New on here - in need of help in Erewash (aspergers)

[wheels72]

Hi everyone,

 

Am glad to have found the forum as i having a frustrating experience trying to access help and support for my brother, who is 39 years old and diagnosed two years ago (but we've only just found out).

 

I am keen to connect with other people living in Erewash and Derbyshire, to compare notes on the brick walls that we keep hitting.

 

Thanks!

 

Leish

[rufusrufus]

Hi, welcome to the forum. I'm in Liverpool so can't give any local advice, but what sort of problems are you having? If we know a little more of what you're experiencing, hopefully we can help

[wheels72]

Hiya,

 

My brother has struggled with poor mental health for almost his entire adult life. During his deep depressions and severe bouts of anxiety he has historically been captured by the derby mental health crisis teams. During every episode I have insisted that my brother needed to assessed to see if he was on the autistic spectrum and required long term support to function in life.

 

We have had a terrible time with psychiatrists and CPNs that would never listen to my pleas for a proper assessment and that their suggestions for a diagnosis e.g. Personality disorder did not account for his childhood difficulties. In the past we have been told by psychistrists that he is just selfish, that it was our fault as his family because we've let him get away with not behaving properly. You name it, it's been said to us. And it was only during my brother's last really bad episode in 2009 that a clinical psychologist listened to me and referred by brother to the Sheffield diagnostic unit, where he was diagnosed with aspergers. Unfortunately, my brother did not share the diagnosis with us (as he was trying to be independent and thought that he should be able to cope alone) did not really take it on board and also did not relate his mental health problems to the aspergers. The recommendations that they made, reiterated with specific recommendations by the clinical psychologist were ignored by the GP and so unfortunately no intervention nor support was put in place for my brother. Consequently my brother has yet again suffered catastrophic social failure and is now in a terrible state of depression and anxiety - triggered by failures at his current workplace. Furthermore, he has shared with. Me that he is being abused at work by the management (who are not aware of his diagnosis).

 

Sorry to go on, but trying to give context!

 

Anyway, I found out last week that he was indeed diagnosed and am now trying to find the support that he needs. My brother is open to help and support from us only when he is in these periods of anxiety and depression, and as soon as he starts to come out of them the walls go up and it's difficult to find out any information from him. So, I'm in touch with gps, social services, mental health teams, commissioning teams, NAS, advocacy services, and services outside of his postcode that offer post diagnostic support from multidisciplinary teams. But, for every step that I take forwards, there are ten going backwards. Basically, the pct commissioner today told me that there are no Post diagnostic services in Derbyshire for adults diagnosed with aspergers and that he can't advise me about what services to look for because they don't exist. When I said that he was charged by the autism act to develop them, he said he was trying to develop services in derbyshire. Ok, But when asked about interim arrangements whilst they're busy developing services, he said that there wasn't an interim plan either and didn't know what I should do.

 

So it seems that the nhs don't have anything in Derbyshire for my brother, leaving just social services then? What a joke. I have insisted that my brother is entitled to a needs assessment for his long term needs as per autism act and national strategy but they just keep focussing on his acute depression and anxiety problems (all over the phone with me, they havent actually put anything in place for that need yet) and keep trying to push me away from discussing how I get a personal budget and/or direct payments to pay for support services that are available through a charity based in Derbyshire that can provide 1:1 key working, really good advocacy and support for the workplace and seem to have a really positive approach to aspergers and autism and are patio ate about focussing on people can do as opposed to what they can't do.

 

I just don't know how to put my foot down with social services though. What do I have to say to unlock access to a proper assessment of his needs.

 

I am so so sorry to ramble on.

 

 

[rufusrufus]

Firstly, don't apologise for rambling on I really feel for you. I also suffer with despression and anxiety and have had crisis team intervention several times. Personality disorders, bipolar etc were considered, and Asperger's wasn't even thought of until I suggested it (although a family friend always knew, apparantly!). I think it's really amazing that you're working so hard to try to get your brother this support. Wow. Trying to access support is like wading through a quagmire, blindfolded with your hands tied behind your back. It's a total nightmare. It does sound like your job will be harder though, if your brother only feels he can accept help when he's really struggling. It can be quite harrowing to realise that you're not the fully functioning person you try so hard to be, so I feel for both him and you.

So, what advice can I give? Knowledge is power, and you sound like you're pretty well informed, it sounds like you need someone to help kick butt! Do you have a local Citizen's Advice Bureau? And have you looked at the Benefits and Work website? That's just off the top of my head, but there might be some advocacy advice on there. I have found that with GP's, you have to be VERY explicit and challenge them in order to get anywhere. For example, I have a history of eating disorders and could feel myself slipping back into old habits, so went to GP asking for referral to Eating Disorders service. The (junior) doctor said "I think you are just conscious of what you're eating, that's healthy". In the end I had to say "are you telling me that you are refusing to refer me for this help?". She backtracked and said she'd speak to a senior dr, and I was referred the next day.

As far as no services being available, although no official services are available, you might find local support groups that the powers that be aren't aware of. Do you think your brother could / would access them though? Have you / he applied for DLA?

Sorry, my brain's a bit fuzzy right now, I don't know how helpful this post is, sorry! If I think of anything more coherent to say I'll come back later, though hopefully someone else will have some advice for you soon. Take care

[darkshine]

My brother is open to help and support from us only when he is in these periods of anxiety and depression, and as soon as he starts to come out of them the walls go up and it's difficult to find out any information from him.

 

I have been like that in the past and still have that tendency, as has my brother who has similar issues to me (albeit more severe).

 

Even if the help is there, your brother has to want to engage with things, and more so when he comes out of the depressions as these times are vital for making headway because mental functioning is better - when in a deep depression or experiencing anxiety it isn't always easy to think clearly - also if things are put in place for when things are less bad, then the depression and anxiety can be understood and coping strategies can be put in place.

 

I always think that if the cause of the depression is not addressed then it won't get better - a person needs to understand what is making them depressed or anxious in order to begin to address, deal, and cope with that.

[trekster]

I always think that if the cause of the depression is not addressed then it won't get better - a person needs to understand what is making them depressed or anxious in order to begin to address, deal, and cope with that.

 

I totally agree with what Darkshine has been saying. Apologies for sending you a PM wheels72 containing organisations that you have possibly already contacted. Doh!

 

Would your brother read books that avoided using the term 'autism'? 1 book in particular is called 'Anxiety and Depression workbook for dummies', excuse the 2nd part of the title, it means 'in plain english'. I found the book so useful I accidentally bought 2 copies (the 2nd now has a new home).

 

There is a magazine called 'Asperger United' "request a copy by calling +44 (0)20 7903 3595 or emailing asp.utd@nas.org.uk "

the magazine is aimed at asperger/autistic folk.

 

I think part of the problem is finding somewhere we can be accepted for who we are (from an autistics POV).

Have you joined a parents and carers group? How about asking your MP for help?

 

Another idea would be PALS http://www.pals.nhs.uk/cmsContentView.aspx?ItemID=932

 

"In particular, PALS will:

 

 

• Provide you with information about the NHS and help you with any other health-related enquiry
  

• Help resolve concerns or problems when you are using the NHS
  

• Provide information about the NHS complaints procedure and how to get independent help if you decide you may want to make a complaint
  

• Provide you with information and help introduce you to agencies and support groups outside the NHS
  

• Inform you about how you can get more involved in your own healthcare and the NHS locally
  

• Improve the NHS by listening to your concerns, suggestions and experiences and ensuring that people who design and manage services are aware of the issues you raise
  

• Provide an early warning system for NHS Trusts and monitoring bodies by identifying problems or gaps in services and reporting them. "
  

Wish I could offer more to help but many folk on here appear to be in very similar boats with regards to autism services. In my area I cannot get any mental health, i.e. psych help 'because we dont treat ASDs' (their words and I have paperwork to prove it).

 

 

 

 

 

 

 

 

Would a sibling support group help your family as you can have an assessment as a carer which is how our family got me some limited help that I needed.