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support, what a joke from nhs

livonia Community member Posts: 75 Courageous
hello Mick, 

well i am looking for ideas really as it is clear that the nhs just want to pump me with drugs and its been nearly 10 years (3 not working) of struggling with mental health problems and chronic pain/fatigue from my fibromyalgia.  I am not quite broken but it really is awful being me sometimes.  just how it is.

its complex but i have lived with trauma up to age 21 regards home environment (parents i am told both displayed psychopath traits which explains why i had such a joyous time!.  So they are not in my life now. but the abuse at their hands sadly is.
now in my fifties i have had continued trauma from abusive relationships (nope they didn't seem like they were abusive when we met).  I got out of domestic abuse relationship and have escaped stalking too which has resulted in some ptsd type symptoms.  

MIND don't support people with my post code in Devon but if i was in somerset just three miles away they do and provide tenancy support - great eh?  budgets .  They gave me a one off support so i could register with a new GP who was horrific (doesn't believe in fibromyalgia) and then they helped me again to register elsewhere as the support worker couldn't believe how i was treated.  Then i got referred to adult team for mh (i had support in my old area 100 miles away).  So i have gone nearly a year with no support and i am struggling which is no suprise as i saw gp regularly and phych nurse and had a housing support officer.  you know the type of things i would be feeling i am sure.  So i won't depress everyone.  Its a springboard of jump or not as regards remaining alive.  I am not after sympathy  and yes i do ring support lines if i feel desperate.  still its just the fact of things.  on the surface i don't think i present as being that poorly the joy of hidden disabilities but goodness i am suffering.  

so i am looking for ways i can try find my own support people as i really want to get better mentally - i would be happy just not to feel suicidal initially.  dwp ( up til three years ago i have always worked despite being ill a lot of the time) so its not helped with the way dwp deal with hidden disabilites and asking me at medicals so why haven't you killed yourself is barbaric isn't it.  So i am angry too for begging for something i paid into !  i have full stamp worked since 15... and brought two kids up when their dad decided he didn't fancy being a parent.  

i saw a mh nurse in my new area with a friend for an assessment and her behaviour so was so confrontational and horrific i had to enlist my friend's help to complain via the hospital's in house support for patients.  not very helpful to my mh !  So it looks like i am on a waiting list for a short term  co ordinator  but being a very rural area nothing any time soon.  I am also on wait list for therapy.  This is at the adult mental health intermediate level.  if i access the lower level i will be nuked of the adult mh list.  I cd access about 6 counselling sessions at the lower level but i need longer term support (if it ever arrives) and that is to be provided at the higher level for which the manager who saw us trying to smooth over the complaint - said best to stay waiting as i qualify for their support.  although nothing is here yet.

I think i could do with some life coach/counsellor type person even if i have to pay out of my benefit money to talk things over when i feel in crisis and in general.  any ideas?  Devon is pretty useless for this and the list of counsellors etc seems huge when i looked on line. 

A friend paid for me to have some emdr therapy to help with the trauma i have suffered its a long process and expensive.  i have had four sessions and they do seem to have helped.  But they were over in totnes way which is a very long distance 50 miles for me from mid devon. my friend drove me.  She has her own commitments but i am grateful for a bit of help.  

all i seem to get is told what i can't have. !  

The emdr person (who has worked in nhs) said in their experience unless you are making repeated attempts - have been sectioned or serious self harm, there's not much on offer from nhs services in Devon.  So i seem to have splipped through the system that really is seems only set up to chuck drugs at me.  same for my Fibro too.  


  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @livonia and thank you for taking the time to share this with us all. I appreciate how hard it can be to open up and share these experiences. 

    Here is a list of qualified therapists which you might find helpful. Also, there is an app called BetterHelp which is online counselling which allows you to access support at any point.

    If there is anything else we can do to help then please do let us know!

  • needavan
    needavan Community member Posts: 9 Listener
    Just like to say I can fully identify with you, I have fibro no help available, and long term complex mental health issues but just get given tablets for both.

    The NHS just won't do anything for complicated issues, they like broken legs etc 6 weeks and you are better.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @needavan, thank you for sharing your experiences and I'm sorry you also aren't receiving any support. Is there anything particular you would like support with?

  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @livonia   Pleased to meet you. Thank you for sharing your story.

    I have mental health issues mainly anxiety and depression. I just wanted to add feel for you, do understand what your going through.

    I do think you know what you want and that is the most important aspect for many service.

    I used this charity see if there in your area.


    I had similar experiences with NHS services now use charities. Please give them a try this charity.

    I know there is help and support out there but is the issues and problems of finding any.

    I was must share the same had every time found myself getting no where so found this charity.

    Got help and support, guidance, advice with wellbeing. Also my long term benefit issues.

    Helped and guided me enormously .

    Education, knowledge the key and also given some chances to input my own choices and care plans..  Most important of all listened to and self esteem and confidence in dealing with what I have.

    Use coping methods and strategies .

    I wish you well. Please if I can help with anything please get in touch.

    Take care.


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