An exploration of the UK unpaid carer's world

Updates October & November 2014 with latest update on 25 May 2016 at 4c

It was a year ago this month that Carer stories here were posted to a then fledgling website.  Little did I know that I would be writing my own.


My wife's health has been very low.  We changed GP in July and things started to improve.  However, her mobility continues to be poor.  More recently, she was in A&E four times in one week and I followed her once soon after for something different.


She has been coping with a medication list numbering ten items with doses to take at various times of day.  It was only recently that I found out about blister packs filled for the week by the chemist, which have made a huge difference.  The matter of delivery, however has required three visits to the chemist.


Due to a drastic change in my ability to push/lift wheelchairs, I pick up a WAV in a few days time. See WAVs on the page here.  


Motability cars here. Fortunately, not needed yet.


The summer and continuing into the foreseeable future in certain domains is summarised as a long nightmare of dealing with what is loosely called "Carer provision" 


It was necessary to inform such practitioners that my second carer assessment was eight months overdue.  What followed was a nightmare in itself.  The assessment was carried out by phone.  The caller acted as reluctant gatekeeper. I requested to see someone in middle management. I went and there were two of them.  It wasn't the best of meetings.   


Since then, my case is being sorted out and I receive very worthwhile support beyond the call of duty from one of them. Update 25 May 2016 - JL - Senior Practitioner - Adult Wellbeing - Ross-on-Wye and Ledbury.  Thanks to her in 2014 and now, having supervised others, the provision for my wife and I is most satisfactory. Thanks also due to SP and LR.


In 4a it refers to problems continuing into the foreseeable future in certain domains.  Here's one.  Some situations involve healthcare professionals and others calling at your house.  One such set was told to phone before arriving and never before 3pm.  There was one occasion when they virtually barged in and another when they banged on windows.  They came again recently just as I was serving lunch.  I ignored them.  


Their line manager phoned at 6pm on the day we had just returned from an A&E visit. Such person was due to visit in ten days time.  That was cancelled.  The 4c person is giving great help, again, beyond the call of duty.

But it all takes time and mental energy.


In May 2013, I started the process of finding out about external wheelchair lifts.  I phoned in May of this year to be told that my notes had been lost.

Since buying a heavy-duty wheelchair in Oct, we can cope with steep slopes.


I took a long list of caree health and other problems to one of the orgs within the local carer provision to be told it could not help me. 


 I went here and have received a lot of help.


I phoned 7a in August with a problem needing a specialist.  I phoned ten days later as nothing had been done.


The question I ask in such situations is "Why does it need to be like this?".  Carers include those who are frightened off and, consequently, they fail in the attempt to be helped.  


A month ago the washing machine gave up the ghost.  

I had the task of opening it to take the hand-made-by-a-relative rug out.  That was a matter of trying about ten settings, rinses etc and, finally, a chisel.

Then I was asked what happened to the rug.  I replied "The backing is in that cool-box, the fibres/strands are in the other."

The new machine arrived in a whirlwind with the resultant chaos needing to be dealt with.  Why can't such workmen have pride in their work?


Additional to dealing with people in person there has been the coping with things like the list of computer-based tasks such as researching washing machines, WAVs and insurance, finding cheaper utilities and wheelchair lifts, too many of which involved long, stupid phone calls, it can be seen that updating this website is on the back burner.


Update 27 Oct

I didn't know in March that the No. 2 severe back-pain problem above would arise. I bought a new  car to cope with a small electric wheelchair.  It takes to bits but heavy bits.  I managed OK until, well, ouch.  

On the 25th of October, I backed our brand-new-in-March Citroen C1 into a brick gate-pillar.  Today it went in for respray.  When ready, it'll go on the web.  More computing!


All is not lost!

My wife is on the mend.  My back problems are in the hands of a good osteo.  That situation demanded a review of wife transport shown in 11.   She now has large new electric wheelchair to go in a new WAV. Very soon, I'll drive it into the WAV, press buttons to secure it, and away we go.  On arrival, chair on pavement, my wife is in control.

She'll be able to sit in the front passenger seat in her wheelchair having been driven  in, in it.  Brilliant!

Finding a WAV (see 2) has been an interesting process and a great result is due very soon.  I look forward to telling you about it.

There's another meeting with 4c soon and the person is the only Govt-official support I receive. 

13  Sunday 9 November

On Tuesday, after weeks of getting worse, my wife's right hip-joint has failed.  She can hardly stand, still less move much. Obviously, the pain is unbearable at times.

The good aspect is that we have all the equipment for her to move around the house (mini-electric wheelchair) and to get out and about.

In 12, it talks about telling you the WAV story.  It will be a couple of weeks yet.

14 Thursday 27 Nov

My wife has been in hospital for two weeks today.  More.

From the 9 Nov entry - In 12, it talks about telling you the WAV story.  It will be a couple of weeks yet.

The company doesn't deserve a page on any website.  It only responded to numerous complaints after legal action was threatened.


pagetop  here    for pasting   Updates October & November 2014  here