Advocacy support

AmyAdvocate

New member
I currently work for an advocacy charity providing support to anyone requiring help with disability benefits. I am noticing that a lot of my neurodiverse clients are struggling at medical appointments and being understood and listened too. I know myself that this can be very difficult to make GP / consults understand what I mean. I was wondering if there was a need for more support in these situations. Like someone to attend appointments with people to make sure they are listened to and given the same access to support as neurotypical people. What do you all think? Would this help you or is there a different area which could help you more? I know NDSA already does a lot of work with employment and on the forums supporting and helping each other but I mean more in person support at appointments or meetings.
 
Hi @AmyAdvocate

From my experience, there’s a huge gap in service provision when it comes to in person advocacy services for neurodiverse adults. I think that this is a fantastic idea that would improve access to healthcare and health outcomes for neurodiverse adults. Could you give more details about the advocacy charity that you work for, where it’s based and any links to information about the services that you provide please? Thank you.
 
I currently work for an advocacy charity providing support to anyone requiring help with disability benefits. I am noticing that a lot of my neurodiverse clients are struggling at medical appointments and being understood and listened too. I know myself that this can be very difficult to make GP / consults understand what I mean. I was wondering if there was a need for more support in these situations. Like someone to attend appointments with people to make sure they are listened to and given the same access to support as neurotypical people. What do you all think? Would this help you or is there a different area which could help you more? I know NDSA already does a lot of work with employment and on the forums supporting and helping each other but I mean more in person support at appointments or meetings.
Yes this would help, some sort of eligibility criteria. Not sure what help we can access or not. After a lot of rejection that's what you come to expect.
 
I currently work for an advocacy charity providing support to anyone requiring help with disability benefits. I am noticing that a lot of my neurodiverse clients are struggling at medical appointments and being understood and listened too. I know myself that this can be very difficult to make GP / consults understand what I mean. I was wondering if there was a need for more support in these situations. Like someone to attend appointments with people to make sure they are listened to and given the same access to support as neurotypical people. What do you all think? Would this help you or is there a different area which could help you more? I know NDSA already does a lot of work with employment and on the forums supporting and helping each other but I mean more in person support at appointments or meetings.
Yes this would help, some sort of eligibility criteria. Not sure what help we can access or not. After a lot of rejection that's what you come to expect.
 
Let's taxonomise. We can firstly classify by functionality. Low-functionality is fairly well understood, as it's been the subject of almost all the study over the last hundred years. However, the limits to that are the scope of the individual subject, which are almost by definition somewhat limited.
Almost everyone capable of commenting and acting in self-advocacy is equally by definition high-functioning. The classification's important, as it allows us to dispense with the Does He Take Sugar imbecility nonsense. We have carers as reference mentors, a double-check on our own subjectivity.
This then leads to masking, trying to pass as normal, although it's not always possible, as it's essentially false, and so bound to come undone. There's a secondary consequence to the ND, called Transfer in the acting profession (I come from a school with a considerable reputation in the sector, as it was created by Shakespeare's impresario and founded the NYT movement: my Stage Manager competence is recognised by London's Southbank), when we allow the more attractive traits in the mask to become our own: the classic example is Sir Anthony Hopkins' relationship with Martha Stewart, broken because she kept seeing traits of Hannibal Lector in him. I've been silent because my own life turned out to be a complete and utter mask, as I'd been denied the knowledge of my true genius in childhood. It's a fallacy of psychiatry, hoping the subject can keep some kind of social life, and the result, the increasing anger commented on in these pages, stems from the reintegration of two personae into one, meaning the false parts amounting to one had to die. That caused grief, and the first stage of grief is anger: it was justified by the ostracism I, like almost all NDs, suffered from childhood. Sir Anthony, in passing, was diagnosed with Aspergers in later life.
This demonstrates the prejudice shown in the profession, the NHS sets a timer to interviews which presumes NT normalcy. I think we actually need specialist GPs with experience in NeuroDiversity. However, that's a unicorn, they don't exist, because nobody's studied high-functionality as a whole. I'm gifted and probably a genius, which contrary to the Profession's definition are two different, but possibly related things. They term giftedness as a childhood trait they can hopefully quash. My giftedness is biblical, I'm a seer medium, termed hyperperception by the shrinks, and also have Master-level Reiki, a combination of the inherent human healer ability, boosted by the numinous and a diplomat's long-distance empathy (a subset of ESP). It's all part of transception, a map of Maslow's transpersonal into the subclassification of perception, this being of the intangible, running from the empathic through 3rd-sector medicine into the numinous.
You'll notice I'm not waiting for Godot, we need to ask and recruit. Our rights are so grotesquely abused we really need an active campaign to speak for the ND community. I've recently discussed this with Margot, as we should be helping more than just ASD, and I think it'll need a site redesign to cope with the open-ended nature of "everything not neurotypical". Perhaps that's the first stage, building medical knowledge.
 
Hi all...

We're there any advances on finding or achieving advocacy support. I am currently struggling to find an advocate to assist me with ensuring I get reasonable adjustments and a suitable GP practice to register with.

I believe on account of my reasonable IQ I am not classed as having a learning disability therefore I am only entitled to community/general advocacy support.

My local council are being particularly unhelpful. The usual run around partly due to their bankruptcy. None of the national advocacy services seem to provide advocacy in my area. Which is Thurrock Essex if that helps.


Thanks D
 
Hi Margot.
I am looking to receive reasonable adjustments at a new GP practice. The last practice removed me when I complained about not receiving reasonable adjustments amongst other issues.

So I'm anxious to ensure that the next GP practice adheres to the law.

I'll attach the Equality Advisory Service template letter to your reply on the other thread...

I have not heard of SEAP....I'll look them up, thank you.

D
 
So....have tried the SEAP website and completed a form to contact them. This was the reply.

Dear Deanna,

Thank you for your enquiry, unfortunately this is not something the Legal Education Foundation can help you with. Your local law centre or Citizen's Advice Bureau may be able to help.

Kind regards
The Legal Education Foundation

Didn't know I had contacted the Legal Education Foundation but I assume that is what the online form did.

I am still being signposted back and forth by all the usual suspects POwHER, VoiceAbility, Patients Association and my local council.

If anyone has managed to receive advocacy support could they indicate how they located an advocate and what their experience was of that advocacy support.

Thank you. D