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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @muffin39   Pleased to meet you welcome.  

    Thank you for joining and sharing. Sorry to hear this.  

    I am one of the team of community champions.  We guide, advise and help new members who join the forum.

    Please can I ask have spoken to your Doctor why you need an explanation.  Your treatment.

    I know there are answers.  You need to know. There is an organisation called RETHINK.

    Have a look on line their website.   They offer advocate services for members of our community who have mental health issues and difficulties. 

    Do not understand or need explanation of  treatment they have.

    Speak up on your behalf.  Represent you at any meetings medical ones or NHS treatment. With you present.

    Used them myself. Had this situation of barely five minutes came out with no answers. Contacted RETHINK got the support and help plus guidance.

    Please can I also ask do you have any support with your mental health something else to look at and consider.

    I have mental health issues myself and know need to very much be looking and wanting to have good mental health. Plus wellbeing.

    Have you looked at any thing for additional support. ?

    I use mental health charities used this one last time might be worth taking a look .   May not be in your area but they do offer help, advice, support with mental health and do take clientele with additional problems and issues .

    I have a physical disability as well.

    https://www.richmondfellowship.org.uk.

    Hope that helps.  We are a friendly community. Care and share.

    Please ask if we can help with anything. Some one will know from our community or a member of our team.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,923

    Scope community team

    Hello @muffin39 and a warm welcome to the community. It sounds like you've got quite a lot going on, do you have much support at all? 
    I'm really glad to read that the cancer check up was clear. Have you managed to find out why the doctor prescribed folic acid? It might be worth giving them a call if you're unsure. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @muffin39,
    Welcome to the Community.  Sorry to hear you are going through such a difficult time at the moment.  It is nice to meet you.  Please let us know if we can be of any further help to you.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • muffin39muffin39 Member Posts: 4 Listener
    Thank you for my warm welcome.
     I’m always afraid to write anything on the internet always dread it because I don’t always make sense.

     I managed to get my answer for folic acid.
    I just have a low count and need a boost needs to rechecked in a month.

     I don’t get any support at all, I’m just waiting for advocacy worker for help.
     Citizens advice referred me, I wasn’t aware till today I received a letter from them.

    I’m on a waiting list for help and I have been advised to make a complaint about the NHS.
    I’m not 100% why,
     I think because I had a meltdown about everything he recommend complaining.

    The message on this post is only half of what is really going on.
     I did miss a lot out just down to me having no real trust in anyone and worry about people judging me.

    I tried acas and I was taking to long to get to the point and call ended.
    my daughter was with me she was really upset, I laughed and asked why.
    so I told her this is what it is always like for me.

     I phoned mind and I was told they are unable to help me and I can’t get the help I want.
    after trying to explain.

    When I use to tell my daughters about people not listening to me. So after I was first told I have autism my daughters try and help.

    So since November my daughters listen to most of my calls and cannot believe I have not been over exaggerating.
     I have tried and really tried get help.

    this has taken 3 hours 10 minutes and with help some days I can’t even spell my name right.

    I even made a woman cry while I had to explain my life on the phone.
    She said I know I shouldn’t but how are you still carrying on with everything that has happened to me from the age of 3 years old.
    you have gone though life knowing no better and apparently I’m a danger to myself.

    thanks for reading I try to keep smiling.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @muffin39 Thank you for sharing. Sorry to hear what has happened.

    You do not need to apologise first for explaining why you are here on this forum.

    We are here to help and give you some support and also a place to talk about anything .

    I have to share with you I am myself cautious and wary of expressing how I am what I need and where to go the problems to deal with.

    Been like this for thirty years or more ongoing.   Use this forum every day.  Helps me.

    Unfortunately in the health sector those we are supposed to care for us tend to our mental health or any health issues. There are those who do not listen, not want to do the job find they are trapped, stressed and over worked.  No excuses but it is happening more  and more many can not and do not wish to be wishing or  wanting to do the  job they applied for. Met so many.

    Trust me your a smart a intelligent person all you want is some answers. Yet you are being walked over by members of either the staff of some organisations .

    Had this myself.  I am aware of the problems in mental health and associated organisations, understaffed .over burden lack of resources, tight budgets all of that.

    The big issues with any thing you wish for or desire to get help. There will always be some one who will doubt you treat you different. Have experienced so many.

    What is important right now is ask yourself what exactly do you wish or want from a service. How can they help.?  Write it down  . I used to still do when meeting any one.  All anxious, nervous on edge . Here this is what I want and need.  Do that to my Doctor right now. Does help.  Give her the notes to read.

    The links I provided for you in my post to you. Please give them a try. I know used them because no one was listening. No one was giving me what I want.

    Also a chance to be independent , cope with my health history. Help my self as well have the the support worker in my corner.

    Had benefit issues and problems plus long standing addiction history. Been clean from that but need help for the benefit issues.  Plus my mental health and wellbeing.

    Last chance in my opinion had enough had serious problems with certain members of council teams and many others. Realised not me them.

    That is one vital point all services run on time lines sorry to tell you this .  Have to for one every person leaving another ten may take their place.

    Richmond Fellowship please can I ask give them a look. Two reasons first is that it is run with the clientele in mind. So clientele are evaluated but also asked to help with decisions regarding their own care.

    Second given opportunities and information regarding well being and mental health.

    Including looking at signposting relevant organisations, advice and guidance .

    Please if you wish to chat, talk if I can be supportive .  Ready to listen.

    Hope that helps.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • muffin39muffin39 Member Posts: 4 Listener
    I hope it doesn’t seem like I have come on and blaming anyone or anybody.

    My parents always tried, I have tried to get help because they and I didn’t think I was right.

    I have worked since 16 years old I’ve had 25 different jobs for the last 24 years with the same doctors just getting signed off with depression.

    So ended up losing my job and after a month get pushed and managed to a different job.
    Start work people start notice I’m different start getting bullied at work.

     So I didn’t realise any of this until 8 weeks ago I didn’t even know what I like to do and what I enjoy because I really didn’t know.

    my ex of 23 years started a job 3 years ago and worked with children and one of the children has autism my ex started talking to their parents and asked questions.

    she came home from work and got me in at doctors and came with me and she and the doctor was talking about me so it was my ex that told my doctor he might have autism and the doctor turned round and said I knew something was wrong with him.
    Then that’s when all this started 2 years ago.

     I don’t want to complain but I have explained in great details and I have things written down from what I have and still get told.

     I don’t expect anyone to come running or get help quicker I just leave it and think someone else must need the help more than me.
    I told psychiatrist everything about my life and I told her people must be worse off then me and need help more.
     I was told off because people like me have gone and slipped though the net and I really need help.

    wasn't aware I have always been bullied didn’t realise till 8 weeks ago.
    though school, every job the people I grew up with all bullied me.
     I thought my toilet needs was right I was asked because my sister has to fill in a booklet for my psychiatrist.
     I was questioned about it and works out I don’t even know I’m done at loo so getting bullied because I smell is because of I don’t know.

     I might seem bitter or angry that’s because I got help from psychiatrist now to be told I’m really mental ill and I need help And signed off work.

    I needed help with money and benefits I managed to get an appointment with citizens advice down to my daughter.

     I got help and I talked about everything it was there idea to complain about NHS before 8 weeks ago I just got on with life having what I know now as meltdowns I thought I was just stressed.
    everybody sees me getting stressed scratching my head banging my head and people think it’s funny because. 
    I am going mad and getting angry didn’t realise till 8 weeks ago it’s me having a meltdown even my daughters thought it was funny to get me to have a meltdown.

    I just want to be left alone and waiting for my turn weather it’s help or death I don’t mind.

    The last two weeks have been hard going though all benefits, fighting with work I’m have to do a grievance on Thursday on my own because work can’t wait until I can get help with it. I’m getting told I cannot work again I’m confused.

    last week I had to see a different out of hours doctors who has my medical records gave me 21 diazepam causing me to lose control of my mind I just lost my mind.
    and same with hospital I was told I needed a drug to help my nerve in my arm if I would have had that I would have been worse than with the diazepam.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Welcome x
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Sorry to hear things have been so difficult for you @muffin39.  Thank you for reaching out to the Community.  We are here to support you.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @muffin39 Thank you for sharing. I can feel the pain, the hurt the anger in your post.

    In my opinion you just some one a member of our community wanting and wishing to find answers some guidance some one to listen.

    The problem is as I know too well my own personal circumstances no one is listening.

    There are as I said before I can identify many things you have stated .

    I do think what is a difficult situation. Is finding that support that guidance.

    I do understand I have myself can and have been through many similar circumstances. I know there are members of our community who have been through the same.

    It is annoying, frustrating and so upsetting emotionally and mentally when you seek help. Want answers and some to just stop being jobsworth.

    Just do their role their responsibility to you as a person and give you some time to deal with anything.  Give the information, the advice the help to assist you.

    You mentioned Autism and ADHA.

    Please can I ask have you spoken to The Autistic Society. Another organisation I know just trying to be supportive.

    Helpline 020 7833 2299  Monday to Thursday 10.00am to 4pm.

    Friday 9am to 3pm.

    All I can add you not alone here. We are a community.  Many members have problems and need some one to talk to .

    May I add the benefit system is complex and confusing.  I can understand that.  Been on them a lifetime get muddled, mixed up and confused all the time.

    Please if we can offer anything to help and guide you .  Please ask.  

    I know that might be difficult unfortunately I know my self.  We live in a society that is self centred and selfish, rude, ignorant

    This community is not like that. I hope not.  All I can say need or want to know any thing , get in touch.

    Pleasure to meet you.

    Take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • muffin39muffin39 Member Posts: 4 Listener
    Thank you for your help and advice. 
    I honestly don’t usually say anything I just carry on.

    But last week the mixture of medication really top me over.

     I didn’t sleep from Friday till Monday I was going out my mind not knowing what was going on.
    My daughters nearly walked out and left me.
     I phoned DWP and I lost control.

    It wasn’t till Monday when I had a meltdown at doctors and then told because of medication to much diazepam I didn’t feel better till Saturday.

    Since Saturday I when I started feeling better I was told what I was like last weekend.   I feel embarrassed and ashamed I am really not one to say anything or complain.

     I have apologise to people for me actions.

     my doctor said I needed to get things off my chest and he didn’t realise.

     I’ve had 6 appointments cancelled and that when I phoned receptionist I have a note on my records to say I need appointments with my mental health doctor each month.
    it was first time in a year I’ve seen him.
    so he was happy for me to lose my mind and tell people how I feel because he knows I don’t.

     I phoned to apologise to the guy at DWP and I spoke to him he didn’t mind because he as been helping  since he’s had to do a report and it’s done you a favour.

    I have had some therapy but that was 8 years ago.
    honestly she wasn’t able to help because my childhood was to dreadful and she wasn’t trained for my sort of mental health.

     I do ask every time I see a doctor about help since first time I had therapy and I’m on a waiting list.
    been on for 8 years.

    I’ve just been on same depression tablets for 6 years because I don’t get listen to.

    when I’ve been going to doctors, I have been getting other doctors not my usual doctor.
    I should every month see my doctor there is a note to say I should see him.

     So I do try I have been told to change doctors my ex partner has already complained about my GP’S twice this is the reason I have to see my own doctor because of my mental state.

     I always think...when I don’t help I can’t be that ill others need it more then me.

    so get a job after a year of working to get signed off sick with depression.

    and then I am made to get a job again so 27 years of this going around and around thinking everybody is same as me.
    To get told I’m not normal.

    I have tried autism plus I contacted them and got an appointment so I went down hopefully to get help.

    I had a chat and I was  asked questions so I gave her my psychiatrist report and I had to explain a couple of things.

    autism plus is to help people with autism get into work or help them already in work.

     I can’t get help from them at the moment because I’m to ill the lady who has been doing this job has never seen anyone like this in all 22 years of doing this.

    she doesn’t know how I get up in the morning and carry on she was really upset about me and what has been going on.

     I explained that I have not even told you about me getting to 16 years old.

     I told her only one thing that happened to me growing up and I had to stop she cannot listen to anymore.

    You really don’t know do you how bad things have been and got.
    I laughed and said I’m not psychiatrist said this to me and she said yes it is right you really really need help and she phoned my work coach at job centre.

     I had a follow up appointment with autism plus just because she wanted to help me personally and she won’t get paid for helping me.

    so this appointment was just to chat and she told me she rang DWP and told them I am to ill to work and autism plus work alongside DWP and my work coach fully agreed with her and even he said I cannot work.

    finally DWP have seen the pattern and it is down to mental illness.

    Like I said it’s taken a lot for things to sink in and try to make sense till help comes.

     I know I’m not the only who gets frustrated with the system and I am not the only one like this.

     I honestly have thought I am just stupid and uneducated and didn’t care.
    just to realise at 43 I have to have brain training, toilet training, learning difficulties, 

    its just hard to make sense of it all.
    now I’m a bit better.

    I will wait for help and I have done for 8 years and I will take any help.
    but now it’s been noticed how bad I am and things are I’m not frustrated anymore 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @muffin39   Thank you for kind words and thank you for sharing.

    Please I can add I do think you have been through a lot and I hope that we as a community can be supportive.  Continue to do so.

    You hopefully will get the support, advice and guidance.  If there any problems or issues please ask us the community.

    I will be very happy to help you offer anything I can.

    As a community champion of the forum have a lot of time for any of our community. Also can identify many aspects of your life story and health history.

    Especially the Doctors.  

    I have I know given you a lot of organisations and lines of support.  Please consider those. Have a look might help you further.  Have a look at the previous posts I have sent you or I can give you them again.

    Please let me know.

    RETHINK could be a possibility as they deal with members of our community. Who need a voice at Appointments, Doctors anything NHS.

    Those with mental illness.  Need some guidance and advice from an Advocate when no one is listening.

    Advocate service they will represent you with you in attendance . Will meet with you before hand and discuss what you need to say.

    Does help .  All changed for me when I called them at the suggestion of my support worker.

    I understand very much what you have been going through.  

    You mentioned thinking others need the help not you.  Because I am not that ill. To give you reassurance  That is going to change.  You need the help and support.

    Also you mentioned apologising to people. In my opinion you done nothing wrong just a member of our community seeking answers.

    Please can I also add small steps and take your time.  Any problems or hurdles or obstacles.

    Speak to me or contact the community . We are here to listen and offer what we can. Your a valued member.

    I use this forum every day when I need to talk or have a problem or an issue.

    Get a great response. Lots of support and friendship.

    Take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    Hi then 
    A laugh a day keeps the psychiatrist at bay. 
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