Brian: Hi all. I have just had my pip medical at home... - NRAS

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Brian

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Hi all. I have just had my pip medical at home. It was booked at one but they turned up one and half hours early. I was asked to go out, promised to be back for one. Good thing I never went out. If they had come at one I would have been on my own but my wife was here getting ready to go to work. He asked me a load of questions about my Ra, what meds, what aids, how far I could walk. He asked me to show him my meds I had to get up and get them. My injections are in the fridge on the top shelf which can't reach so I asked him to get them, showing where they were and I couldn't reach them. He got them. He asked if I could uß the bus, I said no way, can't get to bus stop or get on bus, seats are to low. There was question's I thought they were going to ask like if I could get dressed or wash or pick things up. I didn't want to answer things I wasn't asked but should I have given information not asked. I know they are not out to trick you but you hear of people giving info not needed and making it worse. Are well all I have to do now is wait. 

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sylvi profile image
sylvi

Glad its out of the way for you and i hope you are successful.xxxx

allanah profile image
allanah

Good luck yeah xx 

Janet28 profile image
Janet28

Awww that sounds like it was quite stressful. I don't envy you having to go through that and I'm certainly not looking forward to mine. It's making me cringe with embarrassment thinking about it.

As you say, I'm sure it's all about trying to trick you and its all very intimidating really. It's like, your ill unfortunately, you take medication, so are they saying your GPs word of meds list is not enough. Then your head isn't always in a place (because of pain) to remember things and say the right thing.

Surely they should do a lot more to lesson the stress of this whole procedure.

I would have thought the long menu of drugs most of us are taking and have been taking for years should be enough proof in itself.!

Anyway Brian thanks for that heads up and do let us know how it goes.

Peace, Luv n light

Jan ☺

DelicateInput profile image
DelicateInput in reply to Janet28

What I don't understand about RA drugs is that there are so many posts saying that they work, yet the same people are claiming PIP.  They sure can't work very well.  I also wondered whether any consideration is given to people who live alone.  If you have someone living with you, it would make a lot of tasks like dressing and preparing food a lot easier.

farm123 profile image
farm123 in reply to DelicateInput

Personally for me although I cannot perform as a normal person would with the RD drugs without them I am far far worse as I found out for 2 years when I was without an effective drug as several would not work for me.  It is also the damage caused by constant swelling which with the drugs is reduced.    I don't think anything is made of your living circumstances but for me at under 50 I do not want or expect to have someone else to help dress and prepare food for me and it is extremely hard to have to accept that help from OH or my children.  Farm

nomoreheels profile image
nomoreheels in reply to DelicateInput

Oh but they do, for me anyway, 3 months with no meds proved that to me, when I had to have my otherwise loose wedding ring cut off because my finger was turning blue! But it's the damage or weakness which has already been caused often which helps as far as PIP is concerned. Don't forget that before we're aware we could have had it years & the damage has been silent. Useful gadgets to help weak hands don't often come cheap, PIP helps there! My drugs stop me from having inflamed joints but it's about more than that. Don't forget many of us also have secondary conditions, OA for example, no cure as with RD but neither are there any specialist meds as there as for RD so it's progressive & it's blinkin painful without suitable pain relief. I also have a Blue Badge, being on meds doesn't mean you can't be considered if you have need. Despite my meds working well for the rest of my body & my blood results being within acceptable range I continued to have disease activity in my ankles & feet for 2 years which at times make walking painful & difficult, it's on those days I use my Blue Badge.

The whole idea of PIP is to help the recipient have some independence, or as much as can be, having someone living with you isn't relative.

DelicateInput profile image
DelicateInput in reply to nomoreheels

I think having someone living with you is relative.  I live on my own and for quite a time could not do anything, including writing my name and getting dressed (pulling zips, buttoning garments, putting on a bra or tights).  I used to stand at the station every morning and someone asked me if I would like them to zip me up, and I pretended I hadn't realised.  I could not put on a watch or ear-rings, turn the key in the door (had to ask passers by), fill a kettle, pour a cup of tea, etc.   All of this would have been alleviated by having someone at home.  I had to get the window cleaner to clean the floors.  The pain was severe but it was the least of my worries.

nomoreheels profile image
nomoreheels in reply to DelicateInput

Not relative to applying for or being awarded PIP I mean. It doesn't qualify you for a carer, not like Attendance Allowance where it could help with carers to come in & shower you or dress you. It could count as additional points for appliances needed if you can use them for showering etc, if you don't have anyone, like my h who showers with me to wash my bottom half & back. So yes, having someone at home to help you is relative to aid you getting washed & dressed etc but having someone at home doesn't mean you're less likely to be awarded PIP, there's much more to it that that. Have you applied for PIP, I mean have you read the application form?

I hope your pain has eased, also your worries.

smithfield profile image
smithfield in reply to DelicateInput

Yes I struggle if someone is well maintained do they still qualify for PIP?

I am only guessing but probably not if you get the award it would be for you to pay for someone. But as I say I am only guessing.

Being on your own must be difficult most of us on here could not manage without our partners support.

DelicateInput profile image
DelicateInput in reply to smithfield

I did wonder initially.  I was seriously disabled.  After various treatment (ultrasound cortisone injection, electro acupuncture, Chinese herbal tablets, patches and topical oil, hydroxychloroquine) I am relatively OK at the moment.  My mother had RA, and I think I had an episode of it when young.  Both times, it cleared up after 6 months.  However, when I passed the six month period and it was getting more widespread, I was seriously worried for a while.  The GP classed it as a minor ailment and just laughed when I said I could not write my name, do various tasks.  I know I would not qualify now but I just don't know how I would have coped if it had not cleared up substantially.  I just couldn't.  I would have had to pay various people but i do not have an unlimited income to do this.

I had an awful reaction to hydroxychlorine.   However, I have a long standing chest problem (12 years) and it flared up into pneumonia.  I had to stop taking the HCL after 21 days so I did not derive full benefit from it.  The NHS just does not seem to bother about anything unless you look as if you are dying.

nomoreheels profile image
nomoreheels in reply to smithfield

PIP as it is intended is for anyone who needs help with the extra costs of living with a long-term health condition or disability. It's to help us remain as independent as we can, so really useful for anything you need that you wouldn't ordinarily need if you didn't have your chronic diseases Smithfield. Some use it to pay for someone to help with cleaning, ironing, gardening or the more basic things like stuff to help you open a jar or bottle.

flow4 profile image
flow4 in reply to nomoreheels

Nomoreheels, I'm afraid that's not quite right - I wish it was. You have to struggle substantially before you qualify for PIP; you must score 8 points across several areas of daily living, including getting washed, getting dressed, using the toilet and cooking for yourself. To score any points at all, you must struggle to do these things and need help from someone else, or aids/appliances. You don't score any points at all for problems with cleaning, ironing, shopping, gardening, etc. Once you are awarded PIP you can spend it however you like, including on a cleaner if you like, at the moment at least. 

nomoreheels profile image
nomoreheels in reply to flow4

Oh I agree, it may not in reality, that's why I said as it is intended. No, points aren't awarded for the things I said, just some use theirs to pay for those things.

flow4 profile image
flow4 in reply to smithfield

Delicateinput, I'm sorry you struggled so much and I'm glad you're better now. I'm a single parent, and before I was diagnosed and treated, I got really bad. There were days I couldn't get dressed at all (I could hardly ask my boys to get). There were weeks and months when I couldn't use my over-the-bath shower, and went to the sports centre where they had a walk-in one. I have been treated for 4 months now and am not struggling anything like so much, though I do still have some problems (tins, jars, bras!)... The same thing has occurred to me - ie that if I continue to improve like this, I will no longer qualify for PIP. At the moment, it's not clear how much better I will get, because I have permanent joint damage that was caused before I was diagnosed. I suspect, for example, that I will never be able to walk without pain again.

Just for info, smithfield, PIP assesses what you are able to do - so if you become able to do a lot of things you couldn't do before, you would no longer qualify.

smithfield profile image
smithfield in reply to flow4

Thanks flow 4 My RA has deteriorating quickly as is the pain. I have hand and feet damage and can manage some but not all daily living tasks and I like you do not think I will ever walk properly again without taking baby steps and pain free.

But my query was when I start biologics and hopefully improve ,albeit the long term damage will not will I then have to be assessed again.

I guess the answer is I will have to wait and see how it all works out.

nomoreheels profile image
nomoreheels

Well at least that's over Brian but that wasn't on being so early. We're advised by disability & help sites just to answer as asked, concisely, don't go into detail so I think you did right. Seems odd he wanted to see your meds, unless you didn't include a copy of your repeat script?

I hope it is not too long before you hear back.

Crusee profile image
Crusee

It's out of the way now Brian.

Hope the outcome is successful.Fingers crossed for you....

Crusee

bigfattoe11 profile image
bigfattoe11

Yes good luck they asked for my meds too and listed them into computor...so i guess it all depends on your condition i guess...you said right things hope its a welcome outcome for you...

smithfield profile image
smithfield

Glad it is done.And the best of luck hope it is successful

Did they check you on the stairs if you have any.

It is a bit unnerving when they arrive an hour and a half early.

Take Care.

flow4 profile image
flow4

Glad it's done Brian! Sounds like it went ok. Fingers crossed!

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