RSS

Tag Archives: Muscular Dystrophy

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.

 
8 Comments

Posted by on November 13, 2019 in General, Life

 

Tags: , , , ,

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

 

Tags: , , , ,

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.

 
6 Comments

Posted by on September 17, 2019 in Projects

 

Tags: , , ,

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 🙄.

 
6 Comments

Posted by on September 16, 2019 in Projects

 

Tags: , , ,

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…..

 
9 Comments

Posted by on August 30, 2019 in Projects

 

Tags: , , ,

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.

 
4 Comments

Posted by on August 21, 2019 in General

 

Tags: , , ,

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……

 
2 Comments

Posted by on August 13, 2019 in General, Life

 

Tags: , , , ,