• 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, 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.

SOS – Need Help Could Get Sectioned (Mental Health Act)

snowathlete

Senior Member
Messages
5,374
Location
UK
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.
 

mermaid

Senior Member
Messages
714
Location
UK
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.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

I worked at the Inland Revenue, and MP letters (on behalf of unhappy taxpayers) got absolute top priority!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
 

golden

Senior Member
Messages
1,831
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.

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
Golden
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
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.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
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.

Boy you nailed that issue! Amazing how much incorrect info gets into ones chart/records.

Just some thoughts -
I am frozen to the bone too - have a handful of coal left and no other heating. Turning into tortoise mode .

I am sorry to hear this. Is there heating assistance available where you live?

All The Best
Golden
 

EJE

Messages
4
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.

http://www.mind.org.uk/

Legal Advice Tel: 0300 123 3393 or email legal@mind.org.uk

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.



In case it helps I have Googled to compile the info for the groups recommended:

1. The 25% M.E. Group

Main Office: 01292 318611 - Office Hours 9.30 to 5pm - Monday to Friday
Advocacy Worker: 0141 570 2938 - Office Hours: Wednesday and Thursday 11am - 3pm

You can also email the advocacy worker by clicking a link on this page: http://www.25megroup.org/contactDetails.html

They have lots of guiding information here on how to get help or fight: http://www.25megroup.org/info_advocacy.html

2. ME Association - http://www.meassociation.org.uk/

Quote from their site: "Do you need help? ME Connect – our telephone helpline on 0844 576 5326 – is open every day 10am-12noon, 2-4pm and 7-9pm. You can also email meconnect@meassociation.org.uk"

More about what their helpline does: http://www.meassociation.org.uk/information-and-support-line/meconnect/

3. Invest in ME

http://www.investinme.org

I did not find that they offer help for individuals, but you can ask.
No phone number.
Email: info@investinme.org

4. ME Research UK

Telephone: 01738 451234
E-mail:meruk@pkavs.org.uk

Also they are a research organization but maybe worth asking.
http://www.meresearch.org.uk/

5. The Grace Charity for M.E.

http://www.gracecharityforme.org/
No phone number.
Email: info@thegracecharityforme.org

6. Also maybe support group owners or members near you will know more. Big list of groups: http://www.mesupport.co.uk/index.php?page=uk-republic-of-ireland

7. Action for M.E.
http://www.actionforme.org.uk/

Services Directory: "We have developed a database of 1300 services including UK support groups, advice agencies, NHS clinics and private practitioners, to help you find support in your area and nationally." http://www.actionforme.org.uk/get-help/services-directory

"Our Welfare Rights Line offers information and advice on welfare benefits, disability discrimination, employment and insurance issues. Tel: 0845 122 8648

Mon 1 to 4pm
Tue 9.30am to noon, 3.30 to 6pm
Wed 10am to 12.30pm, 2 to 4pm
Thu 9.30am to 12.30pm
Closed on Fridays and bank holidays.

For general telephone enquiries on M.E.-related issues you can call our office on 0117 927 9551 or 0845 123 2380 (lo-call)."

They can help connect a patient with media (newspaper, television). You sound too severe to give an interview but if you are not getting help, it may be worth trying to get media involved.
Itt
 
Last edited:

barbc56

Senior Member
Messages
3,657
Bump.
@justy

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.

Take care.

Barb
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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,
Justy x
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.
 
Last edited: