To think that getting help in the community for a disability shouldn't be dependant on being a successful claimant of PIP (or DLA)

[BeyondTheLimitsOfAcceptability]

I have psoriatic arthritis, which has gotten gradually worse over the last year and is currently at its worst. I have delayed thinking of myself as "disabled" for as long as possible, but I am struggling, my DH is struggling looking after me and the DCs, and I have to do something.

So I've contacted my local council, explained that I have a long term health problem that affects my life significantly, and they have told me that without me qualifying for DLA (not that I can apply for that now anyway, so I assume they mean PIP too ) they cannot help me, so contact them again when I have had a successful claim. I cant find any relevant charities that operate in my area either btw.

Surely this isn't right? Please someone tell me I've been misinformed? I have now applied for PIP, but I've heard nothing but horror stories about it and its really worrying me.

I have to have some help from somewhere :(

Any other suggestions or advice would be hugely appreciated too

If you're talking about accessing ssd you don't need pip for that. Plenty of people who should have it don't. They often have someone in the department who will assist with applications for benefits to maximise finances .

OP, my DM has the same condition (along with angina) and I have helped her claim. Have you thought of contribution based ESA? DM got this for a year based on her NI contributions and now receives lower rate DLA. Why not apply for that and try DLA in a year or so?

Also, if your DH is struggling then you could contact SS again and insist on an assessment of needs. It's such a painful and debilitating condition. Apologies if I've overlapped any info you've covered.

I'm not looking for work, I didnt think I would be eligable for anything apart from the PIP? Plus I've been a sahm since I had ds1 so imagine my contributions arent enough now anyway?

By the way, I've had a message from homestart, they dont cover my area, the branch closed recently. I also looked at relate as all this shite is putting quite a strain on my marriage. They dont cover my area either.

From the bumpf on the council website, I dont think SS will be able to help :( will ask for a referral though.

Sorry my typing is crappy, my hands are swollen and my brain is frazzled and there are two toddlers trying to climb me!

Your benefits status should be completely independent of your eligibility for a care package. You need a community care assessment, and your husband should get a carers assessment.

I don't know your financial position, but is there any way that you would be able to access a lawyer that specialises in 'Community Care'? (Legal aid is still available for people who qualify financially.)

I work for a community care solicitor (although I am not one myself), and I have seen a lot of people who have been screwed over by social services improve their situation with a few well-placed solicitor's letters.

Are you in contact with Arthritis Care? They may be able to offer you support.

And never, ever feel like you're being a nuisancce to your GP. It's their job! FWIW, if you haven't got around to asking for an OT evaluation, I have HMS, which i regard as an inconvenience, rather than a disability, at the moment, and one of the first things I had, post diagnosis, was an OT assessment. I just saw her in the hospital and she gave me lots of suggestions (largely involving grey vinyl!) but I know people with worse symptoms than I have who have had home visits and have had rails fitted and been given gadgets like a kettle tipper, which help them to do more for themselves, safely.

Thanks! I have looked at the arthritis care website but not spoken to someone before. So I've just emailed the helpline with a link to this thread, hoping they'll understand me not wanting to type it all out again!

I know I'm making a bigger fuss than i should over htis, but I just can't stop worrying. And now Im worrying that my ADs have stop working to make me panic. But then, i guess they dont stop you panicking over genuine issues do they...

Contact DLS, disability law service who will be able to give you quick answers.

I have never claimed so don't get DLA (osteoarthritis in spine, hips (3 replacements) and knees) but did get help from my local council. Some people came to assess my needs and loaned me an indoor walker, outdoor walker and a trolley, before which I used to fall over regularly, sometimes whilst trying to walk with walking stick in one hand and a plate of food in the other. On quite a few occasions the food ended up on the floor. All three items have transformed my life.

They also suggested fitting a lift on the two steps up to my front door which I thought was a bit OTT but I've bought a half step and manage without a lift.

You should go back and get some help.

Good luck.

Beyond, you are not making a bigger fuss over this than you should.

Social services rely on enough people not making a fuss about their decisions to keep their costs down. When people do make a fuss, services get provided. If you want want to get this sorted out, you will have to be less apologetic about things.

I would also worry that when you are assessed you would tend to downplay your issues and limitations, so as not to be a bother. Please ensure that you do not understate the problems your condition cause.

I know what you mean from this thread, but I have the opposite concern, badtime. Iin person I can put on quite a confident act, and I'm worried that (once I know what I'm talking anout!) I would give off the impression of someone who knows the "correct" answers to give, rather than someone who downplays.
I guess it comes from a long history of health anxiety with other things, being quite aware of health issues and biology, and knowing the background of what I'm talking about. And now I'm waffling! But its quite therapeutic

doubleLife is absolutely correct - not being in receipt of DLA should not be a barrier to LA assistance.

I went into this quite deeply when a very disabled colleague was refused a Blue Badge because she did not receive DLA mobility component. She did not want to claim DLA. After complaining to the council about their (illegal) policy she was correctly assessed for a Blue Badge.

There was one "contact us" email (I don't do well on the phone anymore - anxiety) which is who I contacted, plus I found a separate one to ask about gym membership as I was advised to swim to help my joints, but both told me all assistance is DLA dependant.

That doesn't sound right as my dh was given vouchers for gym membership when he was diagnosed with diabetes (it doesn't pay for all of it but you get a reduced rate). He was referred by his GP and doesn't get DLA or anything.

I've since had another email from the council saying that a doctors letter is good enough for everything, I contacted DLS so wonder if they queried it on my behalf

So, doctors appt to ask for a letter, which I'll photocopy and send off to everyone :)

And I'll ask about SS and OT referrals, as well as the gym while I'm there

Oh and btw, the arthrirtis uk person I spoke to read the thread and said you are all lovely!