Disability Living Allowance

[Jan1961]

Hi... I have been off work ( i work full -time) since 1st March. Clinically diagnosed with GCA/PMR on 60mg's pred as day and most days feel damn awful!! Headaches gone get the odd wave of headache for 10secs or so .. Still waiting for results of biopsy. unsure if i can return to work at the moment full time or part time as i am not yet on correct dose of meds... Can you claim DLA for this long term chronic illness or do DWP's not recognize it as a long term chronic illness? Thanks

[Annodomini]

Disability benefits are awarded on the basis of the effect that the condition has on you rather than on the basis of the condition itself. If you tell the assessor that you have PMR they will want to know how it affects your mobility and your ability to cope with day to day living. I'd advise you to go and see your local CAB for expert advice. And good luck.

[PMRpro Ambassador]

GCA is covered by disability law so your employer should be helping with adjustments to your workplace/patterns to help a return to work.

If you have GCA 60mg is the correct starting dose - but you won't remain on that permanently. The high dose is required to avoid vision loss and once the symptoms are gone and (if it applied) your blood tests are lower the dose will be reduced, usually down to 20mg after about 6 months and at the lower doses work isn't impossible. Working with GCA or PMR hasn't been too much of a theme in the past, most patients were already retired but it is increasingly common to find patients in their 50s and working. You will get statutory sick pay for some time whatever your employer's policy on sick leave - and I imagine that the disability regs prevent you being dismissed. In fact, many employers would welcome you as it improves their record for the employment of the disabled without them having to try hard!

Personally, I don't know of anyone who did jump the hoops to get DLA but as annodomini says - go and ask the CAB. I suspect however that the argument will be that it is controlled with pred. OTOH - I do know a couple of younger patients who retired on health grounds since they were in their late 50s and working in the NHS.

What I would say though is that you need to discuss things with your occupational health department and your union rep. Bringing them in can achieve a great deal. Being on high dose pred means you can be excused night shifts or later more than a couple in a row and also shorter working hours or different working patterns can be accommodated. Rest periods can also be introduced. There is a lot that can be achieved.

[mickt in reply to PMRpro]

All valid points from pmr pro ,I was on 20mg -10 mg pred and 20mg of methotrexate once weekly .Pred on alternative days ,Ive gca pmr had cyclophosphamide 6 pulses which stopped in nov 13.Last weekend I had grey mosaic curtain in left eye.The 10 15 is the lowest pred ive been on and had a flare .It happened 3 times sat ,2 on sunday .I got in touch with hospital and was told to go straight in.After thorough eye examination by locum registrar my eyes were ok. The consultant opthalmogist was not in til yesterday Tuesday. Was told on Monday to increase steroids to 20 15 alternative days which ive done .The hospital freeman and rvi have been in touch personally from the eye consultant and from the rheumatologists sec bringing my appointment with him forward from june to tomorrow Thursday.I must be lucky reading stories of care or lack of it on this forum.I have been medically retired from my job ,been awarded highest tier of pension thank god.As Pmr pro says occupational health in the workplace is the way forward if you have the facility .I'm 51 yrs. old and didn't envisage this happening but im lucky I realise people haven't got a pension cushion. The benefit system is a joke ,money is not getting to genuine cases and the government has the audacity to label disabled and unemployed people as ,scroungers ,cheats .It is a national disgrace but im going off topic.It is right that gca is covered by disability equality act I think.Its a strange illness we have to cope with.Good luck to you anyhow.

[DorsetLady PMRGCAuk volunteer]

Hi Jan1961,

I applied for AA last year (same criteria as DLA but for those of us who are retired). No go unfortunately, despite appealing, and also having lost sight in one eye. The system certainly doesn't appear to take much notice if what you can, or cannot do, physically. I got the impression that it's whether you can manage mentally.

As Annodomini says best contact your local CAB, they know the right wording to use!

Good luck anyway, DorsetLady

[Hidden]

Read Tim's story, it is a bit out of date as the rules have been changed, but it is enlightening. PMRpro has given you some good advice.

pmr-gca-northeast.org.uk/we...

[PMRpro Ambassador]

Perhaps one of the most pertinent bits of information I've heard is to appeal and appeal again if you are turned down. There is an assumption that the really sick will keep trying whereas scroungers won't. Of course - hasn't ATOS been sent off with its tail between its legs since they had no idea what they were doing? As any of us could have told the powers that be. But then, many people in the NHS told them what would happen to changing the OOH service - wouldn't YOU take a minor pay cut for having evening and weekends with your family after doing a 60-hour week? There was no way they'd be able to cover it for the same money - and so it has proven.

[iforget]

DLA criteria is very specific but it is being phased out in favour of PIP which at this stage is a bit of an unknown