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Ehlers-Danlos Support UK
2,097 members661 posts

Talking to others with similar problems does nothing to improve services and access.

After several miserable years of harassment by Social Services to "go out in the community" etc., and no understanding at all from GP surgery or social worker about my ME, extreme pain and exhaustion and orthostatic intolerance, being hounded to be nsidt that I get an electric wheelchair I need with tilt in space function, being told that I am not eligible for one, I was told reluctantly by wheelchair service several weeks ago that I could qualify for one but there is a long waiting list. Had this information been given me a few years ago, I might have one by now. My GP will not make home visits, I cannot go for the mammogram I have been needing for a year, and none of the many carers who come to visit me daily have the skill or strength to push me in my heavy tilt in space wheelchair on uneven pavements, or even tilt and adjust it for me. I am isolated and unable to go to the local park or even down the footpath. My consultant's recommendations are ignored or challenged by GPs and social workers, my care always at risk of being cut back despite my consultant writing that doing so will severely worsen my condition. I am unable to challenge the lies written in my PIP assessment decision and received reconsideration decision because I cannot get to the local CAB and no relevant charity either understands my conditions or makes home visits or accompanies people to hearings.

Going online I find that others in my situation have the same impossible barriers or worse. And the government just hangs on with their heartless message that basically tells us we will get nothing if we can't go to work. There is no cure for my conditions, but they are not going to kill me. I have severe orthostatic intolerance and extreme fluctuations of pain,dysautonomia symptoms and hypersensitivities of various kinds. Life is a mad, roller coaster ride for one person with anxiety about what kinds me of societal judgement will further Rob me if my human rights and when. I cry for people who have NO care package, become homeless, lose their benefits, or have worse carers than mine or worse medical conditions. I cry for those being abused and neglected by family and carers. Does that make me lucky to have some benefits, some carer visits, some medications, a stable and liveable flat, etc? We are made to feel that society begrudges us any assistance at all, and that Includes access to NHS services, testing and proper treatments, time with consultants to discuss medications and needs, and bio-medical research that would hasten the process of developing systems and treatments which could bring relief or even cures.

How is talking about this amongst ourselves going to make that happen. We are too I'll to shout and demonstrate in the numbers and with the frequency needed to get the attention of uncaring lawmakers and ill-informed or uninterested doctors. We have no access to most of what we need.

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Hi, this also will not help, BUT, I hear you! If only someone who could make a difference would hear us too!

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Yes, I did not mean to imply that talking and supporting and being supported by others with similar challenges is not good or can't help. But I have been in various support networks and forums online for years. Our situation with professionals, human rights and services being denied, and stigma has changed very very little, and in very few places in very few ways. It seems the more serious and critical our needs, the less understanding and fewer options are offered. I and many who have been ill for a decade or more... In my case, since 2002, have pretty much resigned ourselves to this extremely depleted and demoralising situation. I am old enough and sick enough and for long enough that even moderate improvement is unlikely to happen soon enough for me.

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