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

[PhoenixDown]

I've been deteriorating and I live alone.

I've recently had a horrible ordeal at my local hospital where I was told I had “no weakness”, by numerous professionals. They didn't even write down my symptoms accurately, for example “severe tiredness” as reason for admission (which wasn't what I'd explained).

I am at home now but I am so weak I can not cope. I have carers come in for 45 minutes a day but this is not enough.

I always wondered if it was a myth, people being refused help from social services unless they take a mental health referral. Well now I know first hand that it's real. During my hospital stay they said I had to take a combined social services and mental health referral because I didn't fit into any disease category and couldn't get long term social care & support any other way, which means I didn't really have that much choice even though they said it was up to me. So far this ultimatum of mental health referral or no social help has not been put in writing despite me asking them to do so.

I am not saying all mental health workers are sinister however I am genuinely scared that I could be sectioned, and deteriorate rapidly, with no one willing to fight for me or my rights. I can't stand the noise in hospitals, it really makes me worse, but no one truly acknowledges these problems, they see it as a minor thing. My family don't see this as a physical illness, I don't speak to them any more except for one family member who I'm sure would not fight for my rights or challenge the powers that be. Even if I'm sent to an ordinary hospital I will deteriorate quite rapidly due to noise and other problems.

I never said “I have ME”, doing so would have meant digging myself a deeper hole, besides I became disillusioned with such illness labels years ago, however it seems staying silent won't avoid psychosocial viewpoints and the problems surrounding them.

I've tried to engage with what's been offered so far, I haven't dismissed them immediately (including physiotherapy) but my outlook is grim. I'm getting worse day by day, I am so weak by night time that I can barely manage to take my medications. I've never had recovery/remission cycles and only have bad days. I urinate into bottles next to my bed and struggle to open water bottles to stay alive. I'm only 29.

 

[aimossy]

any chance you can get any help from an M.E society in the UK for some personal advocacy?
Im so sorry your in this situation phoenixdown!!!

 

[PNR2008]

I am sorry for your sufferings. I too have little family support and hate hospitals, the smells get me which is in everything even the food. I don't know how to help you since I'm in the USA but just know I'm thinking of you and can relate to your pain.

 

[leela]

Oh, how awful. I'm so sorry you have to go through this. I second the ME Society idea, and possibly finding some kind of specialist who can diagnose you with something other that ME like mitochondrial disease, some autoimmune thing--there's lots of overlap that maybe could lead to some care and help.

What pisses me off is even their "severe tiredeness" description should be taken very seriously. This is often the early stages of
serious illness, which these asshats can only seem to catch with their crappy diagnostic tests once one is too far down the rabbit hole. It's infuriating! Mental problem my skinny botto!

 

[Dreambirdie]

So sorry you are in this dire predicament. Sounds awful!

I have no idea what to recommend, other than what leela said above. Also, maybe... could you call Dr Myhill's office and ask them for advice on this...? Just a thought.

I wish you better days. Hang in there.

 

[Luke]

Sorry to hear of your troubles PhoenixDown. Is there one of the CFS clinics anywhere near you? I know they're basically crap it but could help get you support based on a ME/CFS diagnosis rather than mental health. Also, is there an advocates service in your area? It sounds like you need someone to fight for you.

 

[peggy-sue]

I would think the 25% group is what you need;

It's for sufferers of severe ME and their carers.

http://www.25megroup.org/home.html

Hang in there, this must be terrifying.

 

[Hope123]

I've been deteriorating and I live alone.

I've recently had a horrible ordeal at my local hospital where I was told I had “no weakness”, by numerous professionals. They didn't even write down my symptoms accurately, for example “severe tiredness” as reason for admission (which wasn't what I'd explained).

I am at home now but I am so weak I can not cope. I have carers come in for 45 minutes a day but this is not enough.

I always wondered if it was a myth, people being refused help from social services unless they take a mental health referral. Well now I know first hand that it's real. During my hospital stay they said I had to take a combined social services and mental health referral because I didn't fit into any disease category and couldn't get long term social care & support any other way, which means I didn't really have that much choice even though they said it was up to me. So far this ultimatum of mental health referral or no social help has not been put in writing despite me asking them to do so.

I am not saying all mental health workers are sinister however I am genuinely scared that I could be sectioned, and deteriorate rapidly, with no one willing to fight for me or my rights. I can't stand the noise in hospitals, it really makes me worse, but no one truly acknowledges these problems, they see it as a minor thing. My family don't see this as a physical illness, I don't speak to them any more except for one family member who I'm sure would not fight for my rights or challenge the powers that be. Even if I'm sent to an ordinary hospital I will deteriorate quite rapidly due to noise and other problems.

I never said “I have ME”, doing so would have meant digging myself a deeper hole, besides I became disillusioned with such illness labels years ago, however it seems staying silent won't avoid psychosocial viewpoints and the problems surrounding them.

I've tried to engage with what's been offered so far, I haven't dismissed them immediately (including physiotherapy) but my outlook is grim. I'm getting worse day by day, I am so weak by night time that I can barely manage to take my medications. I've never had recovery/remission cycles and only have bad days. I urinate into bottles next to my bed and struggle to open water bottles to stay alive. I'm only 29.

I agree that you need help from the experts -- other than the 25%, other groups you could call upon are the ME Association, Invest in ME, and ME Research UK. Although the latter two are focused on research, they do know how severe the illness can be and that the psychological treatments aren't going to resolve the illness and might be able to refer you to other resources. Google for them.

Another avenue you could try -- not sure how it works in the UK -- are disability rights groups. Where I live in the US, even though most are not specifically geared or knowledgeable about ME/CFS, the groups usually help disabled folks get the care they need and keep them apprised of their legal rights.

I'm always a bit surprised about how UK medical laws work. In the US, it's not easy (fortunately) to get adults held in psychiatric wards merely because they disagree with treatment, even if that disagreement leads to poor health (I'm not saying this in the context of ME/CFS but rather people who, for example, don't want to take their pills for diabetes for example). If the person can articulate the pros and cons of their different choices, it means they are competent by US law to make their own healthcare decisions. The main reason people are held are if they have active suicidal plans or are a danger to others.

 

[Luke]

Great though the groups people are mentioning are... do any of them actually offer practical support in this sort of situation?

In my area it's possible to self refer for social care help. You then get a visit to asses your needs.

 

[golden]

Have been wondering if you got the help and support you needed?

I did spend the afternoon researching UK sectioning laws when I read your post and tried to find safeguards and solutions. Did not find the clarity I needed.

There needs to be better access to information in this area since M.E. people are more susceptible to this kind of abuse. This is something in which say Cancer patients don't have to worry about.

Very Best To You,
Golden

p.s. if there is something I can do to help, please ask and I will try.

There is Grace Charity For M.E. - who may be able to offer practical assistance...

 

[SickOfSickness]

I agree that you need help from the experts -- other than the 25%, other groups you could call upon are the ME Association, Invest in ME, and ME Research UK.

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.

 

[Seven7]

If you can say you have Orthostatic intolerance (I have the official diagnosis of dysautonomia on top of CFS), they will do the right thing (IVs, monitor BP and HR) I learn the hard way in the ER and you will be treated indirectly your CFS crash. If you do not have a dysautonomia diagnostic I suggest you ask for a TTT. Help and other things will come easier.

 

[alex3619]

I am in Australia, but how I was treated when I mentioned orthostatic intolerance in hospital was very different. Many docs might like to ignore it, but at least some hospital staff here know what it is and that there are special precautions. If you have an OI diagnosis it will be more recognized.

@PhoenixDown , please let us know if you are OK.

PS I noticed that PD made a Like today on another thread.

 

[SickOfSickness]

Is there a site with form letters which a volunteer or paid advocate could send on behalf of a severe patient? To make it easier on the carer/advocate, or would form letters not be taken as seriously?

 

[alex3619]

Is there a site with form letters which a volunteer or paid advocate could send on behalf of a severe patient? To make it easier on the carer/advocate, or would form letters not be taken as seriously?

That sounds like a site that is really needed.

 

[PhoenixDown]

I'm sort of ok, still in a bad situation, can't type much. Sectioning is very unlikely so it seems, but so is adequate care.

Thanks for every one's concern & advice.

 

[peggy-sue]

Thanks for making such an effort to reply.

You are in our thoughts.

 

[alex3619]

I'm sort of ok, still in a bad situation, can't type much. Sectioning is very unlikely so it seems, but so is adequate care.

Yes, I understand about inadequate care. Its almost a universal experience, though the UK seems particularly bad. Do look after yourself.

 

[golden]

I'm sort of ok, still in a bad situation, can't type much. Sectioning is very unlikely so it seems, but so is adequate care.

Thanks for every one's concern & advice.

Really relieved to hear that.

Some disabled people get 24/7 round the clock care so that they can go and do a 9-5 job. Their carer goes with them.

I dont begrudge this, I think its great. But in contrast I dont feel its too much to ask that you should be given more care and help each day.



Best to you,
Golden

 

[Valentijn]

I'm sort of ok, still in a bad situation, can't type much. Sectioning is very unlikely so it seems, but so is adequate care.

I think there's a connection - if they section you, they become responsible for your well-being. And, well, that might get awkward if their drugs make you worse

Hence the status quo will generally be to ignore ME/CFS patients entirely.