As promised I said I would get back and update. My sister picked me up as I'm still in the combined flare and not safe. We were seen at long hanbourgh business park by a physiotherapist. The first thing was I let her know that I was Photosensitive and she pulled down the blinds and switched off the flourecent lights.
I had taken additional information of how both the new conditions of reactive arthritis and Lupus are effecting my abilities to do the simple tasks listed. Such as right now I'm using my little finger to type due to nerve entrapment/damage.
She said 'well I can see that you are having problems and have alot of things to deal with' . So we calmly went through the questions. I told her how my appetite is effected already and not on the lupus drugs yet, how I have issues with my hands and showed her what damage has been done.we talked about me doing a 'self referral' to the rapid access team from social services and the letter confirming this arrived that morning, so we copied that as evidence I was in their system? The same with the appointment letters for MSK and Rhumetology because I'm recently diagnosed and despite the paperwork saying 'don't give copies of appointments' when your newly diagnosed, they ask for info? And I was asked.
I told her how I was under doctors orders 'not to go out into daylight' and she said 'so you should not be here really then?' I said no but given the circumstances, I had no choice in the matter as the rediculous system of sending people appointments to destinations of 120 mile round trip,meant I had reschedule that at the expense of my health put at risk in attending or having to start the process off again due to the silly and over Draconian rules? I should have had a home visit but was denied this on this rulings basis.
We talked about bathroom grants for converting my sheds into a downstairs toilet and shower room due to medical reasons.
We talked about dressing and using a butler device applicator for compression devices and how the swollen feets small joints, ligaments tendons ankels and knees were making that more challenging.
I gave her a list of adaptions and equipment I had compiled. She was very greatfull for the extra information that I brought for the desicion makers and was adding this to the report.
She asked me about doing a squat very hesitantly as she had seen my other conditions and said you can't can you,? I said no. I was asked if in a seated position if I could raise my right leg out as high and straight as possible and showed her the damage caused by the Lupus attacking both my hamstrings meant that I couldn't fully straighten these and slept in bed with the knees bent- she was shocked.
She asked me very hesitantly about 'any thing I like to do? Any hobbies' ? I looked at her. I then said that I'm under house arrest. That when the suns up even in cloudy weather I'm not to go out in this? That means I sit behind closed blinds watching rubbish TV, DVDs, listening to CDs and classic FM? I can't read because of holding book, have tried holder but have now eye/head pains.
I can't wear my hearing aids as the hospital did a poor job of making ear moulds but that a had to cancel 2 appointments to return them and refit the hearing buds due to flare. I told her that I lip read pretty good.
She noticed I was dressed like a bee keeper with a full length dress with sleeves, a light reflective jacket over that,a white pashmenia wrapped around my head and neck and a huge floppy hat with sunglasses.
I had my open elbow crutches as my swine-spine had kicked in.
The meeting took 1.5 hours. The assessor was very understanding, very thorough. We covered all bases in an easy manner. I believe between what I had originally written on my application,my additional information and the assessment, I feel I covered everything including showing her my front fastening bra as my shoulders are frozen? The face to face was very good with this kind lady. We left her typing up my butterfly rash had appeared infront of her!
I now wait for the next 2-3 plus weeks.
The DWP ask for x-rays (that the NHS never releases not even between hospitals), reports from various sources that you won't have access too unless you have been sent a copy, they claim not to want appointment letters but do ask for these.
So my thoughts are if in doubt, bring everything including the kitchen sink. The assessor had a photo copier available as well?
I hope you carefully match your conditions to the pip point scoreboard and gather your nuts in May' as the saying goes and good luck with yours.
Heather x
PIP!
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Pip appeal - great news!
Pip
