PA advice please

NJC

after a year ive finaly been diagnosed with psoriatic arthritis.. its new to me and im just getting used to pronouncing it let alone living with it!.. im to start sulfasalazine this week. the council are willing to look into my housing needs, ie toilet frame etc and maybe even consider a shower unit.. but im confused about the other help i can get.. i know i should try wrist supports but my doctors surgery said these are not available on presciption and i have to buy them.. im holding down a 16hr week job, at the moment, and have an 18yr old son at college, so i get tax credits (both 'working' and 'child') and obviously wages.. if i was to claim DLA would i loose these?, it seems i have to be in receipt of some benefit to get any real help?? and who can i ask to get honest un bias answers that dont make it seem that i am just scrounging.. i just want to get some practical help and pay for things that may make my make life easier for me..sorry if this is a ramble.. its my first post.. thanks for reading

stickywicket

Hi NJC and welcome to the forum. Mine’s RA which is similar to PA in that both are auto-immune diseases. I hope the Sulfasalazine will help soon with yours.

I don’t know much about what stuff councils will/won’t provide. An Occupational Therapist who recently visited me told me that ‘they’ will usually provide stuff up to the value of £1,000 without a means test. This would cover grab rails, raised loo seat and frame etc. I don’t know if this is nationwide.

Wrist supports can be a very useful aid but they shouldn’t be used for long periods otherwise the muscles pack in. I’d have thought your rheumatology consultant would have prescribed them if (s)he felt they would be suitable for you. Mine did. I don’t think GPs prescribe them. You can buy them from any disability catalogue or website but I don’t know how good these ones are.

Sorry, I can’t help with the working or financial stuff. I’m sure others will. Maybe if you also put this on the ‘Working Matters’ forum?

frogmorton

Hi NJC

Good to meet you

I agree with you about the pronounciation of PA!!!! I thought the same or rather similar about the spelling of a rheumatologist!!!!!

DLA is non-contributionary meaning that it is irrelavant to what you do or don't earn.

If in doubt send off for the forms then get CAB to help you fill them in. DO NOT try this alone They are getting really tough on claimants atm.

Good luck hope to see you again

Love

Toni xx

tillytop

Hello and welcome from me too!

I am sorry to hear about your diagnosis - it is a lot to get your head around I know.

I can't help on the benefits side I'm afraid but have you considered calling the Arthritis Care Helpline (number at the top of the page) because they may well be able to advise, or to point you in the right direction.

Re the splints - as Stickywicket says, it would normally, I think, be the rheumatologist who organises these. My rheumatologist referred me to an occupational therapist who fitted the splints and also made a custom-made splint for night-time use. Whilst you can buy the splints, as you say, my concern is that if you don't get the right ones for you, you could make your wrists worse rather than better. My suggestion would be that you contact the rheumatology dept and ask one of the rheumatology nurses for advice.

Thinking of you.

Love Tillyxxx

dorcas

Hi NJC and welcome to the forum

I too have PA and I agree that after getting a diagnosis it does take time to get your head 'round it all. :!:

You've had great advice from the other peeps here already... so the only additional advice I'd offer is that you could phone one of the disability helplines for advice on benefit entitlement?
I've posted you a link to the directgov website page for disability ... on the lower right hand side is a tab that will take you to a list of disability contacts which I hope is helpful.
http://www.direct.gov.uk/en/DisabledPeople/index.htm

also...a link to the Publications Page of AC. Some very good information there on work and your rights!
http://www.arthritiscare.org.uk/PublicationsandResources/Workindependence

hope to see you posting...

Iris xxx

lalla

Hi, welcome , know how you feel. I was fortunate to go on a patient education programme run at my local hospital via rheumatologist,it was offered a year after diagnosis, really wished it had been on diagnosis, I found it invaluable meeting fellow sufferers, learning ways too cope and modify activities, pain control ,drug treatments,podiatry, relaxation, and who to contact for items such as splints(occupational therapist) . Someone came from the benefits office with lots of advice and support also had a family night where those nearest to us were able to come and discuss how they felt taking on a different(and more supportive role).It was reassuring to know how others coped both physically and emotionally .Perhaps you can ask your rheumy if there is one near you. Take care

NJC

stickywicket,frogmorton,tillytop and dorcas... thank you, thank you, thank you..!! you have between you given me much help and somewhere to start my search for help.. what a great website this is!!.. i shall let you know how i get on, and i realise now i should have posted this on the work matters page as well... ive a lot to learn about 'forums' too.!! thanks again.x

skezier

Hi HJC,

Glad you found the forum cus they are a good lot here.

Can't help with the benefits side I am afraid but I am sure you can get some help via ot as well as the good advice the others have left you.

I got pa and its gone for my hands and wrists a fair bit. I also have oa in there and am never sure which does what to be honest but the pa has the edge on the oa still.

My runo thinks cus of my 'job' splints wouldn't be a good idea... not sure why night ones would be but he has ruled them out to a degree. What I use is the cheap ones from poundland and a lot of tubigrip doubled over or 2x double if they are really bad. It does help and might be worth a try for the interim time?

There are some good supports you can get as well and they again might be worth trying in the interim. Nice to meet you and hope you can sort some things out. Cris x