Anyone else on DLA with CONSTANTLY changing condition ?

Dla2011

Hi
Sorry if long post, wanted to give as clear a picture of situation as I could.

I wonder if anyone is in a similar situation to me, and how they deal with the thought that DLA might be taken away.

I suffer from a Genetic Condition that causes severe pain and "gout like" symptoms in any area of the body.

This means that some times I can walk, other times I cant. Some times I can move my shoulders, other times I cant. Some times Iam almost "normal" (apart from pain) othertimes I am totally bed bound.

No day is the same, or even hour. I can go from being able to move a foot/leg/finger/arm and 2 hours later not being able to move it at all.

Anyhow, onto the reason for this post. I was awarded DLA back in the early 90s, then came off it because I went through a good patch. Then back on it early 2000's. Where I was awarded "for life" as it is a Genetic condition that has no cure or treatment other than pain relief.

When my legs are bad I am stuck in bed, so as soon as my legs are a bit better I will try and get outside and walk. My thoughts are that now there seems to be such a crack down on DLA claims and CCTV and such I am always worried that I am going to get in trouble for walking. Even though when I filled out all the forms I attached a full letter stating that the condition is constantly changing and moves around the body.

So, anyone else worry about CCTV, DLA Crackdown ? or anyone else have such a constantly changeable condition ? I cant inform the DLA of my condition changing as it would mean ringing literally 24 hours a day !!

Hope you can help

DLA 2011

sunnyone

Dla2011 wrote: »

Hi
Sorry if long post, wanted to give as clear a picture of situation as I could.

I wonder if anyone is in a similar situation to me, and how they deal with the thought that DLA might be taken away.

I suffer from a Genetic Condition that causes severe pain and "gout like" symptoms in any area of the body.

This means that some times I can walk, other times I cant. Some times I can move my shoulders, other times I cant. Some times Iam almost "normal" (apart from pain) othertimes I am totally bed bound.

No day is the same, or even hour. I can go from being able to move a foot/leg/finger/arm and 2 hours later not being able to move it at all.

Anyhow, onto the reason for this post. I was awarded DLA back in the early 90s, then came off it because I went through a good patch. Then back on it early 2000's. Where I was awarded "for life" as it is a Genetic condition that has no cure or treatment other than pain relief.

When my legs are bad I am stuck in bed, so as soon as my legs are a bit better I will try and get outside and walk. My thoughts are that now there seems to be such a crack down on DLA claims and CCTV and such I am always worried that I am going to get in trouble for walking. Even though when I filled out all the forms I attached a full letter stating that the condition is constantly changing and moves around the body.

So, anyone else worry about CCTV, DLA Crackdown ? or anyone else have such a constantly changeable condition ? I cant inform the DLA of my condition changing as it would mean ringing literally 24 hours a day !!

Hope you can help

DLA 2011

As long as you have told the truth there isnt a problem but if you have omitted that you have times of good health and said full details of how long that these have lasted in the past they cant accuse you of fraud can they.

GlasweJen

I'm with sunnyone, if you tell them exactly what you posted there (i.e. that sometimes you can't move and others you're fine) then you'll be grand. If you tell them you can't walk under any circumstances and then get videoed referring a football match (yes that's happened) then you'll get done for fraud.

Horacity

I do not think you need worry. With a genetic condition such as yours, you should have doctors and specialists to confirm its variable nature, if any ignorant busybody shopped you for walking. I have a variable condition myself, a chronic systemic inflammatory condition which has been wreaking havoc on my body for the last six years. I was awarded DLA, even though so far the medical professionals have not diagnosed me, as my blood tests are normal [although you could roast chestnuts over my hot red swollen joints.] I gave a full and detailed account of my difficulties, saying that I can start out walking like a normal person, but at any time I can be overwhelmed by exhaustion, breathlessness, pain, loss of balance etc. This meant I was assessed as being 'unable to walk', and I am sure that must apply to you too. If anyone were so crass as to comment on my being 'able to walk while claiming DLA', I would point out that I am only seen in public on the days I am capable of leaving home.
Please try not to worry, as stress will only make you feel worse.
Horacity.
P.S. This is my first post, so I hope it works!

sunnyone

Horacity wrote: »

I do not think you need worry. With a genetic condition such as yours, you should have doctors and specialists to confirm its variable nature, if any ignorant busybody shopped you for walking. I have a variable condition myself, a chronic systemic inflammatory condition which has been wreaking havoc on my body for the last six years. I was awarded DLA, even though so far the medical professionals have not diagnosed me, as my blood tests are normal [although you could roast chestnuts over my hot red swollen joints.] I gave a full and detailed account of my difficulties, saying that I can start out walking like a normal person, but at any time I can be overwhelmed by exhaustion, breathlessness, pain, loss of balance etc. This meant I was assessed as being 'unable to walk', and I am sure that must apply to you too. If anyone were so crass as to comment on my being 'able to walk while claiming DLA', I would point out that I am only seen in public on the days I am capable of leaving home.
Please try not to worry, as stress will only make you feel worse.
Horacity.
P.S. This is my first post, so I hope it works!

genetic conditions dont affect everyone in the same way and they are not carte blanch for a DLA award, you are totally wrong in your assurances that you are giving the OP on that score (and I have several genetic conditions)

Have you had investigations for sero negative conditions?

parsons

Dla2011 wrote: »

Hi
Sorry if long post, wanted to give as clear a picture of situation as I could.

I wonder if anyone is in a similar situation to me, and how they deal with the thought that DLA might be taken away.

I suffer from a Genetic Condition that causes severe pain and "gout like" symptoms in any area of the body.

This means that some times I can walk, other times I cant. Some times I can move my shoulders, other times I cant. Some times Iam almost "normal" (apart from pain) othertimes I am totally bed bound.

No day is the same, or even hour. I can go from being able to move a foot/leg/finger/arm and 2 hours later not being able to move it at all.

Anyhow, onto the reason for this post. I was awarded DLA back in the early 90s, then came off it because I went through a good patch. Then back on it early 2000's. Where I was awarded "for life" as it is a Genetic condition that has no cure or treatment other than pain relief.

When my legs are bad I am stuck in bed, so as soon as my legs are a bit better I will try and get outside and walk. My thoughts are that now there seems to be such a crack down on DLA claims and CCTV and such I am always worried that I am going to get in trouble for walking. Even though when I filled out all the forms I attached a full letter stating that the condition is constantly changing and moves around the body.

So, anyone else worry about CCTV, DLA Crackdown ? or anyone else have such a constantly changeable condition ? I cant inform the DLA of my condition changing as it would mean ringing literally 24 hours a day !!

Hope you can help

DLA 2011

I too have variable conditions ranging from looking OK for my age to being (as my wife would put it) at deaths door and being bedbound with pain for weeks on end.

It is because of what you are talking about that I refuse to entertain this or any other sickness or disability benefit. Apart from feeling that it is similar to begging and asking for a handout, I would hate to feel that others may be watching me.

Even though there would be no truth in the matter of exagerating any of the illnesses, claiming this or any other related benefit would make me feel vulnerable to public criticism and lead to me feeling guilty for absolutely no reason at all.

Hence, I keep well away from anything to do with the DWP!

Dla2011

Thank you all for the replies.
I did inform the DLA how changeable my illness is when I applied. Have always been honest when filling in forms etc. But it seems that under these new schemes the Govnt have announced, and the new interviews with ATOS etc that people who are not "showing ill" all the time are likely to be easily stopped from claiming.
Horacity, thanks for your reply. It sounds like you have a similar situation as me. Have you ever had people ask how come you can get DLA if your able to walk sometimes ?

Thanks again for all replies.

DLA2011

Horacity

To Sunnyone:-

Sorry if I did not express myself clearly. I was not referring to every and any genetic condition! I meant that the O.P. must have consulted doctors and specialists over the years who could give their opinions on the effect of his particular condition on his ability to walk and care for himself. I am aware that no specific illness [unless terminal] gives carte blanche for a DLA award, which is why I stressed the importance of giving a full detailed description of how one's health problems affect day-to-day living. As I said, it worked for me.

Over the years I have been to two different rheumatologists who thought on examination that I had an inflammatory condition, but were quick to change their tune when blood tests were negative. The second one mentioned erosions on my hand x-rays, but later [after blood tests] said there were no erosions. I know from my online research that it is possible to have a normal ESR despite inflammatory arthritis, and I have just asked to be referred to a rheumatologist in a different hospital, who was recommended by two of my friends. My own opinion is that I have psoriatic arthritis, and I have taken pictures of my red sausage fingers and toes and nasty pitted nails, just in case everything decides to look normal when I have my appointment. Hoping it will be 3rd time lucky---I'd cross my fingers if they weren't so stiff.

dmg24

parsons wrote: »

I too have variable conditions ranging from looking OK for my age to being (as my wife would put it) at deaths door and being bedbound with pain for weeks on end.

It is because of what you are talking about that I refuse to entertain this or any other sickness or disability benefit. Apart from feeling that it is similar to begging and asking for a handout, I would hate to feel that others may be watching me.

Even though there would be no truth in the matter of exagerating any of the illnesses, claiming this or any other related benefit would make me feel vulnerable to public criticism and lead to me feeling guilty for absolutely no reason at all.

Hence, I keep well away from anything to do with the DWP!

You should speak to our old friend andyandflo, they felt the same on this subject!

hilstep2000

I am the same. I have MS, which is variable. I got DLA for six years, and then it was renewed in January for indefinate. I am worried that it will be taken away from me now. I had to fight to get into the support group for ESA. I was medically retired from my job two years ago. Who is going to employ a 52 year old with MS? Let's hope we can get the Government to change their minds.

Horacity

To DLA 2011:-

No, I have never been challenged directly, but only a few people know I get DLA. I On my better days I sometimes feel a twinge of guilt as I stride past someone on crutches or in a wheelchair---but on my worse days they overtake me. I think a lot of people with variable or 'hidden' illnesses must feel a bit defensive.

You mention the new scheme to replace DLA with PIP, and the interview it will involve. I know there is a rumour that this button-pressing interview will be the main element in the assessment, but I think it is just a rumour. I recently responded to the DLA reform consultation document, which I read before I answered the questions, and there was a lot of emphasis on how the new form could be made more user-friendly, and the importance of getting as much information as possible from the claimant, his doctors, and other people who could support the claim from personal knowledge. My favourite line from the document was "Disabled people are experts in their own lives and information they provide will continue to be vital". So although there may be a face-to-face interview, it will be only a part of the evidence to be considered.