PIP - Benefit

[Sunnyvale21]

why is APS, not recognised as a disability when we could have a clot, stroke, heart of TIAs anytime?

[Star13]

the majority of “conditions” are not listed as such as recognised because the only recognise the “effects” of the condition and how it deals with your day to day living. Someone with APS may take medication and have a relatively normal life, whilst another person could have had strokes as you mention, and be severely affected. That would be the case for many conditions too.

[HollyHeski Administrator]

Sadly PIP is related to the after effects of strokes, heart issues and movement etc.I have had strokes, full and TIAs, also have constant pain with Sjrogens- never made a claim, as I don't give in and keep going, that's not recognised, again sadly. To get a claim through, is so hard, so demoralising, so injustice that on top of what I cope with I can't put myself through more.

APS effects us all in different ways, more deliberating for some than others after strokes etc that it's the effects of the illness rather than having it that's judged on.

[daisyd in reply to HollyHeski]

I applied for pip hadn’t wanted to for years gave in and got it, just a form and a telephone interview, because my husband has to do so much for me in fact almost everything I think he deserves it, it will help with taxi fares take aways, day out for a break. Go for it I say

[snorkle272]

I have often wondered the exact same thing. I live in Canada where we do make compensation for many illnesses. I too have had strokes but they haven’t “disabled me enough” to qualify for healthcare support. The not disabled enough is a good thing, but benefits could have helped offset the costs travelling from place to place, seeing the proper medical professionals.

I believe too that like many other illnesses, that there are many uneducated physicians who don’t believe APS is a real medical illness. So I believe, that financial help will be a long time coming.

[dillty]

I also live in Canada, in Ontario, and am desperate for a second opinion but cannot find doctors who know about APS. I was also told that I had a possible TIA but not definitive. Without definitive diagnosis, I do not fit criteria for APS diagnosis of having a major (or any) clotting event. Could you tell me who you have seen that you were pleased with and where they were? I am prepared to travel if need be. Thank you.

[Bloodredroses in reply to dillty]

London Bridge Clinic , Prof Hughes ( Yes Hughes Syndrome ) retired but his foundation has made a light in APS diagnosis is my impression . ( living in London ) Seeing him speak. I have been adequately and well treated by my diagnosis and treatment by Haematology Clinic at UCLH for my APS , but now overlaps with Sjrogens , hit a diagnosis brick wall. London Clinic is on my destination goal. I believe it gets patients fly in from all over the world . A call 📞 would be first . Good luck , great trip ✈️ .

you could have a wonderful London holiday ( off season flights hotels etc) at sane time .

[snorkle272 in reply to dillty]

Around the London, Ontario area there are a group of doctors who are specialized in APS and are supposed to be helpful. I don’t know where in Canada you are located, but maybe this will give you a place to start. I don’t know who they are so that is all the hope I can offer. You can probably look at a registry of physicians for your province or territory to see who the specialists are.

I had to pay for private health care initially when I first started out on my APS journey almost 20 years ago.

Good luck to you.

[dillty in reply to snorkle272]

thank you for the lead. I live in the Toronto area, so I will try googling for drs in the London area. If you have any more information that may be helpful, I’d appreciate you passing it on. Thanks again.

[snorkle272 in reply to dillty]

I actually saw a great team at McMaster hospital, Hamilton, initially, and for many years after. It was with the hematology unit. Unfortunately once Dr. Arnold left, that was the end of my access to them. But they had a great department studying both my blood and my family history. I would definitely try there first.

[dillty in reply to snorkle272]

thank you so much. I will follow up on this. Take care.

[snorkle272 in reply to dillty]

Good luck. And you take care as well.

[dawnzy]

Recently the NHS have accepted APS as a long term illness but personally the Government ie PiP has a better understanding of the condition and it's individual effects on each individual person. I must say though you must base this on your worst days not your best.

[dawnzy]

P.s I've also heard that the PIP is might be going means tested in the near future ????

[Star13 in reply to dawnzy]

That’s been denied by the government. See here:

benefitsandwork.co.uk/news/...

[Bloodredroses]

Yes I agree, during Covid Vaccine program, APS even though autoimmune , not on vulnerable groups unless immunosuppressed . covid danger is clots , APS is all about clots . My Haematologist (leading in UK ) agreed but said it is Judy the way NHS decided . Again I feel , APS not understood , not bothering to find out .