- This topic has 92 replies, 3 voices, and was last updated 2 years, 4 months ago by Georgie.
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- June 27, 2021 at 1:27 pm #156416brydo
It’s been a catastrophic 18 months and if your reading this then, fingers crossed, you’ve survived the worse. Pandemic aside most people on this forum will be suffering from other ailments and, without giving personal details, I think its good to talk about health issues.
I am fortunate to be relatively healthy, bar I minor heart problem, but mentally this past year or so have been a bit of a struggle but thankfully I’m coming through it.
So how the hell are you?
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- July 27, 2021 at 3:58 pm #159978
As ever, painfully slow and frustrating. Sympathies, Phaedra. Hopefully you’ll get somewhere. Good luck.
July 27, 2021 at 10:15 pm #160025Indeedย ๐
Doctors today, 5 goes at getting blood and the stupid POD machine still couldn’t get my height correct (I’m 6′ 5-1/2″ or 1.97m, last time it said I was 1.75m, this time 2.02m ๐ So either 9″ too low or 2″ too high!!
It was weird listening to my heart when it did my bolold pressure, bump, bump bump bump then bump, bump bump bump bump, not a repeatable normal rythm in sight!
Back again tomorrow for diabetic foot clinic and blood results then a telephobe appointment with an actual doctor on Friday afternoon.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
July 30, 2021 at 12:13 am #160155So, good news is my blood sugar is better than it has been for a long time ๐
Not so good news is my cholesterol is high enough to need a chat with the doc, never has been before.ย Also a high Serum urea level, I suspect these are linked to my Atrial fibrillation and the kidney meds my doc put me on a couple of months ago, they don’t do what they were supposed to do just make me pee slower!.
I have a tel. appointment tomorrow afternoon already booked so will add those to the list!.
In better news, we finished the over-the-phone form filling with the lady who’b going to be my sons support co-ordinator and are having a face to face meeting with her next week.ย We also heard back from the housing prople and have a viewing for the flat next Wednesday morning.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
July 30, 2021 at 12:55 pm #160195GeorgieHa!ย Has ‘that chat’ with my GP this very morning.ย It must have been very frustrating for him – an inactive, over-weight, middle-aged disabled woman and all he could find to hassle me about was slightly raised cholesterol level.
Hope the ticker settles down and you can get the . . . ‘other issue’ sorted. ๐
Regarding your son’s Support co-ordinator – do you or your son get a copy of all these forms?ย Even though it seems she’s ‘on his side’, it might be good to be able to double-check the details, especially if future decisions could be based on what’s been recorded.
Just won’drin’.
July 30, 2021 at 1:31 pm #160208Hi Georgie ๐
Hopefully we’ll get everything when we arrange a meeting with her.ย The housing lady said she’d emai over the house documents but not received anything so far.
Just waiting for the Doc to ring, should be a fun conversation ๐
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
July 30, 2021 at 9:20 pm #160254Can’t edit so small update.
Spoke to Doc, he’s changed a couple of my meds to see if that stops me leaking!!.ย He’s not at all happy with the combination of high bad cholesterol, Atrial Fibrilation and diabetes so now going on statins as well.
Could have been worse, at least my blood sugar is good ๐
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
July 31, 2021 at 8:54 am #160261Good luck, Phaedra. Sounds hideously complicated. One small word of warning – watch the statins carefully. Mrs T was on one (forget the name) which made her pass out and very badly affected kidney function.
July 31, 2021 at 12:22 pm #160282@Tharg – A lot of my friends are on them, I’m compiling a list of which one’s they recommend and which to avoid!
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 4, 2021 at 4:44 pm #160672Well, went to see the flat with my son this morning.
First the good news, it’s in a really quiet area ๐ Now the bad news, it’s not an upstairs flat, apparently they listed 2 for rent (we only ever saw 1) and the updstairs one has gone.
It’s not a bad flat (apart from being downstairs, we could hear the man upstairs clumping about!) Tbed room is OK just needs a coat of paint and a bit of touching up.ย Living room is worse, 2 walls need properly finishing/skimming as there are patches of rough plaster where they have worked on them.ย The chimney breast is a mess, they’ve took the fire out, no hearth fitted and replaced the wall with a wooden board up to about 18″ from the ceiling where it goes back to brickwork.ย It’s very rough and not a great fit, needs good seeing to!.
The shower room is OK, seperate toilet is small but functional (someone had kindly left a “present” in it and not flushed! ๐
There’s no gas connection for a cooker, only electric so we’d have to fit a piece of worktop and put a hob in for him along with a combi microwave to cook with.
Apart from the kitchen and wet room all the other areas need flooring, all the rooms need nets, curtains/blinds etc.
My son isn’t sure and is having a think about it.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 4, 2021 at 5:17 pm #160676GeorgieHow much work do the HA intend to get done before he moves in?ย Because it’s clearly not fit for habitation at the moment.
August 4, 2021 at 6:56 pm #160684None at all, as far as they’re concerned it’s good enough as is.ย I took a few photos and am just waiting for my friend to have a llok at them and see just how much work needs doing, if it’s mainly cosmetic then that’s OK.
When I said “no flooring” I meant carpets etc.ย The kitchen and wet room have vinyl laid down.ย We should be able to get a grant towards some of the stuff he needs but they insist on getting the carpets from Frank’s Factory Flooring which is basically cheap rubbish or very over priced for anything decent.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 5, 2021 at 8:12 am #160697Oh, Phaedra, that all sounds a bit rough. Cant’t believe that the HA expect you to do all the work! Good luck with it all.
August 5, 2021 at 10:24 am #160706GeorgieI know that when my older brother moved into his HA bungalow the first thing my sister did was cleaned absolutely everything – walls, ceiling, floors, paintwork, cupboards, cooker, bed, bathroom, plus she Vaxxed all the carpets and then she repainted the walls.
August 5, 2021 at 1:44 pm #160722So, he’s agreed he’ll have to move out at some point if anything happens to me so may be better to try it now while I’m still around to help him through it.
I’m now waiting for a call back from the HA to arrange to collect the keys.ย I also need them to apply to Universal Credit to have his rent paid directly to them, one less thing for him to deal with.
My friend took a look at the photo’s and says it’s a bit of a mess but looks worse than it actually is, just some cosmetic stuff to do, new sheet of plasterboard over the chimney breast and some painting etc..
Then arrange carpeting (only 2 rooms) either through the grant or we may pay for the same carpet tiles we have here, 15mm thick with sound deadening backing, really comfortable, warm and hard wearing, about ยฃ14/SqM so around ยฃ420.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 5, 2021 at 3:45 pm #160742GeorgieI feel sorry for those who don’t have any family to help out.
August 6, 2021 at 4:31 pm #160817We have the keys!, no key for the main building door but she’s going to get 1 cut and pop it in his letterbox!.
Took him for a walk down to Durham (only 10mins) and bought him lunch and a pint, walked back up to the flat (all uphill!) and I’m now worn out! but still have lots to do.
I’ve spent the last 3 hours trying to fill in the housing benefit claim, Universal Credit change of circumstances form etc. etc.ย There are sections on both where none of the answers fit his cicumstances.ย His new support worker is going to talk to his housing association and see if she can sort out his housing/council tax benefit for us.
I’m currently on hold with UC (45mins) waiting to tell them that I can’t put a figure in for “services charges” on top of his rent as he doesn’t have any and” nothing” or “ยฃ00.00” isn’t a valid entry and prevents me completing the online form.ย I also have nowhere on it to tell them that his HA will be requesting payment of his rent directly to them as he won’t remember to pay it to them if it gets added to his UC payment.
Oh the fun of it!ย Busy doing some online shopping for him while I’m on hold, so far I’m up to over ยฃ100 just for 3 net curtains and 3 roller blinds!, can’t do much else as having had a better look round today all the walls need some filling/smoothing and painting etc. so no carpets or furniture in until that’s done!,ย It’s going to be a busy couple of months I think ๐
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 10, 2021 at 7:02 pm #161266Some progress, managed to get Universal Credit to agree to pay his housing benefit directly to the housing association.ย Tried 5 or 6 times to use the coucils online council tax calculator and application, every time it came up he’d only get about ยฃ6 discount.ย His new support worker arranges a 3 way call between her, me and the housing benefits department, went over exactly the same questions and gave exactly the same answers and after 58 minutes on the phone they agreed he was entitled to full benefit ๐
So, his support worker has submitted the “Moving in furniture and appliances etc.”grant application (after I’ve now spent almost ยฃ900 on stuff for him already!) and hopefully he’ll qualify.ย I got a good deal from my friend at the DIY store he runs, 10L of silk emulsion, couple of rolls of wallpapper, adhesive etc. for ยฃ10!!.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 11, 2021 at 4:20 pm #161409Georgie” His new support worker arranges a 3 way call between her, me and the housing benefits department, went over exactly the same questions and gave exactly the same answers and after 58 minutes on the phone they agreed he was entitled to full benefit ๐”
Funny, that.ย Much the same way that people get refused higher rates of PIP until they get an official Advocate on their side – at which point the ‘scores’ magically rise to the correct level and the applicant gets what they need.
Still, as you say, “progress”.ย Just remember to buy your friend with the DIY store a pint some time. ๐
August 11, 2021 at 6:12 pm #161417Yes indeed ๐
So far I have his housing benefit, council tax benefit and gas & electric account set up.ย Waiting to hear back about the furnishing grant and sent in a quote from the carpet people, ยฃ478 to do 2 rooms!, the council grant is for a max of ยฃ250.ย It’s only 25 SqM so I’ve asked for a quote for just the living room.
I can get the same 15mm thick insulated heavy duty carpet tiles we have here for about ยฃ8.00 SqM so his bedroom would only cost about ยฃ95 and I’m sure they’ll be better quality than the carpet they’ll be putting in.
Nets, blinds, light fittings, pots & pans, dinner set and other essentials arriving in dribs and drabs this week so we’re on the way, just got to paint/decorate the living room and his bedroom befroe the flooring goes in.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 11, 2021 at 6:59 pm #161422Well done. Phaedra. You are an absolute hero to go through all this. I do know the trauma of trying to get The Establishment to act reasonably. All that and the decorating etc. Hope all continues to go well for you all.
August 11, 2021 at 7:11 pm #161427ajn<p style=”text-align: left;”>Yes agree Tharg, totally admire your grit Phaedra..</p>
August 14, 2021 at 6:24 pm #161792Nets and roller blinds are up!, very hard work from when I did it in my house about 8/9 years ago, 3 hours work and I was totally worn out!.
Paint isn’t great, it’s Leyland trade emulsion, first coat over the brownish plaster patches was almost see through, looked better today after it had dried.ย I’ve put a second coat on them today and will check it again tomorrow.ย I have to be there Monday morning for the gas turn on and test so I have a painter/decorator coming to give me a quote, I don’t think I’m able to do it myself after all.
Hopefully these photos will post, back door in the kitchen showing the plaster work (before painting), there are patches like that in all three rooms where they patched the place up and the chimney breast/fireplace.
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
August 15, 2021 at 8:11 am #161925Got your work cut out there, Phaedra. Still, at least the plastering is done. Take care.
August 15, 2021 at 10:34 am #161939GeorgieFrankly the HA have a bloody nerve making their disabled residents decorate and carpet their properties for them.ย As I said before, I feel sorry for those who donโt have any family to help out.ย Imagine the state of the un-redecorated, unimproved properties they’re expected to live in.
August 19, 2021 at 8:03 pm #162368Well, two decorators failed to turn up to give me a quote so that’s helped a lot!
Had a 3 way call with the council this afternoon and the girl who’s helping him/us.ย We applied for a grant to help him move in, upto ยฃ500 towards furniture, appliances, bed etc. and up to ยฃ250 towards carpeting (which for 2 rooms we were quoted almost ยฃ500 by their preferred supplier!).ย What a surprise he’s not getting a penny, nothing at all.
Apparently even though I’m doing exactly the right thing by getting him housed and supported while I’m still here to help as he’s not being kicked out and can stay here he doesn’t qualify.ย However, if I die tomorrow and my HA kick him out or move him (which they will) he can re-apply!.
How can a young man who needs support not be eligible?, I really shouldn’t be surprised, since he was diagnosed 16 years ago we’ve had no help from anyone.ย The last time we saw someone from Social Services was about 8 years ago, they said they couldn’t do anything for him and closed his case.ย That said they’d not done anything in the preceeding 8yrs anyway!.
Angry really doesn’t cover it ๐
Please excuse spelling/typos. Apart from being a clot it turns out I had one on my cerebellum that's now causing various problems!
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