Rae's ESA...

[RaeUK]

Hi Rae, that's awful for you, I'm so sorry. I guess you've looked at the CAB website about help available? I thought it was illegal to leave someone with no heating, but maybe that's not the question you were asking?

 

Which electricity company are you with, if you don't mind telling us?

 

Our local council has a scheme that people can donate to, which helps people who need heating costs, although I don't know offhand who qualifies.

 

I hope you find a solution to this.

 

My best, HB

 

 

[sorry, haven't figured out how to qoute from another thread]

{and as if by magic - it's quoted!! - Erika xx}

 

I've been on the 'assessment phase' of ESA since November 2008 and should have a Tribunal hearing sometime after March the first. My understanding is that, as I don't yet get the disability premium, I'm not eligible for CWP.

 

My last spirometry test showed my level of COPD at 'severe'. Cold weather is not friendly to me!

 

The reason I've suddenly hit a bit of a crisis was due to having to renew my car tax [£104.50 for 6 months] a few days ago. If I take my time I can walk ok'ish but there is no way I could survive without my car. I live in a country village with minimal public transport. [it's a four mile round tip to my corner shop!]

 

There seemed to be very few options left for me to try to skimp and limp through the next few weeks. Already skipping some bills but others have to be met.

 

The most crippling thing at the moment is the electric. [No gas out here]. I'm on a key meter, Economy 7 night storage heaters. This is costing me over £25 a week. That's probably less than most people but it's a lot to me. I only have one cooked meal a day and have three heaters on. Apart from a few small appliances that's pretty much it.

 

So I turned off the heating. Not an easy decision tbh, but I thought I can always wear a coat to bed!

 

I know key meters are expensive but I don't want a quarterly bill I can't afford to meet. However I've got to reduce this outgoing somehow. So I phoned Southern Electric to enquire how I can change to a quarterly meter. They said they'd have to do a credit check first of all. I knew I wouldn't pass that and promptly burst into tears!

 

I ended up having to explain what I'd done and, to be fair, he was pretty appalled especially with the state of my health.

 

He arranged for me to be added to their list of 'heat dependant' customers. One of the benefits of which is that they bypass the credit check. They also run a rebate scheme for the vulnerable which he's sending me details about. And then he said he'd spoken to his Manager and he was sending me a new key with £20 credit to make sure I had heat for a while. [That was yesterday and the key arrived this morning! So I have been able to put the heating back on].

 

I'm grateful to Southern Electric for their help and I'll soon be off the key meter.

 

I do have an appointment with CAB on the 12th regarding my Tribunal and I'll be speaking to them about what else I can do.

 

Apologies for the mega post but, if someone else is in a similar situation, I hope my experience can help.

 

Rae.

Edited January 5, 2010 by ErikaPNP
stated within post

[ErikaPNP]

Hi Rae - thank you for sharing this, I'm sure some of our other members will find this very helpful.

[RaeUK]

Your welcome, Erika, and thanks for using your Harry Potter magic wand...

Rae.

[MIKEY DABODEE]

Rae cant you get DLA

 

You are right about not being entitled to the CWP its unfair.

 

Southern Electric went the extra mile for you, but its wrong that people for what ever reason cant get their electic on a quarterly meter and have to pay dearer by the way of keys etc are penalised in this way. Surely most of these people need the cheapest fuel they can get as they are on low enough Incomes to start with and can ill afford to pay any tariff nevermind the highest going.

[RaeUK]

Hi Mikey, I do have the DLA application form and have been contemplating it more and more of late. It's something else I hope to go through with CAB - so many things to discuss!

To be honest, I've been thinking about it on and off for the last 6 months. My biggest problem with it is psychological. I hope some people on DLA will understand this, in a hard to explain way it feels like I'd be admitting defeat. Somehow. Because I'm pretty good at working around my limitations and getting by, part of me remains convinced I'm ok really. I'm sure it's some sort of denial phase even though I've been quite shocked at how much less I can do now than a year ago.

I know I should apply and I'm hoping that the CAB will be a kick up the derriere to actually do it and be honest with myself about what I can really do as opposed to what I pretend to myself I can still do!

Hope that makes sense.

Rae.

[MIKEY DABODEE]

It does make sense.

 

I think you should apply for DLA its not admitting defeat, take the form with you to CAB, they will help complete it then see what happens, I really hope its awarded to you.

 

You give great help and support to people on here and put in a lot of time and effort, I am sure you dont know how much thats appreciated

[MelissaTeddyBear]

Kelcou,

 

About admitting defeat. I know from experience that it takes courage to acknowledge that you need help. I need help in certain situations but I am no less of a person for needing that help. What you have is courage.

MelissaTeddyBear passes her pen with little teddy bears hugging on it to Kelcou to make notes about the things that she should put down on her claim form.

[RaeUK]

Thanks everyone for being so kind. MelissaTeddyBear I have your pen and it'll help me take stock of things!

It's easy to help people, love people and to care about people. It's even easier to forget that you should also help yourself, love yourself and care about yourself. I suspect there are times when I think of others, perhaps, because it stops me thinking of my health.

I feel a New Years Resolution forming...

Thanks again.

Rae xx

[ibis]

Hi Kelcou, its ibis who you were very kind to in the forum the other day. I am writing to offer you any support i can. I am on Dla and have been for god knows how long. It can be hard to come to terms with declining health, i sometimes think im kinda grieving for the mobility i used to have. I kept pushing and fighting but in the end i had to realise just what i could and couldnt do anymore. You have a right to claim as being unwell puts you at a disadvantage because we dont have the luxury of being able to do a bit of overtime etc. I think you are an extremly compassionate and caring person, and i really hope that things turn out ok. Think about you.

Take care hun and look after yourself x x x

[Maggie_moo]

It might be helpful to phone welfare rights - 080044144 - as they can help with filling out forms. CAB are ok but from, experience, they can be a bit hit and miss with form-filling . I'm sure I read somewhere they will come out to you to help too.

 

I hope you do claim, the extra money would be helpful to you, and tbh I still find it shocking that in this supposed 'first world country' of ours people still have to choose between heating and other essentials. Good luck Kelcou x

[mkb]

My biggest problem with it is psychological. I hope some people on DLA will understand this, in a hard to explain way it feels like I'd be admitting defeat. Somehow. Because I'm pretty good at working around my limitations and getting by, part of me remains convinced I'm ok really. I'm sure it's some sort of denial phase even though I've been quite shocked at how much less I can do now than a year ago.

I know I should apply and I'm hoping that the CAB will be a kick up the derriere to actually do it and be honest with myself about what I can really do as opposed to what I pretend to myself I can still do!

Hope that makes sense.

Rae.

 

Rae

 

OMG - you sound just like I feel sometimes

 

I have a degenerating spine with hip joint involvement & emphysema & HATE the fact that I cant do the stuff others can do even if thats just hoovering!! The frustration is enormous & I get so angry with myself which, unfortunately, I tend to take out on my other half

 

You really should claim DLA but remember when you're filling the forms in that you need to compare yourself to others when you think about what you're unable to do with or without help. We get so used to adapting the way we do things that we dont actually remember that normal healthy people dont need help getting into bath/help with dressing/have to stop when going upstairs just to be able to breathe etc etc etc.

 

Before I did my forms, I got my other half to write down all the stuff he helps me with & I was so shocked by what he wrote & it really did make it clear just what I need help with. It was also mega-depressing & it took me a veeeery long time to come to terms with it yet to this day, I still get frustrated & upset by it all. When I had my last renewal, I got an ATOS visit as well & was gob-smacked when the letter came awarding DLA for an indefinate period. Result for me but that also brought more feelings of low self-esteem cos it made me realise that I'm never going to get better even though my GP has been telling me that for years - somehow having it in black & white was so much worse!

 

Please claim it & do it now while you're having such a bad time of it as thats when you will write exactly what it is you can & cannot do. This is what will determine the level of payment you will get.

 

Good luck & feel free to PM me if you need help or just to sound off about it all

[RaeUK]

Ibis, Maggie, Mkb, thankyou. You are all really helping me in a most unexpected way. It makes me smile that I wrote the OP in case someone else had to think about what I had to do. And to highlight how helpfull the electric company were. Instead I've been blessed with several people helping me to - finally - start to come to terms with my health!

Hoovering. Oh dear, that made me smile so much! I think it should be adopted as the ATOS Emphysema Test. It'll be 100% accurate every time. [Oh, sorry, forgot that's not what they want...] It's so hard that, I'm a little ashamed to say, I do it far less than I used to do. Now it's a case of hoover my bedroom. Sit down for 10 minutes. Hoover the hall. Sit down for ten minutes. Hoover the living room. Etc. And don't even mention the fight I seem to have these days with my socks! How can getting dressed make you breathless? I don't remember that in the small print when I was born...

Thankyou for the phone number for welfare rights. They're often mentioned in the forum but I've never found a way of contacting these mythical creatures. I'll give it a go...

I can't thank you all enough. [Mainly because I have to go sit down between each one and it'd take forever!].

So much love to you all. Thankyou.

Rae.

Edited January 7, 2010 by RaeUK
typoo

[honeybee13]

That's great news Rae, I'm pleased for you, and I hope it will help your tricky finances.

 

You've done a lot to help other people, so it's good to hear that other kind posters have done the same for you.

 

My best, xx

[brighton gal]

Hi Rae,

What a nightmare....

Writing it all down is the way to go. In order to face my IB appeal on Monday, I took each of the PCA descriptors used for a typical day in turn, e.g. "usually gets up at different times" and wrote my own descriptor - "This is true. I might not get up at all for a few days"

Reason I'm telling you this is that having to go through the process of describing all the various aspects of my life, I realised that I had been kidding myself and was clearly in denial about a lot of my problems. At first it was a huge blow dealing with "is that really me?" but I've decided to consider it as a positive outcome of the process so would recommend finding a way to be able to look at all the problems you have to face every day. So Rae, you are truly a fine person and it has been my privilage to have come across you. If there is anything at all I can do - just let me know, OM or PM, I'll be there.

Hope right now you're nice and cosy.

[Simon7685]

Rae

 

I have just skimmed through this thread before I try to sleep (what is sleep again?), so I hope I am not repeating anything.

 

Have you asked your energy supplier about their social tariff?

If you are on benefits, you nearly always qualify for it. It means you get cheaper prices for your electric. So that is something to try.

 

Also think about moving your electric, I have just moved from the EDF social tariff, to the British Gas social tariff and on my nighttime rate alone they are over 60% cheaper. As it when your storage heaters take in their charge and your water generally heats that amounts to a significant saving for us.

 

Just a couple of simple things that I hope are of some help to you.

I'm off to look for the land of nod now, you havent seen it have you lol

[RaeUK]

This thread falls into the 'long shot' department.

My ATOS medical [failed null point] was held by a qualified Doctor. He is currently registered. But that is the full extent of what I know about him.

Are there any clues as to how I can find out more? Is there a governing body that I can apply to in order to find out what his qualifications are? Is there a registry somewhere which may hold his cv?

I don't believe he has an understanding of COPD and would like to confirm this.

Absolutely any advice will be usefull. Except, of course, something along the lines of not holding a lighted candle by the wick...

Rae.

[bruce2010]

Hi, I just went onto the GMC site, typed in his name and it gave me the initials of his qualifications, I then went on wiki and found out what the abbreviations stood for. In my case he was a medical/surgical doctor and I have mental health issues:rolleyes:.

[kurvaface]

The Medical Register at the GMC website lists all registered Drs in the UK along with any specialist grades held.

 

If you are unhappy with the quality of medical assessment I would strongly advise you to make a complaint to the General Medical Council.

[RaeUK]

Thanks for the suggestions. Had a look at the GMC and it just tells me he is registered and when he qualified [way back in the mists of time!].

Rae.

[kurvaface]

Is he UK qualified or overseas?

[RaeUK]

UK, back in '64...

 

I think the only conclusion I can draw on what I know, is that he has no specialist knowledge of lung disease.

Thanks

Rae.

[kurvaface]

My view is that someone who qualified 46 years ago and has no specialist qualifications in all likelihood never really got anywhere with their career. Unfortunately, it's exactly this kind of low grade doctor you find working in these settings and I don't think it's realistic to expect that they have specialist or in-depth experience in a particular field.

 

I would get a second opinion from your gp, or if necessary / affordable / possible with a lung consultant. If there is a difference of opinion I would then complain to all the relevant bodies.

 

Out of curiousity, what is the name of your problem?

[Uncertain]

I went down this route too....

 

I found that mine was a retired consultant in a totally different field. From the registration date I worked out that he must have been at least 72!

 

A bit of digging on Google will usually turn up something.

 

Any doctor has a clear legal duty to act in the best interest of the patient. This is regardless of who is paying him. Basically, to make a valid complaint, you would have to show that he failed in this duty.

 

Sadly there seem to be quite a few retired consultants who are willing to forget their obligations and earn pin money doing this.

 

The real problem is that they are at a point where they have built up a lot of "credibility" and, frankly, aren't too worried about being taken to task.

Edited February 10, 2010 by Uncertain

[RaeUK]

kurvaface,

COPD / emphysema. Lung capacity currently down to 49% - or as I said to my GP, that's still the equivalant of one!

Rae.

[kurvaface]

It would be interesting to know what you failed.

 

Respiratory impairment can be very serious with some potentially dangerous implications. There are certainly a whole range of activities that you should definitely not be doing but at the same time you might perfectly well be able to wipe your own bottom or get up and down the stairs.

 

What tests, measurements or assessments were done?