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Hughes Syndrome APS Forum

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Need advice

dawnzy profile image
5 Replies

Hi everyone, I'm moving home, and I'm being assessed by local authorities as to my needs, not necessarily now but also my future, but I can't seem to get them to understand my condition any advice

Im Finding this really stressful, and don't want to make my self unwell.

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dawnzy profile image
dawnzy
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MaryF profile image
MaryFAdministrator

Do have a local disability adviser? Here is this to take a look at supportline.org.uk/problems... The help line may be able to help you. Sorry things are so tough.

Also you should give them our website, highlighting links from it relevant to you: ghic.world/

MaryF

dawnzy profile image
dawnzy in reply toMaryF

Thank you Mary I'll pass that on to them tomorrow

leakeadea profile image
leakeadea

I'm so sorry you're going thru this, I've had every type of assessment going during the last couple of years and I really do understand how stressful it is!

Do you mean that your being assessed by the local authority as in with social services for care assistance, or an occupational therapist to see what aids you may need, or do you mean for a disability benefit or PIP?

I will know what advice to give you if you can give me a little more info on what your facing. Claire ☺️

dawnzy profile image
dawnzy in reply toleakeadea

Hi Claire, it the local housing team, as my home is being demolished and they have a team of three to help those with health conditions or learning difficulties, so they only deal with the transmission period but I was struggling to make them understand, I have passed the link Mary F passed on to me also I loaned them my book by Kay Thackeray hopefully this can educate them to help me.

leakeadea profile image
leakeadea in reply todawnzy

Well they should be well educated about APS then by the time they assess you.

I know it's not exactly the same thing but I was assessed by social services and an Occupational Therapist and they were extremely helpful, even though they didn't really know anything about EDS or APS. I just explained what difficulties and issues each condition caused me and then they suggested aids that would help me.

Good luck 🤞 I'm sure all will be fine!

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