Have to move due to health

Thanks Sukes yes I have to change over to PIP.. I have not found doctors very supportive where I live. Hence the reason I am worried.. My housing officer was more helpful..

Hi Laura,

When we were moved from a 3-Bedroomed Privately Rented property to a 3-Bredroom Bungalow with aid from the local council is was all done on Medical Grounds. Social Security hired two removal Lorries to move us just from one road to the next - again this was done on a grant because of my disabilities.

My DLA back then was High Rate Mobility and Middle Rate Care, we did not notify Social Security. To be honest I didn't even think we had to because we only moved so everything was on the level. Basically, I could no longer go upstairs, and using a commode, is not really hygenic when we had 3 children.

Bear-in-mind this was nearly 20yrs ago. When we moved in to the bungalow, it had to have many modifications done. First was the central heating and driveway. The driveway needed redone, it was just all uneven tarmac. That was redone and another part was put in to slope for wheelchair access to the frontdoor and disability hand rails.

The toilet and bathroom were two separate rooms and far too narrow to even get a wheelchair in. The whole bathroom was redone, the toilet and bathroom become one room with safety handrails. The bath was removed and another one was fitted with a shower on the wall. An electric seated was fitted inside the bath, basically to lower me in and out of the bath.

I was given an electric Hospital bed to aid sleep and to help with swollen legs, and an electric 'Dual Motor' Riser/Recliner Chair. I have walking sticks, but I'm unable to use them, I've got a Quad Chair push - some days if I have the strength I can use it for about 2-3 steps, but by then I'm out of breath. So I have to rely on my wife and family to push me around in my wheelchair!

We are on the Telecare Emergency Service patched in to Bristol, 24/7 Fire Alarms and my braclet are connected to the box in the lounge.

I had a Clos-o-mat toilet/Bidet fitted last year under another DFG for £3,100 - I was happy with just the seat version, but it was turned down by the council because they had a bad reputation of breaking down and only cost £1,000, so the council changed the DFG to have the entire toilet changed to Toilet/Bidet... To most people it frightens them, but with me it gives me just a little bit of dignity back.

About 3 years ago, my own doctor asked what levels of DLA I was on, I told her and she said you should be on the highest rates for both components. Well, we thought we'll it cannot be lowered so it will either stay the same or go higher.

So, my wife applied for it, but accidentially filled in all 4 pages when it stated just the two pages. She also included, all medications and effects they had on me, what I was like in the day & night, and how many times my wife had to help me. On many nights even now, she only get 4-6hrs sleep if she is lucky. Most of the time it is me requiring the toilet, which may sound strange.

I hardly go anywhere from the bungalow unless its many outpatient appointments, doctors appointments, etc. Most of them are due to emergency operations I had done over 3 days in hospital with nearly a year to recover. Basically, I was dying from the inside out, the pain I was in was unreal, the surgeons eventually removed over 50cm of my intestines and part of my liver.

We did have a letter back from the DWP asking us to contact them, well my wife was my carer so she dealt with the call. The guy that phoned us, asked why did we not apply for my DLA to be increased before? My wife said, to be honest we did not think it was worth bothering the DWP over. The guy was stumped, he said the amount of medication and the number of intervals between medications is like nothing like he'd ever seen before, he said they had received a letter from my doctor, backing up everything up that was in the main application form, and the addresses of my consultants at two hospitals I attend for injections every 10 weeks. He said we just need to add more details on our system, regarding my health and conditions. But he did say you should have contacted us along time before it got this far - he even stated, if he could he would have back-dated the payment difference by 13 months, which is the maximum they could go back - but in your case we can only pay from when we received the updated information. He said he was really sorry he could not back-date it further.

He mentioned nothing whatsoever about paying back money, but I suppose in my case it was the other way round, I was entitled to it, yet I never actually applied for it.

Having the Clos-o-mat installed came under a DFG along with a 12 month warranty, but after the warranty runs out (October 2016) - then we have to take out a Service Warranty at £15 a month or £180 per year, that includes a full service on it.

What gets me is people that think the disabled or sick people that are on benefits can afford holidays, etc. My DLA covers petrol, the servicing of the bidet/toilet. And more, I have many aids that I have not mentioned, many are on hire and also on service contracts. ...And, people think we are rich, believe me, I cannot even go out of a 20 mile radius from the property, due to my health!

My DLA to PIP will be due soon, am I bothered about it - no, what's the point in my case, the hospital has 4 volumes of case notes! I see numerous Consultants regulary and Specialists, but only one Consultant has the say on any changes in medication. GP's had me on medications, but on the NHS, it's the cheapest types, which normally irritate IBS, which I also suffer from. So the Consultants changed all my medications to the more expensive types because of the side-effects from cheap medications... You'll be surprised what goes on behind your back with medications you rely on.

So, Laura in my case I did make the wrong decision as regards to updating my details of address, but back then I didn't think it made any difference. My disorder is progressive, and can only controlled to a degree.

I wish you luck with your claim though!  

Regards,

Les.

P.S. - I started this reply 8 hours ago! That's why it so long, and I also fell asleep, but thats the drugs kicking in every now and then.

Thank you for taking the time to write this reply..I can totally understand why they would have wanted you to update your details and I am glad you are getting all the support you need.

Yes I have had so many problems with medications and feel they add to the problems instead of help attimes. Everytime I have another problem they pop you on another medication with no information and at times you have to educate yourself as it can have a knock on effect on other medications used.

You have to be admired Les that you go through so much and still come on here to help others.. I have seen a lot of your posts and you certainly know what you are talking about.

​Thanks very much appreciated

Yes I get the feeling that will apply to me as well..Its stressful moving and even more stress having to apply for PIP..

And both at the same time! May I suggest an essential oil diffuser and put Ylang ylang in it.

Forget the Ylang ylang, a couple of joints would do the trick - float off to a sunny tropical island LOL 

Until I became ill stress never affected me, in fact the more stress there was it made me work harder - now stress makes me feel suicidal.