This is what I just emailed to consultant in hospital for help.
Hi Dr ......
Ive always been on income support over last 5 years and got disability premium with that. I'm being moved from income support to the new ESA EMPLOYMENT SUPPORT ALLOWANCE.
I don't know how you can help, but I really need you to help me straight away, I still haven't had any DWP payments it's been 9 weeks now. I am about to lose my house and have the housing advise guy "John Powell" who is almost forcing me to take a bungalow with housing association which in theory a HA property would be great, as rent would be covered by the council, but physically I can barely stay awake for a few hours, my scar from the Microvascular decompression hasn't healed, it's infected but I can't even afford to get to gp never mind try and get to hospital. I have been told that if I don't accept this bungalow I won't get any further support from council it will effect how much housing benefit they will pay, they know that ive had no income support or disability premium for the last 9 weeks that's £370 a fortnight that ive not had. They have said once I have accepted the property they will try and get help with cost of moving, but it's not a definate. The housing association have said it's an older property and will need work doing to it, it won't have carpets, curtains or cooker or anything, and I'm sure you can imagine I don't have the money to do any of it, the stress of having no money is really effecting my narcolepsy and Cataplexy to such a bad degree that I'm falling asleep even whilst people are in my house helping to fill out forms or whilst they are contacting the benefit agency to try and get my money reinstated. The latest is that a decision was made on the 18th September that I will not be getting any type of payment until I have had a medical assessment with DWP Dr, and that there is quite a backlog and on average assessments are taking around 16 weeks from date of referral, so for me that is from 18th September. How the hell I'm ment to be able to pack up this house and move I don't know. Apparently I will have to move within a week, and will have to just put up with whatever state it's in and live without carpets and curtains cooker for now.
I have asked to speak to a decision maker at DWP and have been told I can't, and that I have no right to ask for a reconsideration, or appeal against this. And that there is absolutely nothing I can do to get this changed, or to have assessment as soon as possible.
All of this is because I missed a medical assessment on April 21st that I never received an appointment for, I'm not sure if I actually cancelled an appt with you around that date because of chronic cough and my mum had just been diagnosed with cancer, not sure if I had forgot the right date, but I do know that I had rang the DWP the previous week to see if any appointments had been made for a medical just in case I had missed any letters coming in, because of being ill with that chronic cough that I'd had since December. I spent 45 minutes on the phone whilst being put through to various departments and on hold whilst DWP checked with the company that send out appointments. I was told that no appointments had been made and that I would receive a date through post when one is made. I asked at that time to also receive a telephone call to make sure that I was notified whenever it got sorted out. 6 days later I received a letter from DWP saying that I had missed my appointment for medical assessment the previous day, I rang straight away to tell them that I had rang less than a week ago to double check if any appointments had been made and was told no. Then in August I was told that my benefits had been stopped because I didn't attend my medical, I asked again for it to be reconsidered, and that I was about to go into hospital for brain surgery. Once again I was told no, and they said they had sent me a letter which I did not receive again, so they resent it, that letter arrived when I was in hospital, saying that I now have to go for a tribunal to get my money reinstated, and that I only had 28 days from the date they originally sent a letter to respond to go to tribunal. Well the original date on the letter was the 7th August, and I had my operation on 7th sept, the letter had arrived sometime between 7-11th sept. when I got out from hospital I opened the letter, I had john Powell help write the appeal to send off to say I wanted tribunal, the court or whatever the name of place of tribunal have now said that because I didn't reply within the 28days that they had written to the DWP and that they now have 28days to respond to object to me even getting a tribunal hearing, because I had not responded in time. At this point they court are still waiting for DWP to respond. The tribunal place have said it is Upto me to supply any further evidence, from my drs and consultants to confirm that I have got problems with memory and also my conditions and and the affects of my conditions and also the affects of my medication. I have asked my GP and he has said it practice policy not to write any letters for patients, unless they are asked to do so by the professional body, DWP or the tribunal courts, then they will write a report once they have received the fee from them. I have asked the tribunal court to write and get a report or letter from my Gp and they have refused to do so, saying they will make a decision based on information that they have from DWP and any information I want to send, well I can't pay my GP surgery to support me when I have no money.
You can probably tell that even whilst writing this ive lost all concentration and have lost my train of thought several times, ive actually fallen asleep whilst writing this cause of crying and triggering narcolepsy and dropped phone several times through cataplexy, because I don't know where to turn, I am having to beg family for a few pound every couple of days just to have electric on as I have a pre payment meter at this house. And they are questioning me now as to if I am telling the truth, as they can't believe nor can I for that matter that I have had no income support/ESA payments through by now. I have everyone telling me that it's not possible for them to leave me without money for this long, never mind the possibility that I may have to wait Upto another 13-16 weeks for any medical assessment before I get any money through. My family can not help me any more as they are helping my mum who has lung cancer and has had half a lung removed and is now going through chemotherapy and her sickness money has now been stopped from Tesco. So she is waiting to receive benefit payments herself. But the fact that everyone seems to think that I'm now telling lies is absolutely destroying me. I'm living with no gas for half the week because of not having money to put into prepayment card. And going through the day with everything electric turned off until my son gets home from school, just to try and make electric last, ive had to walk to supermarkets at 8-9at night just to try and buy food reduced to couple of pence to make sure my son has something to eat, even then he is going to school at 7.20am and most of the time without breakfast, and not able to get anything until lunchtime at 1pm when money has been added to his fob for free school meals. And that only had £2.05 which buys a baguette and a cheap drink. So I know that he is starving all through the morning unable to buy anything at break to keep him going. Then when he gets home he's having to wait until late before I can give him anything to eat, and most of the time I don't have gas so it has to be something for the oven or microwave.
I can't get through to anyone in DWP that makes these decisions, I'm certain it's not even drs making them, they have had sicknote backdated to August, saying narcolepsy cataplexy and brain surgery for HFS and TN and still won't reinstate my money. I have tried to get tribunal moved forward, and been told no, ive tried to get medical assessment moved forward and been told no, ive asked to speak to someone from tribunal and from medical to try and get a Dr to override withholding my money and been told I can't speak to anyone. The guy from the council has tried speaking to DWP and has been told I'm not getting anything until ive had assessment, someone from MIND who council contacted to help me with my forms and give me support have also tried and been told no.
You have to be my last hope that being a consultant you hold enough authority to get whoever made this decision can be contacted and decision changed. Or if you have colleagues that work for DWP or as one of the medical assessors to look at my case. I know that the assessment place in cardiff has a dedicated line for drs to ring for advice and I presume to speak about particular cases, as I rang this number the week before I was supposed to have my medical that I never received an appointment for, I just found it on google when I was trying to find an alternative number to the 0845 telephone numbers which I knew would cost me a fortune to call from mobile. And when they answered they said it was a dedicated line for GPs and consultants I will try and find it again and send it to you. I know this isn't part of being a Dr, but I can't cope any more, to lose my main income for so long is beyond what I can explain. And to now have most of my family and friends questioning my honesty because according to them this can not be possible to happen , is even worse. Will u please help me. I will look for the number for drs now. I'm sorry this is all over the place.
If you can get a record of my appointments over last 7 years, you can see that until my last operation with Mr Simpson I attended almost every single one, and there was a lot of them, this whole time I've been telling you and Gp and Mr Martin that I was certain I still had a CSF leak, and no one would listen, then once I got this. Cough in December/January this year, it stopped coming out of my nose and I couldn't get rid of the cough regardless of how many lots of medication I had, and asthma pumps made no difference to me, I kept saying I think Csf is leaking down back of throat, and even the night before I had surgery on 6th sept, the nurses and drs anethnatists that came to the ward said they were unsure if I'd would be allowed to go into surgery with the horrific cough. And again I told them that it didn't feel like my throat was constricting it felt like a blob a gloop of ball or slime at back of throat.
The operation hasn't worked and I'm in a right mess, but from the time I came out of surgery to now I have not had this cough. Mr Martin did say he didn't repair any leak, but after 9/10 months of constant coughing making me really very ill, and my memory really much much worse than it's ever been, I have not coughed since or had the feeling of gloop in my throat. So whatever happened in surgery stopped that cough. I'm fairly sure it's what has gradually effected my ability to plan things and function normally in the past 3 years, I'm now getting clear fluid once again coming from nose, not continual but several times a day, it's just running and once tissue dries there is no marks just like it was before. But at this point I can't even consider telling Gp or having another operation because I need to start receiving money back into this household. Ive got someone from mind coming during the week again, but so far they haven't been able to get anywhere in relation to DWP.
Hi Dr ......
Ive always been on income support over last 5 years and got disability premium with that. I'm being moved from income support to the new ESA EMPLOYMENT SUPPORT ALLOWANCE.
I don't know how you can help, but I really need you to help me straight away, I still haven't had any DWP payments it's been 9 weeks now. I am about to lose my house and have the housing advise guy "John Powell" who is almost forcing me to take a bungalow with housing association which in theory a HA property would be great, as rent would be covered by the council, but physically I can barely stay awake for a few hours, my scar from the Microvascular decompression hasn't healed, it's infected but I can't even afford to get to gp never mind try and get to hospital. I have been told that if I don't accept this bungalow I won't get any further support from council it will effect how much housing benefit they will pay, they know that ive had no income support or disability premium for the last 9 weeks that's £370 a fortnight that ive not had. They have said once I have accepted the property they will try and get help with cost of moving, but it's not a definate. The housing association have said it's an older property and will need work doing to it, it won't have carpets, curtains or cooker or anything, and I'm sure you can imagine I don't have the money to do any of it, the stress of having no money is really effecting my narcolepsy and Cataplexy to such a bad degree that I'm falling asleep even whilst people are in my house helping to fill out forms or whilst they are contacting the benefit agency to try and get my money reinstated. The latest is that a decision was made on the 18th September that I will not be getting any type of payment until I have had a medical assessment with DWP Dr, and that there is quite a backlog and on average assessments are taking around 16 weeks from date of referral, so for me that is from 18th September. How the hell I'm ment to be able to pack up this house and move I don't know. Apparently I will have to move within a week, and will have to just put up with whatever state it's in and live without carpets and curtains cooker for now.
I have asked to speak to a decision maker at DWP and have been told I can't, and that I have no right to ask for a reconsideration, or appeal against this. And that there is absolutely nothing I can do to get this changed, or to have assessment as soon as possible.
All of this is because I missed a medical assessment on April 21st that I never received an appointment for, I'm not sure if I actually cancelled an appt with you around that date because of chronic cough and my mum had just been diagnosed with cancer, not sure if I had forgot the right date, but I do know that I had rang the DWP the previous week to see if any appointments had been made for a medical just in case I had missed any letters coming in, because of being ill with that chronic cough that I'd had since December. I spent 45 minutes on the phone whilst being put through to various departments and on hold whilst DWP checked with the company that send out appointments. I was told that no appointments had been made and that I would receive a date through post when one is made. I asked at that time to also receive a telephone call to make sure that I was notified whenever it got sorted out. 6 days later I received a letter from DWP saying that I had missed my appointment for medical assessment the previous day, I rang straight away to tell them that I had rang less than a week ago to double check if any appointments had been made and was told no. Then in August I was told that my benefits had been stopped because I didn't attend my medical, I asked again for it to be reconsidered, and that I was about to go into hospital for brain surgery. Once again I was told no, and they said they had sent me a letter which I did not receive again, so they resent it, that letter arrived when I was in hospital, saying that I now have to go for a tribunal to get my money reinstated, and that I only had 28 days from the date they originally sent a letter to respond to go to tribunal. Well the original date on the letter was the 7th August, and I had my operation on 7th sept, the letter had arrived sometime between 7-11th sept. when I got out from hospital I opened the letter, I had john Powell help write the appeal to send off to say I wanted tribunal, the court or whatever the name of place of tribunal have now said that because I didn't reply within the 28days that they had written to the DWP and that they now have 28days to respond to object to me even getting a tribunal hearing, because I had not responded in time. At this point they court are still waiting for DWP to respond. The tribunal place have said it is Upto me to supply any further evidence, from my drs and consultants to confirm that I have got problems with memory and also my conditions and and the affects of my conditions and also the affects of my medication. I have asked my GP and he has said it practice policy not to write any letters for patients, unless they are asked to do so by the professional body, DWP or the tribunal courts, then they will write a report once they have received the fee from them. I have asked the tribunal court to write and get a report or letter from my Gp and they have refused to do so, saying they will make a decision based on information that they have from DWP and any information I want to send, well I can't pay my GP surgery to support me when I have no money.
You can probably tell that even whilst writing this ive lost all concentration and have lost my train of thought several times, ive actually fallen asleep whilst writing this cause of crying and triggering narcolepsy and dropped phone several times through cataplexy, because I don't know where to turn, I am having to beg family for a few pound every couple of days just to have electric on as I have a pre payment meter at this house. And they are questioning me now as to if I am telling the truth, as they can't believe nor can I for that matter that I have had no income support/ESA payments through by now. I have everyone telling me that it's not possible for them to leave me without money for this long, never mind the possibility that I may have to wait Upto another 13-16 weeks for any medical assessment before I get any money through. My family can not help me any more as they are helping my mum who has lung cancer and has had half a lung removed and is now going through chemotherapy and her sickness money has now been stopped from Tesco. So she is waiting to receive benefit payments herself. But the fact that everyone seems to think that I'm now telling lies is absolutely destroying me. I'm living with no gas for half the week because of not having money to put into prepayment card. And going through the day with everything electric turned off until my son gets home from school, just to try and make electric last, ive had to walk to supermarkets at 8-9at night just to try and buy food reduced to couple of pence to make sure my son has something to eat, even then he is going to school at 7.20am and most of the time without breakfast, and not able to get anything until lunchtime at 1pm when money has been added to his fob for free school meals. And that only had £2.05 which buys a baguette and a cheap drink. So I know that he is starving all through the morning unable to buy anything at break to keep him going. Then when he gets home he's having to wait until late before I can give him anything to eat, and most of the time I don't have gas so it has to be something for the oven or microwave.
I can't get through to anyone in DWP that makes these decisions, I'm certain it's not even drs making them, they have had sicknote backdated to August, saying narcolepsy cataplexy and brain surgery for HFS and TN and still won't reinstate my money. I have tried to get tribunal moved forward, and been told no, ive tried to get medical assessment moved forward and been told no, ive asked to speak to someone from tribunal and from medical to try and get a Dr to override withholding my money and been told I can't speak to anyone. The guy from the council has tried speaking to DWP and has been told I'm not getting anything until ive had assessment, someone from MIND who council contacted to help me with my forms and give me support have also tried and been told no.
You have to be my last hope that being a consultant you hold enough authority to get whoever made this decision can be contacted and decision changed. Or if you have colleagues that work for DWP or as one of the medical assessors to look at my case. I know that the assessment place in cardiff has a dedicated line for drs to ring for advice and I presume to speak about particular cases, as I rang this number the week before I was supposed to have my medical that I never received an appointment for, I just found it on google when I was trying to find an alternative number to the 0845 telephone numbers which I knew would cost me a fortune to call from mobile. And when they answered they said it was a dedicated line for GPs and consultants I will try and find it again and send it to you. I know this isn't part of being a Dr, but I can't cope any more, to lose my main income for so long is beyond what I can explain. And to now have most of my family and friends questioning my honesty because according to them this can not be possible to happen , is even worse. Will u please help me. I will look for the number for drs now. I'm sorry this is all over the place.
If you can get a record of my appointments over last 7 years, you can see that until my last operation with Mr Simpson I attended almost every single one, and there was a lot of them, this whole time I've been telling you and Gp and Mr Martin that I was certain I still had a CSF leak, and no one would listen, then once I got this. Cough in December/January this year, it stopped coming out of my nose and I couldn't get rid of the cough regardless of how many lots of medication I had, and asthma pumps made no difference to me, I kept saying I think Csf is leaking down back of throat, and even the night before I had surgery on 6th sept, the nurses and drs anethnatists that came to the ward said they were unsure if I'd would be allowed to go into surgery with the horrific cough. And again I told them that it didn't feel like my throat was constricting it felt like a blob a gloop of ball or slime at back of throat.
The operation hasn't worked and I'm in a right mess, but from the time I came out of surgery to now I have not had this cough. Mr Martin did say he didn't repair any leak, but after 9/10 months of constant coughing making me really very ill, and my memory really much much worse than it's ever been, I have not coughed since or had the feeling of gloop in my throat. So whatever happened in surgery stopped that cough. I'm fairly sure it's what has gradually effected my ability to plan things and function normally in the past 3 years, I'm now getting clear fluid once again coming from nose, not continual but several times a day, it's just running and once tissue dries there is no marks just like it was before. But at this point I can't even consider telling Gp or having another operation because I need to start receiving money back into this household. Ive got someone from mind coming during the week again, but so far they haven't been able to get anywhere in relation to DWP.
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