Advice Please

Hi Honeybear,

Most of what I have read about HS is very negaitive. I suffer from this condition myself so I know completely what you are going through with it.

Both GP's that I have seen at my surgery are in agreement that treatment is not successful, they have actually refused many times to give me antibiotics and mine is stage 3 (Ihave a sinus tract).

I know others personally who have gone as far as skin graft and lymph node removal and the abscesses reocurred.

Kathy

Yes,HS is a horrible disease.Iam stage 2,I've got one sinus tract forming.

Hi Honeybear,

Have you recently completed aa ESA50 and waiting a medical, or are you just worried about what could happen in the future.

Kathy

Hi Kathy,
No I havent completed an ESA50 form yet,Iam still on Income Support,but expect to be on ESA soon. Just worried about the future.

Hi Honey

I am a fellow sufferer of HS and have been for many years but only diagnosed (by myself) in 2009. Now at stage 3 I have sinus tracts in 2 areas and have other areas that are pretty much following the same path.

It is difficult to not go away from your original question as I always have so much to say about dermatologists and treating advanced HS but to let you know I have refused Roccutane and others before with no problem from a benefit point of view up to now.

I have seen a plastic surgeon regarding wide excision surgery to remove both my groins. The success rate is rediculous at 40% and he thinks my recovery would be at least 12 months as he would need to remove quite large areas, the risk of infection amongst other things due to the area is a risk my GP thinks is definately not worth considering..... this is going to be MY LAST RESORT option this year and will be REFUSED also, I have not feared a reaction concerning benefits yet.

For info Honeybear, I have had in just over a year about a dozen surgical procedures with 7 admissions to hospital (sinus tract removal, incision & drainage, abcess removal) . I have been admitted 3 times in the past 12 weeks alone, when I am home the district nurses may as well live here.

I am awaiting appeal for ESA as i was originally placed in WRAG but i think i fit descriptors for support group. This is from september 2009 although I have since been put in support group following my first re assesment in december 2010. I am also appealing against a DLA decision to award nothing from november 2009 and have a medical regarding this appeal next week!!!!

This is the right website for you to be at for advice on benefits. It is a tough struggle believe me, I am convinced that I should be awarded DLA but even now with much evidence for me I just have so many doubts whether I will or not. You just have to keep fighting on all the way to the end.....with the help you will get here you will be in the best position for answers to help you fight this rediculous benefits system.

Good luck...if you have any questions re HS maybe best if you let me knwo what forum you use for HS...

jOHN

Jima1 wrote:

Honeybear wrote:

Iam suffering with a (rare) Skin condition,Hidradenitis Suppurativa.Unfortunately not a lot is known about this condition,and there is no cure. Iam now at the stage were its causing me a great deal of pain and distress. At my last appointment with my Dermatologist,he informed me that there's only one option of treatment left to try,Roaccutane. He said that this Drug has many unpleasant side effects,and it might not work. He was not joking,he gave me a leaflet (4 A4 pages long)! This Drug,in my opinion,is very dangerous.

My question is: If I decide not to take this drug, could this work against me at the Atos medical?

I would be grateful for any advice.

Hi Honeybear,

Claimants have a right to refuse treatment be it drugs or surgery without fear of losing benefit.

Decision Makers and Appeal Tribunals can only look at your condition as it was when your claim was made, not after some proposed treatment be it drugs or surgery.

There are several Commissioners Decisions ( now called Upper Tribunals) all of which support the claimants rights to refuse treatment. For example :

R(M)1/95 states that a claimant is entitled to refuse medical treatment. Correct test is circumstances that apply to existing condition. See also CSDLA/171/1998. R(DLA)10/02 states that tribunals should consider whether refused treatment (unless reasonably refused) might mean that needs are not reasonably required. CDLA/3925/1997 adopts a similar line.

See also the NHS Choices website Do I have the right to refuse treatment?

Hope this helps.

Good luck

Jim

I think its right people should have the right to choose if and when and what treatment they have and don't have without having to give any reason. The question we should have now be asking is what do the yanks do if people wont have treatment ? because our lot follow there lead, and if they are taking steps to make people have treatment then IDS will soon copy them

time for a Google me thinks