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

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Waylay

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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nanmac

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.

EmmaB

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

thgun

debbiedo49 said:

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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thgun

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. 

susan48

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 

smiler43

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

joanna319

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.

leeCal

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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leeCal

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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EmmaB

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... 

Gaina

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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Gaina

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.