ATOS denying home visit based on my GPs lack of evidence ?

[claire1981]

I looked into it but i dont think it would help because of the nature of my issues and the fact its not actually that I cant talk , but rather I dont as result of its effects on me ( if that makes sense ) I mean what I believe I have is basically anomaly / subset of an already rare condition in EDS / HMS that was made worse by a fringe treatment I had in the US , that resulted in lesion in the very area there is no diagnostic scanning for. ( because it doesnt exist for even " regular EDS / HMS )

 

If I try to bring it up with Eds charity they usher me away because I frighten people . and you can only imagine the reaction from Gps.. so I actually have to pretend its far less worse than it is ( regular EDS / HMS ) otherwise no one would even listen to me.

 

And worst of all is the fact its invisible illness so it is not even obvious without a way to measure / compare connective tissue.

 

I'm not sure why you would have to pretend it's not bad to your GP? If you can tell us, why can't you write to GP explaining what happens- eg daily sprains. I'm not sure how you even know what EDL/HMS is though, I'd never heard of it. If you have a family history of it that may help. I've found that GPs really don't like public doing their job for them & they like you to present with the exact symptoms of a condition all nice & neat- then send you off to be diagnosed by specialist who confirms it. They really don't seem to want to acknowledge anything that doesn't fit in with this. I really think you need to write to your GP & explain the extent of your daily difficulties. If this is just 1 condition/problem it shouldn't be too difficult to get across all your daily issues. But I'm certainly no expert.

[mikv]

get back 2 u that hopefully tomorrow ( hands bad )

[claire1981]

I thought you would say that. Instead of getting back to me, you may be better writing to your GP instead.

 

I use voice recognition due to pain of joins/fatigue/visual disturbances etc. It wasn't a cheap option & caused many problems to get + isn't 100% reliable. And if you wish to use it to fill out forms, it's often incompatible. I have problems with my voice stammering etc so even this route isn't always open to me.

 

You really should explain all your personal difficulties to your GP in clear written detail (recorded delivery). Even then there's no guarantee they will accept them- but if you don't try there's no chance they will. If you do try; at least there's a paper trail of your claims- which may be invaluable to use as evidence if needing to appeal later.

[**Margaret**]

:mikv:

 

Right, I don't have a magic wand, there isn't one! Unreasonably, you need to chip away at Atos. Some more ideas, all of which I've had work. None of them guaranteed to work. Very occasionally Atos succumb to combined pressure or by that time have decided a face to face isn't necessary after all.

 

Doesn't matter to me why you're withholding info from your doctor (or Atos), but honesty may be the best policy if they're to fully understand why you can't get to an assessment. Are there any psychological issues?

 

From your diagnosis and mention of a ramp, I'm wondering if you use a powered chair. If you can cobble together enough evidence; adapted accommodation, copy of a chair assessment, bill/contract for maintenance of a chair, Atos may decide you've limited capability for work on the paper evidence.

 

Do you have Atos refusal of a home visit in writing? If not, ask for it. No response? Call them, put the phone on speaker and record the call, then send a transcript to your doctor. Don't bother with 08002 888777. Select the number from the list below that's most likely to cover your area. Assertiveness and persistence, with Atos and general practitioners, sometimes pays off.

 

http://dpac.uk.net/tag/atos-phone-numbers

 

From your medical records and anything relevant from the internet, put together a statement, in graphic detail, of how an attempt to get to Atos could risk serious damage to your internal organs, joints and skin. Or that you'd be in so much pain it's a non starter. Not enough by itself, but adds to the pressure. And if necessary, it'll help you defend a 'failure to attend'.

 

Did you have a face to face assessment for your award of disability living? Whilst it's important to realise that the criteria for the awards are different, there's some overlap. There may be some evidence in your application/medical report for disability living that you can't get to Atos. Also, there may be some supportive evidence that you've limited capability for work/work related activity. Disability n carers don't charge for subject access.

 

Best wishes, Margaret.

Edited September 17, 2013 by **Margaret**

[mr_mastiff]

get back 2 u that hopefully tomorrow ( hands bad )

 

Have you had any genetic testing in relation to your EDS/HMS

[seanamarts]

You cannot insist that a GP visits you at home. A GP will only visit you at home if they think that your medical condition requires it. A GP can also decide how urgently a visit is needed.

 

Are you saying that you are not ill enough to see a doctor?

The doctor can send out a community nurse though. She could relay your issues.

[mikv]

Have you had any genetic testing in relation to your EDS/HMS

 

no , I didnt want the typical hassle / expenses trying to fight to get referrals to go private ( there is no way my local health board would pay it ) - nor did I see the point given there is still no cure / treatment .

 

I have had such negative experiences and what IMO boarders on negligence or ill intent its becomes very emotional challenging for me whenever Im forced to deal with the NHS / GPs . after all its their incompetence that is a good part of the reason why I am crippled today.

[mikv]

I thought you would say that. Instead of getting back to me, you may be better writing to your GP instead.

 

I use voice recognition due to pain of joins/fatigue/visual disturbances etc. It wasn't a cheap option & caused many problems to get + isn't 100% reliable. And if you wish to use it to fill out forms, it's often incompatible. I have problems with my voice stammering etc so even this route isn't always open to me.

 

You really should explain all your personal difficulties to your GP in clear written detail (recorded delivery). Even then there's no guarantee they will accept them- but if you don't try there's no chance they will. If you do try; at least there's a paper trail of your claims- which may be invaluable to use as evidence if needing to appeal later.

 

I did , but i lost the receipt and the scanned image I took got lost thanks to my ext HD failing ( both of them ) .

I've asked them to mail me the copy instead for evidence but they told me its too expensive to mail ( is that normal ? )

I plan to phone on skype tomorrow as last resort and record in case the GP refuses to send it - or maybe i should just pay courier to pick it up recorded again ?

 

The letter the GP sent to ATOS was unbelievable considering the info I had given him was 10 pgs long , it was barely 2 sentences and just confirmed he had spoken to me and that was it .

Edited September 19, 2013 by mikv

[mikv]

Are you saying that you are not ill enough to see a doctor?

The doctor can send out a community nurse though. She could relay your issues.

 

she could but wouldnt he still want to see me ?

[mikv]

I thought you would say that. Instead of getting back to me, you may be better writing to your GP instead.

 

I use voice recognition due to pain of joins/fatigue/visual disturbances etc. It wasn't a cheap option & caused many problems to get + isn't 100% reliable. And if you wish to use it to fill out forms, it's often incompatible. I have problems with my voice stammering etc so even this route isn't always open to me.

 

You really should explain all your personal difficulties to your GP in clear written detail (recorded delivery). Even then there's no guarantee they will accept them- but if you don't try there's no chance they will. If you do try; at least there's a paper trail of your claims- which may be invaluable to use as evidence if needing to appeal later.

 

I actually ended up writing a long explanation of recent events to ATOS , for the latest appointment I had to cancel , and now I need another break - more DIY to get back 2 Starryeyes below.. and all this on £60 mechanical cherry keyboard i bought that has actually made it easier for me type compared to how I was.

[mikv]

BTW is there any way to prove I've not been to my bank or made a cash withdrawl without showing " THEM " my statements ?

 

I have list of cancelled dental appointments , and no renewed bus pass since I got worse , but thats it .

[mr_mastiff]

Mikv, In relation to your EDS have you ever been referred to see a specialist consultant.

 

The link below may be of some interest to you.

 

http://www.specialisedservices.nhs.uk/service/ehlers-danlos-syndrome/search:true

 

http://www.rnhrd.nhs.uk/page/97

[mikv]

Mikv, In relation to your EDS have you ever been referred to see a specialist consultant.

 

The link below may be of some interest to you.

 

http://www.specialisedservices.nhs.uk/service/ehlers-danlos-syndrome/search:true

 

I was yrs ago in 2003 ( by the top guy in the UK no less ) and accepted after he disagreed with my then GPs assessment and usual downplaying of my problems.

 

It wasnt untill I requested my records however , that I found out about this - including many other things he and other Gps , had never disclosed to me over the yrs , some very relevant to what they claimed they could find no evidence of - namely this

 

I made list of them as my final wall of defence if things get nasty, including personal remarks that were made about my family, how I spoke and my appearance that bore no relation at all to my problems , other than to provide some amusement it seems , or more opportunities to case me in a certain light.

Edited September 19, 2013 by mikv

[mr_mastiff]

Mikv going back to your first post could you not claim that due to the rarity of your condition that the GP needed to copy large sections of what you had told him because there is so little general knowledge about your condition within general practice. In 2011 there were only about 310 referrals to the specialist centre in London. The only way your GP could confirm what you told him was by referring you back to the specialist centre.

[mikv]

Mikv, In relation to your EDS have you ever been referred to see a specialist consultant.

 

The link below may be of some interest to you.

 

http://www.specialisedservices.nhs.uk/service/ehlers-danlos-syndrome/search:true

 

http://www.rnhrd.nhs.uk/page/97

 

Hi,

 

I saw a specialist in the Mayo clinic back in 2002 before I got worse that diagnosed me with HMS / EDS ( this was in the US ) and have lot of history , signs that point towards it too.

 

The problem is, there is no one trained in my area to recognize EDS, ( I checked with HMSA charity ) and In fact only 11 patients thus far Im aware of with EDS in Scotland itself. so the margins of any doctor diagnosing this here are beyond small - esp when they have no other patients with it .

 

Whats evern worse too is the fact I believe I have subtype known as CSI that even more difficult to diagnose and in fact almost impossible without specific tests - one being sit up MRI that can take different angles / shots..which costs a cool £1400 minus the flight to london ( I cant tolerate vibrations from motors my joints are so weak )

 

Rather than try to argue with my GP I've been trying to find private one who might do a letter on the strength of my history , but Im having a real problem finding any who do phone consultations in Scotland , then again perhaps it doesnt matter where the GP is ?

 

mikv

[mr_mastiff]

Hi,

 

I saw a specialist in the Mayo clinic back in 2002 before I got worse that diagnosed me with HMS / EDS ( this was in the US ) and have lot of history , signs that point towards it too.

 

The problem is, there is no one trained in my area to recognize EDS, ( I checked with HMSA charity ) and In fact only 11 patients thus far Im aware of with EDS in Scotland itself. so the margins of any doctor diagnosing this here are beyond small - esp when they have no other patients with it .

 

Whats evern worse too is the fact I believe I have subtype known as CSI that even more difficult to diagnose and in fact almost impossible without specific tests - one being sit up MRI that can take different angles / shots..which costs a cool £1400 minus the flight to london ( I cant tolerate vibrations from motors my joints are so weak )

 

Rather than try to argue with my GP I've been trying to find private one who might do a letter on the strength of my history , but Im having a real problem finding any who do phone consultations in Scotland , then again perhaps it doesnt matter where the GP is ?

 

mikv

 

Hi mikv, No GP will give you a letter on the basis of a telephone consultation. It would just not stand up for many reasons including legal and ethical. If you can afford it perhaps a home visit by the G.P may be the answer.

 

Perhaps Local Patients associations/charities may help in the cost.

 

Another alternative would be to get a private physiotherapy assessment at home which would clearly state your abilities. DWP/ATOS would have to accept this.

[mikv]

Hi,

 

Physio sounds more doable perhaps - what about osteopaths ?

 

I was told I could get referral by one for that scan I mentioned and they might be more keyed up with some of my issues depending on who I can find.

 

thanks again,

 

mike

[mr_mastiff]

Outside of the U.S.A osteopaths normally are only considered as complementary therapy. Please see link below.

 

http://www.nhs.uk/conditions/Osteopathy/Pages/Introduction.aspx.

 

Normally a scan of the type you want is authorised at consultant level. So you would need to see a consultant rhumatologist / orthopaedic type to get the referral. However it may help to research if that type of scan is available in Scotland. If not help towards travel costs can be obtained through the NHS.

 

have you tried the website below

 

http://www.hypermobility.org/forum/viewtopic.php?f=3&t=13364

[mikv]

Outside of the U.S.A osteopaths normally are only considered as complementary therapy. Please see link below.

 

http://www.nhs.uk/conditions/Osteopathy/Pages/Introduction.aspx.

 

Normally a scan of the type you want is authorised at consultant level. So you would need to see a consultant rhumatologist / orthopaedic type to get the referral. However it may help to research if that type of scan is available in Scotland. If not help towards travel costs can be obtained through the NHS.

 

have you tried the website below

 

http://www.hypermobility.org/forum/viewtopic.php?f=3&t=13364

 

I am actually already a member and have been for while of that site ,its pretty useful as you say.

 

Funnily enough it was radiologist herself I spoke for that scan that said I could get referral through an Osteopath.

 

That type of scan is the only type available in the UK unfortunately, its very unique in that allows different views upright.in different positions i.e. rotation, flexion etc

 

mike

[mr_mastiff]

I am actually already a member and have been for while of that site ,its pretty useful as you say.

 

Funnily enough it was radiologist herself I spoke for that scan that said I could get referral through an Osteopath.

 

That type of scan is the only type available in the UK unfortunately, its very unique in that allows different views upright.in different positions i.e. rotation, flexion etc

 

mike

 

HI mike try the osteopath then, things may be different north of the border. Good luck:-)

[fightingback99]

Hi,

 

 

The problem is, there is no one trained in my area to recognize EDS, ( I checked with HMSA charity ) and In fact only 11 patients thus far Im aware of with EDS in Scotland itself. so the margins of any doctor diagnosing this here are beyond small - esp when they have no other patients with it .

 

Whats evern worse too is the fact I believe I have subtype known as CSI that even more difficult to diagnose and in fact almost impossible without specific tests - one being sit up MRI that can take different angles / shots..which costs a cool £1400 minus the flight to london ( I cant tolerate vibrations from motors my joints are so weak )

 

 

mikv

 

There's a lady who often posts on the MSE forum who has HMS/EDS. Her daughter in her early twenties is in quite poor shape with it. They live in Glasgow. Wonder if she would know any useful contacts for you?

[mikv]

HI mike try the osteopath then, things may be different north of the border. Good luck:-)

 

I've managed to find a chiropractor here who claims to be familiar with EDS and can do referrals so we'll see.

 

In the meantime I've booked an appointment with Prof Graham in London for dec 18th ( his earliest ) but I doubt ATOS are going to be non to happy about it or allow me that much leyway so not sure what I can do other than explain the doc would need to send me to specialist for eds any way of which theres none here . ( closest and only one in Glasgow has 2 yr waiting list )

 

mike

[mikv]

There's a lady who often posts on the MSE forum who has HMS/EDS. Her daughter in her early twenties is in quite poor shape with it. They live in Glasgow. Wonder if she would know any useful contacts for you?

 

thanks, I'll keep that in mind .

[fightingback99]

I've managed to find a chiropractor here who claims to be familiar with EDS and can do referrals so we'll see.

 

In the meantime I've booked an appointment with Prof Graham in London for dec 18th ( his earliest ) but I doubt ATOS are going to be non to happy about it or allow me that much leyway so not sure what I can do other than explain the doc would need to send me to specialist for eds any way of which theres none here . ( closest and only one in Glasgow has 2 yr waiting list )

 

mike

 

Not trying to be difficult Mike, but if ATOS hear you are attending an appointment in London, think they'll expect you to be able to attend an apointment with them.

[mikv]

Not trying to be difficult Mike, but if ATOS hear you are attending an appointment in London, think they'll expect you to be able to attend an apointment with them.

 

that is true , although it is not just Prof Graham I am going there for ( hopefully ) but this scan which is one of kind and not available anywhere else , nor do is it mean theres any less risk - but at least I'll will be taking for good reasons other than with someone who is not eeven possibly qualified as doctor never mind one in EDS .