Housing adaptations

Jules_H

When I first moved into my current council house I was told it is disability adapted. The appointment for my viewing the house was left until a few days before my prior house contract expired, so it was like I had no option but too accept or be homeless. The only part of the house that's adapted is that I have a box lift going from the living room through the ceiling into my bedroom (when it doesn't break down with me in it), and an adapted bathroom which is the furthest from my bedroom as possible. The bathroom, while it does have a shower chair in a small compact area, the sink is a hand basin! not a proper sized face washing sized sink and a door leading to the back garden 12" from the toilet 😳

The rest of the house, inc door frame widths and entire kitchen are literally all able bodied designed.

Two months before the initial lockdown an O.T and financial officer came out, the plans on changing a lot of it would be a game changer for me and what I could finally do, however, during all the lockdowns, both the O.T and financial officer changed depts. I had a new O.T visit last week. M6 main concern was my being able to safely use the kitchen. This O.T was a nightmare! She asked what changes the previous O.T wanted to do, but then changed the subject on to something completely different before I could even answer.

She asked about my wheelchair, I said how it's impossible to use it in a house where a) I can't reach or see any work surface or the sink, b) I can wheel forward and backward but not turn around without getting stuck or wedged in.. the list is endless...

Three days later she phoned me to tell me my request for a kitchen adaptation had been denied. Every question I asked her regarding why, she just kept repeating "talk to my manager". The one and only answer I did get was "Because you don't use your wheelchair 24/7" !!!
Livid was an understatement, more-so as my kitchen adaptations and more changes around the house had already been approved pre-lockdowns.

I have no clue what I'm meant to do now or how on earth they expect me to cope via a wheelchair and with partial vision.

Jules_H

As an added update.. I spoke with someone at Scope who, to make it clear, did say that while they couldn't do much for my situation, a letter from Scope too social services, being a third party, could help.. give them a nudge so to speak. It did indeed.. a different O.T came out to see me, I explained to her my reasons for not using my chair, which she surprisingly agreed with. She added that my wheelchair also isn't helping me as, after a huge drop in weight, my chair is and has been way too big for me, so  (as long as the council make the needed adaptations outside the house) I'll be getting a powered wheelchair and an adapted kitchen by the end of this year.. fingers crossed.

Tori_Scope

I'm sorry to see that we appear to have missed your original post @Jules_H.

I'm glad to hear that someone from Scope was able to help! Please do keep us updated on what happens with your housing adaptations, and powered wheelchair.

How have things been for you since you first posted here?

Jules_H

@Tori_Scope The Housing Officer in charge of the teams who do the repairs and adaptations did warn me his team did have a few other kitchens to adapt before mine, but at least that's a bonus, I know it's on their books to be done. It's not easy managing without a cooker, but I haven't done too bad in the last ten months, so once the kitchen gets done it will be nice to have workspaces I can reach where I can put table top hobs and cooker etc. I know my health is deteriorating but it feels like my only three options are:- a) struggle to use my wheelchair all the time in a 98% able-bodied house and watch my muscles atrophy, b) have people (carers) I don't know coming and going, when I don't feel at the stage to need carers yet c) manage the best I can on my own.

   I did have an appointment to speak with my doctor about my physical health worsening, I waited six weeks to be told he was off sick.. so week seven of waiting it was the day before my appointment, about 11pm at night I woke up laying on my side feeling like "I'm too close to the edge of the bed, I can feel my upper hip falling forward out if bed", that's all I remember on the Wednesday night. Next thing I remember was that I was on the floor, partly under the bed, my clock showed 04:40. It wasn't until I'd managed to get myself up, wobbling all over the place putting my glasses on that I saw the clock say Friday! I'd been on the floor unconscious on my own for 30 hours.   To be honest Tori, I was more concerned, worried and really bothered by the fact I'd missed my long awaited appointment with the doctor, which was on the Thursday (while I was still unconscious). DeltaWellbeing have now given me a fall detector combined help button to wear on my wrist. 

I cope the best I can, or find alternate ways to manage, even though I shouldn't have to struggle. I stopped asking for help a long time ago as I always fall through the cracks and get forgotten about. So it was... well, I can only say I was speechless when Scope reached out to my local social services and they actually did something instead of giving empty promises. 

iza

Hi @Jules_H , it is terrifying to be unconscious for 30 hours alone at home! Is there any chance you could let any relatives to live with you ? 

Jules_H

Teddybear12 said:

Hi @Jules_H   That sounds a lot more positive. Fingers crossed and good luck.

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Thanks. While my falling through the cracks in the system so many times should've made me more cynical, I still hold out hope the kitchen, after waiting almost three years will finally get done.  The people who provide the powered wheelchair have only given three months for the few minor adaptations to be done outside my front door, if it's not done within that time, I don't get the much needed chair, so I noted the end date and will keep on at the council to get it done in time. Fingers crossed it all gets done, it'll make my life a lot easier with a lot less accidents

Jules_H

iza said:

Hi @Jules_H , it is terrifying to be unconscious for 30 hours alone at home! Is there any chance you could let any relatives to live with you ? 

Sadly, even aged 54, I've out-lived both parents and my only sibling. Apart from the few relatives who did attend my mum's funeral twelve years ago, I haven't seen or heard from them since, and haven't seen or spoken with the others in over thirty years, I don't even know where they all are. I know one person where I live, a taxi driver, one of the few who will take a wheelchair.  Many people's views are "well, now you're conscious now, so you don't need me to come round". 

iza

@Jules_H, for those people who say like that I would say still “honey of course I need you with who I will have chat over my cup of tea”. Could you get a student to live with you, do you have a good neighbour who could you give a spare set of key? Can you arrange with neighbour that you are going to text / call each other to see that both of you are fine ? And incase of no hearing from each other you calling straight for 101 so someone can check what is happening? 

Jules_H

iza said:

@Jules_H, for those people who say like that I would say still “honey of course I need you with who I will have chat over my cup of tea”. Could you get a student to live with you, do you have a good neighbour who could you give a spare set of key? Can you arrange with neighbour that you are going to text / call each other to see that both of you are fine ? And incase of no hearing from each other you calling straight for 101 so someone can check what is happening? 

If only life we're so simple. Next door is empty, the other side the husband takes care of their disabled son and his wife who has had multiple strokes. I live in a town that is riddled with drug users. One of these drugs just comes above the law, it's handed out freely at gyms, this steroid has a nasty side effect in that it causes random outbursts of aggression and violent behaviour, so once people come home from work they lock their doors and don't come out till they need to drive somewhere. I've tried starting up conversations with them but it's like they are too fearful and would rather air on the side of caution only talking to those they've known for years. The rest of the street are either those who cause trouble or they're specially adapted  bungalows for people who need 24/7 care and district nurses. I did look at moving, but was told it could take years as adapted bungalows are few and far between and don't become available very often. I was put off phoning my taxi driver friend as even though he's been married 30 odd years, he's let me know he's interested in me - I nipped that in the bud straight away, but don't want or need him getting his hopes up by me phoning to say I need his help or my inviting him round. The last O.T who was here and DeltaWellbeing (who supply my help, fall and panic buzzers) knew about the collapse but I didn't tell anyone else.

    - On a more positive note, I have agreed to join a bowls team for the visually impaired, many of whom have other disabilities, so hopefully I can make some new friends there and may be able to call on them to come round for a cuppa and chat if (god forbid) it happens again. Living on my own I'm fine with my own company, though the passing out scares me, but the last time I had carers I was married and bed ridden. I told one of the carers I kept getti g really bad headaches, she literally said "Oh I used to get those till I gave up coffee and got divorced" !!!
She didn't even add it in my notes.. two weeks later I had a stroke, it's one of the reasons I'm reluctant to have a carer now.

Jules_H

@iza as for a student, courtesy of my my soon to be ex husband not letting me talk to people for almost 11 years, him being toxic and playing psychological mind games and death threats, it's left me very wary of people I don't know. I struggle to get past the niceties in any conversation before nerves kick in and I ramble when it's face to face. Oh I can talk for Wales online, but face to face I barely speak, I'm lost in those situations, so having someone else live here, I don't feel I could cope emotionally or mentally with that...  I don't like admitting this, my gp did say I have PTSD. While I dispute this (for me it's just nightmares and night sweats, no other symptoms), my lack of social skills is down to my being out of practice. (Likely why my posts are so long... sorry about that).

iza

Hi 👋, no worries about the length of post . I like read a lot and I love to write too. Sorry that you live in dangerous area but I assume everywhere in UK is pretty much the same. I know what does it mean to live in toxic relationships so completely get your points but we all need to try to be in good side and believe in others are good too. We all go through a lot in the life and to be honest probably everyone could said I have PTSD due to something. But the most important is to look how to overcome it. The sweating and nightmares can be menopause symptoms worthy to check it out. 

Jules_H

@iza I can thankfully say it's not menopause otherwise I would have had the nightmares the last 20+ years instead of the last 3 when things at home were much worse than the usual bad. I unfortunately had to have a hysterectomy when I was 32 and  the menopause started just 2 years later.  

   You are so right about how chances are, most of us could say we have a degree of PTSD given what life throws at us all. 

   Luckily I can say I was raised right, I do try to see both sides of  things, I don't hold grudges or place blame. In my teens my mum used to tell me "if you're nasty, mean, say bad things or gossip about people because of how badly they treat you, it makes you just as bad as them"... that stayed with my ever since, it made so much sense and I never wanted to be like those who mistreated me. Even now in my 50's, I can say there was no reason for my ex to make death threats toward me and I can't rationalise that, even if in his mind he can, but he obviously felt he had his reasons for how he treated me or what he said. I don't forgive people easily, but do try to understand why people behave so badly (I rationalise too much sometimes), but no-ones been able to kill off or take away the kindness and caring side of me, many have tried though. I've also seen what hate and despise can do to a person when they've been deeply hurt... I wouldn't wish that on anyone. I believe once my new kitchen is finally in and the powered wheelchair gives me more independence, when my house feels more like a home rather than my ex's dumping ground for all the rubbish he brought and never used, stuff like bookcases that fell apart, when I have this as my home, with adaptations all done, the nightmares will become less and less, or just stop. 

iza

Hi @Jules_H, you are completely right and your mum thought you right things. I hope that the kitchen will be fit very soon for you. It is important that you should feel comfortable and be able to move around. When it comes to men, yes I wish also that they could be better people on this planet 🌏 as sometimes I fail to believe that God made them first. Looking at them and looking into the  sky. I ask God: Really, seriously they were first ? I don’t want to be sexiest so I will finish with search for what they are good at and what good things they have in they heart. I must say I am still looking for the perfect one. 

Jules_H

@iza Your "Really, seriously they were first?" comment made me laugh.. It's definitely hard to believe at times.  I've never been a sexist, racist or any of the other ......ists or .....phobes that have appeared over time.  I had a military upbringing, so in my very early teens was in Germany.  In school we were all kids of military parents and all taught never to do anything that would bring shame on our parents or get our dads into trouble at work for our actions, so they was no bad language, no bullying, kids/teens of any age didn't have sex... if we're were unruly kids it meant our dad wasn't a strong or strict enough parent, if he wasn't, then his ability to be a good soldier was questioned. Outside of school my friends were polish, Greek, Turkish and german, to us we were all the same just spoke different languages. When we got back to the uk I was almost 15, wow what a culture shock, the bad language, kids glue sniffing and inhaling light gas for a high, girls pregnant at 15... I'd never even had a boyfriend, to me, boys were friends nothing more. Not being raised around all the nastiness of people and how men and women treat eachother in relationships still makes me wonder why, as there's no reason for it. If I'm in a mood, I take myself off till I've cooled down, I wouldn't dream of taking it out on others.  I will admit though my patience does wear thin hearing excuse after excuse as to why I keep being forgotten about by councils and the people whose job it is to improve the health and wellbeing of others. I do understand they have others to see first, I just tire of always being the one who is never a priority, but stamping my foot and having a tantrum wouldn't get me any further up the list either. 

iza

Hi @Jules_H, I grow up without father. I come from Poland and looking back I truly have good childhood even when  I was brought up by mum only. I had lots  of freedom with balanced responsibilities. Sometimes, I really feel sorry for my son growing up here in UK ( sometimes I regret that I didn’t take him to Poland when he was small). Here children including my son  grow up under constant parental supervision, monitoring, mentoring which on most of occasions kills natural happiness in them. More over they observe and grow up having a mental aggressive people as next door neighbours and God’s only know why those in government seam not to see any problems with that.  (As long as they don’t have mentally aggressive people for next door neighbours everything is fine for them). I am really sorry for children that they cannot simply have peaceful childhood and enjoy those young years happily here. 

iza

And yes , people working for Councils mostly are people who were elected to be there by others but as soon as they take the stools and seat on them they seam to forget about promises they made before.  And yes  they claim governmental salary and  at the same time  salary from different jobs they do in life ( in how many places you can really be at the same time ?) In my opinion,  people who work for Council and are paid governmental money they better do the job they are paid for  by government. For me it means that they should look after people who elected them. Otherwise if they do not want to do the job properly the  tap 🚰 of those governmental salary should be closed for them (as simply paying people who only make impression create a hole in the budget). Otherwise my message is “ you want to govern the country why you are not going to do it for free on voluntary bases!? “  I also don’t like one more thing in this country that lots of companies advertise for volunteers and they say we need people to do a voluntary work ( free). Volunteering is Volunteering, work is work and work should be paid. So here in UK they should stop adding those two words together if they need volunteers they should advertise for volunteers if they need people for work than those people should be paid for work fairly. And is not only this country who act in this way other countries too and I simply do not like it. 

Jules_H

@iza Is the way kids are raised nowadays in Poland very different to how it is here? 

Many parents near me either wrap their kids in cotton wool so they never get hurt or they let them run wild. As kids, we had play areas and swings, the amount of times us kids fell off the playground things or went flying off the swings grazing knees and hands, we didn't care as it was fun. Nowadays kids are supervised constantly and the slightest trip or fall, they get taken home and aren't allowed to play there again, the other half of the kids have no respect for play areas and thing it's more fun to break it all, nothing gets said or done about them. The council's step in and close down or remove the whole play area. In the housing estate I'm in, and the surrounding areas, I haven't seen one playground that isn't within school grounds and even those are severely limited compared to when we were kids. The council's have their priorities wrong.. even with housing. I had a look at my county council write up for what they consider as "disability adapted”, as far as they're concerned as long as any building has a ramp outside to gain access it's classed as being adapted. 

     My being a wheelchair user with low vision while a few buildings in my town have ramps, and if they are or were signposted, kids have either torn it off or they graffiti over it.  I ask the council for more accessibility in my house as 98% of it is for able-bodied and I'm looked at as if "why can't you cope with what you have?" When I tell them I can't even see the work surfaces or use the sink, they treat me like I'm not trying hard enough. So it seems a lot of the vulnerable get treated the same as the wild kids, we get ignored.

     While I have been told I will get an adapted kitchen, saying it and it actually happening are two different things. I'm waiting to see who moves in next door... if it turns out they're aggressive with wild unruly kids, and it's prior to my getting the adaptations, I may request to be moved elsewhere. It'd be awful if I get the work done only to find I then have neighbours from hell move next door.

iza

I think bringing  children in my country of origin is more peaceful than here also you can be supported by members of families as usually most families live near by. Here the life is very stressful because of uncontrolled  aggressive behaviour of mentally ill  people and stressful because most families here don’t have the bubble of support  around. 

I truly hope you will get stuff sorted and adopted in your flat. If  the Council’s fail to provide adaptation please do complain to your local law centre. Council should and probably have budget for it anyway. 

I have my mum right side paralysed due to stroke. I look after her sometimes once I am  in my home country and my mum is person sitting on a wheelchair too. I must say that from time to time sometimes I sit down on her wheelchair and try  to navigate around her flat just to see how it is to be wheelchair user and how complicated it all can be. I do agree  it is hard to turn in certain points due to narrow space in hallway. So I do understand how you probably feel by now. Is there any funds/ grant you could apply for to help you adjust all what you need ? 

Jules_H

@iza That's a really good idea how you try navigating in your mum's wheelchair, it's a good way to experience issues she faces. 

I've waited 5 years just for a flat foot plate on my wheelchair so I can navigate the house easier, I was offered a powered wheelchair which is great, moreso as my left shoulder is permanently damaged so I can't always use it (I can't wheel around, wash, cook etc) with one hand. But... the drawback is.. the council must complete 3 external changes outside my house within 3 months or I don't get the new chair. One is a ramp outside the front door, one is a second bar on the railing leading up to the door. At the moment it's hand height, I think they're concerned I'll come wizzing out the door too quick and smack my neck on it, so they want a centre bar added which my legs would hit first... the other is, there's a small drop on the pavement to the left of my front door followed by another two metres of path... I have no idea why.... but it adds to the problem if the chair goes over that dip, there isn't the space for me to turn around and I can't get back onto the part by my door at all, so I'd either be stuck in that two metre area or on the raised garden.

Somehow I can't see the council doing this within 3 months, it normally takes them months or years to do anything here.. One glimmer of hope though, I have the visually impaired team coming next Friday, they apparently can and have arranged ramps outside front doors for people, so if the council don't, maybe the visually impaired team can get that ramp done in time. I need to keep on at the council.

I did see an occupational therapist early this year who told me I found two loop holes within the nhs and social services combined...
1. No-one within either sector shows a person how to use a wheelchair! (especially the nightmare of kerbs and steps which even experienced wheelchair users dread)

2. If a person in a wheelchair loses or starts to lose their sight, they must pass a series of  DVLA eye tests before powered and/or motorised wheelchair people will even consider coming to see them... However, once the eye sight reaches a certain point of bad, they're given a choice... A white cane or the wheelchair, "not both". One lady told me she's an amputee and registered blind, she has to have a wheelchair, so now stays home and doesn't go out at all