POST CODE LOTTERY - NHS

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POST CODE LOTTERY - NHS

Postby sjc » Tue Apr 12, 2011 7:10 pm

:grouphug: :swear1:

]Hi there folks - Hope you are all alright today - Sorry that I have not been on here for ages, been busy.....

As I have fibromyalgia, mild autism, anxiety and depression......I have just been referred to a community physio and OT, who deals with my fibromyalgia - both specialists are lovely.....and they even are understanding about my entire health problems, even though they only deal with those with physical problems, like fibromaylgia.

But the mental health service team that I am unable are so ignorant, it is unbelievale (Sorry for the spelling)

I cannot believe how one area of the nhs is brilliant an very supportive, then other areas are reallly poor.

Has anybody else received good or bad services or support from the NHS? Why? What did you do about it? Love to hear your experience on the NHS.

Dont get me wrong, I think the NHS is a fantastic but there are certain services or even places that offer not has good support. Mental health seems to be one of them, but I find pain management to be alrightey.

Take care folks.


:crazy:
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Re: POST CODE LOTTERY - NHS

Postby mellabella » Wed Apr 13, 2011 8:09 am

Hi SJC,

I fully understand where tour coming from with this. My son has both mental health issues and physical issues. The mental health team here are absolute nightmares whilst physical health are great. The problem seems to be that they never get together to discus how one set of problems impact on another and vice versa. the mental health people are particularly bad at understanding this concept - makes me wonder what exactly they learn't whilst gaining their qualifications.

During times when my son would be particularly bad with mental health issues as the physical ones had impacted on the stress depression and anxiety. One of his physical problems is that he has a particularly unfortunate sleep cycle which he has had since the day he was born. He cannot go to sleep before about 5 in the morning and then he has to have 8 or more hours often up to 12 but ive known him to have 24 hours solid sleep.. Ive also known him to say up for 48 hours to try and cure himself which he tries from time to time but nothing works.. this anti social sleep cycle contributed greatly to his eventual breakdown and hospitalisation as he was unable to function not only in a work environment but also in normal everyday social situations .. During the 2 years he spent in 24/7 supported accommodation, the mental health team put into place various care programmes which involved social rehabilitation.. this meant he'd have some support worker or another waking him up too go out to " play" in effect.. the trouble was that to him this was like waking someone up at 3 am in the morning to go out and do shopping or to the cinema or something.. he of course used to get very upset and angry about it and they gave him the label of being ' un- cooperative'.. No amount of explaining to them by him me or anyone else could get through to them that by doing this they were only making his mental health problems worse... he's have been really pleased if someone really had come along at 3 in the morning to go out to play as he spends long boring nights with no social contact. but of course the mental health people only operate between the hours of 9 to 5 - if you become mentaly ill out of hours, you've had it.!( by the way the sleep thing he got is it's a circadian rhythm problem ) anyhow.. he did eventually manage to get round some of this problem by writing a note and sticking it on his door saying.. gone to bed with MIGRAINE please do not disturb... It seemed the mental health people could just about understand that but couldn't understand a real mental health issue.. i really feel for you, i wouldn't have believed mental health was so bad if i hadn't been through the stress of it with him for the last 5 years... interestingly, 5 years ago is when my fibro became apparent.

I live in south Wales and i think the mental health care is particularly bad here but i think its extreamly bad everywhere and now the government are cutting even more funding and services for it..
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Re: POST CODE LOTTERY - NHS

Postby sjc » Wed Apr 13, 2011 11:10 am

Hi there, thanks for your comment.

I totally can relate to your son's situation....I have ok support from people dealing with me fibromyalgia...so far good. :fingerscrossed: They are very supportive and no question my ilnness....they listen to me....

Mental health staff are very cold and patronizing....,for example, I had an occuaptional therapist from mental health services in derbyshire - after she left, I broke down in tears....she kept bringing up the past about some of the previous treatments that did not work .....Once I told her I have aspergers syndrome/anxiety, then she kept saying to me, "well you can communicate very well and you don't appear to me nervous" I get very annoyed with mental health as they expect every of their patient to be sitting their dribbling and looking stupid.....so annoying when mental health services supposed to be understanding, yet they are not....

I agree - both mental health and physical teams do not understand each other - my previous mental health nurse said to me one day, "well, fibromyalgia is not that bad, is it" I was quite upset by this comment, as mental health services should not comment on fibro..... :evil:

The pain management in Derbyshire seem alrightey, but derbyshire mental health team are crap, if I being honest, especially when dealing with asperger syndrome and related problems.....But I know that in certain areas of the country, the mental health service is ok.....I know nhs system in wales is abit dodgy, as my family come from their, and they said it was abit iffy in their days of living their.....

Anyway, take care and hope you and your family are ok :grouphug:
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Re: POST CODE LOTTERY - NHS

Postby Claire Spong » Wed Apr 13, 2011 1:32 pm

If you are in Derbyshire I can thoroughly recommend a course called 'Living with long term conditions'. It is part of Derbyshire health promotion service. It is a 6 week course of a couple of hours a week and aims to give you ways of coping with the problems and emotions associated with long term conditions a bit like CBT. But the biggest benefit I found was sitting in a room with other people with long term conditions, some with fibro too, and being able to speak openly and discuss the problems. The course is also run by people who suffer with long term conditions so unlike counselling and CBT you know that they understand and have gone through it all too. If you fancy it contact Julie.lomas@derbyshirecountypct.nhs.uk or pm me for a phone number or more details.

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Read my blog about how I'm coping with finding out I have Fibro on: http://fibronewbie.blogspot.com/
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Re: POST CODE LOTTERY - NHS

Postby Ldyalb » Wed Apr 13, 2011 9:09 pm

"well you can communicate very well and you don't appear to me nervous"

I've had that before! My official diagnosis is Dyspraxia but my neuro psychologist said I was borderline Aspergers as well. I know I have Aspergers but my main problems are very much dyspraxia and sensory processing disorder based, the social problems are half and half, I seem to be communicating well but I find social situations bizarre and often get mistaken for being rude, although I just don't think to do things/understand why things are done. I've learned to cope fairly well socially (the neurology team I saw were impressed) but although I'm getting better at knowing what to do in some situations I just really don't know why. People are strange. The reason the neuro pyschologist didn't diagnose Aspergers is because I had it so mild she felt any social issues could be explained by the Dyspraxia and I think she was concerned that the diagnosis wouldn't help as arguably you could say my social issues are the the extreme dyspraxic end. I wish she had diagnosed me as I'm trying to get the job centre to refer me to Remploy and the more disabilities the better apparently.

People do look at me funny 'oh but you're looking me in the eyes' - well yes but I hate it, I try to make as little eye contact as necessary because I find it so so hard, I avoid opticians like the plague as I hate people examining my eyes. 'You're so confident' (no, I'm faking it, trust me). I do think people expect people with ASDs to be sat in a corner, rocking back and forth and banging their head against a wall which angers me! Someone I used to work with was convinced my diagnosis of Dyspraxia must be wrong because 'you can clearly read' - well yes, dyspraxia is not dyslexia and 'can't read' is a misconception of what Dyslexia is anyway... sometimes I think people should be banned from discussing things they know nothing of :wink:
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: POST CODE LOTTERY - NHS

Postby sjc » Wed Apr 13, 2011 9:23 pm

:wave: HI everyone - hope all is okey..

I will certainly look that programme up claire...thanks for the advice.

Ldyalb, I completely understand where you coming from - yes, people are very ignorant on disabilties...especially hidden disabilties....I know alittle about dyspraxia, as I have slight issues with writting/reading/coordination problems from my learning difficulties......I know what you mean, people think because one can write or speak, that one cannot have a learning difficulty......but we know that is completely false......people can still be very clever, literate and come accross as normal despite having a learning problem...sadly too many people are still ignorant on hidden disorders......

I find some areas of the nhs the worst - some areas are fantastic and very open minded....I know that in certain parts in nottinghamshire, they are great when dealing with pain management and learning difficulties...Derbyshire is not to bad with pain management issues....But Derbyshire sadly fails big time when it comes to adults with mild learning difficulties....

The things I get told from the NHS, especially on my autism, is being disguing.....I know what you mean when you say people presume about certain conditions....People expect me to sit their and rock forwards and backwards and not talk....I try to act normal as you do, but people think you then are fake and it really frustrating......

Thanks for all of your comments again. I gonna try and rest now as the back hurts now. LOL.

Nitey, nite everyone. :sick:
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