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Health and Disability / Re: Care needs assessment
« Last post by Fiz on Today at 03:50 PM »
My doorbell went at 9.15am today. I had collected my doorbell receiver from the kitchen where it charges overnight so could let the caller know I was on my way and put my dressing gown on and went down to the front door. A lady in gown, gloves and mask was there saying she'd come to provide me with my daily 30 minutes of personal care! Nice to know they were coming! Something tells me the MPs letter has triggered a response! I was so shocked to see her and so unprepared that I turned her down today asking her to tell her office to phone me. I needed time to consider whether I can manage alone now or do I still need help. 

Yesterday I had real deep extreme fatigue and had to go back to bed by lunchtime as I couldn't sit up as I didn't have the energy. That's the first day in a while that I have been incapacitated but it was enough to give me caution and not turn away care without thinking it through. My CPN came this morning and also thinks that having waited so long for this care that I should accept it and see how I go. She thought I could think of other things they could do in the 30 minutes if I don't feel able to shower that day such as lunch prep but I am unsure more than personal care is on offer. 

I got a call from the Mental Health and Substance Misuse Team social worker about the care this afternoon, she had assumed the reablement team would phone and make an appointment with me rather than just turn up. This social worker told me a few weeks back that my request for care had gone to her team by mistake and should have gone to the physical disabilities team and that her manager had told her to send the phone assessment results through to the physical disabilities team for them to action. I'd heard nothing since and as she's phoned me and still clearly holds my case it appears it never got sent to the physical disabilities team at all hence zilch response. 

My letter to the MP appears to have brought an unannounced carer to my door but my hope is that the five and a half month wait for care will be investigated so that it doesn't happen to somebody else. I actually had to reach a point in wellness/health to be able to advocate/action my request for help to the highest level needed to get a result but reaching that point of wellness means the help is no longer crucial. Sometimes I wish I had a family member to fight my corner for me when needed! 

Ho hum. So I have a carer coming tomorrow morning.
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Health and Disability / Re: Wheelchairs
« Last post by Fiz on Today at 03:27 PM »
I did wonder about the headrest! I'm so pleased that I found this one before ordering the Pride, having watched the YouTube video on how to fold this one up and open it, it's so much easier than the Pride Igo plus the YouTube video demonstrated it going around skateboarding ramps. It's very stable and manages steep slopes I'm far less worried about stability with this one and it'll handle kerbs fine. I'm not intending trying out skateboarding ramps! And this one comes with airline batteries as standard not that I think I will go abroad again but you never know. 

I think you're right in that the XL isn't obviously talking about user size. There is an XXL size which I think would be more obviously talking about size but think this one is not so obvious. I might be okay in the standard chair, they both have the same user weight of 28 stone which is considerably more than I will ever need so it's just down to comfort in the chair. I am going to order it as soon as I raid my savings which takes a few weeks because my church has just started to meet in person again and it's less than a mile away which should be easy in the chair. I haven't left the house 'on foot' in many years because I can't walk far so it will be weird being able to go somewhere from my house without the car. 

My CPN came today and I said I feel embarrassed about using a powerchair when I am physically able to walk, it's all due to the pain standing and walking causes me rather than an inability to walk. I think I will feel embarrassed about getting out of my vehicle, operating the electric hoist to get the chair out, setting it up and getting in it but I know it will enable me to go into shops and queue for checkouts or for appointments all without the pain. As the CPN said we tend to imagine the judgements in other people's heads where they may not ever be thinking things plus if they are being judgemental that says everything about them and nothing about me. I feel ridiculous worrying about what people will think of me when they first see me in a chair, I feel shame so easily. It's an overriding emotion people with Complex-PTSD have and it doesn't take much to trigger it in me.
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Health and Disability / Re: Wheelchairs
« Last post by ditchdwellers on Today at 01:07 PM »
I've just looked at it and it looks like an excellent choice to me! I didn't think the branding was that obvious or intrusive and it's not the sort of thing I notice anyway, unless it's really garish, which this certainly isn't. I wouldn't have associated the XL term on the branding with the person's size either and I'm in agreement with oldtone. You can always put a sticker on it.

Don't let it put you off buying something that has the ability to make your life so much easier. 

(I would definitely go with the optional headrest too!)
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Health and Disability / Re: Wheelchairs
« Last post by oldtone27 on Today at 08:55 AM »
I suspect your wheelchair makers are borrowing from past car designations where XL denoted a higher specification model.

Perhaps you could buy some stick on letters such as GT. :f_whistle:
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Health and Disability / Re: Wheelchairs
« Last post by Fiz on 05 May 2021 07:31PM »
And now I have changed my mind and am interested in the Lith tech XL folding powerchair. It has a much greater range battery wise, copes with a lot of terrains and folds up far easier. 

I'm thinking of getting the XL as it's a wider seat and I am not slender but my only complaint is that it has Lith tech XL in wapping big black letters on the sides. Who wants their size broadcast to the world like that?! It might as well say "fatty" on the sides  :f_doh:
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Health and Disability / Re: Care needs assessment
« Last post by ditchdwellers on 05 May 2021 01:10PM »
That's a hopeful response from your MP,  Fiz . It will be interesting to see how Social Services act following this.  I'm sure for every complaint that is made, there are innumerable people who havè received similar treatment but are not in a position to actually make a formal complaint. 
I feel it is part of my responsibility to hold people to account for their poor services and complain like the grumpy, middle aged, old bag that I am! However, sometimes I'm too unwell to do this, and I always hope there's someone around who can fight my corner for me. 
:big_hugs:  :big_hugs:  :big_hugs: to all fellow complainers,  and if anyone needs help with writing a letter of complaint please let me know and I'll do my best to help or signpost you to an organisation who can assist. Take care, my fellow Ouchers  :heart:
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Health and Disability / Re: Care needs assessment
« Last post by Fiz on 04 May 2021 04:44PM »
My MP's response arrived today. I'm unsure if he took in what I had written in my letter because I said that my adrenal insufficiency has improved and I am hopeful that I won't need help at home now but that I was concerned about the lack of response or offer of care in five months and want to ensure that it won't happen to others in need of urgent care and yet he says in his letter to the Director of Adult Services that he hopes his contacting them will get things on a practical footing and lead to a positive outcome. His sentence to me says he's sorry to hear of this disappointing situation and he will ensure the reply from the Director of Adult Services is sent to me as soon as he receives it. 

Hopefully the Director of Adult Services will fully take on board what I was saying when he reads my letter and change the referral system so people are assessed quickly and not neglected. It would probably be too much to ask for an apology for the distress that I have been through being so alone and so unwell. As I said that "I hopefully" won't need help at home now, it would be good practice for Adult Services to phone me and check whether I am okay before closing my request for assessment because as far as they're concerned until hearing from the MP I am still waiting for care five and a half months on from requesting it. 

Maybe it's a ploy to cut back on their budget. Just don't respond to requests for care assessments?
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Cafe / Re: Decluttering
« Last post by ditchdwellers on 02 May 2021 06:07PM »
Yes, our local dogs trust charity shop are starting up home collection again in a week or two, so it may be worth phoning around a few to see if there's anyone who can help you, particularly if you have a chosen charity in mind. 

It sounds like you're making good progress Fiz! Remember to pace yourself! :thumbsup:
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Cafe / Re: Decluttering
« Last post by oldtone27 on 02 May 2021 01:04PM »
Some charities can arrange to collect. The charity I volunteer for, Dorset Blind Association, does although I am not sure if they apply any criteria of amount or type.
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Talk / Re: Lifting restrictions by Fiz from UK site
« Last post by Fiz on 02 May 2021 12:04PM »
My church was starting services today and I had booked a space to go. Then I received a church email yesterday talking about keeping 2 metre distances and for some reason that caused a panic attack. I had thought that as we are masked 1 metre was okay but the 2 metres would make it difficult to hear each other in a busy room with others talking. Plus they're not putting chairs in a row, they're placing chairs either singular, two together or more as needed by people according to household/bubble size so my chair would be a lone chair on it's own and I am worried I will feel like a leper or Billy no mates. Plus despite being masked it's against the law to sing so we have to just listen. In the end all the anxieties about distancing was just too much and I didn't go. The restrictions are just not lifted enough right now for me to feel able to go to church. Roll on June 21st when all legal restrictions cease.
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