ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

CJ

In my case it is just indifference as opposed to nastiness and I think that is worse, people are so wrapped up their own lives in a really selfish way. When I was well I did everything for my more vulnerable neighbours and you just expect people to be like you I suppose.
I was going to say if I asked them they would help but that is not always the case and then when you have been knocked back you don't like to ask again. It took me 6 phonecalls to get someone to take me to the vet recently
I HATE NEEDING HELP!!!!!

vikki_louise

Magenta wrote: »

I have had M.E since 1994. My dear husband also went away to think, can't blame him really as I also had my first lot of cancer at the time. Poor, poor man.

I live in the UK and am totally alone, I have tried to find out what help there is available, but there is none and it seems to be impossible to find any!! I have to order my shopping on the Internet and it is left outside my front door. Risky I know to leave it outside, but I have no other solution..You would think that neighbours would wonder about seeing shopping outside for days at a time. I was ill for almost 8 weeks with pneumonia last year and there were a couple of parcels outside for all that time. Makes you wonder.
I think they see me as the mad woman who never opens her front door...in fact I heard them saying so one day a few years ago.
So where is that miracle cure? lead me to it please....:(

Hello, social services are the people to contact ot arrange carers if your too ill to even get to your front door they should be able to help

CJ

As far as I have been made aware you can't contact social services yourself you need a referral from your healthcare professional either GP or Specialist nurse

Millburn_farm

CJ wrote: »

As far as I have been made aware you can't contact social services yourself you need a referral from your healthcare professional either GP or Specialist nurse

Then ask your Doctor

vikki_louise is right (I'm 110% sure who she is; she's been very ill, she knows) if you are too ill to get to the door for shopping, or 8 weeks for parcels because you had pnemonia you are on the verge of a major cliff; your local health workers are duty bound to help



Oh and all I needed to get some minoir help with my mother who managed (she was air-traffic so bloody bright) to pass the demensia test; was me asking; and if she/we can get help; 8weeks too ill to answer the door :eek:

Millburn_farm

Sorry Magenta; having had ME for 17yr; I've never felt that I wasn't getting backed up; even 17 yrs ago; newly diagnosed; totally unaware of what having ME mean't

If you can only manage to get out of the house once in the last yr; then you need help; ermmmmm either you are telling porkies or you are dead; or you have odddles and some back-up

I manage to shop and cook in a tumble down house; with a farmer for a husband; & a senile mother; if you are iller then I am and have no back up and 8 weeks with Pnemonia and too ill to even get a parcel off the door step; so ?? how shopping left days at a time; well sorry but you died weeks ago; or you have another illness and not the ME that I know

vikki_louise

Millburn_farm wrote: »

Then ask your Doctor

vikki_louise is right (I'm 110% sure who she is; she's been very ill, she knows) if you are too ill to get to the door for shopping, or 8 weeks for parcels because you had pnemonia you are on the verge of a major cliff; your local health workers are duty bound to help



Oh and all I needed to get some minoir help with my mother who managed (she was air-traffic so bloody bright) to pass the demensia test; was me asking; and if she/we can get help; 8weeks too ill to answer the door :eek:

LOL, its me- Viks! Nice to see you posting on here (i dont venture into this bit of the forum often so didnt know you were here), how are you doing? i'll drop you a pm soon (rough few weeks) as i would love to catch up with you.



As for social services referals- you can refer yourself. the first time my mum tried when i was 17, adult social services said i was a child and wouldnt take me, and childrens wouldnt take me as an adult, so we gave up. 5 years on my parents wanted to go away to celebrate their anninversary so i contacted social services myself, i know i got lucky but a traniee social worker turned up and transformed the help im getting. she left and someone was taking over my case, she came to say hello once but ive not heard from her since. keep at it though, just phone up and ask for an assessment or explain you need help and they should come out to you.

mardatha

Magenta pet, you'll never get better this way... we get one life and it's short enough, please try and pick yourself up a wee bit and take charge of your life and look after yourself better xxx

mardatha

First place to go is to the gp, and dont let them fob you off --dont go quietly away ! They get paid an awful lot of money to take care of you - so make them do their job !

vikki_louise

Magenta wrote: »

Hi Vikki, where do you have to apply exactly for social services? I mean which offices or department? Thanks lots for all you very helpful posts.:T

Hiya, just go onto your local council website and look under social care, its normally called adult social care (there are two types one for adults who need help due to things like a disability, and a mental health team which is always clearly labeled

Just phone, say you need an assessment and they will come to you and talk about everything. despite being bedbound, on a ton of meds etc i hadnt seen my GP for years which was the first thing the social worker got onto, the next day my gp was in my room! Its a bit hit and miss but they are the best port of call.

Good luck and let us know how it goes

vikki_louise

As an after thought can you manage to eat a normal meal if it was made for you? Soical services can put a thingy (the words just gone out of my brain) on your front door which you have your key in and a code. Then someone like meals on wheels can let themselves in, and if you want to do something like access library books your asssigned housebound lady would be able to let themselves in. i always ask people to ring the doorbell for the system i use, other wise i jump if someone walks in!