ME Suf­fer­ers fall­ing through ser­vice cracks

Dubbo Photo News - - Weekender - By NATALIE HOLMES

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

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