Discussion in 'General ME/CFS Discussion' started by PhoenixDown, Nov 6, 2013.
I keep wondering if there are any of our members who live near you.
I wondered this myself but didn't wish to sound intrusive.
I am in the North West.
Luck of the draw, but seeking support from your MP can be a good move. Mine is very good. He beats the crap out of govt groups who try and screw me and gets appropriate reaction. So far the DWP and Inland Revenue. Might work in your case if you can get him to understand.
I agree re the MP. I worked for one some years ago for a short time, and he said he had no real power but saw himself as a conduit for his constituents to get to who they needed/wanted to, as 'the powers that be' DO take note of the MP's letter and it gets dealt with on top of the pile normally.
Some MPs of course are not helpful, sadly.
Re the sectioning issue in the UK......if anyone over here has read the press in the last few months re those with 'proper' mental illness they will know how staffing and units have been slashed so badly due to the economic situation, that even the genuinely mentally ill have to fight to get in now.
Ironically therefore this means it's much less likely for those with ME/CFS to end up there, IMHO.
I worked at the Inland Revenue, and MP letters (on behalf of unhappy taxpayers) got absolute top priority!
Just to let you all know that PD is really too ill himself to deal with any of the fantastic suggestions - especially thank you to the member (sorry, cant remember name - brain!) who compiled the list.
I am trying to get an advocacy organisation involved in PD's case as even typing is too difficult for him. And I will try and follow up some of your suggestions for him.
At the moment my braodband is broken and am typing this in my friends very freezing house!
I'm sure messages of support are appreciated.
Thank you so much, Justy, for letting us know, and for your deep caring.
Wishing you broadband, warmth, the perfect solution, and love.
Such love to PD as well.
I am happy to hear that...
I sent a letter off to each of the links too to try to get some info. Its dire.
Some people have had luck getting the Countess De Mar involved...*****
Justy, I would want a knowledgeable advocate to get all the right blood tests done - therefore ruling out treatable illness...
Better understanding of UK sectioning laws.
How can this NEW UK law making medics Criminally Liable for neglect ...come into play?
For example when it is known we have MCS / noise /light /drug sensitivities ... and that these can severeley deteriorate our condition etc.
I am thinking serving a Notice of Liability may prove useful if necessary, purpose : prevention is better than petitions.
Also when medics go their own sweet merry way on medical notes there can be many errors and omissions , It would be important to address any errors in writing too I suspect and have an accurate record of physical symptoms down.
Just some thoughts -
I am frozen to the bone too - have a handful of coal left and no other heating. Turning into tortoise mode .
All The Best
Yes, totally agree
, much love to Pheonix Down.
I'm sorry to hear you are suffering and I can hear how scared you are. I know that feeling. The frustration of knowing something is terribly wrong with your body but you can get no real help nor encouragement for recovery. I'm praying you have some better days, maybe cant classify them as good days but better than bad days. i wish I knew what it would take to get acknowledgement and support for people who are suffering. I understand the noise problem, it is a real issue but people that are 'normal' and dont have first hand experience dont realize how just noise can hurt and wear you body and mind down on a daily basis on top of everything else including odors/chemicals. I struggle to be in hospitals there are so many 'arromas' in the air.
I truly hope you get some encouragement and relief soon PD, you are so young. There are many young people having to fight this battle. Crosses ages, genders, social classes, careers. So many affected and yet ignored, I think just because doctors dont know what to do, dont have the answer. I'm ok with doctors not having all the answers, what I'm not ok with is them pretending they do, giving out medications w/o real knowledge of impact or actually dismissing/harming a patient with their attitudes. Someone said on a nother thread they wished bankers would get CFS/ME. Although I know I dont want anyone to have to deal with this madness I sometimes wish more Drs had it, then maybe there would at least be more acknowledgement and empathy if not outright answers and leadership.
I was just empathizing with Justy... I survive
No heating assistance for me...
I would like to see all of us move from surviving to thriving!
I had just been thinking
Nourish and Flourish
and then i saw your post ...
Sweet Dreams All ,
Off to land of Nod.
It may seem strange to suggest but MIND, a mental health charity in the UK, have good advice and can advise re legal issues, including giving urgent advice in a crisis. They have a section on legal rights.
Legal Advice Tel: 0300 123 3393 or email firstname.lastname@example.org
They have a brief guide to the Mental Capacity Act 2005 and to the Mental Health Acts plus "Rights - civil admission to hospital" answers common questions about civil admission to hospital (often called sectioning) and explains the options.
I just saw that you posted something for @PhoenixDown and am wondering how things are going. It's worrisome for anyone being in this type of situatiion and am wondering if there is an update but also don't want to intrude on anyone's privacy.
Hi @barb at the moment the situation is not much different for phoenix down. They remain very seriously ill and bedbound with no help from the medical profession, although a successful referral has now been made to social services for carers it is still not enough!
I believe there is no immediate threat of sectioning or being made to go to hospital, however I do believe Phoenix Down's health has deteriorated further since this thread was made.
It makes me so sad and angry to see just how many people in our community are in thus awful position of being so severely ill they cannot speak or type or write - and very many of them are alone with nobody to care for and advocate for them. Most of these patients do not even have a voice on these forums as they are way too sick to take part. I just hope that a way is found to include the very sickest patients in research studies and drugs trials - because they need it the most and we need to see what will affect the disease at this level.
Take care all,
I'm sorry to hear about PhoenixDown. I like them and wish them the best.
PD. My thoughts are with you. I think I know how you feel. Ive been in similar and still are in the situation of needing more support and worsening due to not enough. (Im now ending up in hospital, needing to be ambulanced nearly every month now due to not enough support and collapsing and unable to get back up.. or finding myself so weak I cant get to the toilet or get a drink).
Hopefully there will be some change for both of us soon and we will get the physical support services we are needing.
Like they've done to you, different country but same situation, they've tried to put me in mental health catagories for things and ignored my physical issues. I even was forced to sign something which had an mental health issue on it which wasnt true just so I could get placed with a decent support agency! They insisted it had to be written there (its like blackmail!). I still thou dont get enough support time.
Im currently worried I may get sectioned as I fight to get my support needs met.
You can also try a Google Site Search
Separate names with a comma.