ESA refusal Blah!!

sunnyone

mazza111 wrote: »

I know dear, we had all the symptoms of it without diagnosis. We all scored 9/9 on Beighton score. And probably about 3-4 on Brighton criteria. Of course there's more known about it these days then there was 30 years ago when I started getting problems, or 60 years ago, when my mother started getting problems. As an HMS/EDS sufferer yourself I'm pretty sure you will be aware of how under diagnosed it is. I've never had a full dislocation, but loads of subluxing (partials), my old mam did have dislocations, but they said it was due to the arthritis... We still laugh at my old mam when she drops something, she bends from the waist straight down to the floor with no problems, it's quite obvious now looking back, of course we knew nothing about it back then. I now only score about 4/9 on beighton score, due to the arthritis stiffening things up and only have hm on the left hand side of my body these days (thankfully). The only part of me I have been told is hm is my elbows and my knees, although I can do the thumb on one side too. My old mum (78) still scores 9/9 on Beighton score, and who knows, if she had been diagnosed younger she could probably have had the right help to prevent her getting so bad.



I don't class myself as disabled. I can still walk, albeit slowly to the specified ranges. I'm a part time crutch user. On my bad days. I do not claim DLA. The only personal care I need is to get my socks on and bra fastened due to my arm, so wouldn't claim it, I manage perfectly well.

My dd however is a totally different kettle of fish. They are doing a wheelchair assessment soon, but don't know if she'll be able to self propel or not, due to the wrist and shoulder dislocations. The doctor at the WCA didn't think she would be able to self propel, and then ended the assessment, which I'm taking as a good sign for her ESA. She tries her best to be as independent as possible, showers herself, although not when alone. Dresses herself.

I'm still awaiting answers to my questions from those critical as to what they would like her to do.... Trust me, my dd would love to be able to work rather than be stuck in a flat she hates every day. Friends have been lost due to her condition and her not being able to go out with them when she wants to but isn't able. This is a lass who's come from a family who's always worked. I wouldn't wish her illness on anyone.

I am 44 and I was diagnosed with HMS at 13, so just over 30 years ago my GP picked it up when I went to see them for an infection.

I was refered to the hospital who after a few examinations and xrays I was diagnosed with HMS and scoliois.

Doctors are well aware of HMS, now EDS hypermobility type according to my medical records and they have been for many decades, my kids were diagnosed at a very young age because of my disagnosis.

mazza111

sunnyone wrote: »

I am 44 and I was diagnosed with HMS at 13, so just over 30 years ago my GP picked it up when I went to see them for an infection.

I was refered to the hospital who after a few examinations and xrays I was diagnosed with HMS and scoliois.

Doctors are well aware of HMS, now EDS hypermobility type according to my medical records and they have been for many decades, my kids were diagnosed at a very young age because of my disagnosis.

You were one of the lucky ones then dear. You just have to pop onto the HMSA forums to see the problems are for people looking for diagnosis. My dd's GP had heard of it, but didn't know anything of the Beighton score or Brighton criteria. Thankfully, they read the physio's report thoroughly and went and read up on it. My own GP suspects I've been an undiagnosed case too. My mother hasn't bothered looking into it, she said it will just be one more thing to add to the list lol.


From the research I've done, the experts believe EDS Hypermobility type III and HMS, JHMS, BJHMS are all one of the same but can't confirm that because they haven't identified the gene that causes it as yet. That came from Prof Ferrel, who's the top EDS/HMS man in Scotland when we met him in Glasgow recently. Even he is trying to get more GP surgeries to acknowledge the condition and has plans in motion to educate more of them

TBH I thought everyone could do the party tricks which are included in the Beighton score, or sat in the lotus position for comfort and had no idea about HMS until the dd got so bad, we just had no bloody clue as to why this was happening. The physio did pick up on my mobile knees a few years ago when I started having problems, but didn't examine any other joints as it was just my knees at that point, but that's as far as it went.

I often wish the DD would have been discovered earlier, cos the right physio could have stopped her deteriorating so fast, now it's too late for physio on the knees, although, they may do more if they operate.

Dunroamin

mazza111 wrote: »

The only way a person who's ill or too disabled to work is better off than someone who's working is because you are counting DLA as income, whether it should be or not is a different matter, but the authorities don't count it as income.

The one bed LHA rate in Brighton is £150 pw, so someone on ESA would receive considerably more in benefits than someone working full time on NMW - the difference would be even greater for people living in London.

mazza111

People on NMW would get help with other things too. Things like tax credits and/or LHA

I'm not here to get into the rights and wrongs of it. After taking everything into consideration. I was about £20-30/week better off when working. Not a lot, and agree it should be more. But I was better off...

Dunroamin

mazza111 wrote: »

People on NMW would get help with other things too. Things like tax credits and/or LHA

I'm not here to get into the rights and wrongs of it. After taking everything into consideration. I was about £20-30/week better off when working. Not a lot, and agree it should be more. But I was better off...

Is that allowing for commuting costs and other work related expenses though?

mazza111

Yep. And that was also me being a silly beggar and using my car for when the business needed it. I was still better off in work.

mazza111

Well been to see the surgeon today, and there's nothing he can do at this present time to help. He could fix the knees but there's too many other joints affected The hope is that if she manages to get the rest strengthened he will be able to fix the knees although has said there's only a 50-50 chance of success.

Pick up her wheelchair tomorrow, admitting defeat maybe, but she will still use her crutches most of the time and the chair for when she really needs it

Confuseddot

Thats a shame Mazza sending hugs to you both and hope things get a bit easier.

mazza111

Thnx hon, we kinda expected it, but although we tried not to, we had pinned all our hopes on this guy. Even though we expected it, it was... still like a kick in the teeth.

Oh well, the big adjustment needs to start now

mazza111

And now for the good news

Got a call today. She's been allocated the disabled flat that she was recommended for. Go to view and sign lease tomorrow. Will make all the difference too her. Nice wide doors, totally on the flat, wet room etc. Had a sneaky peak through the windows and it looks great.