I wanted to write this blog since a couple a weeks but my computer crashed and I had no other means to post it. I am thankful to one of my friends who is allowing me to use his laptop to post this blog. I will try not to be too boring and make the story as short as I can. Trust me this is actually happening in UK. If you need more details please do not hesitate to email me on an address I specifically created because of this problem, ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■. I need your support. I suffer from a progressive familial ataxia. I stopped working when my balance and coordination became worse. My accommodation was tied with my job so I had to go into privately rented accommodation. After some time I needed a small adaptation, a grab rail, in the bathroom. The landlord refused permission for the adaptation. Instead he served me with a notice for possession. The Court gave an eviction order without my knowledge. I appealed and told the Court about my disability and the reason why my landlord was evicting me, The Judge rejected my appeal and dismissed my case. A bailiff order was given for me to leave the premises on 20 March 2013. I requested that the bailiff order be postponed because of my disability and also because I needed time to find another accommodation where I can move my adaptations, like bathlift etc. The Court agreed to listen to me on 19 March 2013 i.e the day before the bailiff. On the day I told the Court about my disability and the reasons why the landlord was trying to evict me. The Judge did not want to know and dismissed my application for bailiff postponement. The next day the bailiff came to throw me away. I was very ill in bed. The bailiff said ' you are still sleeping; you should leave the premises now'. I told them that I am disabled and i was not feeling well. They said that if I do not leave they were going to send me to Pentonville. Later I came to know that Pentonville was a prison in England. My symptoms were so bad that I honestly could not move out of bed. Meanwhile they put all my belongings outside and allowed the landlord to change the locks and left. I was locked in the room for two days. On the 22 March 2013 the social services called my carer and told him that I had to leave because the police and bailiff were coming back to put me on the street. I was so ill and tired that I could not take it anymore. I left the premises and went to the homeless office in Enfield.
I contacted Enfield Council since the day I received the eviction notice. I also wrote to them at least 28 days before the bailiff date. I told them about my disability and gave them all my medical reports including my neurologist report. I also told them about my existing adaptations that needed to be moved in case there is an eviction. Enfield Council did not do anything to help me. I wrote 12 emails to them and they did not reply to any of them. I called them many times without success. I was told to come to the homeless place when the bailiff throws me out. I explained to them that I was disabled and that it was impossible for me to come and sit in the homeless office especially because of my incontinence and other symptoms. They refused to make any adjustment as per the Equality Act with regards to my disability and insisted that I come and sit at the homeless office.
I waited at the homeless office until late evening. The Enfield Council found me a place where there was no electricity, no heating and no hot water. I stayed in the cold and dark for two days. The place is unsuitable for any ataxia patient. There is no wheelchair access. I have to go through three hard spring doors. I will probably die inside in an emergency situation. My finger got stuck in one of the doors while trying to go out. I had to go to the A&E for treatment. I have got no cooker, no phone line, no adapted toilet, the bathroom tap does not work etc. I have got no appropriate bed and have to sleep on the floor. I informed Enfield Council about it but nothing has been done. It is nearly one month that I am living in those conditions. This is a living example of the poverty and misery that ataxia can bring to anyone while some charities are living in the luxury of research which would probably never help any ataxia patient. Before my ataxia I was working and earning a lot of money and helping other people. With my ataxia things changed drastically to the point that I became homeless and helpless. This is a true story. I will be happy to give you more information and documentary evidence if needed. Life goes on. Best Wishes.
This is not typical of life in the UK - we have Ataxia UK to help with problems associated with Ataxia.
I am sorry you had this experience and suggest that you ask your friend whose computer you are using or a relative, to help you contact Ataxia UK Helpline.
The councils and the courts b.ame the government…no one want to take responsibility in these cases. This is how the uk is. I blame the government for allowing this to go on. People must know this…not just ataxians.
The best way to spread a story like this, would be to contact a serious newspaper and talk to an investigative reporter. Be ready with details and proof.
Sorry, can’t help you from the USA.
Good luck to you. Hope you can straighten up this very sad story.
Thank you Patsy. You are obviously looking at the wrong UK. I don't blame you. This is the way I was looking at things as well. Unfortunately things have changed a lot lately.I really do not want to upset you but its important to know that we are living in a different world than the one you know. Trust me, I have tried all the possible avenues. I am already a member of an Ataxia UK regional group. You are directed to Shelter for a housing problem and to Equality and Human Rights Commission for human rights problems. I have contacted both of them and they keep passing the ball to each other. You may be surprised to know that Shelter told me that they could not deal with me anymore because I could not speak. Do you know that you can no longer get legal aid with the existing system. I have tried it. I don't lie. I was referred to the Community Legal Aid Service. I requested a call back at a particular time. I receive the call back but nobody answered. I kept waiting until my battery ran out. I had to fight my case personally in Court. Trust me it waas not easy especially when you are almost speechless. I had to write all my defense. The Judge did not bother to read them. When I tried to speak he did not want to know. Trust me Patsy noone is willing to go out of their way to help you in this world. At our last Ataxia meeting I opposed the idea about Ataxia UK spending so much money on a research about CoQ10 which would probably not benefit any ataxia patient. I am a graduate from Sussex and also a qualified Nutritionist and CoQ10 is no stranger to me. I have worked with it for years during my practice and I am aware about all the research done in this field. Do you know how many ataxia patient are affected with CoQ10 deficiency? Only 60 in the whole world. You can check with Ataxia UK if you do not believe me. So why spend money in such an absurd research? They will give you scores of reasons to defend the luxury of this research but I won't buy any of them. This research has already been done by so many countries around the world so why not rely on their research and save the funds to improve the quality of life of existing ataxia patients. Thank you Joehamed. Thank you Cicina its much appreciated. I made an official complaint to Enfield Council and copied it to the Local Authorities Ombudsman. Lets see what happens. In the meantime lets face the misery.
Thank you Patsy. You are obviously looking at the wrong UK. I don't blame you. This is the way I was looking at things as well. Unfortunately things have changed a lot lately.I really do not want to upset you but its important to know that we are living in a different world than the one you know. Trust me, I have tried all the possible avenues. I am already a member of an Ataxia UK regional group. You are directed to Shelter for a housing problem and to Equality and Human Rights Commission for human rights problems. I have contacted both of them and they keep passing the ball to each other. You may be surprised to know that Shelter told me that they could not deal with me anymore because I could not speak. Do you know that you can no longer get legal aid with the existing system. I have tried it. I don't lie. I was referred to the Community Legal Aid Service. I requested a call back at a particular time. I receive the call back but nobody answered. I kept waiting until my battery ran out. I had to fight my case personally in Court. Trust me it waas not easy especially when you are almost speechless. I had to write all my defense. The Judge did not bother to read them. When I tried to speak he did not want to know. Trust me Patsy noone is willing to go out of their way to help you in this world. At our last Ataxia meeting I opposed the idea about Ataxia UK spending so much money on a research about CoQ10 which would probably not benefit any ataxia patient. I am a graduate from Sussex and also a qualified Nutritionist and CoQ10 is no stranger to me. I have worked with it for years during my practice and I am aware about all the research done in this field. Do you know how many ataxia patient are affected with CoQ10 deficiency? Only 60 in the whole world. You can check with Ataxia UK if you do not believe me. So why spend money in such an absurd research? They will give you scores of reasons to defend the luxury of this research but I won't buy any of them. This research has already been done by so many countries around the world so why not rely on their research and save the funds to improve the quality of life of existing ataxia patients. Thank you Joehamed. Thank you Cicina its much appreciated. I made an official complaint to Enfield Council and copied it to the Local Authorities Ombudsman. Lets see what happens. In the meantime lets face the misery.
Thank you Patsy. You are obviously looking at the wrong UK. I don't blame you. This is the way I was looking at things as well. Unfortunately things have changed a lot lately.I really do not want to upset you but its important to know that we are living in a different world than the one you know. Trust me, I have tried all the possible avenues. I am already a member of an Ataxia UK regional group. You are directed to Shelter for a housing problem and to Equality and Human Rights Commission for human rights problems. I have contacted both of them and they keep passing the ball to each other. You may be surprised to know that Shelter told me that they could not deal with me anymore because I could not speak. Do you know that you can no longer get legal aid with the existing system. I have tried it. I don't lie. I was referred to the Community Legal Aid Service. I requested a call back at a particular time. I receive the call back but nobody answered. I kept waiting until my battery ran out. I had to fight my case personally in Court. Trust me it waas not easy especially when you are almost speechless. I had to write all my defense. The Judge did not bother to read them. When I tried to speak he did not want to know. Trust me Patsy noone is willing to go out of their way to help you in this world. At our last Ataxia meeting I opposed the idea about Ataxia UK spending so much money on a research about CoQ10 which would probably not benefit any ataxia patient. I am a graduate from Sussex and also a qualified Nutritionist and CoQ10 is no stranger to me. I have worked with it for years during my practice and I am aware about all the research done in this field. Do you know how many ataxia patient are affected with CoQ10 deficiency? Only 60 in the whole world. You can check with Ataxia UK if you do not believe me. So why spend money in such an absurd research? They will give you scores of reasons to defend the luxury of this research but I won't buy any of them. This research has already been done by so many countries around the world so why not rely on their research and save the funds to improve the quality of life of existing ataxia patients. Thank you Joehamed. Thank you Cicina its much appreciated. I made an official complaint to Enfield Council and copied it to the Local Authorities Ombudsman. Lets see what happens. In the meantime lets face the misery.
Deo I do believe what you have said…the local couñcils and Organisations say they do not have the funding…I do blame the govt. because their cut backs do not help and they do not seem to care about the repercussions…believe I have had fights with the council and the Ombudsman about., this
Deo, I live in the US and I'm so very sorry this has happened to you! I use to work as a social worker for the State I live in, but am retired now due to my ataxia. It's truly awful that any human being has to go through this, especially a disabled one! I sincerely wish you the best, and hope all will eventually be taken care of for you! ;o)
Thank you Rose. People believe things have gone better with new legislations to protect disabled people. You only know how bad it is when you face it yourself. The law is there but you can't have any help. In my case, I did not get any legal help. I had to fight my case in Court myself and my speech made it worse. I could see how the Judge wanted to deal with the problem as quickly as possible because he could not bear with my slurred speech. His time was precious so his best solution was to dismiss my defense and accept the eviction. In my appeal I decided to type my defense and he did not bother to read it. I tried to find a Solicitor to file an Appellant's Notice against his judgement without success. I tried filling it as best I could. I finally got a reply that the case has been transferred to a Higher Judge. Anyway the damage is done I am now homeless and living in my misery. I have been trying to find a lawyer to sue the landlord for evicting someone because of his disability without success. Everyone talks about funds and unavailability of legal aid. Does it mean that we have to tolerate and live in injustice because of that. Who says that we are an evolved society and that we are protected from unfair treatment and discrimination? Maybe I should not be writing all this on an ataxia blog but I am afraid it is part of my Living with Ataxia. Sorry.
Deo, please continue to write on this blog, as what has happened to you must be told! You don't have to be sorry for how you feel, or what has happened to you! I, for one, wish our legal system was held more accountable for it's actions! Yes, there continues to be injustice and discrimination! People need to be more sensitive to the needs of others! I slur my speech and am hard to understand so I know how you feel! What has happened to you could (and has) happened to others! I'm certain in your situation it's difficult to be positive, but don't ever give up! Fight for your rights! You'll not only be helping yourself, but others as well! My prayers, support and understanding are with you from across the pond! Please keep us posted as to what happens! ;o)