Help for the bedbound and severe

[Invisible Woman]

Found this (I have only briefly scanned it):

http://www.catherinehale.net/2015/01/sickness-and-social-model-of-disability.html

Edit to add : This is the bit report I was thinking of - bit more relevant to the thread:
http://www.centreforwelfarereform.org/library/by-az/close-to-collapse.html

 

[Countrygirl]

As for the Leed's unit, here is the main comment:

I had a very similar experience Crusty. I made the mistake of standing ujp for myself and found some very nasty and untruthful things ended up in my notes. They told blantant lies about what they had achieved. They prevented me sleeping at night for ten nights running due to idotic meddling with another medical condition (diabetes) that they did not understand well enough. They then tried to diagnose me with SAD despite both treatments for that making me ill. All in all they are a very bad lot (the Doctors) at the time I was there the better nurses were leaving in disgust.

 

[cairidh]

thanks for your sympathy
I am in blackpool.

my mother is a hoarder, fills her house with junk and never cleans it either. she used to live here and the house was a mess then and shes moved out but im obviously not in a position to fix it. if things break she wont get them fixed - electricity downstairs, phone, bath, hotwater. that's partly why I ended up with no friends left because once I was housebound/bedridden she wouldn't let new people/strangers/aquaintances in because of the state of the house. there is now no one left in blackpool that I know and im not in a position to make new friends being bedridden in a dark room, unable to talk much.
social services arranged for carers to come in but she wouldn't let them in my room because it was full of boxes of her junk/clutter and the room hadn't been cleaned in years. I was too ill to get up and go in another room to see carers. so shed take them out shopping instead or have them prepare food in the kitchen. while i continued to be neglected. social services don't know that - if they find out I wasn't having contact with the carers theyd use that as an excuse to say im reclusive. I complained repeatedly to her, but she wouldn't clear my room. eventually I sent an email to her friend which shamed her into clearing my room, but she just moved the junk downstairs so now she wont let people in the downstairs rooms.
careplan has now been switched to direct payments, but she wouldn't let a stranger in the house while its like this so she got an expupil (shes a teacher) to be temporary carer til she made the house more respectable. 1.5yr later she still hasn't. he complained about the smell of cats so she would let him in after that. ive since found out hes a pervert whose been accused of stalking by 3 different women so I don't want him here either. I managed to put advert up for someone to clear house for me (to be paid by direct payments) but she got very angry and said she wouldn't let a stranger in the house while its this bad. social services have now ordered her to get a cleaner in (someone she knows) so theres some improvement. but I still haven't got a proper carer and no one who could advocate. I keep having premonitions my mum is going to die this year, and im going to be left alone in squalor with no family or friends left and mental health social workers are going to come back and say im not going out for mental reasons. im not mental its my mother. shes the hoarder not me.

I cant move because I cant afford to pay for this house and another. and I cant let this house until its cleared cleaned and renovated. and im not able to do that myself. and last time I tried to go in a car the motion of the car was completely unbearable.

I cant use the phone. im 3% or less, on hummingbirds scale. fluctuates.

 

[cairidh]

also if my mother dies im in trouble because I cant do things like apply benefits/ fill in forms, talk enough to benefit assessors. because of cognitive disability

 

[cairidh]

also how do you find a decent carer for very severe me?

 

[taniaaust1]

is there anyone willing/able to help someone with severe m.e. who has no friends or nice family left (only abusive family). social services think its psychiatric/ not leaving the house because reclusive because no visitors. how common is it for very severe m.e. to end up with no friends or family left?

How common is that? As no studies have been done on this and us we can only guess.

I personally think it is more common then many realise among those with severe ME who are not able to keep on maintaining their friendships or get out. Many families are bad with ME/CFS and we have quite a few people here at phoenix rising who have had to disconnect completely from their families who were being abusive or have been cut off by their families for being sick

Those here are still able to use a computer and be trying to reach out.. how many out there even worst who havent been able to do this are silently dying?

I knew someone (someone who lived nearby to me when I lived out in the country) who im sure ended up dying of severe ME, and he wasnt able to get the care support he needed. In his last year of life he finally managed to get a FM diagnoses but still hadnt even been able to get a ME/CFS one (he wasnt able to drive). Our local hospital kept on kicking him out pronouncing he was fine (he couldnt look after his house, he couldnt cook properly), they kicked up out of hospital near to right up to him dying of organ failure.

I myself can not get the support I need for this illness...to the point that my house has twice been declared an occupational health and safety risk as it gets so discusting. I can not get to my doctors

 

[taniaaust1]

Thankyou for replying the advocacy worker at the 25% group said shes too busy with other people to take me on. A consultant immunologist me specialist diagnosed me with M.E. a long time ago, hes now retired, probably dead by now.
They didn't say I didn't have M.E. just that I was not leaving the house and having no visitors for psychiatric reasons/being reclusive. Bedridden in a darkened room - doh! Most social workers I've met or heard of have been arrogant know-it-alls who think they're experts on every subject under the sun, and think they know better than consultants. They had a psychiatrist assess me who said I wasn't mentally ill, but the social workers obviously disagreed with him. and wished they had the power to overrule him. They would like to bring in another psychiatrist who will give them the diagnosis they want.

i hope u can stick to your guns and not allow them to keep bringing in different psychiatrists till they get what they want.

I had a GP like that, who didnt believe in ME/CFS (thou he didnt tell me that at the time and made out he was understanding). He sent me to psych after psych trying to get me diagnosed with a mental health disorder (he was trying to get me diagnosed as bipolar as that was his theory of my issues) but I was checking out ok.

In the end this finally worked for him as a psych who didnt believe in ME/CFS finally gave me the diagnoses of borderline personality disorder... and I now cant get this wrong diagnoses out of my records and it can majorly affect how others treat me

best luck

 

[cairidh]

im sorry that happened to you, and thankyou for your sympathy
I couldn't stop them bringing in different psychiatrists if they decided to do that...

 

[taniaaust1]

she wouldn't let them in my room because it was full of boxes of her junk/clutter and the room hadn't been cleaned in years. I was too ill to get up and go in another room to see carers. so shed take them out shopping instead or have them prepare food in the kitchen. while i continued to be neglected. social services don't know that - if they find out I wasn't having contact with the carers theyd use that as an excuse to say im reclusive. I complained repeatedly to her, but she wouldn't clear my room. eventually I sent an email to her friend which shamed her into clearing my room, but she just moved the junk downstairs so now she wont let people in the downstairs rooms. .

OMG , Im hearing u and wish u could get the help u need. I know what its like to be going without the needed support to.

I dont know if this suggestion will help at all as it depends on your current reasons on why you cant use a phone but Im able to use mine now ok as Ive got a headset on it (I used to struggle to hold it for long).

 

[taniaaust1]

im sorry that happened to you, and thankyou for your sympathy
I couldn't stop them bringing in different psychiatrists if they decided to do that...

the sicker we are, the more vulnerable we are.

 

[taniaaust1]

Hi @cairidh - sorry to hear about your awful situation. I cant go into the details of my friend here im afraid.

Hi justy, I understand u cant share anothers personal stuff but can u share if that others situation is now better then before? or is she still in the same bad situation?

(your post made me wonder if she died)

 

[Invisible Woman]

im sorry that happened to you, and thankyou for your sympathy
I couldn't stop them bringing in different psychiatrists if they decided to do that...

I think you would have the right to but not sure you would have the fight to.

There seem to be lots of huge great gaping holes in service provision - the need for some to have an advocate to liaise between them and social services/DWP/healthcare being just one.

In some ways I wonder if this suits social services as the fear of engaging with them (as they shop for their preferred diagnosis) cuts down on demand and so eases their workloads.

 

[Invisible Woman]

I found this:

http://www.seap.org.uk/

From their website:

seAp is an independent charity that provides free independent and confidential advocacy services
We provide independent advocacy services to help resolve issues or concerns you may have about your health and wellbeing or your health and social care services. Our aim is to ensure that:

• You are in control of decisions which are made about you
• Your experiences, views, wishes and feelings are heard
• You can contribute to improving the health and care services you use

Anyone had any contact with these before?

 

[Invisible Woman]

They go on to say:

How we can help you
Sometimes we all need help to speak up about things that concern or worry us.

If you have been let down by your local health or social care services it can be hard to know where to turn. You may not feel confident about getting back in touch with your local authority, hospital or other service provider, or know who you need to contact. Perhaps you don’t quite know what you want to say? Or the right questions to ask?

Our advocacy services can help you resolve your issues or concerns and help you have a say in the way you, or someone you love, are cared for.

 

[cairidh]

thanks for posting that
trouble is they wont know anything about very severe m.e. and how do you begin to explain to people

 

[Invisible Woman]

I know that the 25% Group have published an guide for those caring for people with severe ME. It details just how sensitive people are to noise, perfumes etc and how even very tiny amounts of interaction are too much.

The MEA also have a tick list that gives details of all of the symptoms we are likely to suffer and you can just tick those that apply to you.

I understand it feels like a mammoth task to get across to someone how the condition affects you but hopefully you would just have to do it once. Then the advocate should do it for you.

Even if you found someone who was familiar with someone else with severe ME they might have different co morbidities and the symptoms that trouble them most might be different to yours. So they would still have to become familiar with how the illness affects you.