DLA home assessment, diagnoses & general help

diamonds

Hey everyone I am using a friends screename for privacy.

If anyone has any experience, advice or any thoughts etc please input as I think I need advise on all avenue's...I will put as much info in as poss as I know people know me off this board in the real world and I dont want any identifying info here so with circumstances/medical info I will be brief without FULL information.

In 2001 I was admitted to A&E at my local hospital with open wounds, I was patched up, stopped from bleeding to death & next day operated on to remove foreign object/s from my leg & discharged home.

I have since 2001 been on & removed (as fit for work so says ATOS reports) from sickness benefits 3 times, my 4th current claim E&SA started May 2010.

Late 2009 having borrowed thousands of pounds to get private medical abroad (cost & exchange rate) attention I returned with a few diagnoses of suspected Lupus, possible fibromyalgia arthritis & confirmed degenerative lower spinal osteoarthritis after a normal xray was confirmed nothing and as I could only afford lower MRI or CAT scan of of the area (unsure which) where always pain but middle and top would suffer severe pain aswell).

Along with the neurological pain of my leg, NHS seemed to think the spinal was nerve damage to siatic nerve, which in turn turned out to be as I always argued....BULL.

I got a NHS Rheumotology appointment 2 weeks ago to whom I took the private CAT/MRI who refused to CAT/MRI the rest of my spine, who regardless thinks its spinal psorisis (I have suffered phsorsis of scalp since teenager)....and I am being sent for a MRI spine thoracic next week.

DLA claim started in 2003 2 years after "disability" - hate that word, as no DWP or DSS then told me to claim it even though they had all my medical reports.

May review refused to budge on my lower spinal osteo arthritis and nerve damage with no change to middle rate care (first 3 years were lower mobility & care ) even though I have been housebound for 9 years + and unable to work over that period and rarely do housework.

DLA review forms done by welfare rights dept at local council, no change - evidence of fraud by DWP DLA reprinting review from 2 years prior and changed dates, cannot disclose proof of fraud here but I went to my MP again whom still after 12 months under a Data Protection Request would not send me copies ALL of my DWP files, when recieved no DLA files & missing all ATOS medical files in June 2010, MP still awaiting reply to further requests for them.

MP complaint about DLA meant I got sent a home assessment from ATOS (I believe) today from Dr whom is of the opinion which makes rubbish of all the assessments I have had from ATOS over 9 years on FIT TO WORK that the injury in 2001 caused ME ( commonly known as Chronic Fatigue Syndrome ) and I have suffered it since 2001 regardless of leg damage or spinal ontop........

Ok someone/anyone here help here.....have I suffered 9 years of my youth (early 30's now) through HELL housebound & severe pains as NHS were negligent (no spinal xray at A&E) and DWP ATOS contractor earning brownie points to keep thier DWP contract by over ruling my GP

I'm aghast what I have had to suffer, in pain & poverty for almost 10 years with no help from my local council as my "care" needs would only be met by my DLA middle rate care with me required to pay the rest myself as as was not a QUALIFYING person due to DLA assessment & their requirements surrounding such.

Approx 35% of my MRC went to meals on wheels which after ballooning almost 2 stone more I stopped in 2007 and I had to fight local council to get them in the first place even though I paid for my main meal everyday, fight for basic aids to get me in and out bath and bed, and my landlord (HA) and council fought over who was to pay for handrails for my bathroom which NEVER came to fruitation.

Today hearing the DWP doc say ME/CFS was not a shock, it was a relief and lifted my mood greatly & even my best mate on the phone & congratulated me (ironic but correct) on A medical diagnoses/opinion.


Advice, thoughts, anything people....this evening my heads spinning with thinking today about all this and writing this all down.

Thanks.

Indie_Kid

diamonds wrote: »

DLA claim started in 2003 2 years after "disability" - hate that word, as no DWP or DSS then told me to claim it even though they had all my medical reports.

You have to find out yourself what you're entitled to. Medical records don't show care and /or mobility needs.

unable to rarely do housework.

You can't claim DLA for housework.

Ok someone/anyone here help here.....have I suffered 9 years of my youth (early 30's now) through HELL housebound & severe pains as NHS were negligent (no spinal xray at A&E)

Did you tell them at the time you were in severe pain? They only carry out tests they feel need to be done.

Today hearing the DWP doc say ME/CFS was not a shock.

DWP aren't there to diagnose you. Their job is to decide what level(s) (if any) of DLA you're entitled to.

diamonds

sh1305 wrote: »

You have to find out yourself what you're entitled to. Medical records don't show care and /or mobility needs.



You can't claim DLA for housework.



Did you tell them at the time you were in severe pain? They only carry out tests they feel need to be done.



DWP aren't there to diagnose you. Their job is to decide what level(s) (if any) of DLA you're entitled to.

But medical evidence form GP points to housebound & unable to do daily chores, nerve damage was believed to cause problems with 1 hand and in pain, tired at all times just varies. Unable to complete simple tasks...

Housework/duties/shopping/meal prep/daily personal care. Home help was/is needed as a minimum due to inability to do these things for pain/crippling of hands most days.

Family member has to transport me everywhere, walking I have severe pain, dizzy spells, sickness, feeling of fainting with severe dizzy spells.

The GP (DWP/ATOS employed) felt arthritis was secondary to ME/CFS. He checked my leg, then leg movements, feet, knees, hands and him what he obviously felt was ok touching and stretching was causing me pain, he was very apologetic about it as he knew he was causing pain, then touching my back the same, he told me to relax while at my back and I said I was and he said I was too tense to be relaxed I told him that tense to me was 30%-%50 of the month crippled on sofa in pain.

He apolgised several times during the physical, and even lastly at the door when leaving for any pain he was causing during the examination, each time I replied it wasnt his fault it was my body and I knew he was here to to his job so not to apologise, he was gentler after I kind of squealed when he first started moving my ankle and leg.

He even before leaving for the door that said his opinion was my arthritis symptoms in the examined areas below my waist, hands and wrists was defo ME and he highly very much doubted arthritis there & hospital would confirm such in time with process of elimination, my fatigue and many other skin complaints/auto immune symptoms that happened after 2001 incident pointed at such with all the info the just "shy" of 2 hour (was meant to be 45 mins) assessment/appointment.

I must say he is one of the doctors with bedside manner that knows information & discussion is a main apart of a examination & treatment takes two, the doctor & patient not just the doctor. He was in his late 50's so I assume he has good experience compared to all the ATOS "medical professional" I have had, whom none was a GP.

He even told me he used to be a surgery GP in XXXX town at start of the appointment, which although I already knew (google) I found very professional from the outstart. Never had an ATOS "medical professional" tell me such at any other DWP required assessment.

Lastly, "your condition changes hourly let alone daily/weekly or monthly allowing you no control of your routine even with medication, it helps but not enough" - CORRECT !

CJN4

Hi,

I have read both your posts twice. Apart from really struggling to understand (apologies if English isnt your first language) - I am not sure what sort of advice / information or help you want?

welshmoneylover

diamonds wrote: »

Hey everyone I am using a friends screename for privacy.

If anyone has any experience, advice or any thoughts etc please input as I think I need advise on all avenue's...I will put as much info in as poss as I know people know me off this board in the real world and I dont want any identifying info here so with circumstances/medical info I will be brief without FULL information.

In 2001 I was admitted to A&E at my local hospital with open wounds, I was patched up, stopped from bleeding to death & next day operated on to remove foreign object/s from my leg & discharged home.

I have since 2001 been on & removed (as fit for work so says ATOS reports) from sickness benefits 3 times, my 4th current claim E&SA started May 2010.

Late 2009 having borrowed thousands of pounds to get private medical abroad (cost & exchange rate) attention I returned with a few diagnoses of suspected Lupus, possible fibromyalgia arthritis & confirmed degenerative lower spinal osteoarthritis after a normal xray was confirmed nothing and as I could only afford lower MRI or CAT scan of of the area (unsure which) where always pain but middle and top would suffer severe pain aswell).

Along with the neurological pain of my leg, NHS seemed to think the spinal was nerve damage to siatic nerve, which in turn turned out to be as I always argued....BULL.

I got a NHS Rheumotology appointment 2 weeks ago to whom I took the private CAT/MRI who refused to CAT/MRI the rest of my spine, who regardless thinks its spinal psorisis (I have suffered phsorsis of scalp since teenager)....and I am being sent for a MRI spine thoracic next week.

DLA claim started in 2003 2 years after "disability" - hate that word, as no DWP or DSS then told me to claim it even though they had all my medical reports.

May review refused to budge on my lower spinal osteo arthritis and nerve damage with no change to middle rate care (first 3 years were lower mobility & care ) even though I have been housebound for 9 years + and unable to work over that period and rarely do housework.

DLA review forms done by welfare rights dept at local council, no change - evidence of fraud by DWP DLA reprinting review from 2 years prior and changed dates, cannot disclose proof of fraud here but I went to my MP again whom still after 12 months under a Data Protection Request would not send me copies ALL of my DWP files, when recieved no DLA files & missing all ATOS medical files in June 2010, MP still awaiting reply to further requests for them.

MP complaint about DLA meant I got sent a home assessment from ATOS (I believe) today from Dr whom is of the opinion which makes rubbish of all the assessments I have had from ATOS over 9 years on FIT TO WORK that the injury in 2001 caused ME ( commonly known as Chronic Fatigue Syndrome ) and I have suffered it since 2001 regardless of leg damage or spinal ontop........

Ok someone/anyone here help here.....have I suffered 9 years of my youth (early 30's now) through HELL housebound & severe pains as NHS were negligent (no spinal xray at A&E) and DWP ATOS contractor earning brownie points to keep thier DWP contract by over ruling my GP

I'm aghast what I have had to suffer, in pain & poverty for almost 10 years with no help from my local council as my "care" needs would only be met by my DLA middle rate care with me required to pay the rest myself as as was not a QUALIFYING person due to DLA assessment & their requirements surrounding such.

Approx 35% of my MRC went to meals on wheels which after ballooning almost 2 stone more I stopped in 2007 and I had to fight local council to get them in the first place even though I paid for my main meal everyday, fight for basic aids to get me in and out bath and bed, and my landlord (HA) and council fought over who was to pay for handrails for my bathroom which NEVER came to fruitation.

Today hearing the DWP doc say ME/CFS was not a shock, it was a relief and lifted my mood greatly & even my best mate on the phone & congratulated me (ironic but correct) on A medical diagnoses/opinion.


Advice, thoughts, anything people....this evening my heads spinning with thinking today about all this and writing this all down.

Thanks.

I have read your post twice and I'm not sure exactly what sort of advice you are after.

Do you need benefit advice, a medical diagnosis or information on getting assessed for medical equipment?

diamonds

Sorry ! BRAIN FOG, its part of ME/CFS

Help from anyone with regards to who has any experience of ME/CFS with DWP.

I already just appointed a lawyer after UK return when I found out NHS did not do spinal checks at A&E, DWP will be going that way aswell given I will have a copy of the assessment requested from DLA this afternoon and on route to me as soon as they recieve it, and a transcript of the recording I took today - some things with ATOS you just learn with experience,

I got a copy of the last medical for Incapacity which nothing, absolutely nothing was anything like my conversation with the "medical professional", I only got this after appeal in early 2008 but I failed my appeal on a error DWP made that welfare rights did not pick up on and a error by Appeals Service who messed up. The Appeals service won by refusing to address my complaint as they "done me a favour" which worked more for the DWP than me in the long run. As did the Justice dept who failed to reply to my contact. All now going to my new lawyer.


Lawyer tried every avenue to no avail....now this from a DWP appointed GP has come to light, my GP did mention CFS in the past before I left last year after lupus blood tests but given I had a wrong diagnoses from NHS hospital in 2001 after the "incident" over 18 months on a skin complaint & they refused to do a biopsy on which they felt in 2009 was a correct diagnoses of the incorrect 2001 diagnoses and on second opinion though that time frame meant a risk of underlying cancer as greater than ever, I asked the head of dept to do a biopsy but was another who refused biopsy, they also used Data Protection Act against me saying after 6 years they destroyed the 2001/2002 file so I could not get copies and refused the Dr's name (to make a GMC complaint) although he had worked in that dept for many years upto 2001 and was the only asian Dr they had in the dept said they could not give his name as the files were destroyed ?? - I quit the NHS and went private for evasive cancer tests, lupus (the list goes on & on )

Honestly public bodies are a mess.....

CJN4

Sorry - just cant work out what it is that you are trying to say??

You say you 'quit' the NHS - not sure why - because you wanted a diagnosis they wouldnt give you?

You say you 'went private' - in this country to see the same doctors that work for the NHS / funded how / & what for?

Hopefully someone will be able to 'translate' your posts & offer some advice.

Best wishes

welshmoneylover

diamonds wrote: »

Sorry ! BRAIN FOG, its part of ME/CFS

Help from anyone with regards to who has any experience of ME/CFS with DWP.

I already just appointed a lawyer after UK return when I found out NHS did not do spinal checks at A&E, DWP will be going that way aswell given I will have a copy of the assessment requested from DLA this afternoon and on route to me as soon as they recieve it, and a transcript of the recording I took today - some things with ATOS you just learn with experience,

I got a copy of the last medical for Incapacity which nothing, absolutely nothing was anything like my conversation with the "medical professional", I only got this after appeal in early 2008 but I failed my appeal on a error DWP made that welfare rights did not pick up on and a error by Appeals Service who messed up. The Appeals service won by refusing to address my complaint as they "done me a favour" which worked more for the DWP than me in the long run. As did the Justice dept who failed to reply to my contact. All now going to my new lawyer.


Lawyer tried every avenue to no avail....now this from a DWP appointed GP has come to light, my GP did mention CFS in the past before I left last year after lupus blood tests but given I had a wrong diagnoses from NHS hospital in 2001 after the "incident" over 18 months on a skin complaint & they refused to do a biopsy on which they felt in 2009 was a correct diagnoses of the incorrect 2001 diagnoses and on second opinion though that time frame meant a risk of underlying cancer as greater than ever, I asked the head of dept to do a biopsy but was another who refused biopsy, they also used Data Protection Act against me saying after 6 years they destroyed the 2001/2002 file so I could not get copies and refused the Dr's name (to make a GMC complaint) although he had worked in that dept for many years upto 2001 and was the only asian Dr they had in the dept said they could not give his name as the files were destroyed ?? - I quit the NHS and went private for evasive cancer tests, lupus (the list goes on & on )

Honestly public bodies are a mess.....

I'm really sorry but I still don't understand what exactly you are after.

Are you trying to sue the NHS for negligence or are you asking for help with benefit payments.? What exactly did you use a lawyer for? The NHS are known for making mistakes, diagnosis of conditions can be very difficult sometimes especially when they have limited resources.

qwertyuiop12345

diamonds wrote: »

Sorry ! BRAIN FOG, its part of ME/CFS

Help from anyone with regards to who has any experience of ME/CFS with DWP.

I already just appointed a lawyer after UK return when I found out NHS did not do spinal checks at A&E, DWP will be going that way aswell given I will have a copy of the assessment requested from DLA this afternoon and on route to me as soon as they recieve it, and a transcript of the recording I took today - some things with ATOS you just learn with experience,

I got a copy of the last medical for Incapacity which nothing, absolutely nothing was anything like my conversation with the "medical professional", I only got this after appeal in early 2008 but I failed my appeal on a error DWP made that welfare rights did not pick up on and a error by Appeals Service who messed up. The Appeals service won by refusing to address my complaint as they "done me a favour" which worked more for the DWP than me in the long run. As did the Justice dept who failed to reply to my contact. All now going to my new lawyer.


Lawyer tried every avenue to no avail....now this from a DWP appointed GP has come to light, my GP did mention CFS in the past before I left last year after lupus blood tests but given I had a wrong diagnoses from NHS hospital in 2001 after the "incident" over 18 months on a skin complaint & they refused to do a biopsy on which they felt in 2009 was a correct diagnoses of the incorrect 2001 diagnoses and on second opinion though that time frame meant a risk of underlying cancer as greater than ever, I asked the head of dept to do a biopsy but was another who refused biopsy, they also used Data Protection Act against me saying after 6 years they destroyed the 2001/2002 file so I could not get copies and refused the Dr's name (to make a GMC complaint) although he had worked in that dept for many years upto 2001 and was the only asian Dr they had in the dept said they could not give his name as the files were destroyed ?? - I quit the NHS and went private for evasive cancer tests, lupus (the list goes on & on )

Honestly public bodies are a mess.....

Like others have mentioned I'm struggling a bit to follow your posts (probably due to my own medication induced brain fog!), but I just thought I might mention a few things in case it helps at all.

Is it possible that you are having problems with the NHS because of difficulties communicating clearly with the doctors? (either because of fatigue, brain fog, or the stress of being chronically ill etc.)

It might be worth seeing if there is a nurse or counselling available at your local GP to talk through the whole approach to you medical problems and make a clear plan of action. Occupational therapists can also be very useful to anyone with a long term chronic illness.

I'm not sure what you mean by "when I found out NHS did not do spinal checks at A&E" as I am sure they will do any tests they think will be useful. I have had both an X-ray and MRI of my spine during trips to A&E.

As you also mentioned being refused a biopsy, it did make me wonder if at some point your doctors might have suspected you might possibly have a mental disorder such as conversion disorder. I hope you won't be offended that I have mentioned this. I am not suggesting that you do in fact have a problem such as this (after all I know nothing about you), but if they had had these thoughts it might explain why you have had problems with being denied tests.

I know it is easy to feel desperate as a result of chronic illness, but please don't spend all your money on private medical tests. Don't give up on the NHS, you should be able to get whatever tests you need from them and then you'll be able to spend your money on making your life easier.

Indie_Kid

The NHS only do tests they feel are needed - not what you ask for.

diamonds

qwertyuiop12345 wrote: »

Like others have mentioned I'm struggling a bit to follow your posts (probably due to my own medication induced brain fog!), but I just thought I might mention a few things in case it helps at all.

Is it possible that you are having problems with the NHS because of difficulties communicating clearly with the doctors? (either because of fatigue, brain fog, or the stress of being chronically ill etc.)

It might be worth seeing if there is a nurse or counselling available at your local GP to talk through the whole approach to you medical problems and make a clear plan of action. Occupational therapists can also be very useful to anyone with a long term chronic illness.

I'm not sure what you mean by "when I found out NHS did not do spinal checks at A&E" as I am sure they will do any tests they think will be useful. I have had both an X-ray and MRI of my spine during trips to A&E.

As you also mentioned being refused a biopsy, it did make me wonder if at some point your doctors might have suspected you might possibly have a mental disorder such as conversion disorder. I hope you won't be offended that I have mentioned this. I am not suggesting that you do in fact have a problem such as this (after all I know nothing about you), but if they had had these thoughts it might explain why you have had problems with being denied tests.

I know it is easy to feel desperate as a result of chronic illness, but please don't spend all your money on private medical tests. Don't give up on the NHS, you should be able to get whatever tests you need from them and then you'll be able to spend your money on making your life easier.

No they defo never though I was imaging things lol, they over 18 months of treatment for skin disorder that was wrongly diagnosed in 2001 but gave a correct one (second opinion abroad confirmed it) in 2009...the risk of cancer got worse every 3 months they knew that and 8 years later would not do a skin biopsy to confirm or worse clear my mind of any underlying cancer of the surface skin, not even a apology I was incorrectly diagnosed. Abroad when a third party company lost a skin sample for biopsy in a public hospital well when they noticed the HEAD of that dept came running in from their consultation they were in the middle of to profusely apologise on behalf of the whole hospital & her department, admitting unprofessionalism & liability lay with them. I accepted that apology and was asked did I want to make a complaint and seek compensation as they would need to extract more skin and cause me more pain. IMPRESSIVE ! On the count of how professional they were in the circumstances I made no complaint or compensation request, even though they made me leave with the paperwork and envelope with a postage stamp which was addressed to the chief executive of the hospital !

I had no choice but to go private abroad as it was cheaper than UK treatment outside NHS, and NHS were even refusing xrays. I have been cut off sickness benefits and had to pay rent, council tax & living costs each time for a year twice, had to borrow money to pay these this & while sick with no DLA support my travel costs being housebound - taxi's to appointments and mainly my nearest supermarket every other day amounted to £30,000 - £35000 borrowed from family and the £10000 last year for rent, food & medical costs.

That may sound alot but food costs are approx £90-100 a week eating the best health diet I can due to bad diet worsening my health, add rent & council tax, then ontop the local authority held me accountable for rent and council tax & refused to pay almost another two years HB & CTB EVEN though I was getting benefits for 1 year of it and provided proof of income via bank statements at time when I was not - all because my DWP claim/payments were registered to my parents address as they dealt with my mail/finances/£20,000 debt letters to creditors as I was not capable of such.

I owe family approx £45,000 for 9 years and the largest chunk of that was rent & council tax for approx 4 yrs, DWP GP who done DLA assessment says no way will I work when I cant cope with studying 8 hrs a week at college in 2007 with DSA allowance & why this ME/CFS was missed so long basic beggers belief, him himself having been a NHS GP.