physiotherapy.

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.