Reaching the point of no return

gussiefinknottle1

I’m sorry that this is going to be a long post. I will try to make it easier by breaking things up.

Me…. Chronic secondary progressive multiple sclerosis. Plus other comorbidities. More than 10 years receiving, Joint claim Income based ESA (LCWRA for me alone), standard rate PIP both components, housing benefit and council tax benefit. And now severe disability premium?

Partner…. Autistic spectrum.(undiagnosed) mental health issues, learning disability and since last spring rare leukaemia (tricky to treat with often poor outcomes). More than 10 years on joint claim for income based ESA, carers allowance, housing and council tax benefit. And since September last year enhanced rate PIP.

Cohabitation for the best part of 40 years. both over 60. Two bedroom council flat. Although we have not shared a bedroom for more than 10 years we have always paid the bedroom tax.( more on that to follow.)

Part two

We were informed in December of last year that housing benefit would be coming to an end and we would have to claim the housing element of universal credit before the end of February, we did this after postponing for a short period.

For years we have gone without holidays, expensive clothes, days out, personal maintenance (he cuts his own hair and I have not had a haircut for more than 20 years, unless you count occasionally chopping the bottom of it off with a pair of household scissors) evenings out, takeaways, almost everything in our home is secondhand or worn out(his bed is more than 25 years old and no longer fit for purpose)all this going without has left our bank accounts with more than £ 10,000 this was to enable us to pay for both our funerals and we both have an appointment to do this.

Sorry about this being so long.

Part three

Previous to my claim for universal credit we were receiving.

£366.80p per fortnight ESA.

£114.46 per week housing benefit.

And full council tax benefit.

Universal credit payment since new claim was made.

One payment of £1956.00

Two payments of £529.80

One payment£766.69

Two payments of £276.40

One payment of £91.43
Plus one additional back payment of bedroom tax that we wrongfully paid of £80.74.

Since the 17th of February we have paid our council £1400 including over £200 worth of rent arrears.

We have also received two council tax bills one of which I think as was for £186 the other for the full council tax of over £1,600 a year which do I pay? I’ve already paid them £18 which should have been the first payment of nine.

On the 11th of February I’ve got a letter saying my ESA would be £263.50 a week increasing from the 8th of April to £269.40 a week due to increased rates of Social Security benefits. Which I believe is due to the additional severe disability premium they are now paying me as this was increased from £186.50 per week, as I also received a letter dated the 11th saying that they were going to pay the SDP at the lower rate.

They are also no longer charging the bedroom tax and refunded 80 quid. I’ve requested that they backdate this to when my partner got sick from the leukaemia but they haven’t responded yet.

I found this all very confusing because as far as I was concerned, we were only claiming the housing element of universal credit. We are still receiving all of the other benefits that we had previously been receiving.

Sorry again for the long post.

Part 4 PIP

Because my partner’s prognosis was extremely poor I was told that he would automatically qualify for the enhanced rates of PIP, he was extremely reluctant to claim this after I spent weeks convincing him that he needed to claim it he gave in, of course I had to fill in the claim form for him, unfortunately within days of receiving it I also received my own review form so now I had two of the darn things to fill in! (Such joy)

long story short mine was only completed a few weeks ago and although they’ve extended the award it should have been increased based on my condition deteriorating, for example I’m virtually housebound and only get out to appointments using community transport. I explained in great detail everything about my personal care my mobility and that although I’ve provided medical support in the past supporting my claims I don’t have any to add to this review and I explained exactly why. (Long and detailed explanation) I’ve requested a mandatory reconsideration and they’ve asked me for more evidence inspite of the fact I’ve already told them that I don’t have any! What should I do now? My mental health is lower than it’s ever been and I don’t know how much more I can take. My brain is like chopped cabbage and I can’t do the calculations for the benefits and feel like they didn’t really read my review form properly so they didn’t allocate the points correctly on my review assessment. So for example they say I can cook a simple one course meal but I’ve told them I’ve been living on ready meals, cereal and toast for months and don’t cook anything using fresh ingredients, I walk very slowly and unsteadily using my rollator for support or walls and door frames and can only walk very slowly out of my block and onto a community support bus (15 metres door to door) before I need to stop. And on and on it goes. Into every nook and cranny of my life. If they had read everything I’d written I may have had a face to face assessment but would I’m certain have still had a lot more points.

WHAT THE HECK DO I DO? I feel like I’m going round in circles!

anisty

I always re submit the same evidence over and over so there's one thing you could do - re send your old evidence and expand and update your anecdotal evidence.

They say they don't want old evidence but, IME, if it is relevant, send it.

Second, you are having appointments so registered health professionals are seeing your deterioration - make sure you can use their names as contacts for DWP, rather than a gp.

An Occuptional Therapist is a much better contact. If you are having to have help from a paid carer or support worker - again that would be great to have a supporting statement from them.

I can't help with your other points but my comment will bump your post up so others might be able to help with those.

gussiefinknottle1

hello again, I don’t have any evidence now! Long story

I was referred to consultant neurologist, seen by him for two/three years, discharged into the care of specialist nurse who retired less than 12 months later. Didn’t get replacement for nearly two years then Covid struck and I’ve had no further contact, GP of about 35 years retired two years ago, have seen 5 different GPs since about other issues. Appointments I’ve attended in the last 12 months, mammogram, consultant dermatologist, retinal screening, x-ray, ultrasound, MRI scan on my leg, dentist and various appointments to see my partners consultant haematologist (leukaemia specialist) none of these would be any use whatsoever when it came to benefit claims.

I asked a couple of weeks ago at my practice if they would re-refer me to see a specialist nurse as I told him it is now five years since I’ve had any contact with them and I’m deteriorating and I didn’t feel that I could just pick up the phone and refer myself after this length of time. How long is that likely to be? how long is a piece of string?

I’ve seen an occupational therapist twice years ago, my partner is my carer. although these days I’m his carer and the DWP recognise this although don’t pay me any additional money for this.

what else can I say or do? Send photographs of my equipment, and freezer full of ready meals? I could repeat what I originally put in my review form and expand a bit more but other than that, I’m up the river without a paddle!

in the meantime, the clocks’ ticking!