Sensory difficulties and mental health

[Louise Pembroke]

I'm meeting up with a conference organising/publishing company this week that I've organised an event for and I've spoken at some of their conferences.
I'd like to suggest they organise a conference with me on mental health and sensory 'impairment' [I'd prefer a different word!].
It always amazes me how mental health services fail to grasp how sensory difficulties impact on mental health. Also how they are unable to respond appropriately.
I've seen one of my friends who is deaf shouted at by fully qualified mental health nurses, his distress pathologised despite him speaking about his distress at his hearing loss!
Not a single mental health professional spoke to me about my sight when it was at it's worst as a youngster and I was in hospital. Only the contact lens dept grasped how traumatised I was.
I could go on..so many examples from people I have known with sight and hearing difficulties.
I would like to approach this from many different angles .
The reason I am posting this is to ask for anyone here who might be interested in speaking to let me know by PM [preferably with your email address]. If you've never spoken before, I'd be happy to help you.
If this event is organised, I'd also love to see KC group literature on a stall, preferably with a member on hand to chat to delegates. Again, any volunteers, let me know.

[GarethB]

Louise,

My only experience of mental health problems which probably pale into insignificance with your target audience is the stress related depression it caused when KC part 2 came round.

Is this the sort of thing you mean?

[Sweet]

It is the whole depression, worry and stress that comes with being on long term sick and not being able to see to do anything. It is the constant worry about work and how you are going to survive on the basic salary which didn't cover my rent. The worry about not having a job to go back to and being unable to afford to live. Luckily my twin sister took me in before my pay hit the lowest point.

It is the sheer boredom and tiredness which comes with doing nothing! It is all the injuries you can get when you can't see. I got burned so many times trying to cook that i gave up and my sister put food ready for me before she went to work. It is sheer panic when you can't get about, the lack of meeting people because you get to a point where you are so dam scared to leave the house.

The worst part is a total lack of independance, to do anything you need help and that is degrading to say the least. Being on sick leave in itself is so hard as we aren't sick, we just can't see to work!! Being well but blind is absolutely devastating.

Was that what you are talking about??? LOL! You know where i am history wise and i would be more than happy to help you.

Sweet X x X

[Anne Klepacz]

Louise - I'm definitely willing to do anything I can to help. Although I'd had periods of depression before, I really hit rock bottom when my sight was at its worst. And it was my realisation when I got my vision (and my life!) back that I wouldn't have got quite so desparate if only I'd been able to talk to other people who understood the problems, that led to the start of the KC group (long before the days of the internet and this wonderful forum). So it's a subject dear to my heart and I'll happily come along with KC literature, speak, and do anything else that would be helpful.

[Andrew MacLean]

I'd be glad to help in any way. I do not have direct personal experience of mental health problems, but I do have experience of the way sensory impairment impacts on my life as someone who is both visually and hearing imparied (I wear hearing aids when I remember to put them in).

I'll send you my eMail address by PM.

Andrew

[Pat A]

Louise
Happy to help in any way if I can. Got current and first hand experiences of precisely the type of situations Sweet mentions.
Will PM you separately.

Pat

[Louise Pembroke]

Thankyou everyone who has replied here and by PM, you all have relevant experience, these are the kinds of issues I am referring to. You don't have to have a diagnosis or contact with services to be depressed and struggle.

Equally, some of you have had contact with services and been diagnosed which offers another set of experiences too.

As some of you will remember, I've experienced considerable discrimination with my first eye consultant [NOT at Moorfields, different part of the country, and he's now retired].
He didn't want to operate on me because of my mental health, whilst at the same time no mental health professional ever talked with me about how my deteroriating sight was affecting me!
A GP even assumed my Hydrops was self-inflicted, but it was an ophthalmic nurse who could see that my actual self-injury was even more dangerous with the visual acuity I had so it was down to her efforts I had my first transplant. Mental health services just pathologise distress and miss the bleeding obvious like sensory impairment, poor housing, poverty etc.

If I can get backing for this conference it would target mental health workers yes, and it would focus on impact of sensory impairment on mental health/supporting people with sensory difficulties.
It could also attract ophthalmic nurse counsellors and other workers within ophthalmology too.

I can see potential speakers here, so possible keynotes, perhaps a workshop with a few people speaking then giving info about the KC Group, lots of ideas!

If I can this funded it will happen. I'm meeting potential funders tommorow

[Lynn White]

Louise,

You know, perhaps you could also stress that mental health professionals actually ask for an assessment by an optometrist. Optoms contributions are often completely overlooked.

I always remember a case several years ago whereby a young girl was on extensive psychiatric medications including medications supposedly to relieve side effects of the cocktail she was taking. Unfortunately, these had their own effect of blurring her vision. However, taking this medication coincided with the girl drinking a pint of lager (she hardly ever drank normally) and she became fixated that she had blinded herself through drinking and attempted suicide several times. Her mental health professionals totally ignored this as an unreasonable fantasy...

However, as an optom I was able to temporarily reverse the effects of the drug with an eye drop that stopped her focussing mechanism for a few hours and her vision returned to normal during that time. She could then see her vision was not irreversibly damaged. After many letters back and forth to the mental health care professionals, we got her medication altered and she was then much improved in her mental state.

Optoms can give valubale info as to how well or not a patient can see and how they are likely to cope in various situations, This applies across the board for all eye conditions.

I don't know if you are wanting an optom to contribute - but I would be happy to help!

Lynn

[Louise Pembroke]

Lynn, that's an excellent example which is so good I'm gonna print it off, and yes I think an optoms contribution would fab!

Yes there are drugs to counteract the effects of antipsychotic drugs, though they are not particularly effective. Some antipsychotic drugs cause blurring and more worryingly, some cause corneal opacities which is not good for us. Lastly on this issue, the atypical antipsychotic drugs can cause diabetes which in turn increases the risk of glaucoma.
I so wish mental health services had listened to my lens nurse when I was young. In my experience most ophthalmic workers have a better understanding of vulnerability and cause-effect than mental health workers as well as understanding the specifics of the eye condition.
You know if eye patients who use mental health services stated that they didn't want to take drug X because of it's effects on their eyes they would be deemed to be "non-compliant/treatment resistant/or lacking insight". A letter from an optom would indeed help.

[GarethB]

Louise,

looks like you need two speakers, the patient point of view and the proffession tha deals with the sensory impairment.