• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Help for Justine Roach, severe ME sufferer

Min

Guest
Messages
1,387
Location
UK
A facebook group to help Justine Roach has been set up:

"Justine Roach, 37, is currently stuck in a psychiatric unit on the Isle of Wight. She suffers from severe ME and is without appropriate medical care. We do not know all the details of the situation but her family is not helping and her ME/CFS friends are very worried. Understandably, she wants out. She is bedbound and needs to be cared for, not just labelled as depressed and left. This groups sole intention is to help Justine and to secure appropriate medical care for her."


http://www.facebook.com/group.php?gid=151856554825234
 
On a day when dreams come true in the opening of the WPI, it a stark contrast to hear of Justine's dreadful situation. It's also a reminder of the urgent need to keep pushing forward for all our sakes. I'm so sad to hear that she has been left in an inappropriate medical facility where it's unlikely she will meet with supportive understanding. We might like to think that this could never be me but who knows - it could be any of us. I guess it could be nice to send her some cards and good wishes to let her know she's not forgotten.

Thanks for letting us know Min.
 
Messages
13,774
You sometimes here about these cases, and it never seems that they return from psychiatric care feeling grateful for their time there. Shouldn't that concern someone other than patients?

Are there people we know about who have recovered wonderfully from CFS like symptoms when sectioned?

I almost feel tempted to give it a go myself: "I'll do whatever CBT/GET stuff you tell me for six months, under 24 hour care so you'll know I'm doing as you ask, and if there's no improvement or a worsening of symptoms you then have to commit yourself to finding out what is wrong with me rather than just encouraging me to take responsibility for my illness."

(Sorry if this is a bit of an inappropriate reply - just getting over a funny migraine and feeling a bit out of it).
 

V99

Senior Member
Messages
1,471
Location
UK
Thanks for posting this min.

I am so angry. How DARE they. Who the hell do these people think they are. Let's get her out guys. We can do this. Write letters, contact the authorities. Let's blast them and get her the help she needs.
 

V99

Senior Member
Messages
1,471
Location
UK
I posted this on the other forum, we need as many voices as we can get. And I will be joint facebook tomorrow. So come on and let's fight back.
 

Min

Guest
Messages
1,387
Location
UK
I posted this on the other forum, we need as many voices as we can get. And I will be joint facebook tomorrow. So come on and let's fight back.

Thank you. I've sent her a card, but it seems so inadequate in view of what she is suffering, & with the knowledge of what happened to the late Sophie Mirza.
 

V99

Senior Member
Messages
1,471
Location
UK
My MP is on the APPG so I will contact him today. Probably an ergent email. We proably want professor Hopper to be made aware of this, and anyy other MP's we can get.
 
Messages
26
Good news regarding Justine:

Someone from IiME has now visted her &has permission to speak to the nurse in charge of her care on her behalf (she wasn't there during the visit). The nurse the IiME representative did speak to actively requested information on ME. Let's hope things will start to improve soon.

P.S. It has been requested that people DO NOT phone the ward and also that only messages of support for Justine are sent to the Ward.

**FYI I was not responsible for this good news it was a fellow ME sufferer over on fb who has been in contact with the awesomely wonderful (think that needs saying!) IiME about this and has made things happen. She knows who she is!


(from post on another forum)
 
I absolutely LOVE the small but perfectly formed team at Invest in ME. They are quite amazing and I'm so happy that they will be able to offer reliable information to the health staff involved in Justine's care. Thanks IiME for looking out for the most vulnerable.
 

sproggle

Jan
Messages
235
Location
Teesside, England UK
Just to say please don't call or contact the ward in any way, the staff have accepted a lot of info on ME and any further correspondence is unnecessary at this point and may prove counter productive.

It has been accepted that the ward is not a suitable place for Justine and arrangements are being made for her to return home. This is simply taking a little time due to her needs, IiME have been wonderful and continue to liaise on her behalf. Justine has thoroughly appreciated all the kind and supportive messages from people, anyone who wishes to send her a card and a simple message of support can do so at the following address:

Justine Roach,
c/o Osborne Ward Seven Acres,
St Mary's Hospital
Parkhurst Road
Newport
Isle of Wight
PO30 5TG.

We ask anyone sending a letter to Justine to keep it light and personal to her. No campaign speak or anything that would cause her any worry or distress just simple, short words of friendship.
 

Min

Guest
Messages
1,387
Location
UK
It will take her a long time to recover from three months incarcerated in a place deemed inappropriate for her needs.
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
Didn't

Sophia Mirza's case teach these @#@#@ anything. I love england but this is what happens when the government gets control of your health care. It's bad here in the US too but this is archaic.
I'll do anything to help. What can we do?
 

Min

Guest
Messages
1,387
Location
UK
Justine has today been told she should be allowed home in ten days time. She has been held in the psychiatric ward since June 22nd.

The only UK charity to have helped her is Invest in M.E.