If you read my last post, you would've seen that earlier this week I went to see a neurologist. As I had slowly been running out of options having had so many major tests and seeing countless doctors, I was hoping my second visit would offer me some hope. However sadly I have been told that I have an 'UNKNOWN ILLNESS' and there is NO CURE. There is no known medication to help, and basically they just sent me on my way to live and carry on as I am. It has taken a while to sink in and I am still trying to get my head around it. During the appointment my Dad (He came in with me) told the Doctor how I am passing out and having fits almost daily and on a few occasions have been close to serious injury because of falling in a bad place. Also how I am forgetting things, am in serious amounts of pain, can hardly walk, talk, have problems head to toe and all symptoms are getting worse and I am deteriorating in front of his eyes. The neurologists reply was:

'It's tricky, Hayley is as equally as disabled as someone with MS. Her body is shutting down but there is just nothing we can do. I can only suggest seeing a therapist to try and cope better with the emotional side of things'

How can somebody as ill as I am who because of an illness has such a low quality of life, no Independence whatsoever and 1 year ago was a perfectly normal girl, be told that because of a lack of knowledge of these neurological kind of symptoms I have to continue as I am with no help. I was also told I may get better after a few years, but nothing is ever guaranteed. I feel confused, frustrated and honestly I just don't know what to think or feel.

In a way I am glad I have not been diagnosed with MS or any other serious lifelong illness, but at the same time a diagnosis would allow me to at last accept what I have, and begin to educate myself on the illness. Instead I am still in the same position as I have been throughout this year - clueless.

I'm normally quite good at staying positive because it's the only thing we can do at times like this, but I am finding it extra hard at the moment.

I am also very angry at the fact that this week I got turned down for disability allowance. How ill does a person have to be to be entitled to some financial support? I will fight it though, because I believe the wrong decision has been made and I should be entitled to something.

I want to share with you this song, it's one that I like to listen to when I am feeling low. It makes me think of my best friend/boyfriend Alex, who has been (cliche moment!) my rock throughout this whole process. It helps remind me that I have such amazing people in my life who support me no matter what. :)

Any thoughts or words of wisdom greatly appreciated!

Hayley-Eszti x
It's not good news. There is no cure.

On Tuesday night I had an ambulance called out to me at home and was taken into hospital.  This has become a fairly regular occurrence and will have been the 5th or 6th time for me in a matter of months. This blog post is about my opinions on the NHS service, ambulance response time and A&E. These are only my opinions but they are based on my own experiences within the past year. If you do not want to read negative thoughts about the national health service I advise you not to read on!

Tuesday wasn't an overly bad day, I did collapse in the doctor's waiting room (embarrassing!) and had to be carried out to the car but other than that I wouldn't say it was any different from a normal day. Tuesday evening was a normal night for me, I got myself into bed and then that's when the problem began. I was suddenly in an awful lot of pain which was making me scream in agony, and trying to get myself to the toilet was impossible and I collapsed on the landing. My dad could hear me struggling and saw me in a heap on the floor and tried to comfort me and help me get back into bed. This overwhelming pain is not a one off thing, and the collapsing has begun to happen almost everyday, several times a day.

It has been over 2 weeks now since I was told by my GP that I would need urgent referral to see a neurologist again, and since I was told I would hear from somebody within a few days as my situation is now one to be classed as urgent. This is one of the reasons my dad took it upon himself to call for help. Ideally he wanted a GP to come out to me to see me at my worst because a lot of the time if the doctor doesn't actually see me when I am feeling particually bad they don't take it seriously, but they sent out a paramedic.

The paramedic gave me gas and air to help ease the pain, which it did but not completely. Also taking into consideration my other symptoms he felt it was necessary for me to go into A&E so called for an ambulance.

This leads me to the important part of this blog post:

I don't know if it is by coincidence that only today on my local news there was a story about ambulance response time, and it could well be that it is only a problem in my local area, although I highly doubt it.
Fair enough I was not having a heart attack, a stroke, or in a life threatening situation where I required transport immediately  but I still don't think the 2 hour wait was at all acceptable. I needed care that the paramedic could not give me. In the end I didn't even have an ambulance come out, instead I sat in the back of the paramedics car with my dad having to drive behind because there was no room for a relative.

The stories on my local news included a gentleman who was having a heart attack who had to wait an hour before help arrived, and another gentleman who had been involved in a motorbike accident and was at high risk of dying. In the end he had to be driven to hospital by his brother. If they would've waited any longer both would have died. This is completely unacceptable.

Once I actually got to the hospital I was faced with yet more reasons to feel like the NHS service is letting us down. A part of me feels quite bad about bad mouthing the NHS, but for me personally I have not been very happy with the service I have been given throughout the past year and I have just about had enough of it.
The Doctor that was working in A&E that night came in to see me, asked me a couple of questions and with that said 'Go home and see your doctor this week' The same thing I have been told every single time I have gone into A&E. But the question on my mind and my families mind is where does the responsibility lay if I was to collapse and seriously injure myself? It's only a matter of time before this happens right? Also, if my doctor has done all she can and now I am in the hands of specialists what is going back to her really going to accomplish? I will most likely be told that she will get in touch with the specialists that I should have already seen and in the meantime I continue to suffer and just hope nothing serious happens. The A&E doctor's very own words were "If I was to admit Hayley into hospital my superiors would kill me" and what would happen if (worse case scenario) something was to happen to me such as a fall in the wrong place at the wrong time, a bad fit? or a bad case of any of my symptoms and it killed me? It could happen - especially with my case becoming worse by the day.

I've heard far too many stories in the news recently of people going into hospital and within hours, days or weeks after have died because they were told they were 'ok' One story involved a man in his 50's coughing up blood. He was sent home only hours after going into A&E and sadly passed away the next day. Also a very young child with meningitis, the doctors failed to notice vital symptoms and the mother was told the baby had swine flu - again was sent home, and died only hours later. These are just the first examples that spring to mind but I know there are many more cases where the damage became irreversible.

My point is, when does enough become enough? What is an acceptable time to wait before an ambulance arrives? How long does a person have to be unwell for before one doctor (because that's all it takes) says no to the system and despite them not holding the 'main problem areas to be considered for hospital admittance' gives an individual adequate care?

I do feel that if I spent a week in hospital they would actually see what I live with and see that I do need help, because spending an hour at the most with a chronic illness sufferer is not enough time to get an accurate judgement of that persons illness and needs, and I am sure the families of the people who have passed away due to a lack of appropriate examinations and essentially appropriate care agree that if a person can't get past the front door how can the exit door ever be crossed?

A 999 Emergency Nightmare


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