, the consultant would then decide when I needed to be seen and what tests I need and I will get a letter in the post.
In the meantime my macular has been bleeding, and they have no idea why. There is nothing they can do at eye casualty because they only deal with problems at the front of the eye there. 
However if it gets any worse before I get a letter I need to ring them up straight away and head down, they can’t do anything about it in eye casualty but they need to know.
So I have to wait for a letter to get loads of tests done, who knows what it is so its still just a worry at this stage.
So I left eye casualty having completely wasted my time and TAXI fare and a whole day I could have spent working on the 3 assignments I have due in eminently and headed for coffee.
Got coffee and rang vet, got  an appointment.
Got the bus into town then got more cash out (TAXI’s are VERY expensive) and another coffee and headed to the vets.
Saw the vet who commended the managers first aid skills, he had a good look and discovered that there was in fact some glass in Gus’ foot. 
Gus was an angel and laid there rolling letting the vet have a poke around and try and get it out, he kicked the vet a few times, who was incredibly patient with Gus. 
The Glass would not come out so the vet and I decided it would be kinder to sedate Gus to get it out.
2 and a half hours later Gus was still very not with it and now had a lovely Green bandage and we where heading for another TAXI home.
At the time of writing he is a lot more with it, but is not a happy bunny, he is currently sitting on his bed giving me evils asking me to make the bandage on his foot go away.
It took him forever to come round from the sedation, I got back to halls and dropped a piece of pepperoni on his face and he did not even notice.

Today’s visit to The Eye Unit

Well today I had my 4 monthly trip to The Eye Unit in Southampton, its a bit of a sausage factory and has all the issues any eye unit has, its like walking into a day centre or old peoples home, I’m still at the age of 20 the youngest person there by about 30 years but hey-ho its all part of the fun. I planned to get the bus after producing the days news bulletin for our student radio station, unfortunately the studio broke and what with one thing and another I was running late so splashed out on a TAXI. In my complete paranoia of being late, what happens I was an entire hour early! Anyway I signed in, did the distance vision test, which was a bit of an eye opener. They have got new electronic eye charts that are remote controlled, its no longer possible to cheat the eye test how upsetting is that! So anyway eye test done I went to wait to see the doctor an hour and a half winds by, I’m listening to my ipod, a million and one conversations that are going on around me and the sound of Gus moaning with boredom under my seat. Then my ears prick up its now 12:30 ish and I here a man behind me say that his appointment was supposed to be at 9:45 and that he has not been seen yet.


I then have that feeling of dread that tells me I am probably in for the long hall and that I should make myself comfy, maybe even get my laptop (her name is Lilly) out and do some work.

Then a nurse makes an announcement, the doctor I am supposed to be seeing is not in today and his replacement is a medical student, this is what is holding everything up. Then the good news, the other doctors have all finished there clinics now so are helping to clear the backlog.

Great I might actually be out of the eye unit by my next birthday! (October 31st if any one’s that interested.)

15 or so minutes later my name is called, it should all be quick and painless from here.

So I’m talking to the doctor she is a little horrified by the presence of my guide dog, she has a VERY quick look at my eyes then measures my Glaucoma score, doesn’t check them again, I could tell it was a bit of a quick get her out clear the backlog type examination. I am a bit of a specialist at being examined by eye doctors and medical students and have been round the opthamology block more than a few times. She tells me everything is fine my pressures are great and that there are no causes for concern.

I have a cause for concern, I have a small amount of debris in my right eye, its just remnants of scar tissue and stuff like that, every now and then a bit pops up, floats around a bit and I get a shadow in my vision, sometimes they are even pretty colours. I wasn’t really to concerned, but on Friday I got a new little floater.

I still have it now sat here writing this so thought as it has hung around for quite a long time I would run it past the doctor.

Doctor has a slightly better look at my eye and looks very concerned, then announces that the back of my eye has been bleeding, it might still be bleeding, I need to see the consultant and what have I done with my notes. 

It was literally those statements in roughly that order, at this point I got scared, and said that I had not at any point had my notes so didn’t know where they where either.

So anyway doctor goes off to ring consultant, she pops back to tell me that she can’t get hold of him so is going up to his office because he is probably by now on lunch.

So I’m sitting there and I realise I am completely pinned to my chair by the table that swings round with all the technical stuff on it. I try and push it away a little bit but its locked in place, literally on my lap, the building could burn down and I would be stuck there forever. I’m not a claustrophobic person on the whole but in that minute I was starting to panic.

Luckily a nurse swung by and I was like ‘Let me out I’m being claustrophobic’ one nice nurse and a glass of water later and all was fine.

Doctor reappears and says she can’t find the consultant or my notes. She doesn’t know why my eye is bleeding, or if it is still bleeding, or what to do about it, BUT it could be really dangerous and permanently damage my vision and I might need surgery to sort it out. (great, in my head I am shitting my pants)

She takes my mobile number encase they need me urgently, if no one rings me I will get a letter through the post, if I don’t get a letter I need to ring up and check I have not been lost in the system.

It all makes me have great faith in our NHS system, don’t get me wrong I love the NHS its a great invention and we are very fortunate to have free health care in this country, but wow losing my notes, missing that there is a potentially serious problem with my eye, then not being able to find a consultant to sort it out makes me worry a bit.

So anyway I am left to worry about what the future holds for my right eye and Wait for the phone to ring or a letter thorough the post… or to be lost in the system.

I have decided I am giving them a week if I don’t here anything I will chase them up, but of course I am now on red alert as it where, if anything worries me before I hear from them I will be heading to Eye Casualty straight away.

It’s all rather worrying really.