Council housing for disabled parents -part2, is this hopeless?

[DoubleLifeIsALifeHalved]

So turns out the dept that was supposed to locate a suitable (adapted) home for me & Ds has never done this, will never do it & she (kindly) laughed in my face when I told her that's what I'd been referred to them for :(

Cut a long story short all this new support worker can do is 'help me fill out the forms' for housing register... Not find me a suitable place / one that can be made suitable according to the spec my council OT sent them, incl a room for ds (so i can make my bedroom easy for me vs childproof for him), & a room for a live in carer.

Huge blow :( was my last hope. Am trapped inside a one bed flat i cant even afford, w steps each side & no space/ permission for any modifications needed, no access to bath/ shower & limited access to toilet. People 'carers' steal from me when they come round as I can't keep track of things & they use the clutteredness & not putting things where I can get to them as cover for themselves... My mattress has gone moldy cos is damp in here & everything cramped so I fall cos can't twist properly. I cosleep with Ds as its the only way I can look after him/ ensure his safety during the night.

Basically was told to hope where there is no hope, & I can't see any future.

Was told I'll be in band b as that's where all disabled people are. I won't be able to view properties or bid on them if it's too much clicking/ reading. They laughed at idea of a 3 bed flat, let alone an accessible one.

I can't live like this... But I need to know honestly... There's no hope of me ever getting housing is there?

just had a look, aortic splitting is the EDS4 problem (and probably led to the aortic anyeurism my sister died of), not type 3 though, so i don't think you have to worry about that one - only the thousands of other things!

i am weighing up what to do next with the medical side of things, which i need to start focusing on again, so just posted in chat if anyone felt like coming and lending their ears to the dilemma of the week...

ugh, i am chasing my tail over what do next, everything is urgent, important and impacting my life... housing, carers, healthcare, direct payments, bankrupcy, work, damp, ds ......

Dr Will Wallis, Cardiac complications in HEDS, was the speaker, he said aortic split was possible in EDSIII.

Oh dear :( will look him up...

What I am getting from both stanmore & uch is that eds 3 = hypermobility & that really down plays the whole thing doesn't it...

Yes they are the same. He works at West Herts at Watford General.

The Prof' I seen was quite thorough in telling me about EDS III, obviously it is not just hypermobility or it would just be classed as HMS. He had said the problem is a defect in the collagen we make, which in turn affects many other things such as having IBS, POTS or the other main one, mitral valve prolapse which is particularly common and I think we will be looking at that with me as I have heart problems (arrythmias) but at the moment cannot find the cause.

I haven't been able to find that thread yet! I will have a look through my PM's as at some point some lovely posters have sent me the link but it was a while ago.

I think the problems come now that EDSIII has mainly been reclassified to be EDSHMS so might not include some of the other symptoms such as skin involvement.

I will go look for your other thread just now, I hope you are starting to feel a little better, just try and take things slowly. I know thinking like that doesn't help but if you feel in a rush then things might get missed.

Morning Schro
My Carr Gomm lady has just left.
I asked her about your situation, and she said that Glasgow works differently.
Here, she deals with all problems, but in Glasgow they have different offices for different things, so perhaps you got one which doesn't do housing.
She said to go to your Council, say you need housing support and wondered if Carr Gomm could help.

Morning Netto.
Thank you for that, I will do that. I think everything is closed today isn't it? For September weekend?

interesting, mine is called anything from 'benign joint hyper mobility syndrome' (most rubbish and unfactual name in the world!), or EDS 3... it certainly effects me a lot more than just the joint/ ligament stuff, so i find the names rte ally unhelpful. what the geneticists ACTUALLY said was that i have a lot of collagen packing abnormalities which show up under the initial tests for EDS4, but i don't have the genetic marker for eds 4, am being tested for marfins (waiting, waiting) but in the absence of any other name they are calling it EDS3. This got translated into 'benign joint hyper mobility syndrome' by the rheum at uch which is a name that instantly stops anyone taking anything i have seriously :-(

i also have POTS & autonomic dysfunction (waiting list), fibro, slow healing and much scarring skin, varicose veins, stomach problems and urine problems, sleep apenea, chronic fatigue and energy problems and a ginourmous list of all the specific bits wrong and subluxing and shrinking and injuring... but noooo, calling it minimising and inaccurate names is fine and dandy, really :-(

the reason i loathe hyper mobility is no one (incl doctors in my experience) differentiate HMS from having one joint being hypermobile... and fall into the great pit of assumptions that being hyper mobile can mean being an athlete or disabled depending on the individual (and blamed on the individual too! there seems to be a lot of rubbish about it being because people have 'let' themselves get like this and their fault if they can't get out of it... which is very dangerous in my opinion)

no one posted yet on my chat thread - its about what shall i do about stanmore & it not being accessible for me thread...

Yep, all shut.
I should be getting to see my new flat this week, and have found out today, that they are putting a new kitchen and bathroom in before I move in.
I'm so excited, and it's all down to Carr Gomm's help.

Right okay, calling it BJHMS will really hinder the way people think of your condition, this was my problem and it really is a very big problem so the first thing you should do is try and force a specific diagnosis. It was the Rheum who diagnosed me with that and said I scored 6/9 on the beighton score. Load of shit, seen the specialist, I score 8/9 only losing a point with one knee, he told me this would be affecting how people were treating me.

I have been tested for POTS as have been hospitalised 3 times with raised heartrate and lowered blood pressure but had the tilt test recently and my BP didn't drop so I think they will probably look at MVP next. POTS is a big sign of EDS but it can also come with Fibro too but then that also comes with EDS, it's very confusing. The slow healing and scarring skin should be a really obvious factor along with the subluxing etc, I think you are being really mishandled and you should write a complaint.

You're right about the way people look at HMS, the Prof' had said that GP's and most Dr's don't really know much about it so just generalise it which isn't helpful, also that I was probably having problems as I am quite knowledgable about the condition, it's effects, rare treatments etc so they may have felt threatened. Could this be a problem for you?

Netto I hope it works out well, you will be loving the brand new kitchen wont you!? :o

Have you a link, i can't find it

Yes, very excited about the kitchen!
I want a Kitchenaid for it, and Farrow and Ball paint

Here.

oh yes, am 9/9 on brighton scale btw! ]

and yes indeed its an awful problem - i am damned if i do, damned if i don't -

If I try to work with gps/ doctors as equal partners i am pushed firmly back into place, if i act the supplicant patient they refuse to believe me, and then if i get upset (tear ducts needs blocking i tell you, hate that i cry in high stress situations, but always have unfortunately) i am hysterical woman and should be ignored. I got a friend to act as an 'advocate' for me, who is a retired consultant (not in this field), and she met just as many brick walls as me :-(

Take shit loads of evidence and literature. Anything that could show you are displaying signs.

Never shout and I know it's hard but try not to cry. I am starting to get further because I have pushed myself not to be hysterical and just to be extremely firm.

Some Drs need to realise they do not know everything and if someone spends enough hours researching then yes, in fact they can be more clued up on the subject.

if you were in Scotland I would say get an appointment with that Prof' I seen as he was lovely and said it was "a breath of fresh air to talk to a patient who knew what they were talking about and willing to listen and discuss".

He also said he was writing a long letter to my Drs and they would take me seriously from now on.

His name is Prof' Ferral and he is at the Glasgow Royal Infirmary, perhaps there is some way to get in touch for advice? Maybe through emails?

Can I hijack please started a thread in chat on EDS, school called ss on me this afternoon.

Oh lord, mrsewing... Heading there now

Ah drat... Had to walk further than I thought today & I think I've got another dodgy vein... It kind of 'popped' when I knew I was massively overdoing it & ice / heat haven't improved it, big buldgey vein right on top of inside ankle vein & it hurts improbably! Grrr, small thing but v annoying & sort of nibbling away on the edge of my consciousness...

Sounds nasty do you have vascular EDS? do you get this often?

well i don't, but don't know exactly what type i do have, all a bit inconclusive, so call myself a type 3 for want of a better fitting type (adding anecdotal evidence to say the types are not types but a spectrum!). my sister prob did have the vascular type as they think retrospectively that was cause of death. on the brighter side my dad probably has it too and he's going strong... I think i have type 3.5 myself! def not presenting like my sister, but sort of leaning that way. assuming my sister did have eds 4, the tragedy is she'll never know (and there would have been things to help if so), and nor will we.

had compression tights on all last night and today but still painful, think i'll carry on wearing them though as they are giving some relief and am worried in a fuzzy non scientific way that if am not moving around then i should be wearing them just now...

I never had that if you think it doesn't need looking at then I hope the tights help.

There are three EDS females in our house we are all different prrsentations, pretty unual all my dc to have EDS I now realise. Female hormones make EDS worse, male hormones help.

oh mew i'd like to be a breath of fresh air too! what a fabulous sounding prof, knowledgeable, treated you like an intelligent and involved member of the human race... its like a diary tale :-)

i may pay to see prof grahame who sounds a bit similar, but i need to pay for so many other health things too its not top of the list unfortunately

I just read quite a good physio text book with papers by a few people including prof grahame and rosemary peer, on how physio should help hyper mobililty syndrome... had it out on the bed when the council physio came round (whom was awful, patronising, unprofessional and plain WRONG last time she came)

I may have been a cold blast of air con towards her today vs fresh breezy air :-) lesson... don't bully very ill people as if they ever have a better day, they might not be that impressed with you. grrrrrr. here my roar ... or rather hear my firm voice talk over your rubbish as i quote from the book in front of me.

wow, thats exactly what HumanCat was saying last night about the wiiiiide spectrum of how it presents.

got to be a whole host of complexity and differences under the surface that we/ 'they' don't know about yet.

you ok MrsJR? will skip threads back to t'other one to check on you!

and also, if you don't mind me asking... is everyone in your family eds1 or are you/ your ds diff at all? don't answer if you don't want to of course x