hidradenitis suppurativa & depression DLA & ESA

[goldclasstammy]

Hi,

 

I have read many posts on this forum but this is now the first time actually posting.

 

For many years I have been living with the dibilitating hidradenitis suppurativa I also suffer from depression.

 

Not a lot of people know about HS and I know from the DWP website this is not in their A-Z handbook and therefore mostly come under a skin infection (which HS is merely not just that).

 

Not even aware I could have applied in 2010 but I had major surgery to remove all the skin and gland from both my under arms and was left with open wounds 16cm long and 8 cm wide on each side oozing continuously requiring multiple daily dressing unable to lift my arms and do things for myself wiithout mjor struggle and more damage for 18 months but I soildiered on with no help from the government and because I dont have a family on my own.

 

I had a small respite then last year around this time I was hit full force with anothr atack of the HS but this time weeping wounds on my groin and inner thigh and top of my buttock. I had 4 months off work (and was subsequently told there was no job there for me anymore as I was on a contract) and spent many days in bed in agony. My doctor (luckily) is new to this condition but we have been going through this journey together trying new meds and treatments and the HS got to a point where it was managable ableit always in pain I like to try and live a normal life as much as possible and will struggle at work where needed as I dont like to be judged by anyone no mater what pain and difficulty i am going through albiet i fail my 1st year uni exams (Mature student)

 

Fast tract to December 2012 yet again the pain becomes unbareable. I am bed ridden for weeks so much so I damage my left side of my back where I have to lay on it so much. My depression gets worse on top of this and I am sruggling to live a normal life. I also start to black out and have dizzy spells (one week I blacked out 12 times), I also start radomly losing control of my bodily functions (GREAT).

 

After advice from as friend I aplied for JSA on 25 Jan 13. By 30th Jan 13 I had a straight not entitled letter from DLA. Some of the things I had written in my application where not even correct such as not being able to cook for myself, mostly being stuck in bed and when not stuck in my house, and my black outs.

 

I gave them a call and they advised I could have a reconsideration or appeal. I thought it was logiacally best to have a reconsideration. I explained my queries to their responses that I had told them on the original form . I was then told it was a 11 week wait for the reconsideration. Fair enough albeit a bit long based on the first review of the case.

 

Since then I have been very up and down. I have managed to get to my doctors only twice via cab and had to miss so many appointments where I have been too ill to attend. My doctor has been to visit me. I have also developed continuos migranes and still get about 5-6 blackouts a week but I also developed seizures and vomiting blood as well as a very bad bladder infection stopping me from peeing. As well as uncontrollable bowl movements. I was admitted to hospital and put on meds for 3 days. They dont think my seizures are epillepsy but due to stress and trauma of everything else going on. I have another hospital appointment on Wednesday this week.

 

I informed the DLA of the changes in my symptoms and my hospital stay as well as new medications I had been put on. I asked at the same time what the status of my reconsideration is to which I was told they have requested more information from my doctor which they received back last week. My doctor is very supportive of my condition and he had to do a letter for my DSA assment for student finance and he confirmed my unability to leave my house and my depression caused by the HS. This kinda of letter for approved by student finance for DSA so I am am not worried about what he has written as the surgery did confirm that he did write the report they requested.

 

This weekend I recieved an ESA ATOS medical questionnaire which my friend is helping me to fill out and she has called DLA this morning for another update and they have now said that they have referred my reconsideration to one of their doctors as they want me to have an examination.

 

Is this normal process on a reconsideration to get a report from a doctor and immediately request their own examination and how will this process happen as I have been reading the forum about the ESA examaniations being full of bull and so now I am panicing.

 

Sorry for such a long post but if anyone could help it would be greatly appreciated.

 

Many thanks

[honeybee13]

Hello and welcome to the forum.

 

I don't know about the DLA part of your query, but other people here will.

 

With ESA, you need to tell them what effect your symptoms are having on your daily life. They aren't too bothered about your diagnosis itself, although it might be worth including some information about your condition.

 

In case it helps, I'll post up a link to Leemack's stikky about filling in an ESA50 for physical problems and another one for mental ones.

 

My best, HB

[honeybee13]

Here's a link to leemack's stikky.

 

http://www.consumeractiongroup.co.uk/forum/showthread.php?316210-ESA50-Guide

 

And this is from the Money Advice Init. Some of the mental health charities also have guides.

 

http://documents.ncodp.org.uk/DRN%20Docs/Herts%20County%20Council%20esa50%20guide.pdf

 

HB

[estellyn]

Hi, I have heard of your disease, and seen a bad case, so am well aware of how debilitating it can be.

 

With rare diseases, benefits can be slow and difficult to get, especially one such as this where little is known about it by many doctors, and they look it upa nd think 'just a skin condition' - but it is one of those things that really needs to be seen to realise the full extent of the agony it can cause. I think you having an assessment by a doctor for DLA is a good idea - I think a doctor seeing it will be able confirm the severity and hopefully ensure you get awarded DLA, and yes it is more common to have a doctor assessment with a rare a difficult to visualise condition.

 

With ESA, just take one step at a time - ESA50 first, then worry about an assessment later - but if your HS is as severe as you state, one look at it and an ATOS assessor should realise the difficulties you must have.

[paulb1310]

I too know of your condition and have assisted with successful claims for DLA for people with the condition so it is possible.

[dogboneday]

I think you having an assessment by a doctor for DLA is a good idea - I think a doctor seeing it will be able confirm the severity and hopefully ensure you get awarded DLA, and yes it is more common to have a doctor assessment with a rare a difficult to visualise condition.

 

 

Personally I wouldn't be too sure in saying that having an assessment for DLA is a good thing.

 

With DLA you have to prove that you have needs, not that you have a particular condition.

As it is rare, it will be highly likely that the 'doctor' who examines you (very rarely if ever!) will see the problem, but may not appreciate the difficulties it causes and the needs that it creates.

From experience of these 'doctors' they generally lack knowledge of anything other than that which the ordinary person would normally suffer from such as arthritis etc.

In my case the 'doctor' disputed what two psychiatrists had diagnosed as well as disputing the medication that they prescribed for me. He went as far to report to the DWP that I wasn't actually suffering from anything!

 

With any rare physical condition as well as psychiatric ones, it all depends on the day on who you get to do the 'examination' - it's more of an interview than a medical. The next 'doctor' that assessed me at a review, came to the conclusion that she wasn't able to make up her mind, she had me on the couch to press my stomach (err Mental Health I claimed for!) and concluded that the previous 'doctor' at the earlier assessment must have got it right!

Edited March 18, 2013 by dogboneday

[estellyn]

Personally I wouldn't be too sure in saying that having an assessment for DLA is a good thing.

 

With DLA you have to prove that you have needs, not that you have a particular condition.

As it is rare, it will be highly likely that the 'doctor' who examines you (very rarely if ever!) will see the problem, but may not appreciate the difficulties it causes and the needs that it creates.

From experience of these 'doctors' they generally lack knowledge of anything other than that which the ordinary person would normally suffer from such as arthritis etc.

In my case the 'doctor' disputed what two psychiatrists had diagnosed as well as disputing the medication that they prescribed for me. He went as far to report to the DWP that I wasn't actually suffering from anything!

 

With any rare physical condition as well as psychiatric ones, it all depends on the day on who you get to do the 'examination' - it's more of an interview than a medical. The next 'doctor' that assessed me at a review, came to the conclusion that she wasn't able to make up her mind, she had me on the couch to press my stomach (err Mental Health I claimed for!) and concluded that the previous 'doctor' at the earlier assessment must have got it right!

 

I did not say a DLA doctor assessment was good for all people, but may be good in this case. This condition in its severe form is dramatic in its impact when you see it in person, and a doctor who was not aware of the implications of the condition, could not fail to realise its seriousness when they see it for themselves.

[dogboneday]

I did not say a DLA doctor assessment was good for all people, but may be good in this case. This condition in its severe form is dramatic in its impact when you see it in person, and a doctor who was not aware of the implications of the condition, could not fail to realise its seriousness when they see it for themselves.

 

We will have to agree to disagree.

[Nystagmite]

Estellyn does have a point. In one way, I was hoping for an assessment for my DLA. It's clear that they don't understand what I have either. Let alone the fact that the combination of disabilities I have, (hearing and sight impairment, Autism and a bowel condition) means my needs aren't the same as someone who just has one of them.