Hi sea angler
Yes the support group is the only place you can go its the only thing they can do legally and safely well done fella.....................Paul
well done sea angler that is brilliant news , it has made me wonder about me being in spport group my decision letter did not state any time scales i may have to phone dwp for clarification
Thank's Storm,Gus, and Shelly
Yes it's brilliant news, it far surpassed what i expected, i shall be carefully reading what it say's when i have it in writing.
And yes Shelly well worth you finding out time scales for your own piece of mind.
Well i phoned dwp and they said it is usually open ended there is no timescales as such but a bit like pip you have a review every so often my review is due in 2017 , so not sure why they are reviewing you after 6 months sea angler
I'm not sure why 6 months either Shelly.
My neuro might of given a opinion if they contacted him, perhaps he might of said he expects me too feel slightly better or more incontrol with medication within 6 months??. i am still young at 44 in their eyes i spose.
the bloke from the dwp didn't expect that too mean i'd have another atos assessment at 6 months, it might just involve a check too see where i am health wise at that point, they've already established i have this chronic degenerative illness that wont change.
I am not much older im 48 , the lady i spoke to at dwp said i would get a esa50 to fill in and have to send it off to Atos again so it seems we have to go through this process every few years same has pip
I wont worry too much Shelly
After all if it does come about 6 months on what will have changed for me?.
It's taken a year+ now too get diagnosed and assessed,am i likley too get assessed again in that time scale??, the answer is likley too be No,given the back log atos/capita has it would make more sense too assess people who havent had one.
the illness itself has moved on for Me and they are only treating some of the symptoms, not the illness itself, i'll still have someone fill out the forms for me if one arrives, i can't write now i doubt that will change within 6 months, and the other problems i have wont even be touched apon in 6 months.
I will have seen the neuro once in 4 months and the Parkinsons nurse once in December.
It seems that if a paper assesment can be completed then that is the option they take where possible i know of a couple of people who are awaiting face to face assessments and have waited over 12 months .
My Local d.b.s service told me i was thew longest on their book's who hadn't been assessed.
Good news for both you Shelley and sea angler congratulations!
I only see my consultant every 12 months sea angler, and I have never seen a parkinsons nurse, I've had parkinsons since 2010. Still on the same meds Ropinirole slow release since I was DX, which I increase myself when I feel I need the extra umph! GP said to just phone him when I need more!
Sheffy
Have you ever been offered azilect(rasagiline) Sheffy?...............Paul
Just too say i had confirmation in writing this morning.
Placed in support group, but no mention of length of award within the letter same as Shelly's..
I contacted my local disability people who were pleased for me and thanked them for their help with the forms, they seemed too think as well that they'd be no point in re-assessing me at 6 months given that i have parkinsons.
No Paul, can't seem to get in touch with Parkinsons Nurse for advice, phoned and left messages over last couple of months but to date have had no contact. My physio is under the impression that I need some sort of extra meds along side the Ropinirole. The only other way is to contact my consultants secretary and try for a cancellation appointment, I'm not due to see her till June 1015 otherwise. My GP is'nt very forthcoming, so I feel as if I'm self prescribing!
Sheffy x
That brilliant news sea angler you will probably find its a 3 year review mine had no timesacale on it i had to phone up to asl
Hi Sheffy
Sorry to hear that you haven't been able to get in touch with a Parkinson's nurse. We have nurses available on our helpline - they can't prescribe but it may be useful to chat your situation through to see what help they can give. Call 0808 800 0303.
Also, your local Parkinson's UK information and support worker could potentially help you get in touch with the nurse or might know if there's a problem with the nurse. Enter your postcode at www.parkinsons.org.uk/local-support to find contact details.
I hope this helps.
Sharon
Thank you Sharon at Parkinsons UK,
I have since found out that apparently they are short of parkinson nurses in the Leicestershire area, so what there is they have to spread themselves about. I feel as if I shouldn't pester them because i feel they are under such pressure.I have been given the mobile number of one nurse but I feel again that I am being a nuisance by contacting her. I will try my support worker though see if she can help me and what she thinks I should do.I may even take your advice and contact the parkinsons nurses on your help line.
It's just times when I feel so down and weepy and my meds don't seem to be working is what gets on top of me, I suppose I should be thankful sometimes, there are pwp out there worse off than me.
Thank you for getting in touch
Sheffy x