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Disabled people and mental health - why is the support so poor?

criptacularcriptacular Member Posts: 4 Connected
edited June 2018 in Guest blogs

Errol Kerr is a student, editor and blogger, focusing on everything from politics to gaming. Through his blog Criptacular and on Twitter, he tackles discussions on mental health, physical health, disability and neurodiversity whilst constantly making sure to keep an eye on his own.

In the past three years I’ve been referred to multiple therapists for my mental health. I’ve walked away from all of them for the same reason: they can’t see past my disabilities.

Whenever I’ve been to therapists, I aim to go in to talk about feelings of anxiety and depression, both of which are incredibly prevalent in my life. For disability context, I’m autistic and have hypermobility syndrome - the latter of which causes a significant amount of pain, the former causing noticeable social communication difficulties.

The anecdote for my leaving therapy sessions is almost identical. I’ll book in an appointment to see my GP so I can discuss my mental health and ask about support. They refer me to a therapist before taking any “other actions”, even when I’ve indicated therapy has been unsuccessful before. After I’m booked in for therapy I make my way to the therapist to discuss my mental health.

The moment I disclose my disability and condition, the discussion veers entirely from my mental health concerns and focuses solely on these other external conditions. I attempt to explain that the issue is to do with other factors in my life that I want to talk about, but the professional always comes back to ‘difficulties’ I must face due to these other experiences. At these therapy sessions, any and every issue with my mental health is connected in some way to these factors.

I felt I was being told that my mental health issues were there because I was disabled. 

 

Thing is, I quite enjoy being autistic and I manage my pain relatively well. The problems I face with my mental health have very little to do with these other experiences and I’ve stumped professionals more than once when I tell them that in reality, I’m managing these other experiences rather well.

After one of these therapy walk-outs I had a discussion with a friend of mine who is also disabled. They informed me they’d had an almost opposite experience with their GP, whereby they had been told they “can’t” have certain mental health difficulties, often because they’re disabled and “already have it bad enough”.

Sometimes it just feels like we can’t win - either we’re too physically disabled or neurologically different to be mentally ill, or if we are, it’s entirely because of that.

 This is an important topic to recognise as there’s a large number of people with physical disabilities or neurodivergent conditions who also have mental health difficulties. It’s common knowledge and well-documented, but it’s something I fear that people don’t know how to recognise, don’t know how to acknowledge and are woefully unequipped for. It seems that, to everyone I’ve tried to speak to, correlation equals causation one hundred percent of the time.

It’s so important to recognise that support for disabled people with mental health difficulties is remarkably poor.


We’ve been taught to think of these things as different experiences – as one thing that can cause another, rather than individual experiences that can indeed impact each other but aren’t intrinsically linked. It feels like the likely issue with chemical imbalances in my brain were ignored in lieu of talking about how I can’t walk without an aid, or struggle talking and making eye contact simultaneously.

I’m planning on going back to my GP soon, as my mental health isn’t great at the moment. I plan to put these exact words in front of them, explain to them that whilst my body needs assistance, my mind needs some support that’s separate from that.

Whether rooting our mental health into our disability or denying its existence due to it, this attitude makes us feel lesser, inferior, and only leads to some of the most vulnerable people in society being ostracised and pushed away from support.

So, I want to start a discussion.

I want to have a conversation with disabled people who have sought mental health support, to start talking about the difficulties we’ve faced. I want to open up the floor to people who have been denied adequate mental health support by people who can’t see past physical or neurological conditions, chronic illnesses. I want to talk to people who have been let down by those who, when asked about the mental, couldn’t see past the physical.

Have you experienced similar issues? Have you had perfectly fine experiences seeking mental health support? Are you scared to seek out this support because of this issue? Let me know. We can’t make change by keeping silent.

Replies

  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • criptacularcriptacular Member Posts: 4 Connected
    Hey,
    Simply put, a choice should be offered. Agency should be offered.
    Do you think that therapy would have been more effective for you? You should have had that option, rather than being forced down the medical route. 
    I, personally, would quite like the option of medication to be brought forward and I've mentioned that twice in GP appointments - and it's never considered, which is why I didn't really bring it up in my blog. 
    I don't necessarily think that new alternatives need to be created, I just feel that the current ones need restructuring to accommodate more for the people they're caring for. I'd love to come up with new alternatives for mental health, but I'm unfortunately not equipped to think of stuff like that.
    If medication has severe side effects and certain actions aren't working, other options should be considered before enforcing certain elements. I obviously don't know the extent of things for you, but I would, in an ideal situation, have consulted you about the best course of action moving forward. 
    It doesn't seem like that was done - which is precisely the issue.

    I should expand my own quote: "denied adequate mental health support by people who can’t see past physical or neurological conditions, chronic illnesses". to mention mental health at the end of it, as we know that, with mental health, they either don't see it or can't see past it, either. 

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  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    When my mental health spiralled out of control again in 2010, my GP advised me to self refer to a local charitable service to get help quicker (CBT) and hopefully get better quicker which I did. What he should have done was referrred me to the NHS team at the same time. I’m saying this because resources are limited so you aren’t always getting as much support as you need and it’s very much a sticking plaster on a broken leg. So two years down I’m stuck in the same place asking to be referred to the NHS team! This particular GP seems averse to refer on for most things to be fair. Then I get a minimum amount of therapy again CBT to get me a little bit better as long as I jump through their hoops and meet their goals. Now, 8 years on, I may need to go back down that route as I’ve gone as far as I can on my own. The best service I have received has been the ongoing support from the local charitable service even though I’m not getting therapy I just use other services they offer. I wish they had more resources. They are good at their jobs. I don’t blame the service providers I blame the funding providers. Just look at the CAB service! They used to go to DWP appeals etc with you now they don’t! GP s charging for letters to DWP for people on benefits because it’s taking up their time! And so it goes on. 
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  • feirfeir Member Posts: 388 Pioneering
    I had the opposite, more that my 2nd therapist didn't understand the amount of pain i was in was what made me feel suicidal, and that was my main source of wanting to be dead, i don't think you can understand just how debilitating chronic and severe pain is until it happens to you. So in way she didn't understand me partially but after talking for a few weeks she did eventually. I find it sad that your therapists are not listening or not questioning you more to understand you.

    Apart from that she was great, so overall i think she was good and helped me out way more than i expected. she has even recommended me to services that might be able to help me out as that was part of my discharge.

    I got to choose what services i could use, i did CBT first as i was diagnosed with moderate depression and told that would likely help me, it didn't as i have the right mindset already so when being assessed next the lady from CBT noticed that i wrote a lot down and said that maybe talking to someone would help so i went for online therapy (i couldn't walk at all at this point and seeing someone irl would take about 4 months at least to wait so this seemed the best option). That worked out well for me. I also got to choose my therapist based on what their expertise is in. The online help you could also use a forums that other people with mental health problems were using and talk to them, support each other.

    I hope you get the proper support you need, it can make a big difference.


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  • littleruthie123littleruthie123 Member Posts: 477 Pioneering
    Wow Victoriad ,that sounds awful beyond awful I'm sorry you were treated that way .thank you you've made me think about the other side of it .i will be more patient waiting for my therapy .we seem no further ahead with mental health in this country .so many people suffering alone with no sight of any help ,and financially either .no wonder there's such a high suicidel rate 
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @criptacular Pleased to meet you. Seems all the experiences I have fall into you are seeking help because you are disabled. The disability you have is the main the reason you are mentally ill.

    Had this from numerous therapists who misunderstand everything you tell them.   All out of University new and shiny smartly fine looking young women who have no idea about the lives of their clientele.

    Not in the degree course does not match up to what I am telling you.  You are wrong. Not in the textbook. Hang on my mental illness caused by addiction.

    My disability genetic  Yes I have had problems being simply disabled who does not . Do that and seek that you are having problems adjusting and identifying  Being the way you are and then you will can cope with your mental health.

    Echoing all the time. More time spent her talking one young woman about the virtues of my disability. Causing my mental health and I am in the wrong constantly. Ended up going her ranting and talking after 25 sessions. Some of the time just sitting listening. Passing judgement and me my mind wandering. Thinking about other stuff.

    Twenty plus years and on the medication the right one. Only after failures of these doomed sessions.  Am now always feel for. To hear about others experiences and have my thoughts for them.

    Understand every body's stories.  The system is bust we all know that.  Underfunded over whelmed and very stressed staff.  Tell me about it. Support workers working late at night to do paperwork. Reply to my bedtime stories or sagas I have sent them.

    On line had many a message . Ended up reams of stuff to some one who will listen and read. Nothing changes .

    How can we mend a broken system what has to change. Arguing and playing a vital part. Should be us the clientele. One time NHS had group sessions and meetings. To involve the public consultations. I became involved and have memories of trying to put my argument across.

    All on deaf ears. All wasted time.

    Please can I also say acceptance of your disability is the right way forward. What is not acceptance is giving people who have mental illness. The choice of treatments.  CBT for all . It does not work Why is it working for others not me. I holler. Everything is CBT. Why is the magic cure. What magic cure is mindful ness.

    Does not work for me as well. All treatments either or. Yet in discussions I am frustrated by lack or empathy from organisations unwilling to support me in just having common sense.

    What is the point I ask my self.

    Having been booted up the bum many times by support workers. Some really great and steering me in the right direction. Others because it more than their jobs worth.

    Kick up the bum to you because how dare speak about your own views and opinions on treatment. We are the support workers not you.  Hang on I am the ill one do I have a say.  Yet seems not and so the conveyor belt rolls on.

    They decide if your well and out you go. . Blundering around wandering around clueless where to go.

    Have no social skills and expect others to help and give advice.

    So what can we do. 

    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
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Could easily be that I'm misunderstanding here. Forgive me, please, if that's the case.
    Having suffered from depression since childhood, and having narrowly escaped ECT in my late teens, (I'm now 66, almost 67) I was prescribed citalopram probably a decade ago. It made a significant difference, and continues to do so though I've reduced the dose somewhat. The thing is that I don't have any other 'disability', do not consider myself disabled and am not perceived as disabled by my GP or society at large. My medical issue is essentially brain chemistry, which is being treated as such.
    Now, if I were disabled - if I were autistic or in continuous pain - would the doctor have seen past the disability and recognized that I needed the psychotropic (?) citalopram? I think probably not.
    Does that make any sense?
    Best to you all,
    Richard
    @JennysDad

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Depression is a mental health disability @Richard_Scope . I now consider myself to have a mental health disability although I hate labels . It seems to help you to get closer to the resources available . @Victoriad you are awesome for sharing your experiences. Thank you
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  • feirfeir Member Posts: 388 Pioneering
    edited May 2018
    What disability is autism classed as? I thought it was a learning disability, as  my son has an official diagnosis of this and his school/college also use autism on his official notes but i googled and it isn't classed as that and they are separate things. Just wondering for personal reasons and i can't find anything online so wondering if there is nothing and it is just a diagnosis on it's own..
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  • littleruthie123littleruthie123 Member Posts: 477 Pioneering
    My son has a.d.d it's classed as a mental disorder ,I think there in the same spectrum x
  • Richard_ScopeRichard_Scope Administrator Posts: 2,328 Scope community team
    Hi @debbiedo49
    You have tagged the wrong Richard :) I think you meant to tag @JennysDad
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • feirfeir Member Posts: 388 Pioneering
    My son has a.d.d it's classed as a mental disorder ,I think there in the same spectrum x
    Thanks. I don't even know what is wrong with my son and asked him about the school classing him as autistic but he didn't know either. So i wrongly presumed they'd used that as it was the same thing. After checking on google ASD is a disorder.

    I was initially wondering something about this topic and that's why i asked but it seems irrelevant now.

    I use a mental health forums and noticed people complaining they do not get taken seriously for things like pain because they are treated as psychosomatic (which even if the pains are that doesn't mean they aren't real). Seems like all the different conditions people have can overlap and this means they don't get the correct treatment.

    Everything is off topic though i think so i'll shut up now.
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hi, especially @debbiedo49
    I wouldn't suggest for a moment that depression is not a disability in the case of many of its sufferers. It is a question of degree. Retired, now, my depression does not significantly affect my ability to function in society or live my life, which is why I don't think I am seen to be, or feel to be, disabled myself, which is all I was referring to.
    I was merely trying to illustrate what I thought was the point of the article. A decade or so ago a GP prescribed a medication for me on the basis of my history of depression. At the time depression was, indeed, preventing me from living life to the fullest I could.
    What matters, I think, is whether the GP would have prescribed that medication if I had had a pre-existing diagnosis of fibromyalgia, autism or various other things, or whether my mental health issues would have been 'lumped in' with those conditions and the GP focused on treating my fibro, autism or whatever.
    As far as can be ascertained, my mental health issues appear to have been caused by a combination of brain chemistry inefficiency and my young life experience - constant moves from place to place, the separation and divorce of my parents, psychological abuse - it seems - by my mother. Were I autistic, for example, all of those things could still have been true, could still have occurred, but it seems questionable to me whether the medical authorities would ever have got around to taking them into consideration. 
    Again I'm not entirely sure if I'm making sense, so please bear with me. 
    Richard
    @JennysDad
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  • littleruthie123littleruthie123 Member Posts: 477 Pioneering
    I personally think anything that effects our daily life,and impacts our life in a drastic way is a disability 
  • Scotropic83Scotropic83 Member Posts: 4 Listener
    I've suffered from neurological health disorders all my life and now have PTSD to boot as well.  I've had great success finding my own treatment via Amino Therapy. Although this does not cover all the conditions discussed here, it does and continues to help some. I'm interested in anyone else's experience using herbal supplements or amino acids? 
  • criptacularcriptacular Member Posts: 4 Connected
    Well, this most definitely got busy! Nice to see a discussion. Sorry I disappeared, I've had an essay due in today. I will be replying to as much as I can either tonight or tomorrow. Just dropping a message to acknowledge I'm reading your stuff!
  • WaylayWaylay Member Posts: 890 Pioneering
    My god! That first article: "Southern Health had failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems over four years." 1000 patients in 4 years?? How is that OK?




  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello every body seems the end result of all this discussion is the negative impact we as a community feel. Which I understand. Add to the lack of compassion and sincerity in the care profession and may I add the behaviour.  Would I want to  have some one to care for me.

    The issues are such that how and why is this happening. All about one thing . Which is money. Of course it is. Being a business not about people but a business.

    I am afraid regarding the mental health system if you ring up certain organisations.  Even go onto their websites you are confronted about giving a donation.  Last mental health charity. Want help yes will help you. Cost you to meet me. My support worker exclaimed. Which I do not mind paying. Understand and be aware now. I know from a lot of my friends and former friends that they have a permanent standing order set up with the charity to pay for support workers travel expenses.

    Included in that would be car park charges. So the question is that what would you do?  You are ill get nothing from Social services long waiting lists and times. Spent. Do you go to the Charities and pay for services. Yet will be possibility you might also pay for Council ones as well.

    Once money comes into the equation do we as a community expect good service or it is going to get worse. My answer is the standards and ticking of form filling every time a visit.  Was becoming such a normality that I actually used to photocopy the assessment forms and keep them at home. To see my support worker come into your home. Laden with a tablet iPad, bag and then her own personal stuff. Like going on holiday I said to her joking.

    Same with mileage forms.  Remember got my own car but to meet her for lunch or assessment costs me.

    Are we in danger of losing the plot and regarding our selves as vulnerable people. Of course we all of us who have mental health issues long term. Strive and struggle every day with our minds our well being our thoughts.  Should we though be acutely aware of our failings and need constant support.

    If it going to be costing me personally money to heal myself. Can I identify help and support and consider healing myself at my own expense without the support of others.

    Understand need that support but when and how it is becoming more difficult to obtain .

    Realisation is this the issue then that if have a disability and mental health issues you suffer but they see the disability not you. Yet is it also the issues then about money then.

    Love to hear others comments.  

    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
  • WaylayWaylay Member Posts: 890 Pioneering
    edited May 2018
    @criptacular Sadly, MH treatment is really bad for everyone at the moment - we just get it a bit worse. :/ 

    1. Completely ignored the effect of my chronic pain when diagnosing MH.

    I've had MH problems since I was a kid/teenager. Chronic pain began 10 years ago, and it ended my PhD, my job and my career, I went broke, and my partner left me. I *may* have been feeling a little f*cked up about that, and my MH got worse. 
     
    GP referred me to secondary MH services; they offered CBT. Yes please. Then CBT psychologist diagnosed me with Borderline PD after 1 session. 1! (Only psychiatrists are supposed to diagnose it, too.) She used a variety of ridiculous "symptoms" as justification, including two which are relevant here:
    "...says she 'doesn't know who she is anymore', and
    having 'trouble deciding what to do with her life'".

    Um, yeah. Those weren't BPD symptoms, they were symptoms of the fact that I'd suddenly become physically disabled at 33 and lost my job/career/PhD/savings (including retirement)/and 6.5 year relationship. You think I might be feeling a *bit* out of sorts? Maybe uncertain of who I am because I  JUST LOST EVERYTHING I USED TO BE? Maybe I don't know what to do with my life because I'd already gotten what I wanted, and I don't have a clue how to deal with losing it. Oh yeah: I'm unemployable with my current health problems.

    Nope. Definitely BPD. 
    Don't you think the situation is  important?
    Nope.
    2nd opinion please.

    2nd opinion psychiatrist upheld her diagnosis without even meeting me - he just read her notes. She me that either I go into the BPD Service, or I'd be discharged and marked as a "difficult" patient. What choice did I have?  I was really ill, and this was the only help on offer.

    (Today: 6 years later, and I've had *10* whole sessions of group therapy, drunk a lot of coffee, smoked way too much, done a lot of mandala colouring, etc...)

    2. Used MH diagnosis to completely discount my chronic pain.

    BPD staffs person tells me that my chronic pain is psychosomatic. Argh. It is not. Certainly linked to my MH, (get sad, work harder) bring in MRIs, letter from my Pain Clinic consultant, letter from physio, etc., but BPD Service psych thinks he knows better. 

    Problematic. Can't get treatment from BPD Service, as they won't offer me treatment unless I agree that my chronic pain is psychosomatic, and agree to work in that in therapy. Unhelpful. But no other MH service will touch me with a 2O-foot pole because I have BPD (ooooh scary) & a "psychosomatic" pain condition (grrr).

    Then I was raped. The Rape Crisis Centre paid for 6 months of therapy with a fantastic private counsellor. At the end of tge 6montgs, she said that I clearly needed more therapy and she'd be happy to continue seeing me for £10 a week. SO LUCKY. I've been seeing her for 4 years. She believes my pain is real. 

    Oh, and I was re-diagnosed last week. I don't have BPD; I have Complex PTSD. CPTSD is thought to cause many cases of chronic pain, through physiological stress reactions. Hah.
  • BarbiesnemesisBarbiesnemesis Member Posts: 86 Pioneering
    Victoriad 'agency' is when you have power, self determination or choice in your own life. 
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  • greatsaygreatsay Member Posts: 17 Connected
    I have been on one endless Community Treatment Order since 2013 renewed every year. This means being sectioned if non-complient with my depot. I have had my bungalow door kicked in twice by the police to re-section me and being marched out in handcuffs in from of my neighbours too embarrassed to move back and forced to move into supported housing. I have been forcible restrained and injected against my will many times.


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  • greatsaygreatsay Member Posts: 17 Connected
    Fortunately I am under learning disability services. The only experiences I have had with mental health services have been very bad and one particular psychiatrist in my town has such a bad reputation its unreal, She has had many patients she didn't care about from utter incompetence they have been found floating dead in the river Trent that flows through my town. Total indifference! Fortunately the CLDT is better.
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  • WaylayWaylay Member Posts: 890 Pioneering
    CTO! I'd never heard of this before! That's Machiavellian! So you get sectioned, and then your freedom to live your life is taken away?! Yikes!

    @Victoriad Thank you for your response. It's good to be believed. I do go along with them, but look what that got me. :neutral:
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Victoriad said:
    Hen typo......Then lol I thought you were callling me hen hehe


    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
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  • WaylayWaylay Member Posts: 890 Pioneering
    TBH, I'd try anything to stabilise my MH at this point - it's stolen so many years of my life from me.

    I'm on the max dose of Venlafaxine, almost the max dose of lamotrigine, occasional benzos, and I've tried 14 other psych drugs. I've had so many different therapists and types of therapy (I just dropped out of my group therapy because the facilitator was making it impossible for me to get anything out of it, but I still see my private counsellor of 4 years). I've done behavioural interventions, mindfulness, meditation, light therapy, positive thinking, saying nice things to myself every morning, self-help books, support groups... I'm better than I was, but I doubt that I'll ever be well.
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  • nanmacnanmac Member Posts: 6 Listener
    Hi everyone, I’ve suffered depression and anxiety since I was a little girl, I’m nearly 66 now. I believe my problems came from being born deaf in one ear. It wasn’t picked up on , until I was 7yrs old . By then I had been labelled “backward”. I don’t think anyone right up until even now, realised how being deaf in one ear , as had a impact on everything in and around my life. I was secluded, because I couldn’t hear what was being said. Laughed at for answering what I thought had been said etc . So I’ve struggled with no confidence, no self esteem . Which brought with it mental health problems, throughout my life. I’ve been on medication for years , I’ve had bouts of therapy. But each time I got to the point where maybe it could help me. Councillor was changed, and I had to start at the beginning again. I try to understand myself more these days. Because no matter what ailments I may suffer with now , GPs put it down to my mental health . So my problems seem to be the opposite way around to most yet the outcome is the same. I’ve been on the waiting list to see  psychologist since June 2017 . I’ve just received an appointment. We have been promised more resources to help with mental health. All I’ve seen are cutbacks.
  • EmmaBEmmaB Member Posts: 263 Pioneering
    As a disabled online counsellor I was very interested to read about your experience of therapists Errol and it looks like you've really got the discussion going.  

    I love the way you say you quite enjoy being autistic and that you manage your pain well - and that most likely is the thing that a non disabled therapist just won't get - that we can actually be OK about our disabilities and very often we have found a way to live [positively] with them!  

    I would never make the assumption that a counselling client who happens to be disabled was coming in relation to their disability because it could be a whole load of other things that was troubling them, just like non disabled people.  A disability may impact on that but it may not be the crux of the issue.

    The problem is that many counsellors are very non disabled, fairly well off [you need to be to fund the original, training, ongoing expenses e.g. supervision, ongoing training, insurance etc, plus the pay is generally poor/non existent!], more often caring women [which is fine but it just might mean they have a certain view about disability] - so it could be they really don't have much of a clue what it means to LIVE with a disability.

    I am concerned that people may end up on medication because they haven't found the right therapist, that is a worry... because medication can help but long term therapy could be useful...

    I've chosen to work online because access is also an issue for disabled people seeking therapy and online counselling could work better because you can then do it from your own home, there is no travel time or costs, or parking costs.

    I hope next time you are looking for a therapist you can find someone who has understanding and who you like - because at the end of the day the relationship between the counsellor and the client is the key predictor for change.

    Emma West

  • thgunthgun Member Posts: 10 Connected
    When my mental health spiralled out of control again in 2010, my GP advised me to self refer to a local charitable service to get help quicker (CBT) and hopefully get better quicker which I did. What he should have done was referrred me to the NHS team at the same time. I’m saying this because resources are limited so you aren’t always getting as much support as you need and it’s very much a sticking plaster on a broken leg. So two years down I’m stuck in the same place asking to be referred to the NHS team! This particular GP seems averse to refer on for most things to be fair. Then I get a minimum amount of therapy again CBT to get me a little bit better as long as I jump through their hoops and meet their goals. Now, 8 years on, I may need to go back down that route as I’ve gone as far as I can on my own. The best service I have received has been the ongoing support from the local charitable service even though I’m not getting therapy I just use other services they offer. I wish they had more resources. They are good at their jobs. I don’t blame the service providers I blame the funding providers. Just look at the CAB service! They used to go to DWP appeals etc with you now they don’t! GP s charging for letters to DWP for people on benefits because it’s taking up their time! And so it goes on. 

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  • thgunthgun Member Posts: 10 Connected
    I totally agree with you in every way. I'm 47 and have had some all sorts of problems. As a child I had behavioural problems, which led to other issues during my teens and secondary school being one of them. I developed epilepsy at the age of 13 so with that and my school issues they sent me to a special place and my parents were led to behlive they were doing their best for me. 

    Due to my epilepsy this made finding work very difficult as half the time they would not employ me. And I struggled with full time employment. By my mid to late 20's I started suffering with my Mental Health. Depression was one syptoms that had set in due to being overweight from the epilepsy medication. I ended up in hospital twice and both times they said I did not need to be there. I was allocated a Psychiatrist. I had support right up until I was diognosed in 2010 has having dysthymia a form of Depression, just at the time when the government cuts were coming into force. And I was hit bad. Other symptoms of my condition are mania, hearing voices, paranoia, anxiety suicidal tendances. Because I rapid cycle my syptoms never last more than 48-72 hours which makes it hard to get the help I need as it is costly. Although my episodes are short lived the condition is long term and they don't want to fund long term Mental Health support groups. That is why in 2017 they finaly stopped funding our drop in. And if you have had certain theropy sessions in the past you cant have them again.

    The so called support that is now in place is and was for me only short term. I had 3 sessions with a worker then it stopped. I'm still on there list if any group sessions become available I will be contacted. Since 2016  I got made redundant. I cant get pip without going through lengthy appeals and what I did get was only low mobility and this has now been stopped due to an early assessment,  and I'm appealing to get my award reinstated as it doesnt expire until September this year.

    The CAB are no longer allowed to attend hearings as you know and they are no longer allowed to make home visits either. 
  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    Lack of understanding and support is shocking in this day and age. Iv been waiting for 5 months on appointment with CPN and Psychology. 
    In the mean time we have to battle ever minute of every day to keep going.
    My GP is good but looks at me like a pathetic child when I’m trying to tell her how I feel.
    Cut backs, that’s the reason I’m told for delays but these delays most probably cost people there lives  :'(
  • smiler43smiler43 Member Posts: 33 Connected
    Hi criptacular

    While I am partially disabled i have recieved some therapy not related to my diagnosis of brain tumour I have brain damage due to ops and because of this the therapy had to go back to that because it caused some issues like I have bad short term memory so forgetful because of this I would sometimes forget what's been said to me .
    I have depression which is because the effects but also past issues unrelated to the brain tumour .  These sometimes get overlooked and all people can see is the effects  I have . There needs to be more support and research for brain  tumours as I feel like sometimes I've  been left to get on with it . I think there should be more help also for disabled persons more assesible places x


  • joanna319joanna319 Member Posts: 5 Connected
    I have severe M.E. that leaves me practically housebound and causes 'situational' depression, on top of biological suicidal depression that no meds can touch. I have had so many problems getting any support, with a frustratingly negative experience of Mental Health services, who discharged me during a crisis for 'non engagement' because I was physically unable to leave the house for appointments. The problem I have found is somewhat opposite to yours, in that having an 'invisible' illness and disability means it is not taken into account with regards to the usual mental health solutions of getting you to attend groups and support services. The focus of their involvement is around expanding activity and social contact, which would be great if it was something I could physically manage. I am so tired of trying to educate ignorant support workers about the very real physical restrictions and limitations I have, and the damage that can be done by 'trying harder'. It seems years of research into the very many physical reasons why our bodies dont work have yet to make an impact on those who are meant to be helping us. There is no resource for mental health support that does not involve making my physical condition worse, and as such, my disability prevents me from accessing any mental health support.
  • leeCalleeCal Member Posts: 2,228 Pioneering
    Why is mental health support so poor? Obviously it needs more funding but it also needs to pay money to people who represent true value for money, replace many of its workers with people who are both skilled in the field and not lazy. 

    Secondly it needs to look seriously at the way it treats sufferers, bearing in mind that the pharmaceutical companies have pushed the idea that poor mental health is the product of disease and that they’re particular drug ‘cures’ this that or the other...which they don’t. The psychiatrists need to stop using a conveyor belt to diagnose on an industrial scale to enable them to take yet another afternoon off, or worse still contribute inanely to yet another two hour meeting during which they decide the fate of innocent victims. The drugs intoxicate they do not cure and they give the patients problems which they never had! It is a fact that psychiatry doesn’t actually know for sure how most mental health issues actually are caused in the brain, so how can they prescribe accurately. The drugs cover up the underlying symptoms not cure them. Many side effects are very dangerous and psychiatrists don’t actually know how permanent they are! For example, antipsychotics have been found to reduce brain matter. That’s brain damage. Antipsychotics which work on dopamine receptors have been found to be unnaffective because the brain combats the reduction of dopamine by not only creating more dopamine receptors but also increasing the sensitivity of the existing ones, which of course leads our good old psychiatrist to increase the dose, or prescribe a more powerful version. Sometimes actually all someone needs is temporary sedation followed by a change in their socioeconomic situation or domestic experience. Unfortunately that’s too complex and too expensive for the NHS to do, it’s also not promoted by research which is funded by very rich pharmaceutical companies and the cronies who have one foot in the nhs and one in the companies.

    why is the mental health service so poor? Because it’s inept due to its staff and pathogenic in its treatment. If we discuss how it’s broken then perhaps we can begin to fix it.
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  • leeCalleeCal Member Posts: 2,228 Pioneering
    I’m very happy that you’re medication is being responsibly reduced and that you’re feeling better as a result, brilliant! 
    Withdrawal from drugs must be slow because the withdrawal symptoms can be awful, sometimes making you feel very unwell. If anyone wants to withdraw from medication they should try to do it with the help of their psychiatrist, which may be easier said than done. Please anyone reading my comments, don’t withdraw without help, even a little from your psychiatrist. Please be careful and please don’t think I’m advocating coming off meds without help and support. It can take up to two years before withdrawal symptoms subside for some people.
    take care everyone.
    Also if you’d like to know more you could try reading a simple book to read called “a straight talking guide to psychiatric drugs” by Joanna Moncrief, she’s a psychiatrist but she outlines the reasons why there are serious faults in the treatment,  there is a kindle version and no, I’m not related to the author and I don’t have shares in the publishers! I just think the more people know about the broken model of psychiatry the better, maybe things will change, actually I’m sure they will.
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  • EmmaBEmmaB Member Posts: 263 Pioneering
    I've yet to watch the second 'The Doctor Who Gave Up Drugs' but the first programme in this series was very good - where he showed that teaching mindfulness to children with ADHD was transformative to some.  

    In case you don't know this is the second series - the first focussed on adults and he managed to get a lady off painkillers who had been on them for decades, he drastically helped a lady with fibromyalgia via Tai Chi [I think that was the right one], and a woman with a history of depression through cold water swimming.  

    All the results were verging on miraculous and it's a shame that we currently operate a medical system that puts people on the scrap heap AND [perhaps more importantly] makes people believe that that is where they belong and that long term use of medication is the ONLY answer when for many it really might not be... 
  • GainaGaina Member Posts: 133 Pioneering
    edited May 2018
    Victoriad said:
    Hello....you’ve lost me here........what do you mean Agency should be offered, can you please explain what that is, as never heard of it until I read your post.

    The problem is there are no alternatives.....it’s either medication or therapy.......believe me I would have bitten their hands off for the opportunity of therapy.

    When you are given ECT or injected with an anti psychotic slow release medication.....trust me.....you don’t want to go down the medical route, as it affects your balance, your gait and your appearance......in my case an extra out of the Munsters.

    Be careful what you wish for.


    Agency means putting the person at the heart of treatment and therapy so they are listened to and respected and nothing happens without their approval. 😊
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  • GainaGaina Member Posts: 133 Pioneering
    Victoriad said:
    Had never heard of it and that explains my original medical treatment where I was not consulted.....just sectioned and the psychiatrist at the time, did whatever he wanted without my approval.

    current one, more accommodating it seems, which is great......so maybe Im getting agency......without knowing about it.....ignorance is bliss.

    Your current psychiatrist sounds much more enlightened, I'm glad you're having a better experience. It's so ironic that the most vulnerable people who need know exactly what Agency is are the very ones who don't.
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  • GainaGaina Member Posts: 133 Pioneering
    Victoriad said:
    Yes and even more strangely when consulting Advicacy services no mention of Agency made there either.

    I wonder if the concept of Agency exists in Scotland?


    I think the 'establishment' is still catching up with clients on concepts like Agency . It seems to be a grass-roots consesus that we know more about our own needs than so-called experts and rightly we're beginning to insist we are heard and respected.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    @Gaina I like the sound of that but we need more resources to make any system work
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • GainaGaina Member Posts: 133 Pioneering
    @Gaina I like the sound of that but we need more resources to make any system work

    Definitely. :) I think it's getting better but they need to involve more disabled people in decision making processes.
  • Belinda_501Belinda_501 Member Posts: 4 Listener

    Errol Kerr is a student, editor and blogger, focusing on everything from politics to gaming. Through his blog Criptacular and on Twitter, he tackles discussions on mental health, physical health, disability and neurodiversity whilst constantly making sure to keep an eye on his own.

    In the past three years I’ve been referred to multiple therapists for my mental health. I’ve walked away from all of them for the same reason: they can’t see past my disabilities.

    Whenever I’ve been to therapists, I aim to go in to talk about feelings of anxiety and depression, both of which are incredibly prevalent in my life. For disability context, I’m autistic and have hypermobility syndrome - the latter of which causes a significant amount of pain, the former causing noticeable social communication difficulties.

    The anecdote for my leaving therapy sessions is almost identical. I’ll book in an appointment to see my GP so I can discuss my mental health and ask about support. They refer me to a therapist before taking any “other actions”, even when I’ve indicated therapy has been unsuccessful before. After I’m booked in for therapy I make my way to the therapist to discuss my mental health.

    The moment I disclose my disability and condition, the discussion veers entirely from my mental health concerns and focuses solely on these other external conditions. I attempt to explain that the issue is to do with other factors in my life that I want to talk about, but the professional always comes back to ‘difficulties’ I must face due to these other experiences. At these therapy sessions, any and every issue with my mental health is connected in some way to these factors.

    I felt I was being told that my mental health issues were there because I was disabled. 

     

    Thing is, I quite enjoy being autistic and I manage my pain relatively well. The problems I face with my mental health have very little to do with these other experiences and I’ve stumped professionals more than once when I tell them that in reality, I’m managing these other experiences rather well.

    After one of these therapy walk-outs I had a discussion with a friend of mine who is also disabled. They informed me they’d had an almost opposite experience with their GP, whereby they had been told they “can’t” have certain mental health difficulties, often because they’re disabled and “already have it bad enough”.

    Sometimes it just feels like we can’t win - either we’re too physically disabled or neurologically different to be mentally ill, or if we are, it’s entirely because of that.

     This is an important topic to recognise as there’s a large number of people with physical disabilities or neurodivergent conditions who also have mental health difficulties. It’s common knowledge and well-documented, but it’s something I fear that people don’t know how to recognise, don’t know how to acknowledge and are woefully unequipped for. It seems that, to everyone I’ve tried to speak to, correlation equals causation one hundred percent of the time.

    It’s so important to recognise that support for disabled people with mental health difficulties is remarkably poor.


    We’ve been taught to think of these things as different experiences – as one thing that can cause another, rather than individual experiences that can indeed impact each other but aren’t intrinsically linked. It feels like the likely issue with chemical imbalances in my brain were ignored in lieu of talking about how I can’t walk without an aid, or struggle talking and making eye contact simultaneously.

    I’m planning on going back to my GP soon, as my mental health isn’t great at the moment. I plan to put these exact words in front of them, explain to them that whilst my body needs assistance, my mind needs some support that’s separate from that.

    Whether rooting our mental health into our disability or denying its existence due to it, this attitude makes us feel lesser, inferior, and only leads to some of the most vulnerable people in society being ostracised and pushed away from support.

    So, I want to start a discussion.

    I want to have a conversation with disabled people who have sought mental health support, to start talking about the difficulties we’ve faced. I want to open up the floor to people who have been denied adequate mental health support by people who can’t see past physical or neurological conditions, chronic illnesses. I want to talk to people who have been let down by those who, when asked about the mental, couldn’t see past the physical.

    Have you experienced similar issues? Have you had perfectly fine experiences seeking mental health support? Are you scared to seek out this support because of this issue? Let me know. We can’t make change by keeping silent.


  • Belinda_501Belinda_501 Member Posts: 4 Listener
    Oh gosh it's not going to get better anytime soon!!! And I have been made disabled due to the Hospital and surgeon in orthopaedics!!!! I am so giving up
  • Belinda_501Belinda_501 Member Posts: 4 Listener
    And no help with y mental health issues!! I have not left my house for nearly 7years socially and only to hospital with my daughter! Now the physical disabilities and chronic pain means that Physiotherapy and NHS Mental health simply blame each other and I still can't get help!!!! 
  • leeCalleeCal Member Posts: 2,228 Pioneering
    When I mention a physical ailment to my doctor it’s assumed that it’s due to my mental health and I’m referred to a psychiatrist. Amongst other things I have very very loud tinnitus and the medical people were suspicious that it was a mental health problem, when I saw the psychiatrist he increased my medication and though I complained about 5is he asked me to bear with him and think of it as an experiment! My tinnitus was worse if anything, why? Probably because one of the side effects of the medication is...tinnitus! 
    I understand how the doctors have a bias like this, sometimes they may be right which is why they persist with this way of thinking, equally sometimes they are very wrong but due to cognitive bias they continue to doubt a physical ailment, maybe even suggesting it’s psychosomatic. 
    Once you’ve been diagnosed with a mental condition it’s hard to shake off the stigma and biases from people, however these medics are the very ones who are advocating that society doesn’t stigmatise people with mental health conditions! There’s the irony! They are themselves biased! 
    Its hard to maintain your integrity under these circumstances  but you know you’re not alone, many of us are suffering from similar problems. We may not be there with you in person but we can at least write like this and say, be strong, hold on until things get better again. 
    Take care Belinda 501.
  • geegee1104geegee1104 Member Posts: 11 Listener
    My mental health issues with depression anxiety and panic attacks started years ago and I used to go to the doctor's which one appointment in every 6 weeks was no good to man nor beast and then sort my own other options out and got referred to open minds unfortunately open mines only deal with the here and now which is a part of my problem but it's stems back a long long time ago I've just been accessed through my doctor to go and see a psychologist but I really want to see a psychiatrist what is the difference between the two may I ask many thanks for a reply.
    Kim
  • leeCalleeCal Member Posts: 2,228 Pioneering
    Psychiatrists see things from an atomic level, they try to identify the underlying chemical or biological imbalance and then home in on the appropriate medication to treat it. Psychologists bear in mind chemical imbalance but do not prescribe drugs. A psychologist may well advocate a range of psychological approaches which in various ways alter the way you think about certain significant things in your life. This can be effective because of learned associations during a lifetime for one thing, for example cbt can help modify our habitual ways of thinking. But there are other methods such as psychoanalysis, which is long term, expensive and not available on the nhs. 

    The only advice I would give is to think carefully before agreeing to take medication but I’m sure a good psychiatrist will tell you this. Most medications have side effects and withdrawal symptoms which are worth knowing about in advance of taking them. It shouldn’t be viewed as a quick fix in my opinion and experience.

    These subjects are huge of course and I’m not an expert by any means. There are plenty of definitions and explanations of psychiatrist and psychologist online.
  • leeCalleeCal Member Posts: 2,228 Pioneering
    Incidentally as I’ve mentioned elsewhere, according Dr Joanna Moncrief, a psychiatrist, the drugs which psychiatrists prescribe mask the underlying problem rather than cure it. They can also give you inbalances which priorly you didn’t have. It’s worth reading her kindle book “a straight talking guide to psychiatric drugs” to give you some insight into such drugs, how they work or often how they still don’t know how they work or even if they do etc.
    knowledge is key.
  • geegee1104geegee1104 Member Posts: 11 Listener
    Leecal.
    Thankyou for your reply..
     I definatly agree with staying away from drugs to help.
  • EmmaBEmmaB Member Posts: 263 Pioneering
    From my perspective leeCal is spot on psychiatric drugs don't cure issues such as depression/anxiety, in most cases they just provide a sedative effect which can make people 'feel' better.  

    There is no known chemical imbalance which CAUSES mental health issues but it suits the psychiatric drug industry to continue the myth because they make rather a lot of money out of it!  

    The myth is also damaging because when people are told they HAVE depression or anxiety or whatever then they feel they can't do anything about it; what's more useful is to consider why people are feeling depressed, anxious or whatever e.g. loss, trauma, PTSD, poor relationships etc etc.  Unfortunately dishing out drugs is quicker than that route though.

    leeCal mentions the Straightforward Guides which I think are excellent - easy to read and informative, they include:  A Straight Talking Guide to Psychiatric Diagnosis, A Straight Talking Guide to Psychiatric Drugs and a Straight Talking Guide to The Causes of Mental Health Problems.  
  • leeCalleeCal Member Posts: 2,228 Pioneering
    For anyone not interested in reading the aforementioned book I should say that if my understanding is correct Dr Moncrief was of the opinion that medication does have an important role to play but especially if used temporarily to assuage the symptoms during crisis. This temporary relief can be exactly what is needed until some one is able to progress from a position of stability. She also has nothing to say about withdrawing from medication, and rightly so since it is best done on a case by case basis and with the co-operation and guidance of a psychiatrist familiar with the patient or case or both. 
    My advice is strictly non professional as I am not qualified in this field and my only knowledge of the subject is through personal experience of being a service user.
    take care.
  • ChrissiehChrissieh Member Posts: 8 Listener
    It saddens me to hear people are suffering with their mental health, as a disabled person and counsellor it is very hard to make connections in areas where a difference can be made. I was hoping Scopes work with me scheme would have provided opportunities!!

  • WaylayWaylay Member Posts: 890 Pioneering
    Chrissieh said:
    It saddens me to hear people are suffering with their mental health, as a disabled person and counsellor it is very hard to make connections in areas where a difference can be made I was hoping Scopes work with me scheme would have provided opportunities!!

    Hi @Chrissieh, I bet if you go to your local Pain Clinic, local disability support groups in your area, and craft groups (knitting, etc., particularly those that meet during the day), you'd find some takers! Before I found my current counsellor I would have jumped at your offer. 
  • WaylayWaylay Member Posts: 890 Pioneering
    1/2
    I've taken 14 psychiatric meds over the past ~24 years, my Dad was in pharma testing when I was growing up, and I'm a very bored researcher w/ way too much time on my hands. I know way too much about psych meds. (If only that were useful in contexts outside of spewing-all-your-med-knowledge-onto-the-web.)

    I agree that the whole "brain chemicals" thing is shifty. You can't measure them without drilling a hole in the skull, and nobody's going to approve a study involving that! You can measure them in the blood, of course, but how do the concentrations in the blood compare to concentrations in the brain? I don't think anyone knows. The gut is now being called "the second brain", and a lot of serotonin activity takes place there. From the way my tummy reacts to switching meds, anti-D's definitely affect the gut, but whether that has anything to do with mental illness.... *shrugs*

    Anti-D's definitely have side effects, but everybody responds to medication slightly differently, different meds can cause very different side effects in the same person, and changes in dose can magnify or reduce side effects a lot. If the side effects of med "X" at dose "d" are worse than the symptoms of your illness, then it's probably not worth taking it! I get a lot of side effects from my meds, but they're still better than not eating, sleeping, washing or speaking for days (and then there's that pesky suicide thing). :P 
    FYI: side effects tend to lessen during the first few weeks of taking a med (and occasionally they disappear!!), so it's worth sticking with them for a bit.

    Discontinuation syndromes are something that's not talked about enough, but you don't tend to run into them with the first-line anti-D's at starting doses. Prozac doesn't seem to have one at all. For other SSRI's and SNRI's, generally the shorter the half-life* of the med, the worse the discontinuation syndrome will be. DS isn't addiction (you don't get cravings for Duloxetine, and you're not going to sell your dog to get a few Venlafaxine capsules ;) ), however depending on the med, the dose you're on, and the way your body interacts with it, the DS can be anything from vaguely annoying for a week to absolute hell for months. I'm on the max dose of Venlafaxine, and if I take a dose ~12 hours late I can already feel it starting. I went 52 hours without it once (hospital screwed up) and I will NOT be doing that again in a hurry. But fear not! If you want to get off of a med and you get bad DS, you can reduce the dose of the med very slowly, over several weeks or months, and keep the DS at a reasonable level. Many GP's assume that 2 weeks is long enough, but it often isn't. 

    *(if you take a dose of a med then the half-life is the amount of time it takes for half the dose to be used up by your body)
  • ChrissiehChrissieh Member Posts: 8 Listener
    Thank you for comment. These groups are very limited in my area, i just hoping to for others ways to connect with people with disabilities.
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