How can you prove you have pots with cfs/me?

hmf_2

racon that is my point how can I prove this. I cannot evidense from a medical test because my GP says no which I do understand. Your idea of a social worker witnessing me unable to get out of the bath alone is a good idea. Thanks

racon

hmf wrote: »

Horseunderwater thank you for the great advice. I'm not good at keeping things simple. That's probably where I have gone wrong. I will take your advice which is a much better explanation than I have given the DWP so far.

To the person asking what I would use the care element money for ?? I would use it for a carer simply. I have said that I have already scored 7 points towards the care element but should have scored the 8'points that are needed to recieve the care element. I live alone so have to rely on family members to come to my house to help me get out of the bath safely and to walk me to my bed to lie down until I have enough energy and feel strong enough to feel safe walking again.

Hey, you wont get much for £54 if you intend employing carers. Is bathing and the problems that go with it the only thing that you have a problem with? You seem to infer that it is. If so, you certainly don't stand much chance in getting the Standard Care rate PIP.

lemontart

hmf wrote: »

racon that is my point how can I prove this. I cannot evidence from a medical test because my GP says no which I do understand. Your idea of a social worker witnessing me unable to get out of the bath alone is a good idea. Thanks

with cfs it is highly possible this test may not prove anything, also the test may only be available if requested by your cfs specialist (which is what I have found with certain tests over the last 18 months) there are so many symptoms that a sufferer can have and such a wide variance with no obvious cause let alone cure. Frustrating I know. I keep a diary of how my condition fluctuates on a daily basis for my specialist and this was supplied to dwp too .

hmf_2

I wouldn't know Racon about the cost of employer carers. I assume that is what the care element of pip is there for. Yes I have other care problems and have be scored appropriately for those descriptors mainly. There seems to be a pattern of the DWP scoring people with 7 points like myself so that they miss the award by one point.
Stress makes my condition worse and leaves me bed bound and vommiting for days/weeks so on the one hand I feel for my own health I should just accept that DWP ignore your real problems and score you just enough points to miss the award that you should qualify for and walk away. On the other hand I do need help/care in my daily life and the care element would help a little maybe to paying for a carer.

hmf_2

Lemon tart thank you for your advice. Keeping a diary is a great idea. It's a hard condition to prove as it's an invisible illness to others.

racon

hmf wrote: »

racon that is my point how can I prove this. I cannot evidense from a medical test because my GP says no which I do understand. Your idea of a social worker witnessing me unable to get out of the bath alone is a good idea. Thanks

Hey, I called in the Social Worker after I asked them to carry out a Care Assessment on my wife. This had nothing to do with claiming money, it was simply the case that I could no longer do everything for her. The OT that came along took my wife through a normal day/night starting with how she slept (permanently on her back), what happened during the night (at least 3 visits to the loo), how she got out of bed (grabbing the radiator on the wall), stairs, bathing, housework, cooking etc etc etc.
She prepared a report and ordered in a van load of equipment to be used by my wife in the home. She now has an electric pillow (it helps her sit upright in bed) grab rail at the side of the bed that goes underneath the mattress, push a long on wheels, electric bath seat riser, stools etc etc etc.
She didn't need any medical tests, her difficulties were enough for her to get the equipment to help me cope with her. Getting any additional monies via benefits would not help out, as she had been provided with everything she needs, it would have been a waste.

Torry_Quine

tea-bag wrote: »

How come you can't do a meal but can do housework?

Not that I need to defend myself to you but there's a world of difference between putting some washing on and cooking a meal. I can walk a few steps with a few items to hang out but that isn't all the time anyway. Problems such as not being able to safely use sharp knives due to co-ordination problems mean I cannot safely cook.

As I sit here my husband as usual is doing the vacuuming which is something I haven't been able to do for many years.

I didn't choose to be ill and wouldn't wish it on anyone.

Dixi

We were told by my husband's cardiac rehab nurse that under no circumstances should he have 'hot baths' as they can cause your blood pressure to drop and make you feel weak and dizzy.

notanewuser

And given POTS largely manifests as extremely low blood pressure, it's really not clever.

lemontart

Torry_Quine wrote: »

Not that I need to defend myself to you but there's a world of difference between putting some washing on and cooking a meal. I can walk a few steps with a few items to hang out but that isn't all the time anyway. Problems such as not being able to safely use sharp knives due to co-ordination problems mean I cannot safely cook.

As I sit here my husband as usual is doing the vacuuming which is something I haven't been able to do for many years.

I didn't choose to be ill and wouldn't wish it on anyone.

Sadly the name chronic fatique syndrome is so misleading and people including some medics (a paramedic at weeked was clueless) as to the reality of the condition and the wide spectrum of symptoms that manifest them self. My fiancee called them out after another bout of spasms so bad that I was left locked up physically having trouble speaking for a period of time, got told have to move to prevent spasms in first place .............................silly woman would that it was that simple. She could also not grasp why not on meds for the pain - well sorry but they trigger some of symtoms and I have become hypersenstive to them since developing Myalgic Encephalopathy aka cfs. http://www.meassociation.org.uk/about/what-is-mecfs/