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Tag Archives: Muscular Dystrophy

Sensible or Sinister

I know I have to move home, but where to go and how to go about it, is a big scary slathering barking hell hound. Going from financial and roof-over-head security to not being so much so. There is a great deal to wrestle with.

Since about week three of lockdown isolation my mind has been racing to an idea, to go through every single item in my hovel and either sell it, donate it or bin it, keeping only a very few considered key items. I really do mean everything, every keepsake, gift, trinket, souvenir, ornament, memento, book, cd, dvd, photo album, crockery, cutlery, glassware, clothing, shoes, costume jewellery, hobby item, stationery item, tool, cuddly, pot, pan and dish. Slim everything down to only the necessary minimum. I have held onto things in order to feel connected to people, places, memories, times when I felt included, involved, almost necessary.

As I cannot move about to fetch things or return things, why keep them, is knowing something is in an inaccessible drawer any different to knowing I once had it. Why hold onto kits, cloths and silks when I’m never going to cross stitch anything again, why keep the pieces I’ve done that are sitting in the drawer, done to fill time. There are things in this abode that haven’t seen the light of day in 5-7-10+ years. There’s a box of vinyl records in the wardrobe that have been there 15-20 years, I don’t even know all the albums that are in there.

But I, myself, cannot do any of that. Someone else will have to lift and fetch and handle. Whether it be taking items to a Post Office to mail, or local refuse/recycling collection centre (7.5 miles away), or charity shops. Someone else will have to fill the recycling big or general waste bin. I might have the idea but others will have the execution.

With my increased deterioration I will need more equipment, power chair, manual chair, shower chair, hoists etc, all which need space to be kept ‘out of the way’.

Is this need a sensible preparation for the future (even maybe getting ones affairs in order, when that times comes), or is it a sign of something relating to mental health triggered by my changing circumstances and the weeks, months, of lockdown.

 
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Posted by on May 30, 2020 in Life

 

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Stunned

Well, dear reader, I am somewhat stunned into disbelief, silenced and generally in a state of befuddlement.

Postie dropped an ominous brown envelope on the mat. It felt a little thick, hmm, so more than two sheets of paper, is that a good sign.

Okay, so maybe this is the letter about the face to face interview, I’ve been expecting the need for one. Is it an instruction to attend an interview somewhere miles away or maybe a face to face at my home at before-carers-arrive o’clock. Which ever it’s likely to be something that needs my input and wrangling with a call centre.

Tentatively I slit open the envelope and with a degree of trepidation I took out the sheets of folder paper and began reading. Initially I couldn’t comprehend the content, I finished my coffee and tried again. Well… well… well…….

This was not a request for extra info, nor details of a face to face interview, nor details of not meeting the criteria. It was in fact an award letter. Not just an award letter but an increased level of award letter. Not just that but an indefinite award letter. Not just that but details of back dating award to September.

😳

All that attention to detail and chasing for assessment reports and so forth was worth it. Okay so the care component only covers a quarter of the bill, but with the mobility component that bumps it to half. That should help the saving last a little longer.

Let me just go and read that again …. Incase I was projecting, nope it definitely says enhanced award.

 
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Posted by on November 13, 2019 in General, Life

 

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Waiting for others

Update ….. ‘still‘ waiting for the Social Worker assessment report. I called to chase up and was called back with someone relaying they message ‘by Thursday’, I’m wondering whether to hold by breath or not.

Today the PIP peeps wrote saying they have all they need to make a decision and there’s no need to contact them (I’m still intending to send the Social Worker report when I get it because I think it’s necessary).

So, I’m waiting on people who are necessarily bothered about time tables and deadlines.

*sigh*

 
5 Comments

Posted by on October 8, 2019 in Life, Projects

 

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I’s crossed & T’s dotted

The dreaded form was given another read through, I had neglected to make it plain and clear that my physical restrictions were constant and unchanging, no good days or bad days just days. While BFF was here we scanned in my Occupational Therapist report so I had a copy on the computer, printed off the support letter from the MD Care Advisor and another copy of the OT report (even managed to fandangle the two-sided printing!)

We scanned in my completed form, it’s the best way I can keep a copy of exactly what I had written. We made sure I had signed the form, stapled the evidence together and slid it all into the envelope provided, Now even though they provide a freepost address I decided to send it belt and braces. When we went to the Post Office I said I wanted it sent so I could check online to know it’s been delivered, I paid the £7.40 and got the stickers stuck.

Next day I checked the tracker and took a screen grab showing the time, date, address and signature of recipient. Phew, it’s in the building, I have done all I could.

Now I wait ….. wait for the Social Worker report, scan it, print off a copy and send it to them (and hope it finds its way to the rest of my papers) ….. wait for the decision from DWP as to whether there’s a face to face visit or not.

*fingers-crossed*

Phase one complete, begin waiting for phase two.

 
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Posted by on September 17, 2019 in Projects

 

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Unprofessional Professional

August 23rd, the day when plans went wrong and although it was 99% circumstantial I was 100% put out by it all.

The day was supposed to go along these lines, 2:15pm organised care visit to load up the slow cooker and have a toilet stop, 3:00pm social worker visit to update care assessment and risk plans report, 5:30pm Nephew delivers fresh bread, 6:30pm dinner making care visit.

This is what happened, 2:15pm carer arrived, usual pit stop routine, start loading the slow cooker and the phone goes. Social Worker called to make me aware he was running about thirty minutes late. No probs, all good, sit and wait. Postponed BFF’s walking home 4pm phone call. Waited some more. 5:00pm Social Worker wandered in, no apology, no explanation, sat down ready to go through lengthy assessment which needed many edits, as well as corrections and additions. 5:20pm carer arrives, now I could have said it was not convenient but then I wouldn’t know when or who would be arriving and my dinner was brewing, so forego toilet pit stop and while she’s dishing up my noshings Nephew arrives on time with bread.

So here I am, eating my dinner, Social Worker still here going through report, unable to spend quality one to one time with nephew (first opportunity since Big Sis, his Mum, had died and we’d held the service).

Social Worker eventually leaves about 6:15pm with promise to get report done and to me before I need to send my PIP form back.

As no report dropped through my door by 3rd September I telephoned the office to be told my Social Worker was on two weeks annual leave (why didn’t he mention this at our meeting) and was told someone would call me back. 5pm the next day the call is returned and caller says SW had left a note that I ‘might’ be calling about it (too bleeping right, I was waiting for the promised document). Essentially the note was sorry I’ll get it to you after I get back 🙄.

 
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Posted by on September 16, 2019 in Projects

 

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Battle Commenced

After taking an afternoon to read the instructional notes and the forty paged PIP2 form, I ruminated, cogitated, considered, made notes, and sat at my desk last Saturday morning and began the dreaded task.

Okay so the first couple of pages were not so daunting, listing the names, address and last appointment dates of medical professionals I have contact with. They only have boxes for three, I have six, hmm, how to prioritise, those I see the most (Physio, Occ Health) or the more important sounding (Consultant, GP) and make a note to add the others in the ‘additional information’ section.

Now to the gritty part, how my disability affects what I do in general areas of life, how it’s gotten around, what aids are used, what extra is needed. The tick boxes are ticked, then the explanation paragraph, how to be concise and exact to cover all scenarios within the half dozen lines in the box provided. Completing these things can be mentally demoralising because you have to admit, in writing, all the things I cannot achieve and the impact it has every moment of everyday, the exact opposite I am trying to think about every moment of everyday. Also I am so used to doing things the way I do, it is easy to forget it is not the general natural way that ‘ables’ do it, my usual is so normal I don’t think of it as different or awkward, but it needs adding to the form. Always keeping in mind the reader knows less than nothing.

I scribble draft one in pencil on my note pad, edit it, and check the wording for its accuracy and spelling before committing it to the form in ink. As my fingers, wrists and arms are affected by my FSHD I struggle holding the pen/pencil and writing clean and clearly for any length of time can cause strain and cramp, so after three questions that’s enough. Time to put it away and come back to it another day. I returned to it Sunday morning, reread what I had written, add something I had forgotten and start again with the next question, and again on Tuesday, making other notes of what to add in the ‘additional information’ page.

So far I have a detailed letter of support from the Muscular Dystrophy Regional Care Advisor and a lengthy report from the Occupational Therapist, I am waiting to receive a second lengthy report with risk assessment from my Social Worker.

Across the weekend I will finish the form, a friend (former work colleague) is visiting Saturday and she’ll read it through to see if it makes sense. Then Sunday I’ll scan the pages into my computer and copy the reports I have, printing my details on the back of every page incase they get separated in the office. While my BFF is here we will wander to the post office and despite it being a free post return, get a certificate of postage, pay extra for it to be tracked and signed for. I’m wondering what it costs to hire a guy with a briefcase chained to his waist because I am not going to be happy if it goes missing before being properly processed.

The saga continues…..

 
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Posted by on August 30, 2019 in Projects

 

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It did indeed thud

Well the doormat actually groaned as the large A4 sized brown envelope collapsed to the floor. There I was, comfy under my duvet, contemplating my day, waiting for morning carer to arrive when this *thunk* travelled from porch, across the lounge, along the hall, into the bedroom and landed in my dozing lobes.

The accompanying booklet some twenty pages, along with the forty paged form, it’s covering letter and return envelope amounted to a significant hunk of pulled tree.

I’ll be busy for the next couple of weeks while I take time to put together my evidence (which I’ve chased up again) and carefully and concisely complete the questions and add the additional details as required.

This is worse than any examination I’ve ever done, the stakes are pretty high too.

 
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Posted by on August 21, 2019 in General

 

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My Mat Remains UnThudded

Well folks we are a week further along from the telephone call stating that the original PIP2 form has not arrived and guess what ……. it’s still not arrived. *sigh*

I grasp the phone and dial the freephone number (ever wondered what their phone bill looks like 😲). After going through the ‘please visit out web site at ….’ schpeel, the press 1 for this, press 2 for that, press 3 for the other, press # to hear these again, I sit tediously in the loop of a very tinny opening strains of Vivaldi’s Four Seasons which is interrupted with the ‘All our operators are busy right now, please hold or you may wish to call back’, back to Vivaldi before being interrupted 30-seconds later with the same voice.

Seventeen minutes later an actual proper live human person speaks! We whisk through the security questions (I sometimes wonder if I sound too confident and knowledgeable when I answer them, too many times answering the same questions plus too many years asking the same questions). Up shot – call back on Monday if it’s not there – it seems last weeks lady was a tad bit over eager in our Royal Mail operatives.

I explained that I wouldn’t be calling on Monday because it’s Big Sis’s funeral and I don’t think I’ll be coherent enough for business. She was incredibly understanding, made a note on my claim (brain was visualising the old 110 screen from my days as a processor) and said to call on Tuesday or Wednesday.

So in limbo, I wait……

 
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Posted by on August 13, 2019 in General, Life

 

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Brown Envelope Lost

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Well ….. *sigh* ….. it begins.  Remember I said that the dreaded envelope had thudded to my floor?  Well his follow up one hasn’t.

After a mere 17 minutes of listening to the repeated opening strings of Vivaldi’s Four Seasons and uncountable “Please hold” thingy I  got an actual person answered.  After the relevant security questions which I think I zipped through too confidently a new form should be with me in a week – which makes me wonder why the first form was allowed three weeks to get here.  Hmmm…….

 
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Posted by on August 6, 2019 in Grumble, Life

 

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The Ominous Brown Envelope

It’s arrived …. I’ve been waiting for it since 2013. This time it wasn’t Royal Mail’s infamous tardy service, more a case of good idea failing as soon as it was put into practice.

I’m talking about the DWP migrating Disability Living Allowance (DLA) to Personal Independence Payment (PIP). As DLA was a benefit claimable from birth to 65 years old there have been many changes in policy, administration, review process, awards criteria during its life time, as well as medical progress with many conditions. I fully supported the need for a major review and reassessment of claimants to make things more even across all spectrums, but it was obvious that the incentive behind it was to reduce the benefit bill and ‘move’ people into work. The DWP in its ‘wisdom’ out-sourced this mammoth task to a company called Capita (also ATOS) who tendered a two year time table, an assertion of numbers of claims rejected/stopped and the minimal number of staff needed. Many of us would have seen news reports and media articles about disabled people being forced to seek work when they obviously are not able to work, as well as reports about how slow and bogged down the switching process has become, reports of Capita/ATOS staff going off sick with stress and depression, the poorly trained or qualified staff making medical decisions, the number of award decisions being appealed and subsequently awarded at a higher rate. Generally the whole business has been something of a debacle.

Now it is my turn. The brown envelope dropping on my door mat on Friday 12th was the letter informing me that my DLA award would be ceasing unless I began a PIP application within the next three weeks and that I should telephone the claim line with a list of information required.

Taking a couple of days to calm down and amass all the health professionals business addresses and telephone numbers I waited to call on Tuesday 16th. It’s never good to telephone bureaucracy on a Monday in my opinion. A twenty minute phone call where the lady zipped through her well worn script began the process. Now to wait for the heavier brown envelope containing the forms to arrive sometime within the next two weeks, or I telephone them.

The nail biting aspect is how to get across to the claim processor exactly what my limitations are with the evidence I can provide. DLA/PIP is a ‘gateway’ benefit, it is a primary indicator of a persons circumstances which means additional premiums are added to other means tested benefits (like Council Tax Benefit, Housing Benefit), for me that has no bearing because I’m not receiving such benefits, but for many it is their everything. Copious notes, copies of documents and records will need to be kept of the whole process just in case I need to question things or appeal a decision at a later date.

I’m off to the Gov.uk site to download a copy of the form coming and the assessors information, to educate myself.

So it begins…..

 
6 Comments

Posted by on July 20, 2019 in Life

 

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