I have not been on here for some while. My husband had a transplant August, 2011 he came out of hospital December 2011. He is very slowly improving, he goes to clinic every 3 weeks. creatine still not stable but the consultant not worrying too much now because goes up one week and then another it goes down, The kidney is about 76 years, so they think this could be the reason.
My husband is still very tired, needs a sleep in the afternoon! Gets out of breath alot, he has had a tummy bug which has knocked him for six.
We have had all our benefits except ESA stopped. But he feels he could not do a full time job only maybe part time work, but how can we afford to live on £105. p.w.? We having been using our savings to top up our income, but now they are drying up.
The consultant as given us letters to say he is not capable of full time work and also his GP is backing us, but the DHS say there is nothing else for us.
Hubby worked in the steal industry all his life only ever had 2 jobs, worked up to the day he had his PD tube fitted but could not carry on working due to heavy lifting and being very dirty work. He would have to be re trained for a job, be able to go to clinic every 3 weeks, so who will employ him? We were told if you get a job 'tomorrow' your benefits will stop 'tomorrow' but by next week you dont feel well enough to work and have to stop working, you are back to square one trying to claim.......so what is the answer?
Sorry, its just a rant, but we dont know which way to turn.
ADVICE REQUIRED PLEASE
Moderator: administrator
Re: ADVICE REQUIRED PLEASE
I'm sorry to read that your husband is still unwell. I'm afraid I haven't any suggestions re benefits. You say the kidney is 78, but I'm assuming you and your husband are younger. Could you go out to work, either full or part time and would that affect his ESA? There seems to be a loophole that people with long term chronic illness fall through in the benefit system. You could ask at a Citizens Advice centre for help to ensure there is nothing else he could claim. I hope he feels better soon.
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- Location: London
Re: ADVICE REQUIRED PLEASE
I'm sorry to hear of this. The way ill and disabled people are being treated at the moment is shocking.
I can only repeat what the previous poster suggested, try to get expert help from Citizens Advice or similar. Or is there a renal social worker who can help with benefits?
I can only repeat what the previous poster suggested, try to get expert help from Citizens Advice or similar. Or is there a renal social worker who can help with benefits?
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Re: ADVICE REQUIRED PLEASE
Thank you for your replies. We have taken advice and they say there is nothing else! I dont work I was made redundant, then sods law Mum had heart attack she is 84 and Dad is 89. I have my hands full with them, my husband and I look after our grandchildren one day a week.
You can only work 16 hours = £95 before it affects your benefits.
His GP was saying today he doesnt seem well enough to hold down a job, she will fill any forms in to help with an appeal.
Rang DLA they said can you walk 50 yards...Yes. Can you wash/dress/prepare a meal without help...yes. Are you mentaly stable....yes.......Sorry you cant appeal!!!
Nightmare
You can only work 16 hours = £95 before it affects your benefits.
His GP was saying today he doesnt seem well enough to hold down a job, she will fill any forms in to help with an appeal.
Rang DLA they said can you walk 50 yards...Yes. Can you wash/dress/prepare a meal without help...yes. Are you mentaly stable....yes.......Sorry you cant appeal!!!
Nightmare
Re: ADVICE REQUIRED PLEASE
He was a thief?!webster wrote: Hubby worked in the steal industry all his life only ever had 2 jobs, worked up to the day he had his PD tube fitted but could not carry on working due to heavy lifting and being very dirty work.
There's been a lot of stuff in the news recently about people encountering problems with the assessments for DLA etc - the company that it is outsourced to, have been proven to do sloppy work when interviewing people. Lots of people who suffer with ME etc have been told they can work. Lots of cases have been overturned if you are willing to pursue them. First stop I would say is Citizen's Advice Bureau, but some places have specialist disablement associations that give free impartial advice about benefit entitlements.
Just have a look on google for something local. Go get 'em!
I keep an online journal. I was going to call it 'Diary of Courage' but I settled on the Devil Kidney.
http://devilkidney.tumblr.com/
http://devilkidney.tumblr.com/
Re: ADVICE REQUIRED PLEASE
Webster.
You need to read the DLA forms very carefully.
They ask specifically how you are on your WORST DAY. So if he can't get out if bed put that. If he struggles walking to the car 5yards put that. Out of breath walking up or down stairs?
Cooking? Does he have enough energy to cook three kidney healthy meals a day?
Remember the words "Chronic Kidney Disease" in most answers and also i am sure he suffers Anemia so use that.
Most importantly....so tired he needs reminding/prompting to take important meds, the amount of times my partner has reminded me is shocking......2-3 times a week at least!
It a minefield, you need to find someone who has filled the DLA out before. I filled mine out with a pro and cried because it showed how ill I really was.
Good luck with it all and I hope you get what you are owed
You need to read the DLA forms very carefully.
They ask specifically how you are on your WORST DAY. So if he can't get out if bed put that. If he struggles walking to the car 5yards put that. Out of breath walking up or down stairs?
Cooking? Does he have enough energy to cook three kidney healthy meals a day?
Remember the words "Chronic Kidney Disease" in most answers and also i am sure he suffers Anemia so use that.
Most importantly....so tired he needs reminding/prompting to take important meds, the amount of times my partner has reminded me is shocking......2-3 times a week at least!
It a minefield, you need to find someone who has filled the DLA out before. I filled mine out with a pro and cried because it showed how ill I really was.
Good luck with it all and I hope you get what you are owed
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.
My living donor and his family are doing all well.
==
Alports.
My living donor and his family are doing all well.
==
Alports.
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Re: ADVICE REQUIRED PLEASE
There;s very little point ringing the DLA..
You CAN appeal, and you may need to go to tribunal, at the worst case. DO record the Mental STRESS inflicted on your husband and family, as well as the physical.
Mental health issues DO earn you points (I hate to write this like a feckin scrounger, but its the only way to fill in the forms correctly)
I've got a list of resources .. If you read how LITTLE DWP uses to assess kidney failure (a couple of paragraphs in a 90 page book of conditions) you will understand why so many get turned down.. Incidentally it only mentions HOW treatment works. not its side effects..
Strongly recommend MIND publications the big book of benefits as well as Benefits and Work website.. And DO get local SS involve in your form filling and appeal.
As the Governments new Welfare Reform Bill has now been passed the document below may become out of date. However for more details on the bill see the link:
http://www.benefitsandwork.co.uk/news/l ... March+2012
These notes and links are for guidance only. Always seek proper advice when filling in claims or contacting departments:)J
DLA and Benifits UK only.. Also see Doc Excerpt From the Disibility Handbook.I've compiled some useful links specifit do DLA and benifts for those in the UK. The Goverment is has proposed changes to benifts replacing DLA with PIP's Personal Independence Payments.. Time will tell on how much these changes affects us.
Stating mental issues such as stress, or loss of work, partners stress etc etc. may earn you points for DLA claims. Its hard to go through those 'worst days' if your feeling good but if they're gonna come round again THATs when you need that extra bit of help. or local council social workers are there to help, and sometimes Citizens Advice Bureau can be valuable:) Do NOT rely on one source.
As with all correspondence. Keep a copy. Its a good idea to draft on a 'spare copy' which you then use as a template for the final form to submit to DWP. You then have reference for when you go to tribunal. Or if you have to renew your claim.
While some manage to fill in the DLA, and other forms alone, and recieve successful applications, it does not do any harm to seek advice or read the resources & tips provided here.
Notes and lists compiled by JW
MIND the Big Book of Mental Health and Benefits.
Invaluable. Benefits and forms explained with letter & form examples.
Annual publication and worth the costI ts £16 quid well spent.
http://www.mind.org.uk/shop/books/work_ ... nefits/461
Private organisation/support group that provides VERY useful info. Subscription for forum and document downloads (which can be kept) Worth the subscription.. In my opinion.
http://www.benefitsandwork.co.uk/
Age UK formerly Age Concern
http://www.ageuk.org.uk/money-matters/c ... -benefits/
CAB
http://www.citizensadvice.org.uk/index/getadvice.htm
Carers UK
http://www.carersuk.org/help-and-advice/help-with-money
The Disability Handbook Ref used by professionals to make decisions. Provides basic facts of kidney failure only.
http://www.newtons-online.net/documents ... ndbook.pdf
Gov info on DLA and benefits
http://www.direct.gov.uk/en/DisabledPeo ... /index.htm
Gov link to the Disability Handbook
This has now been replace by this not a lot to go on: http://www.dwp.gov.uk/publications/spec ... disorders/
Direct PaymentsAs opposed to Main Government benifts such as Disability Living Allowance, Income Support and Attendence Allowance which come from the Government Department of Work and Pensions, Direct Payments come from your Local Authority. (Local Council)Direct Payments can be used for a number of things as agreed with social services, such as employing a PA/cleaner, or to pay for an agency worker.You should contact your local Social Services to be assesed for Direct Payments.
http://www.direct.gov.uk/en/MoneyTaxAnd ... G_10018721
You CAN appeal, and you may need to go to tribunal, at the worst case. DO record the Mental STRESS inflicted on your husband and family, as well as the physical.
Mental health issues DO earn you points (I hate to write this like a feckin scrounger, but its the only way to fill in the forms correctly)
I've got a list of resources .. If you read how LITTLE DWP uses to assess kidney failure (a couple of paragraphs in a 90 page book of conditions) you will understand why so many get turned down.. Incidentally it only mentions HOW treatment works. not its side effects..
Strongly recommend MIND publications the big book of benefits as well as Benefits and Work website.. And DO get local SS involve in your form filling and appeal.
As the Governments new Welfare Reform Bill has now been passed the document below may become out of date. However for more details on the bill see the link:
http://www.benefitsandwork.co.uk/news/l ... March+2012
These notes and links are for guidance only. Always seek proper advice when filling in claims or contacting departments:)J
DLA and Benifits UK only.. Also see Doc Excerpt From the Disibility Handbook.I've compiled some useful links specifit do DLA and benifts for those in the UK. The Goverment is has proposed changes to benifts replacing DLA with PIP's Personal Independence Payments.. Time will tell on how much these changes affects us.
Stating mental issues such as stress, or loss of work, partners stress etc etc. may earn you points for DLA claims. Its hard to go through those 'worst days' if your feeling good but if they're gonna come round again THATs when you need that extra bit of help. or local council social workers are there to help, and sometimes Citizens Advice Bureau can be valuable:) Do NOT rely on one source.
As with all correspondence. Keep a copy. Its a good idea to draft on a 'spare copy' which you then use as a template for the final form to submit to DWP. You then have reference for when you go to tribunal. Or if you have to renew your claim.
While some manage to fill in the DLA, and other forms alone, and recieve successful applications, it does not do any harm to seek advice or read the resources & tips provided here.
Notes and lists compiled by JW
MIND the Big Book of Mental Health and Benefits.
Invaluable. Benefits and forms explained with letter & form examples.
Annual publication and worth the costI ts £16 quid well spent.
http://www.mind.org.uk/shop/books/work_ ... nefits/461
Private organisation/support group that provides VERY useful info. Subscription for forum and document downloads (which can be kept) Worth the subscription.. In my opinion.
http://www.benefitsandwork.co.uk/
Age UK formerly Age Concern
http://www.ageuk.org.uk/money-matters/c ... -benefits/
CAB
http://www.citizensadvice.org.uk/index/getadvice.htm
Carers UK
http://www.carersuk.org/help-and-advice/help-with-money
The Disability Handbook Ref used by professionals to make decisions. Provides basic facts of kidney failure only.
http://www.newtons-online.net/documents ... ndbook.pdf
Gov info on DLA and benefits
http://www.direct.gov.uk/en/DisabledPeo ... /index.htm
Gov link to the Disability Handbook
This has now been replace by this not a lot to go on: http://www.dwp.gov.uk/publications/spec ... disorders/
Direct PaymentsAs opposed to Main Government benifts such as Disability Living Allowance, Income Support and Attendence Allowance which come from the Government Department of Work and Pensions, Direct Payments come from your Local Authority. (Local Council)Direct Payments can be used for a number of things as agreed with social services, such as employing a PA/cleaner, or to pay for an agency worker.You should contact your local Social Services to be assesed for Direct Payments.
http://www.direct.gov.uk/en/MoneyTaxAnd ... G_10018721
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
http://www.flickr.com/cybercast