Advice

[CAUST3]

I have recently (last week) been formally diagnosed with hughes syndrome (antiphosolipid syndrome) lupus sle and perinotious anaemia, I also have pulmonary infarction and thrombus in both ventricles resulting in heart failure. After a lengthy battle with dwp at tribunal in Feb I was reinstated for esa work related under special circumstances, this is never going to improve and meds are delaying the inevitable my health fluctuates daily- is there any guidelines on esa/pip for this as the last thing I want is my benefits mucked about with if I call and make an enquiry? Thanks

[LupusKaren]

I am so sorry that you are so very unwell, and made to fight the DWP, absolutely disgraceful, but I am glad you have had your benefits restored. I have just used Fightback4Justice, who IMO offer a superb service, if you have FB I recommend you check them out, or there is Benefits and Work. Please note both these organisation do charge a small fee for their material and website, but they make the difference between keeping your benefits or losing them.

[CAUST3 in reply to LupusKaren]

Thank you I will look them up

[AgedCrone]

If you are able, I'd make an appointment to go in to the CAB, they have people well qualified in Benefits who can advise you the actions you should take & what you should avoid.

I do hope they will be able to help you.

[whisperit]

That's a lot to take on board, CAUST3. Hope you feel you are getting the emotional support you need.

From the ESA/PIP point of view, what needs to happen next? Are you looking to upgrade the level of support you receive? or make it more permanent? Or is it simply about informing DWP of your changed health status?

I'm not at all expert in this, but I was recently awarded the enhanced level of support for both care and mobility components of PIP and would be happy to share my experiences if that would help? x

[CAUST3 in reply to whisperit]

Thank you,I know with my anticoagulant management (I'm moving from clexane injections to warfarin) I will be frequenting the hospital at least twice a week and the expense surrounding that potentially may be a pip claim or even a blue badge entitlement but was worried with an enquiry to dwp my benefit would be mucked about with again and tbh I'm not sure whether I should request support group e.s.a

[whisperit in reply to CAUST3]

Yes, that's a very good reason. No matter how these things are supposed to work, it always seems to be that any change or adjustment works out to the claimant's diasadvantage, doesn't it? I'm told you can claim both ESA and PIP at the same time, as PIP is not means-tested, but I would definitely seek advice from someone like the CAB or the Welfare Rights Advisor as AgedCrone and Lupiknits suggest before I spoke to DWP! x

[Lupiknits]

I'm sorry you are having such a struggle. Just to add to the other routes go getting help, if you live where there is a Welfare Rights Officer, I can't praise their professionalism highly enough.

[baba]

I can't help with benefit. For information regarding Hughes Syndrome see the following:

ghic.world/

healthunlocked.com/hughes-s...