ME Sufferers falling through service cracks

A LOCAL lady whose illness prevents her from pursuing many things has called on greater support for people with hidden disabilities. The woman, who does not wish to be named, says having Myalgic encephalomyelitis – fibromyalgia (ME) affects many aspects of her life – even simple tasks like doing the housework or writing a letter.

“I suffer from a very complex illness,” she explains. “ME is a neurological disorder which is an inflammation of the brain and body. You never know, hour by hour, day by day the impact it will have.”

Symptoms of ME include chemical sensitivity, issues with memory and concentration, poor vision, fatigue and chronic pain, particularly in the muscles and joints. Inflammation of the nervous system also makes the skin’s surface super-sensitive.

“There’s a lot of symptoms that make up the syndrome and any one of those symptoms can interfere with fine mobility skills.”

One of the woman’s biggest problems is that, because of her condition, she struggles to read and write with clarity, nor does she have the internet connected at home. This makes it very difficult to communicate properly.

“I can’t trust myself to do it correctly,” she explained. “The brain fog makes it hard and fatigue comes in. And I can’t access help online.

“A lot of services offer support but it’s only on the internet. But there are a lot of people who can’t use the internet and have to rely on the phone.”

As such, she started a support group which now has 3058 members.

However, the Dubbo-based sufferer says there needs to be more support for people with chronic conditions, who often fall through the gap between illness and disability.

“Because it’s episodic, you can’t predict when you are going to be in need.” Now aged 60, the lady was diagnosed when she was 33.

“It took a long time to diagnose, to determine the cause of the presenting symptoms but in the end, it was a process of elimination.

Suffering for a long time, she knows that there are others like her in the community and would like to see more specialist care in regional areas like Dubbo.

“There are a lot of other people with complex circumstances. We need better doctors who are specifically trained in internal medicine to be able to look at you holistically.”

She also feels that there needs to be more support through disability services for people with conditions like hers.

“The main problem is that I’m trying to get better disability advocacy services for Dubbo and NSW. I would like Dubbo to have its own advocacy service.

“The disability advocacy services that are available for us to use is Disability Advocacy NSW. I find their policies and procedures to be very inadequate.”

“Newell Advocacy (based at Lightning Ridge) only comes down as far as Gilgandra.”

With the cessation of Family and Community Services’ Living Life My Way Program in preparation for the rollout of the National Disability Insurance Scheme (NDIS), she says there is now a significant service gap.

“A lot of people have been left without home services. We just fall through the cracks even though we have been lobbying for 30 years.

“There is not enough funding to help people like me that are episodic. The issue is that it’s not a service that you need every day. The public perception is that I can receive assistance but I’m not.”

She is hopeful that the NDIS will fill in the gaps of what exists in NSW.

“I’m optimistic but prepared for rejection. We’ll be left at the bottom of the barrel.”

The lady has contacted NSW Disability Services Minister Ray William and asked him to respond to her concerns.

“We need to do something that has the best impact on the public and policy makers, creating awareness to inform everyone from Local Government to State and Federal. There’s a lot of things that need to change for some types of illnesses. We are like square pegs in a round hole.

“We need funding to create a local advocacy service and workforce training to deal with illness.”

The disability advocacy services that are available for us to use is Disability Advocacy NSW. I find their policies and procedures to be very inadequate