The Sjogrens, connective tissue disease has taken the soft tissue from the bottom of the balls of my feet, a few years ago it took the toe pulp which was incredibly painful, & now it's taken the soft tissue I need to walk on. They thought it was athritis in my feet at first but the medics still have no idea how to help or treat it. I have no movement in my toes & can't move my feet to walk up a slope. The only way up is to turn sideways & this is for very low gradients.I used to walk very steep hills on a regular basis, 1 in 4, 1 in 5 as normal. The pain in my feet is horrific & its affect on my ability to get out is even worse. I have a lot of illnesses, diseases, thousands of symptoms, battled them all, but this is devastating.
I have the powerchair but like all of them, it's a heavy bugger, 12 stone, plus ramps to get it in a car, many cars won't take them. It folds down to a cube, some 2-3 foot in size. None of my agency carers can get it in their cars, so my regular shopping outing is looking less & less possible. By Yule it may well be utterly beyond me which would be completely devastating.
I have found that agoraphobia gives me a funny thing when in the powerchair, like I had with my car when I could drive, I panic about it breaking down to the point of becoming neurotic. But its the aspect of perhaps not being able to escape should it break down. The ability to have the access to an escape route is essential to me. It's freedom is great but the limitations are horrible. Only my parents car can take me anywhere, then the smallest of steps is an inpassable mountain, these are ancient market towns, these shops can't realistically be accessible. Grassed areas are fine in good weather, but if it's been raining you're stuck & sink. I hate the way people either completely ignore you in a powerchair or watch you, it's quite freaky. I may be extra aware of that because of the agoraphobia bit but hard to say. Herne recently said something lovely to me when I was out in the wheelchair & feeling ugh about it, I do my best to try remember that. I'm just very sensitive to things at the moment with what happened, still being fucked over by Social Services, my support agency & their 'carers'. My father & I continue fighting. A new PCT decision has decreed that my morphine is, to save my doctors money, to be a different brand each month depending on what's cheapest at the time, plus will be a MIX of brands to be taken at the same time. This contravines NHS & BNF (British National Formulary) guidelines so I'm to fight it because this is extremely detrimental to me & my already shit quality of life. A recent nursing assessment told me I now have visible muscle wastage in both my arms, my new dentist told me last week that my mouth opening has shrunk even more. The future is exceptionally bleak.
Cat Cafe is busy, seven of my own indoors, three ferals trying to move in & other regular feline callers too, thank the gods for them.
- Current Location:parents home
- Current Mood: sad
What a time the past year has been, mostly awful & finally fantastic thanks to herneoakshield (t-hermit on here). I still have no internet access. Before I write anymore though I have not been online since the shocking death of Ruth (catcrimson, kittyscarlet) in August last year. When her sister rang me I couldn't take it in. To be honest I still can't, I miss her so much. I have a box of her jewellery that her family sent me which I treasure & also wear with pride, I miss my darling Ruth so much ...
I now have seven cats, I lost my beautiful adored Stormy in November at just 2.5 years old to FIP - a hidden genetic killer. I still have Susie (now at 24 the oldest cat at my vets surgery), Rosie Whiskas, Tobacco, Phoebe, Daisy, Stoney/Tubby & Tom who ripped his leg open Saturday week & required urgent veterinary treatment & 11 stitches in his leg. I'm still running Cat Cafe for my visiting ferals, two of who are fussable. Got 40 patrons neutured to date.
Some of the battles, as last written here SS fought me, since then I've had two more Care Managers & get to meet my new one tomorrow :-/ I did get my refund of monies owing, almost £700 in care paid for but not recieved, that took a year to get back & I am owed approaching the same figure again now. My carers are proving appalling, failure to cover the calls, to do what I need, to do as agreed & trying to kill me with germ warfare that would put a terrorist group to shame ...I am sick of the bastards - when the carers are good they're fantastic, when they're bad they're appalling.They have no concept of pain or hidden disease.
After a battle of decades which I won in February only to lose in December, too long to go into, but then thrashed the bastards in May - I have also been fully & conclusively diagnosed with Sjogrens Disease/Syndrome - connective tissue disease that has gone systemic & is also the cause of the severe neuropathy I have of my central nervous system & sympathetic nerve dysfunction. No cure, but heavy steroid injections that can only be given via a specialised hospital to attempt to stabilise my condition.
So lets get to the good bit, the very good bit. I left the best til last ... herneoakshield & I are together :-) It's only taken 6 years no rush lol But absolutely worth the wait ... It's been dreadfully hard for me to let anyone in, these illnesses of mine are brutal but he's not letting me hide anymore. On May 12th we met at the abbey where we first met so many years before & we shared our first kiss there ....:-)
No-one has held my hand for over ten years. No-one has wanted me & I'm a sod for keeping people at bay. Life has taken a wonderful & fantastic turn & I am so very very happy for it :-)
Hope everyone is well, I do think of you all often. May your Gods go with you xx
- Current Location:at my parents
- Current Mood: happy
- Current Music:bird song
It gets worse, now I'm being called a liar & a hypocrite .... what did I write last time??
"am being totally thwarted by SS (Social Services) etc, with them if they say something is RED then red it is, even if it's blue with black & white polka dots. BASTARDS. I still have issues with downright liars & perfidiousness. And they are prime examples. Over a year on we finally have their reply to our complaints, they've turned everything round, blaming loads on me"
In their response they refer to me as "being slightly disengenuous" about not using all the money in the Direct Payments back account therefore implying that I deliberately went without care last summer. 10 hours a week was being paid for & I was only allowed to have 6 hours. I was denied my weekly outing to town to hit the charity shops which I was upset about. I am NOT allowed to spend a penny, not a fucking penny without my Care Managers approval. Anyone want to know what disingenuous means?
Oxford English Dictionary - 'Disingenuous - not candid or sincere, especially in pretending ignorance about something.'
They are calling me a Hypocrite & a Liar, the fucking BASTARDS. I am NOT allowed to spend a penny of that money without my Care Managers approval & last summer, despite that account being massive, she refused point blank to allow me to use any of that money, the money that I am contracted by law to pay in weekly, but am not allowed to touch without permission. I have NO right to that money nor to spend it without prior approval, they know this, the law knows this, the Direct Payment Support Service have told me by at least 4 different people, three Care Managers have told me this, but no, apparently I pretended to be ignorant about it so it's all my fault. That's right, sure it is, just attack the integrity of the person they're meant to be helping as opposed to dealing with the goddamned complaint. Twist their negligence into me being a liar. The Fucking, FUCKING BASTARDS.
I've been feeling really isolated here in dealing with this, really need some friends & strength ...
- Current Location:parents house
- Current Mood: furious
No good news to report, am being totally thwarted by SS (Social Services) etc, with them if they say something is RED then red it is, even if it's blue with black & white polka dots. BASTARDS. I still have issues with downright liars & perfidiousness. And they are prime examples. Over a year on we finally have their reply to our complaints, they've turned everything round, blaming loads on me for where I live (socially isolating - but you are MORE isolated socially if you live in a town or city & have people going on all about you but never seeing you exist), because 'I refuse to engage with NHS/CMHT mental health services' (I did not Refuse, this was due to my gabapentin, there was no appointment & no refusal to engage because there was nothing to engage with - And this mistake in my medical files was amended in my GP records in August 2009 & reported to SS as well when it was discussed! At the same time being discussed as my last CMHT report being Summer 2008 that said I would be absolutely fine if it wasn't for the extreme stress that Social Services were causing me - hmmm funny how that wasn't on their report hey?)) & because 'I refuse to be involved with the' local carers group. Except I used their services for 2 1/2 years until my volunteer left in November 2009. I am still awaiting a replacement volunteer which the carers group have been unable to provide - which is hardly my bloody fault!! Nor are they the only ones screwing me about. But none of their arguements to blame me are the least bit relevant for our issues of complaint with them, funding, hours, inaccurate reporting, lying, failure to repsond to phone calls or letters, etc, etc. *sigh* Oh & they have an issue with my being Pagan too .... WIll attempt to try post Voice Posts here soon, if I can get it to work that is, then at least I can update.
Got down the woods for the first time in a year, it's right outside my gate but virtually impossible to manage. We missed the best of the bluebells :-( Still just awesome to get there again. It was my mum, me & get this, three cats!! Rosie Whiskas, Tobacco & Tom joined us, never thought I'd see that, walks with one cat was rare enough but now three?? Great photo of the three of them down the woods but not a bluebell in sight in that direction, behind the camera the land was a pale blue green mist, oh well. With the recent heatwave wherever I've looked in the garden there has seemed to be a melted puddle of fur sighing deeply trying to get cool, eight cats can cover a large area of a garden!
Leeds Hospital's specialist team is doing great for me, but a long way to go, there's no cure, no management, but understanding by medics is so crucial. My GP surgery is appalling as is my GP. The other surgery in town has the same reputation so no choice really. Got some massive battles ahead (SS, NHS, CMHT etc) so please keep me in your thoughts.
May your Gods go with you :-)
- Current Location:Parents
- Current Mood: cranky
"The news of my death has been greatly exaggerated."
Okies, I'm still here!! Tis a very quick post, still no net access of my own, nor will have, plus have major problems using a computer too, in particular screens & typing so not going to ever be regular. But the next post will be less than two years away, is it really TWO years since I was last able to post?? :-( I've noticed much loved friends no longer posting on here with accounts closed, but also name changes to folk that I don't know who's who so I need to sort that out asap.
Quick news, health - still bloody awful, massive system fuck up, but hey, still here. It is very complex & getting much worse. I do have a powered wheelchair now but keeping getting out of using it as much as possible. Even that freedom has a high price. Got a cracking agency lass helping me in the home, the PA thing was a total disaster :-( Still living hidden away in my fantastic woods ;-) Been here over seven years now.
Oh & err, I've got EIGHT cats!!!! That was NOT meant to happen. Still got Susie, Rosie Whiskas, Tobacco, added ferals Phoebe, Stormy, Daisy, Stoney & Tom who is Phoebe's father but is also gay. If witnessing gay cat sex traumatises you then my home is just not the place to visit! Tom just adores grey boys & his favourite boyfriend is Stoney, whom he abandoned Stormy for. I hope to post photos of the furry babes next time, & maybe get their felinefamiliars blog updated too, they have sooo much news to share ... ;-)
Really hope everyone is doing well, I won't have time to check things out really. I've missed you ....
- Current Location:visiting parents new home
- Current Mood: happy
- Current Music:clock ticking in the background
I learnt all I need from you
They've got me on some medication
My point of balance was askew
It keeps my temperature from rising
My blood is pumping through my veins
Somebody get me out of here
I'm tearing at myself
Nobody gives a damn about me or anybody else
I wear myself out in the morning
You're asleep when I get home
Please don't call me self defending
You know it cuts me to the bone
And it's really not surprising
I hold a force I can't contain.
Somebody get me out of here
I'm tearing at myself
Nobody gives a damn about me or anybody else.
And still you call me co-dependent
Somehow you lay the blame on me
And still you call me co-dependent
Somehow you lay the blame on me
Somebody get me out of here
I'm tearing at myself
I've got to make a point these days
To extricate myself.
Somebody get me out of here
I'm tearing at myself
Nobody gives a damn about me or anybody else
And still you call me co-dependent
Somehow you lay the blame on me
And still you call me co-dependent
Somehow you lay the blame on me
Somehow you lay the blame on me
Somehow you lay the blame on me
Where is the woman who would fight to the death just to survive? I want her back to smash the fucking world apart.
- Current Mood: angry & afraid
these moments ...
as beautiful as they are ...
they're evil when they're gone."
The other night I had a terrible dream. I was sitting in an origami paper hat boat in the middle of the sea. There was no land in sight, nothing but white sky & the surface of the sea was flat. The boat starting taking in water & I did nothing, just sat there letting the water get higher around me until the boat started to sink. Still I didn’t move, didn’t care what happened to me & the boat sank below the water taking me with it & still I did nothing, just watched as I went through the boat & sank to the bottom of the sea. A few air bubbles left my mouth but no more, I didn’t bother to try & breathe, I didn’t bother to try & save myself. I just stayed sitting on the bottom of the sea, watching the blue, green blend of the sea above me, the empty sky beyond that & then it went dark. I died. But I stayed there in the dark, a nothing for hours. Dead but alive. Alive but dead.
It was profoundly disturbing. It both deeply reflects what’s been going on here as will be mentioned below & another trigger that remains mine alone. And so, I briefly visit. I am exhausted from managing my own health care for decades & now I have to manage my own personal care & so called ‘support’ when I’m not well enough to do so. A few of you will be aware that my absence from the internet has been for various reasons, the first being my terrible health, along with my normal appalling multiple conditions, I’ve suffered three intestinal blockages, with two further suspected ones, probable gallstones which may or may not have triggered the intestinal blockages because of my SND (I’m waiting for am urgent scan). It’s weird if it is gallstones because my diet is quite low fat anyway. They believe my morphine masked all but the extreme pain symptoms of gallstones (if that’s what it is), & I note that my morphine doesn’t work when I have the intestinal blockages because it can’t be absorbed properly so the other horrific pains tear me apart as well.
The second reason for my continuing absence was a deep need to disappear which I did in September. Then at the end of January, for financial reasons I lost my internet connection as the money will be needed for my PA (carer). There is no alternative access because of where I live. Losing the internet is possibly the most damaging thing for me, I only have one friend here, Tilly at the weekend, I cannot connect to meet people, I can’t ring them (not even herne), I can’t email, I am too ill to leave the house, yet my only communication with almost everyone of you is purely through LJ. It is a strange way for me since I tell virtually nothing to anyone, yet tell a fair lot through here. Some of you have sent me lovely letters, for those I thank you so much, that has been wonderful, but the special thanks go to my dear adored friend herneoakshield whose continuous texts always keep me going. Yet I have been very much alone. The more isolated I become, the more isolated I deliberately make myself.
It’s very hard to know where to start. I am still going through times of severe stress from outside factors. I have had truths I long ago faced myself, rubbed into a wound that healed but still hurts. I know that I will always be single, I have been on my own for more years than I care to think about, the disabilities & illnesses put an end to that side of things but I don’t need Social Services pointing it out with pointed assumptions when they don’t know me.
I have been in some places that I never want to return to, yet know that will happen again. I tried to disappear, I wanted to hibernate, shut all the curtains, barricade the doors & remain hidden deep in the woods. It’s where I want to be now again. In the summer last year I lost something that had sustained me through the last 18 months, something that kept me going, gave me hope & a reason for being here, its loss made coping extremely difficult. It never once occurred to me that people would actually miss me, or be hurt by my disappearance, equally by the fact that no-one heard from me at Yule. That was not my intention, all I intended was to simply disappear, as good as from existence as possible for as long as possible. To complete my disappearance I tried to delete my entire blog but found I couldn’t do it. So instead I hid all entries, all thousand of them, making them private only. Over time they may slowly return. Again as pointed out to me my normal blog entries can be brutally honest, but it’s all I have. It’s been virtually my only means of communication for years & even that has gone.
I am so very very sorry to all of you have been really worried or hurt by my disappearance of some five or six months. I am not the person you used to know, too much has happened to change that, to change me. But I never once expected people to even notice I was gone, let alone be hurt or bewildered by my disappearance. Perhaps for those who ask about me who aren‘t on LJ, send them here so they can read for themselves. I am so sorry to everyone.
"I got sick, and now I'm something less than human. Something worthy of extermination."
"The heart dies a slow death. Shedding each hope like leaves until one day there are none. No hopes, nothing remains."
Memoirs of a Geisha.
- Current Mood: isolated
Per week £2.94 is for the local Community Alarm system, Carer group £3.00, & my Carer/PA a whacking great £19.28 a week which I don’t have. More on this later (see Part 3), it’s been seriously, extremely stressful & still is as I’m still no nearer to this carer even being here but I still have to pay. £1850.96 a YEAR purely because I am disabled? It makes me feel sick every time I think of it. Next time someone goes on about sick & disabled benefit scroungers tell them the true cost of disability. Show them this. Scounger? It’s poverty & hardship, pure & simple. It’s not just an extremely heavy unaffordable cost to me, it’s a heavy price that is one not just measured in money. I also dread having someone here, the even further loss of independence that goes with having a stranger doing things for you, helping you with things, having to go through your personal & private things as part of their work. For someone as hidden & secretive as me it’s a hateful & distressing prospect. I can’t say don’t come here today because I am their employer & they are not just a visitor who can be cancelled. I hate this. I hate it, I hate it, I HATE it.
Equally I have the morons from hell in control of my case, my Care MisManager keeps telling me that I should move to town, so exasperated I asked her as to what possible benefit that would have for me, her reply was, (I kid you not,) “Well it would help your carer get to you easier!!” She also suggested supported work might right for me at some time, H from Carers went nuts when she heard as supported work for the disabled is a single phone call a week. H said I would need permanent help with me all the time because of how I am, & said this shows her complete failure to understand my case. More on my PA/Carer and Social Services continuing fuck ups found here … (http://weatherwitch101.livejournal.c
I have been absolutely honoured twice this year, both requests totally out of the blue, both made me feel deeply honoured. One I accepted, the other, regretfully I had to decline. But I still felt damn privileged to be asked.
I was absolutely thrilled on the 22nd December to find that the Darlington & Stockton (the regional paper incorporating North Yorkshire) had printed my Solstice photo from 2005. They only print one readers photo a week, good size & they always look like professional work & it was the first time I’d sent one in. Unfortunately the day later became memorable for the wrong reasons as the first of the intestinal blockages hit.
To summarise as briefly as possibly, at Yule I was rushed into hospital very ill with an intestinal blockage, severe extreme instant sweating, severe dehydration, extreme pain, front & back, severe swelling of abdomen. I was exceedingly ill with that for many weeks, before it had sorted itself out, I got a second intestinal blockage, extremely painful but minor in comparison. I lost 10lb in total. The ambulance got lost, took 50 minutes to get here, then couldn’t turn down the track to get near to my home as the gap was too narrow in the hedge. At 4am on a bitterly deep frosted morning this was not funny.
I also suffered the most massive f’king cyst in my lady bits, this is both caused by the SND & Sjögren’s affecting the glands there. It’s not the first I’ve had but the first that got to the size of a £1 coin before bursting & I was going barmy with the insanity of it. It took a long while to heal & the anti-biotics for that gave me an infection in my gum instead. SND has affected even more places, the worst of the new severe nerve pain being in my vagina, vulva & back passage. That can last up one & a half hours & is appalling.
The temporo mandibular joint (TMJ) disorder is causing terrible problems, locking my jaw shut upon waking, triggers are mostly sleeping, but typing & writing too & causes excruciating pain as it pulls all the muscles in the face, head & neck. The longest has been 12 hours & finally let go shortly before A&E involvement. Mine is caused by connective tissue disease as opposed to teeth grinding, the most common cause.
I’ve been without heating & hot water once more as the boiler went again, it also went in December & required fixing then. Then a power cut last weekend took the electricity off for 6 hours & brought tiles off the roof again, along with bits of chimney as well.
At 4am the other week a very loud crash that I very nearly didn’t investigate as I couldn’t be bothered turned out to be the shock of my life. It still makes me feel cold when I think about it now. A massive section of the fire back had fallen down, it was some 12 inch by 13 inches & had fallen over the top of the hot flaming coals. It was the plate that used to hold the back boiler door & it can’t be put back because the bolt has broken & the masonry is all ragged where it fell from. It brought down tonnes of brick dust & soot & the whole lot had pushed the fire guard out. If that hadn’t been there the red hot plate would have slid onto the rug & set it alight. No-one can understand how it managed to slide over the top of a high fire (banked up for the night) with big flames yet not bring a single coal down onto the floor. The entire house would have gone up in flames.
Other news, in October we lost the barns that we were moving to in mid November & they are now sold. All because my parents buyers buyer fell through. My parents have had several other buyers very interested but they’ve all been time wasters, wanting special deals to avoid paying stamp duty. There is nowhere for them & me to move to now that any of us like, area or property.
Other news, back in September I started to learn a dream, only I was too ill & too caught up in Social Services crap to start, but I am now, exceptionally slowly learning Latin. This has been a lifelong dream for me. I can confidently say,
“Ego ne unum quidem verbum intellgo.”
I do not understand a single word! Now an icon ;-)
Cat Café has up to 15 stray visitors, they’re all truly beautiful silver tabbys with the most exquisite markings, they look like a type of pedigree. Daily visitors are Silver, Padre, Smudge (2) & her now adult kitten, Baldrick. Other irregular visitors are Twin, Triplet, Beige Face, Smudge (1), Big Daddy, Leopard Spot, Leopard Stripe. They are almost identical but even sometimes I get confused. I’ve got the CPL & RSPCA numbers now in the hope of getting them spayed & maybe rehomed, although they will only be suited to farms having never seen traffic before & in their being so feral, even now none can be touched. They cost me a bomb in cat food though, but it has been wonderful to see Smudge (2) & Baldrick playing in the garden chasing leaves rather than searching cold & hungry.
The mini house isn’t quite so miniature, it’s currently having work done on it & has become a three storey house with roof garden & two storey tower. I hope one day for it to have it’s own website :-) It will also have a male ghost on the roof with its head under its arm as all good miniature witch dolls houses should have ….
I have also been coping with more visitors in a few months than I’ve had in over a decade. Also regular cleaners although that is due to stop very soon as the grant ran out & the PA should take over some duties. Current cleaners are fantastic although I hate their coming here, the original cleaners were bloody awful, the worst of the worst people in the world, (see Part 4 - http://weatherwitch101.livejournal.c
Things with my father have been the same, some truly terrible arguments, maybe I’ll say another time. I’m made to feel belittled & almost bullied. But equally Yule was a terrible time as I had a terrible row with my parents. They’ve always gone over the top & this time I’d finally got through to them & they agreed to a couple of presents only which was wonderful & I was really pleased that they finally understood. Come Yule I was devastated to learn that they’d totally ignored what I said, there were words, anger & tears. I really find all this spending at Yule repulsive, you can have presents that make your entire year rather than day if well thought out. I received nothing expensive but it all adds up. I found it utterly abhorrent that although I’d asked & they’d agreed, they went & did it anyway. They have now agreed a few presents only, if they want to give more then they give money instead, 50% to Cats Protection League, 50% to Raynauds & Scleroderma Association. I have little need or want for things. Going without has always been the norm for me, even with the change in financial circumstances from poor to poverty stricken thanks to the Social Services, if I want something then I’ll have to carry on saving no matter how many months it takes or sell something to raise the funds. Credit cards, debt & borrowing have never featured in my life & never will. Mind I paid £408 in November for the oil, & have to order more next week which will be around £435. How am I meant to afford all this?
(please comment on part one if you want)
- Current Mood: frustrated
And so here’s the real shit that’s been going on & making me far worse. It’s that f’king damned Social Services (the SS). It’s a bloody long post, but I can assure you that this isn’t a fraction of the crap that they’ve been doing & causing me.
Folk may recall the problems I’ve had with the SS over the years, with the result that most of you know that I quite frankly despise them for their mishandling & mismanagement of how they could help. This has resulted in my only contacting them this time as I had severe need of help. Previously around ten years ago they installed a solid fuel central heating system I couldn’t use & that didn’t work. Their continued response to my complaints was to send me a booklet on how to work the system. Within six months of my leaving that house, oil central heating was installed by them. Just over five years ago my GP & the police contacted them about me as I was at risk, disabled & suffering appalling abuse & harassment from the neighbour from hell next door, the SS did nothing & I had no option but to leave my home. Three times after that needing help I have contacted them only for them to systematically fail to respond to phone calls, letters & emails. It was with dire need that I had no option but to ring them for help in September when my father would be recovering from major bowel surgery again & would require my mother to be with him permanently leaving me with no support or help. I regret to say that the SS have got even worse & I am bitterly regretting getting them involved, yet have no option to tell where to go to, as I desperately need to help my mother with all the care work she does for me. She has never received a penny for any of her carer work. I will be getting a PA (Personal Assistant) but at the price of poverty & hardship.
I rang & explained my situation on September 5th to the SS & again on the 7th, no-one rang me back until the 17th September. She was like a switchboard assessor who immediately grasped the serious & urgent need I had of help. September 20th my NonSocial Worker (NSW) rang me to arrange an appointment yet when she arrived on September 25th she had somehow managed to think she was here to assess me for a one off grant because I was the carer for my parents! & she was missing the centre pages of the form she had brought to do my assessment with. She arranged an appointment with my mother & myself on the 27th only I was taken very ill indeed on the 26th September, the day the hospital unexpectedly sent my father home who was still very poorly so my mother ended up with both of us seriously ill so the appointment for the 27th was cancelled. That day the local Carers came out to help as my jaw had locked shut & was causing extreme pain as it remained locked for many hours & was setting off the Trigeminal Neuralgia as well.
I heard nothing more from the SS, so at the end of October I rang them, but it took another two days for my call to be returned. My NSW hadn’t done anything about my case at all, hadn’t contacted the local community alarm group, but said she’d arrange a meeting for the following week. She rang weeks later, arranging an appointment for the next day, which was my mother’s 60th birthday so she was pissed off about that. So finally on November 23rd my NSW & her boss, who became my Care MisManager (CMM) arrived, & we discovered that NSW had failed to tell her boss anything about me, failed to write down any of my multiple conditions or how they affect me, still hadn’t contacted the community alarm group, hadn’t left me any leaflets or details on the SS & their services etc, nor realised that I’d not seen an OT since 1996, (being the afore mentioned heating system fiasco) & had provided all my own disability equipment at considerable cost. My NSW had also managed to change my address twice, lose my mothers bank details for her one off carers grant, then sent the replacement paperwork to the wrong address! My mums Carers Assessment was done by her filling out the form, as opposed to meeting & discussing the issues she raised, it’s disgraceful, she never met her Social Worker for herself. Incompetence is an understatement.
My CMM left me amazed by stating that I qualify for Direct Payments, so that I can employ my own PA (Personal Assistant) for some hours a week. She gave me booklets, told me to ring the local Independent Living Centre who would help me with the nightmare of legal stuff involved, tax forms, national insurance contributions, employers liability insurance, job description, contracts, adverts etc. At the time when CMM asked me what I thought of employing my own PA, all I could say was that it made me feel ‘safe.’ I actually felt like three stone had been lifted from my shoulders. Being ill wears you down, being permanently ill, with the terrible pain & all the other problems, well you live with it because there’s no choice but it’s not easy. It took away a fear I didn’t know I’d had weighing me down. The idea was to transform my life & that of my parents, especially my mother. We really thought that I would finally be helped. We’re now almost mid March, 6 months since my initial contact with Social Services, 4 months since the promised help hasn’t be sorted so I’m still without help. The irony is that my case is still classed as Critical!
CMM came back the following week on the 27th to discuss questions & for me to sign the paperwork. Oddly despite the fact that although my mother does around 40 hours a week for me, including an awful lot of help at night, I am to get just 7 hours help a week. CMM asked my mum to work out her hours etc, then came back & told me what I was having, without discussing with my mother the hours she’d asked her too. CMM is allowing 2 hours a day, for the day times that my mother isn’t here, the one hour is because the local Carers group are here that day but the insurance doesn’t allow them to do actual care work, just that of respite & company. The fact that I would have to be financially assessed to perhaps pay a contribution was only raised at this meeting. I raised the point that this worried me since I had just received my fuel bill for the oil, £408 (950 litres oil) & that I actually did not have enough money in my bank account to pay for it. My financial assessment did not happen until the 17th January although I’d to sign the agreement back on November 27th to start from December 1st without having the faintest clue as to how much I would be required to pay. I did not receive the verifying paperwork until the 30th January, some eight weeks after I’d signed the agreement. You cannot agree to Direct Payments on the condition of the outcome of the Financial Assessment first, you must sign the agreement form first & be dropped right in the shit later. Bastards.
The Independent Living Centre (ILC) have been incredibly frustrating too, they never return phone calls & since only the person who is dealing with my case can discuss it then it can take several phone calls before I get them on the phone. Equally although he said he would contact my CMM to discuss issues I had raised when we met at the beginning of December, he didn’t. They have also given me wrong information. ILC didn’t even return my phone calls for several weeks, even though the draft job description & draft job advert needed essential altering & correcting (such as own transport essential, they’d stated weekdays only which was incorrect & the type of experience required etc).
The budgets are extremely complex so the ILC are the ones who are supposed to double check what the SS have arranged, but they have missed several things, including that CMM hasn’t allowed for agency cover which is almost twice as much the normal daily pay & would be needed for the 4.8 weeks holiday I have to pay my PA for & arrange cover in her absence. They would also cover for sick pay too. If the carer gets pregnant then I end up in severe deficit as I’d have to pay maternity pay to her AND pay for agency cover during that time. Or have to employ someone else to cover when an advert costs the same as agency cover. It will be a female because the nature of the job & some tasks means it compiles with Section 7(2B) of the Sex Discrimination Act 1975. No-one told me this, I learnt it two months later when the draft job description arrived.
The budgets are worked out in a very complex manner, an overall allowance is made & calculated into an hourly rate. As I am told to employ someone for 7 hours a week this budgets hourly rate is slightly higher than what I am to pay them because I have to use the tiny difference to save up to pay sick pay, redundancy, national insurance, tax, holiday pay, petrol, maternity pay, future liability insurance & contingency costs. Another thing that infuriates me is that I was given a set up cost of £200, plus £90 for the employers liability insurance for the first year. Sounds great hey? Should cover all the costs? Hell NO. The advert alone is a shocking £248 because it‘s a business ad. The CRB (police) check is £35, & the insurance is £84. I am £77 short before it starts! CMM doesn’t give a fuck. I put it in writing to her that the weekly £19.28 would cause me severe hardship but she ignored that. ILC get no response from her either, she won’t budge or even pretend to understand, help or care. Bitch.
Whilst it’s not for the client (me) to work out the budget (thank fuck!!) the ILC are meant to be organising & managing the budget but they’re not. They drive me mad & I have to depend on them, it’s ridiculous. I am not allowed to go anywhere else either for this help as they are contracted to the SS to do this work, free to us
The Occupational Therapist (OT) finally visited on 14th December, yet CMM hadn’t told her any of my conditions or what I might need. She also failed to ask what might help, no options or alternatives offered, no discussion of daily life. How can I tell her what I need if I don’t know what’s available for help with?? She failed to ring & failed to make a follow up appointment even though the equipment she supplied was useless for me. I have a kettle tipper that’s now dangerous & a leg strap, the leg strap is actually to help me turn in bed the other way. I find once more that Social Service OT department have let me down yet again. They provided two bath seats I couldn’t use (I already own a bath step, bath rail, shower seat, loo rail, etc) & they don’t think a bath lift is suited because of my temporary paralysis, however they’re still looking into one. That was in January. I have already bought various bits of equipment over the years including to help with bathing, but because of my illnesses etc a bath lift that goes right the way down & can lean back a bit would be extremely beneficial. True to my luck this is the same person who was meant to help me five years ago …
On the 19th December my faith in CMM, who I had formerly believed to be competent went out the window when I found a message on my phone from her that basically said that the financial assessment department have a huge backlog & had I got anyone for the job yet?! Having not received a penny in money for the Direct Payments account how could I have employed someone?! I spoke to her the next day & she said she’d arrange for the money to be put into the account so we could get on with things & I told her again how worried I was about what my contribution might be but that not one person could give me any kind of indication as to what it could be.
She came out at the beginning of January to do the review of the care which of course hadn‘t started. I have no date for a further review despite not being anywhere yet. Once again she suggested I should move to town, especially because the ambulance got lost trying to find me. I know I live in an isolated location, I’m one of 15 houses on a country estate of some 800 acres. But I love this place, the peace, the land, the woods & stunning birdlife & wildlife that I am so privileged to know & love here. I accept that I am having to move, with my parents selling their house just so they can look after me, in a house with a separate annexe or converted outbuilding. But I cannot see any benefit in CMM always suggesting that an extra move would be of help to me, especially for me to move before my parents do, the stress would be phenomenal & detrimental to my health & I haven’t got that sort of money since I’d need professional movers. I have enough saved for one move only, after that’s done it’s gone. So I asked her what benefit my moving to town would have for me, her reply left my mother & me lost for words. She said that it would help my carer get to me easier!! I thought this was about me, not my carer/PA. Besides the PA is actually to be paid a mileage allowance to & from work! At the same meeting she suggested supported work might be an idea for me, when I told H from the Carer group she was livid as supported work is simply one phone call a week. As H says, I would need permanent help with me all the time because of how I am, & we are all agreed as to this showing my Care MisManagers complete failure to understand me or my case. Their incompetence is unbelievable & they create such extra stress with their stupidity & lack of understanding & support.
On January 17th I had my financial assessment done, my Direct Payment is £73 a week, I have been assessed as being able to afford a shocking £19.28 a week towards the £73!! I have no understanding or comprehension of how this figure is really found, after rent, water, electric, heating oil, care costs are deducted at their actual average proven cost, all other figures are done at the governments own set figures. So it doesn’t matter what you have to really spend on food, clothing, boots, phone etc, only the governments figure is allowed. Equally despite what I can prove that I have spent on disability equipment, that figure is not allowed to be accepted, but a much lower one of their own making is allowed. I now have to find this £19.28 a week for my care, a figure I find astronomical, especially given that despite CMM assurances, a persons real outgoings are not taken into account. My income has been used for years on equipment & other items that I would not require if I was not ill. Whilst a properties buildings insurance premium is taken into account, the fact I have contents insurance is not. This I find odd, I mean if I lost everything in this house, how could I possibly expect to replace it without insurance for fucks sake? Many things that people normally have to pay for are not allowed to be taken into account. It’s stupid.
The financial assessment worked out that I had £22 disposable income a week, so they took 90% of it leaving me just over £2 a week of disposable income. I can’t see how this works out, it wasn’t disposable, I don’t have holidays as I couldn’t afford them in the first place, I don’t have television (fortunately by choice) but I have had to give up the internet to attempt to claw back money, but for me living where I do & not being able to get out it’s crucial both for contact & for buying items that aren’t sold locally which is a huge amount of things as these are very rural towns. Losing the internet when it’s not my choice is devastating & extremely isolating. £157 a month to pay out because I’m a cripple. Crippled by nature, crippled by Social Services, hmmm …
I am still really stressed over it but have absolutely no choice in the matter since I do need the help. I still find it really unbelievable that I had to sign the legal agreement for the Direct Payments before I had any indication of the amount I would be required to be pay. It seems unreal that over 8 weeks pass after signing a legal agreement before you learn how much you agreed to pay. Equally strange, no-one told me how to pay, where to pay & how to arrange a weekly payment. I only found out because I received a very low remittance advice notice the other week so had to ring Social Services Financial Expenditure department to explain it to me. However us mere mortals are not normally allowed to contact that office, so I had to have permission to do so! Absurd. The lady I spoke to was very helpful & was surprised no-one had explained any of that for me. I’ve never had explanations, to date I have still not had a letter informing me the where, what & when of all of this. The previous letter at the end of January told me to send no money then … but you have too.
It’s daylight robbery disguised as help. I don’t expect help to be provided free, but I do expect that realistic figures are used. I am finding the whole situation to be very difficult to cope with especially as a lack of help or support from anywhere does not help me understand what is going on. The stress of everything, all the visits, all the issues going on to be dealt with, it makes so hard to manage & no one from Social Services ever asks how I’m coping or managing with it all. I’ve had far more visitors connected to this than I’ve had in over a decade here. When I was well I was responsible for 18 staff, yet with now being so ill I find it all very bewildering & over whelming. Some years ago I used to be a volunteer Advocate & represented & helped a local lady with mental health problems, I had real power in those days & Social Services acted on my words as I was their clients representative. They got on with things, it’s a real different story now when I’m their client & they really don’t give a damn. I’ve been so damn busy, dealing with these idiots, trying to get somewhere, stressed out of my bloody head as to where the fuck I’m to find this sort of money for ever, fighting my usual current illnesses & then having to fight all these new conditions & symptoms. And keep sane. I’m still nowhere, with nothing & all alone. It isn’t right. And now the CAB have changed to an new number on an automated line not only does it now cost to ring them, but because the line is automated you can’t put it on ring back to get through. I equally can’t get through to their nearest office & if I was well enough to travel it would still cost me around £22 when it used to cost me nothing to ring. And yes, I will be complaining in writing. I understand the voluntary sector better than many having worked on both sides of it, & now I’m a client of it. So yes, I understand, but it doesn’t make me forgiving when they isolate & cut off the very people who need the info the most.
weather witch - Fed up, fucked off & at the end of her tether.
(comment on part 1 if you want)
- Current Mood: stressed