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Thursday, 13 October 2011

the world from a wheelchair ...

I just thought I would write about what it is like going out and about in a wheelchair. I hope that it will make some people think about how they treat people in wheelchairs and also those who are pushing them. I will start off by saying about accessibility. There are many places that I cannot go now because they do not have access they just have stairs and a lot of them. I cannot do stairs. Maybe one step is okay I can just about be pushed up one step in my chair. Any more is just too much for my carer to do. Some places do not have stairs still do not have suitable access as their walkways are to narrow and there is not enough room to manoeuvre a wheelchair.

he main problem I have though is not with accessibility but it is with people's attitudes. I despise it when I go into a shop with my carer and the person who is serving on the till just ignores me and speaks to my carer instead even if it is me who is making the purchase. How patronising is that? Back when I was able-bodied when a disabled person came into my shop in a wheelchair I would never ignore them and I would serve them or ask them who was paying. It is not hard and I wish people would treat me like this now. I have been in restaurants and the waiters have asked my carer's what I want. '' What is she having?'' And my carer's just say '' why don't you ask her?'' I have heard of people in wheelchairs being patted on the head and their carers  or partners being asked,'' can they talk?'' What makes people think they have the right to speak and act to somebody like that? Why do people think they need to speak down to me and patronise me? My legs and body might not work but my head is fine.

And to continue with my moaning and you other people reading this who are in wheelchairs will understand this moan. Maybe the same thing has happened to you. Those of you who have babies in prams will also know what I mean. This one is about when you go into a shop in a wheelchair or pushing a pram and other customers start tutting,huffing and puffing because in their opinion you are in the way and should not be allowed to go into such places. It is the same when you go into restaurants and pubs and people give you dirty looks when you go in and try to get past them. Maybe they think  people with disabilities should just be locked away and not seen in public.

There are some benefits though but I would much rather be able to use my legs. They are that I get to use disabled parking. I can have a carer come to the cinema with me for free. I get to queue jump in some places. And I guess that I always have a seat. Anyway I hope you've enjoyed reading my complaining. Helps me feel better anyway. Let me know what you think. X

Tuesday, 11 October 2011

ifs buts maybes and generally feeling stressed.

yet again I am blogging. I find it a good way to relieve my stress and it is a good way to get things off my chest. And also it is a good way of recording the things that are happening so that I do not forget. I still do not know who it was who made the complaint about my level of personal care. My so-called social worker said that it was my private physiotherapists, I really hoped that it would not be them as I really like and trust them and this would be a way of breaking my trust as it would have been going behind my back and treating me like a child. So I asked them, and they said it was not them and that they would not do something like that because it is nothing to do with them. So who was it? The mystery continues. Obviously somebody is trying to mess things up for me. I would really like to find out who it was and ask them why they did it.

So I started feeling miserable again. Is it wrong that I should feel sorry for myself when there are people who are a worse than myself who don't moan half as much. I do like moaning though. I have been wondering if it could have been any different. Is there anything that I could have done different to have not ended up like this? I am annoyed as well because I tried so hard in the rehab unit to improve my condition. The physiotherapist's, occupational therapists and nursing staff worked so hard with me and I was pleased with what we achieved as I managed to walk across a room. After months of being in bed that was an amazing feeling. But then I get dumped in a nursing home and get no therapy for three months and I lose everything I have achieved. I have not lost everything just one time I have lost it twice. I find that is so depressing. I then received some physiotherapy I was slowly improving again. Maybe I could have got back up to the level I was. But oh no the PCT put time limits on how long you are allowed to get better for. And now I am only given 2 outpatient appointments a week. I told my physiotherapist what I have achieved in rehab and she told me that it was all lies and everything I did there I actually didn't do. She said it is impossible for me to have walked. I know I did because I was there.

I know I will never be 100% better. I just know I can be better than I am. Maybe I will be able to work again. I would love to go back to my shop. Before I got ill I was just about to start my veterinary nursing course. I will never be able to do that now. I need to stop thinking these depressing thoughts. I realise now that I will never achieve any of my ambitions. I will never work with animals again, I will never have my own family as I am definitely not going to be able to have children as I am unable to look after them and I can't even look after myself. Also I am never going to have a boyfriend now. Who is going to want somebody like me? I think if it was the other way around would I date somebody in my situation and I don't think I would so I cannot possibly judge anybody. I will cheer up soon. Another thing that made me mad the other day was an able-bodied person saying to me I should be grateful what I have. How dare somebody with such a perfect life say that to me. That is so hypocritical. I am grateful for what I have but I am struggling with depression at the moment.

Monday, 10 October 2011

a letter i've written, but thought it may be applicable here too.

My name is Emily Austin. I am 24 years old. I had a brain tumour successfully removed in 2009. I was left with NO PERMANENT DAMAGE.  I am writing to you because I am being harassed and bullied by the Liverpool Primary Care Trust and Liverpool Adult Social Services.
                Liverpool PCT firstly saw fit to breach my human rights by reducing my physiotherapy for no reason other than to cut spending.  When i made a complaint about this, they formulated a response which was nothing more than a lie to cover up their illegal actions.  Additionally, once the complaint had started, they decided to move me from the clinic where I was being treated to an NHS outpatients clinic.  I believe this was an effort to deceive any outside parties who may investigate their decision to reduce my therapy.
The therapist at the NHS clinic had already been told what amount of treatment she was going to give me.  My original therapist had gone against the PCT and advised them not to reduce my therapy and I believe this is the reason that they moved me, not the reason they have given in their response to my complaint.   I was never told about any intention to eventually place me in an NHS clinic or anywhere else and I still haven’t seen any proof or any sort of documentation to back up their claims.  The PCT also chose to ignore a letter from my consultant neurosurgeon advising that I need aggressive physiotherapy and not therapy based on two outpatient appointments per week.  The reduction in physiotherapy has not only caused my progress to slow down and stop, it has actually caused a reversal to the point where I am almost at the level I was before I ever started to receive physiotherapy.
Additionally, the length of time it has taken to process any enquiries I have made is appalling.  In the response to my complaint, I received an offer from the PCT for another physiotherapy assessment. The letter is dated for the 26th of August and I have still not heard any news regarding the date for the assessment.  I suspect that these delays are being made on purpose in the hopes that I will give up and go away.  I can assure you that I will never give up!
Furthermore, in May of this year, I had a scheduled care plan meeting with my social worker and was told that there would be no further care plan meetings for 12 months.  I have documentation which confirms this.  Following an alleged complaint from one of my physiotherapists about my level of hygiene and personal care, my social worker contacted me to organise another meeting in September of this year.  At this meeting, we asked to see the letter or any evidence of this complaint.  No evidence was presented to me as she hadn’t yet received the information from the PCT.  I am lead to believe that this meeting should never have happened while the social worker did not have all of the relevant information regarding any complaint with her. Since the meeting I have written to the social worker requesting a copy of the letter of complaint because I believe it is my right to see this letter and any other relevant information about myself that I request.  My social worker has informed that I am not allowed to have a copy of this letter as, in her words, ‘it involves a third party’.  She has also told my carer, during a phone call, that Liverpool district nurses have expressed concerns about my safety and wellbeing because there is no key in the key-safe at my front door.  There is always a key in the key-safe.  Again, I have seen no evidence to support any such complaint.
I think all of these ‘so called’ complaints and allegations were excuses for the PCT and the social services to call a meeting at the complex needs panel where my direct payments have been reduced by 3 hours per week when my circumstances haven’t changed since May.  The reason given for the reduction in hours is because my physiotherapy now takes place locally in Aintree twice per week and once a week at home.  I can accept a reduction of 1 hour for the session that takes place at home, but to revoke the other 2 hours for my P.A. to escort me to the NHS unit is not acceptable as I cannot do anything for myself and therefor will not be able to get to my sessions.  The PCT and the social services cannot expect my P.A. to work for free.  My social worker has informed me that there will be another care plan meeting followed by a complex needs panel in six weeks time.  I am fearful that this will be taken as another opportunity to reduce my care plan further.
My social worker and the care coordinator from the PCT have both met me in person and are well aware of my physical condition and the fact that I am unable to carry out even the most simple of tasks.  It is obvious then, to say that I am completely reliant upon others for every aspect of my life right now.  Because of the actions of the PCT, I am likely to stay in this condition for the rest of my life unless somebody intervenes on my behalf very soon. Please help me.

Tuesday, 4 October 2011

the harassment of Emily by the PCT!!!

so are the PCT harassing me? I certainly think so. They are supposed to be looking after me and in my opinion they are not doing a very good job of it. They are treating me like I am a naughty child. Constantly prying into my life. I am currently very happy with the care that I receive off my three carers. They are absolutely fantastic at their jobs and they are very hard-working. For some reason the PCT got it in to its head that my personal care was being neglected. That was completely untrue. I am unsure who exactly made the allegation and I have asked my social worker for a copy of the letter of concern regarding my care. I am not allowed to get this letter as it involves a third party. Surely I should be allowed to see documents that are about me. And where were the PCT when my personal care was being neglected when I was in that nursing home? They didn't care then did they? It seems to me that the primary care trust want me back in a nursing home. And they are constantly picking problems out of thin air about my life in the bungalow. I know it is much cheaper for me to be in a nursing home. What kind of life is that?

So why do I think the PCT is bullying me? Well it seems that every time I complain about the actions the consequence is that they make things worse. For example, when I complained about the reduction in my physiotherapy they moved me from the clinic I was being treated in into an NHS one and they also tried to cut my physiotherapy down to 2 sessions a week but because they worded a letter to me poorly I was able to keep another session. They are dying to take off me as well. And also after this complaint I made and they  took three hours off my care package. I got told that my last care package review that I would not have another for another year. Four months after that I get told I am having another review. It was the result of this meeting that I got the three hours taken away. I have been told that I am to have another meeting in a few weeks. My carers have got to keep detailed logs on my care. For example how often and what I am eating and how often I need assistance during the night. It's like I am being spied on. It is harassment in my opinion. I know why this is it is so they can take away as much care as possible so it was cheaper for them. I am scared that they are going to reduce it and reduce it until I have no choice but to go into a home. Why have I got to suffer because of money? Me and my family have paid tax, you would think that when you become ill, you will get looked after by social services. Isn't that one of the things that tax money pays for?

So anyway, if social services want detailed logs on me I will do detailed blogs on here about every little thing they do and see how they like it.

if there is anybody out there who can help me sort all this mess out please get in touch with me I am starting to get desperate.

Monday, 3 October 2011

so let's call it hellside

so I had six months living in a nursing home. I am worried at the moment that social services want me back in a nursing home. I know that it is a cheaper option for them rather than me living in the community in my own bungalow using the direct payments scheme to employ carers of my own choice. I am a lot happier in my bungalow and I have gained weight and am not as depressed as I was in the nursing home. So yeah I'll tell you about it.

I didn't want to go into a nursing home but I had no choice. There was nowhere else for me to go. I actually got told that I had to go to a particular nursing home and it was either there or an old people's home. I definitely didn't want to go to an old people's home. I got told that it was a young disabled unit. Well let me tell you something. It certainly wasn't. I was the youngest person there. Other than a young man in his 30s who I knew from rehab everybody else was at least 50. There were three people on the unit who suffered from MS. Nobody else on the unit showed any sign of physical disability. A lot of them were alcoholics.a nursing home is just not the right place for a 24-year-old to be. I was in a room on my own for about 21 hours a day. Sometimes more if I didn't have any visitors. It was like being in prison. I would just lie there staring at the ceiling. It's got less boring when I got a television. Daytime TV sucks though. I became an expert on airline. I can't fault the staff, other than one nurse. I guess the home was understaffed. I would ask every day if I could have a shower and usually I was told no because they were too busy. It's a horrible feeling being unclean and being unable to do anything about it. One time when I had a shower, it was with the nurse that I have a problem with. First of all I was undressed on the bed. That was fine. I was then put in the shower sling, I was tossed around like a rag doll getting me on to the sling. I was then hoisted into the shower chair. Other than being a little rough with me getting onto the sling everything was normal. I had a large towel placed over me for my dignity whilst the nurse and a carer wheeled me down the corridor to the wet room. When I was getting showered one of the pagers went off. And the nurse ordered the carer to go and answer it. There should always be two members of staff with a patient with a disability is such as myself when doing something such as showering. The carer went to answer it. The nurses Pager then went off. I know it was not an emergency call as the bleep would have been different. Even though she knew that I couldn't be left she opened the door, left it open and wandered out. Leaving me exposed! I felt so humiliated, vulnerable and angry. There were plenty of able-bodied men in the unit who could be walking up and down the corridors. I screamed and shouted for her to come back and shut the door and when she did after about a minute she came back and had a go for shouting. I was fuming. She covered me back up and took me back to my room. With assistance she hoisted me back onto my bed. The other carer then left the room as somebody had shouted her. The nurse then wandered out of the room leaving the door wide open leaving me exposed for the second time in a day. She came back quickly and didn't even apologise. I don't think she even realised what she had done. I complained about this issue to my social worker.

The staff toilet was next door to my room (or should I say cell) anyway, I could hear the toilet flushing. And I can also hear whether or not they washed their hands. Well, the majority do not. As I have to be fed as I cannot do this on my own I decided not to be fed by people who did not wash their hands after using the toilet. Some of them even had filthy fingernails. How can I possibly eat food handled by them? I then only had something to eat when my friends and family came in. So I was eating about say maybe three meals a week. I lost about three stone in weight.

Luckily after three months of no physiotherapy I was then via a lot of phone calls and writing letters and with the assistance of my local MP I was noticed by the PCT and I was granted physiotherapy five times a week. I was glad to be getting out of the home for a while. I had to get a carer escort to go with me in the taxi to keep me safe. Unfortunately one time I was given an escort who was a complete dozy cow. She sat next to me in the taxi and didn't keep an eye on me. The Escort is meant to make sure that I am safe. This one certainly didn't. She was gazing out of the window when we went round a corner. I went flying out of my wheelchair. I was lying on the floor and the taxi driver asked if I was okay and the Escort just looked at me and asked me if I was okay to which I replied do I look okay? In the end the taxi driver came and picked me up. At least he had common sense. When I got to the clinic I told the physios that I have had a fall and the Escort and yelled that I had not. Luckily the physios believed me. They could tell by my bruises and the tightness in my muscles.
I made sure that the Escort never take me again.

I was meant to move into my house in September. But due to my social worker being an incompetent cow it was delayed until the end of November. And the only reason it happened in November is because one of my friends got fed up of the social worker being lazy and messing around. He got the necessary numbers of my social worker and sorted out me moving in to the bungalow. Sorting out things like hoists and the shower chair and a hoist. We had a bit of a problem in getting the equipment because I was moving from Knowsley into Liverpool. After much messing around by both councils I eventually got all of my equipment and could move in. I was so happy to have escaped the nursing home. I feel sorry for people who have to live in them. I feel sorry for the staff who have to work in them. I don't want to go back to one. It is like prison and I do not think that I deserve that sentence ... thank you for reading. X

and so it continues ...

so this weekend has been bad. It is amazing how one sheet of paper can make me feel so miserable and make me lose yet more hope. This latter said that my care package had been reduced by three hours. To those of you reading this that probably doesn't sound like much. But to me it is. In my opinion if they are taking these hours away from me it just gives them the opportunity in the future to take more. I am really worried that they are going to take more I eventually going to get left with nothing? Yet again the people who are making these decisions that really affect my life have never met me. My social worker is meant to fight my corner and it doesn't appear to me that she is. It is so unfair and I am getting so worked up and stressed. I think they want me back in a nursing home. I know that it is cheaper for them that way. I am really worried about that. I don't want to go back to that hell. I know it sounds dramatic but it is hell! This is only a mini blog. I will go and write another one about my time in the nursing home you understand then why I do not want to go back. I know that my friends and family will not let me go back and I am a stubborn cow so if social services try and put me in a nursing home it is going to be with me kicking and screaming. I guess that would be good exercise for my legs and lungs though. Anyhoodle that at the end of this mini blog. I am now off to write up about my stay in a nursing home. Thank you for reading. X


brief history.

I had a benign brain tumour on my brainstem. The removal of this left me quadriplegic and in intensive care on a life-support machine for three months. When I was healthy enough, I was discharged into the Walton NRU. I was a patient there for approximately 8 months. Whilst I was there I received physiotherapy and occupational therapy five times a week. Each session ran for 45 minutes. After eight months of intense physiotherapy my therapists got me to the stage where I was able to walk across a room with assistance. I was really happy and relieved when I managed to achieve this as I thought it meant that I was not sentenced to a life in a wheelchair. However, as there was nowhere else for me to go I was then discharged into a nursing home. During my first three months in the nursing home I suffered abuse and neglect and received no therapy. Because of this I was left in a bed for the three months. My body deteriorated a lot because of this. I was unable to do my physiotherapy exercises because I had no body to assist me. I was pretty much left on my own for at least 21 hours a day. Without trying to sound overly dramatic and that was quite psychologically traumatic, as it was like solitary confinement. Following a lot of phone calls and writing letters my friends managed to sort out me getting some physiotherapy. That treatment was supplied by a private neurological physiotherapy centre but it was funded by the local PCT. I was then getting treated 5 times a week by two highly experienced physiotherapist's for an hour per session. During each session the physiotherapist would stretch and move my arms, legs and head and neck. They would also work on my trunk and sitting balance. We would also do standing. I need a lot of support physically to do a stand. We built my standing up from 30 seconds gradually to 20 minutes. I was very proud of this achievement. Even though I had achieved better before I had had to start over from the beginning again due to the careless handling of my care and therapy package by the PCT. This makes me very angry and it also makes me feel worthless and like I am a burden to society. I then had to have a meeting with some representatives of the PCT, during the time of this meeting I had moved from the nursing home into my own bungalow. It was decided at this meeting that my therapy should be reduced from five times a week to 3. I asked for this in writing. After speaking to my neurological physiotherapist I discovered that she had advised keeping my treatments to 5 times a week but this was ignored by the PCT. I decided to complain about the decision made by the PCT, and I was first told incorrectly how to go about the complaints procedure. After some phone calls we discovered the correct procedure for complaint and proceeded to follow it. After this I was then informed that my treatment would now no longer be at the private clinic but would now be at an NHS Centre. My private physiotherapist told me that I did have good potential to make more of a recovery. My new physiotherapist has told me that I have no hope and that I may as well stop dreaming about being able to do things like walking. I know myself that it is possible. But of course it will be impossible without the treatment. I am now only getting physiotherapy three times a week. I have two sessions in an NHS Centre during which the therapist just stretches me a bit. It is all very passive and I think that it is pretty much useless. I don't think I benefit from this what so ever. I do have one other session of physiotherapy on a Saturday off the private clinic in my own home. I have two physiotherapist's during this session and what they do is stretch and mobilise my muscles and also we do some weight bearing on my legs. In my opinion it is a lot more awkward to run these sessions in my home. It would be easier if it was in a clinic with equipment such as plynths. I had no idea why the PCT decided to move me. But I do sometimes think that it is because of money. Do I really deserve to suffer because of money? I have the potential of getting a lot better than what I currently am. I had no chance of this unless I am given decent therapy which I am not being given at the moment in time. I do not understand why the PCT believe that they can put a timescale on a person's recovery. Recovery such as mine takes a very long time. Patients such as myself can sometimes plateau for awhile and then they can recover some more. Because I did not make the recovery that the PCT would like I have now had the opportunity to take it away from me. I had been sentenced to life in a wheelchair. I would like the people who sit on these boards making these decisions of taking therapy away from people to put themselves in our situation. I would like them to spend a day in my shoes or at least take the time to meet me. I believe that this happened and that they would soon change their minds. Rather than making their decisions from their ivory towers.

I am very angry at the moment. I am angry that I can see my chances of recovery slipping away.

If you or somebody you know can help me with either my fight against the PCT or in getting more physiotherapy or the equipment that I need please contact me. Thank you for taking the time to read this.