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Author Topic: On the fast track? Or just lucky, or...  (Read 4085 times)
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Emettman
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"It's the madness that keeps him sane"


« on: April 17, 2012, 05:59:53 PM »

...do they know something I don't?

Cornwall CFS / ME service just having reopened its doors to new referrals after a hiatus, under advice from neurophysiology and neuropsychology consultants in Plymouth, my GP wrote to them at the end of March asking for me to be seen.
Rather cheekily (I thought ) I sent an e-mail to the department yesterday asking if they could give me an approximate idea of the waiting times.
They rang me today and offered a 2hr appointment for next Monday. 
That was unexpected.  Hence the three possibilities bumping around in my mind.

Mind you, that'll be most of my week gone. 
I was in no shape to push a trolley round ASDA today, and was very glad I have (just) mastered online grocery shopping.

Chris.

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lazylegs
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« Reply #1 on: April 17, 2012, 06:29:13 PM »

 s_hi  E man,  Thats great news, perhaps they can do something about getting you some support with domestic things.   Take it easy and save your energy for your journey.   Kiss  LL.x
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Emettman
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"It's the madness that keeps him sane"


« Reply #2 on: April 17, 2012, 06:33:56 PM »

... perhaps they can do something about getting you some support...

A couple flying buttresses and some underpinning, perhaps?
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agapanthus
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« Reply #3 on: April 17, 2012, 09:53:10 PM »

Good news E.
I still have an outstanding appointment that was postponed from December, but to be honest I don't think there's much point as I have already been diagnosed, and seen twice more by Prof P. They never offered me any other help as they could see I was an annoying person and would just look up everything on the internet and ignore them  hee20hee20hee
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Emettman
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"It's the madness that keeps him sane"


« Reply #4 on: April 24, 2012, 10:43:32 AM »

I had my appointment yesterday:
(yes, I'm doing a fair impression of a puppet with cut strings, today.)
Dr Lopez-Chertudi, who in my opinion is being worked far too hard by the current system and staffing levels, saw me for over two hours.

She gave me a clear confirmation of the CSF diagnosis, and comprehensively guided me through the condition and its implications.
In terms of the support services and interventions available, however, I think I will do at least as well here, and without the travel problems.

I am going to get an OT visit at some point, to help talk me through lifestyle adjustments etc, which could be useful. 
Other than that it's a matter  of whether I want to join a group for counselling /advice / therapy /training sessions held about fifteen miles away.
My main concern is if that's going to be physically practicable. That is starting sometime in September, so I've time to think and assess.


Chris.
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lazylegs
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« Reply #5 on: April 24, 2012, 11:31:46 AM »

   s_hi  Emettman,   Have you any chance of getting  Dr. Lopez-Chertudi to putyour diagnosis in writing as that can be a really useful document to have.

    As for travelling to the counselling appointments, may I suggest you go for one, this way you can assess how it affects you physically and wether you think it would be beneficial for you personally.   051bye LL.x
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agapanthus
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« Reply #6 on: April 24, 2012, 12:05:27 PM »

As we are both in Cornwall, I know something about how the system worked when Prof Pinching was running things. I would be very surprised if Dr L-C didn't give a report to your GP in writing, with regard to your appointment. However, I didn't automatically get sent a copy and had to ask for one from my GP.

Yes, I can imagine that she is overworked unless they have taken anyone else on in the CFS service, as one Dr was off long term sick and there were only 2 of them. To have spent 2 hrs with you is admirable - I thought that my hour long appointment with Prof P was pretty good going.

Yes, it's really good to have the diagnosis, but sadly the NHS have very little else to offer. I must admit that I haven't ever been invited to do anything else as I am considered able to look after myself apparently.  smile

With regards to getting to the group, you might want to consider Transport Access Patients (known as TAP), Community Transport. When I first used them I had to get to Plymouth for a series of appointments for a serious eye op, and they were absolutely amazing. I didn't have to pay at all as I was able to get the whole payment reimbursed as I was on Tax Credits. Even if you do pay they are a lot cheaper than a taxi, and will take you door to door. It's now under the auspices of Age UK, but I would hope that it is still open to people with any disability (as it was when I used it), though I note that there's no mention on the site.....
It's worth a ring anyway if you would find driving that far too much....
http://www.ageuk.org.uk/cornwall/Community-transport/

If not then this is the Cornwall Council page for Community Transport broken down by area....
http://www.cornwall.gov.uk/default.aspx?page=6010

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Emettman
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« Reply #7 on: April 24, 2012, 10:01:32 PM »

Thank you both.

I will be seeing my GP in a week or so, and will check then.
I have used TAP before when I had appointments at Plymouth hospital and yes, they are far more economical than an ordinary taxi, but I was told I could not claim back with ESA.
I will be re-checking that, and be rather miffed if the earlier information was wrong.

On anything but a very bad day I could drive the fifteen miles, but I couldn't expect to *do* anything there and be sure of being in a condition to drive back...
I will be giving this some thought, as is my wont.

Chris
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agapanthus
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« Reply #8 on: April 25, 2012, 07:10:52 AM »

It is true that you cannot claim back automatically based on Contributions ESA, though you could if you were on Income based ESA. I assume you are on the former, though I may be wrong. The reason for this is that you can claim Contributions ESA and have a huge amount of savings (I wish).

However under the scheme called the NHS Low Income scheme you can get help with all kinds of things, including the cost of hospital visits. As long as your income is low (a basic income of ESA would be), and you don't have significant savings then you should qualify.

This link explains it....you need to apply on an HC1 form, which annoyingly cannot be printed off the net, but you can ring to get one. You then get issued with a certificate for a year which covers the things listed. If you travel to a hospital then you can claim the money back at the hospital itself... they all have an office set up for this.

http://www.nhsbsa.nhs.uk/1125.aspx

Hopefully this will help, as you have plenty of time to do this if you decide to go to the group.

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Emettman
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"It's the madness that keeps him sane"


« Reply #9 on: April 25, 2012, 10:03:25 AM »

Ah....

I think my ESA is income based, as savings did matter, and I don't have tons of them.  I will double -check.
As for the other, no, no-one had briefed me in that direction.  We used the HC1 form in optical practice, for free eye tests for those on income support and certain other benefits, which tended to change name and have some odd exceptions... as ever.
I will pursue this.  Thank you.

Sergeant addressing new recruits in 1944.
"Don't worry lads! The war will be over, soon.   Either we or the Germans will run out of paper."

Chris.


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agapanthus
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« Reply #10 on: April 25, 2012, 11:44:52 AM »

If your ESA is income related then it appears that you do qualify in your own right for help with travel to hospital costs.....your name is on the list  rolleyes

http://www.patient.co.uk/health/Help-with-Travel-Costs-to-Hospital.htm

Yes, I dealt with HC1 forms too as I worked in a dentist  smile I think most of Cornwall was claiming exemptions of some kind or other. No comment.

LOL re the war comment. Don't worry it will all get simpler when we have Universal Credit brought in. NOT - the computer system will fall apart first.

I think I have claimed almost every benefit on the list which is why I am so well informed  smile Yes, I am the benefit scrounger that the Tories love to hate.
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lazylegs
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« Reply #11 on: April 25, 2012, 12:21:12 PM »

   051bye  Aggie, I have to disagree with you most strongly. wiggle finger wiggle finger

   
Quote
  Yes, I am the benefit scrounger that the Tories love to hate. 

    You are not a scrounger, just an unfortunate well deserving person, with a valid claim for entitlement.  Wink  LL.x
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Pinsandb
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« Reply #12 on: June 26, 2014, 04:03:15 PM »

Hi Emettman,

I hope your still active member on here as I realise is'm replying to quite an old post.

I am wondering how your appointments went with neuropsychology, did they help and if so how? Sorry, so many questions.

My neurologist (not the nicest man I must say) referred me to neuropsychology based on his belief that cfs/me is purely psychological, contrary to it being documented as neurological condition officially....Neurolgist even put in writing his belief.

Be really pleased to heat back from you.

Xx
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