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Ataxia UK
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Yet another big setback

I have in the past 2 days, had yet ANOTHER setback with the NHS round here. 7 months ago was the last time I saw the consultant Neurologist, within a week of seeing her, I got my allotted spot for the 6 monthly appointment, 7th dec 2018, then a few weeks later I received another letter, saying the app had been cancelled, and it was now the 21st dec 2018, now after waiting 5 months,and getting near to the 21st, imagine my disgust at receiving another letter, cancelling the December appointment, and moving it to MAY 2019, sorry, but WTF. I then sent a very strongly worded ( no swearing in it) to the Harrogate NHS District Hospital..... still waiting for a reply.

And all the while, having had to help organise my fathers funeral for the 20th. No body deserves this at Christmas, or any other time. IF I could afford to go private, I would

Mr "Angry"

Knaresborough

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Sorry to hear about all of messing around with your appointments, but it happens all the time with them. I should have had my ANNUAL review with my local neurologist in April and am still waiting! When I telephoned in August to ask if it was due I was told they were very busy and was it urgent? I have given up bothering.

Hope your father's funeral goes well.

Heather

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Thank you, re my father.

With what has happened regarding my 2 PIP assessments, and the DWP assessment, which I am taking to a tribunal (no date yet). I am getting seriously peeved, and am so angry with my results, I am not worried about the extra money, its the whole principal, I am very aware of not being able to work, as it would be a struggle, considering what I have been doing all my working life (I am 58), and being a single person on my own, it just feels nobody in officialdom seems to care, from the lady at the job centre to the NHS (consultant/m GP's, and social worker. IF I want any help from these people, I have to ask for it, they do not periodically ask how I am. Sorry to say this, but given recent events, and the lack of care from medically trained people (doctors, nurses, Hospitals in general) I am very jaded

Feck, I got better feedback via Facebook 2 weeks ago, when I decided I had to re home my cat, via a rescue centre)

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So sorry and so understand Peter. At least I’d no problem re work (retired) or getting Attendance Allowance. I was 63 when I got Idiopathic Cerebellar Ataxia and now 66 and had zero help. Left to it. I feel abandoned but still smile although understand the anger. Mine has progressed rapidly from when I first saw Neurologist. I can’t even write or sign my name 😥 Sorry about your dad

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Hi Peter,

Sorry for the loss of your father. Hope you're bearing up.

I sent off MY SSCS1 form off yesterday. Let's wait and see how long it will take and what transpires.

Re your appointments, I can understand your frustration. They bloody better hurry up and find a cure for us as the uncertainty is killing.

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you are going through it! I hope they pull their finger out soon.

i'm sorry to hear about your father and your cat.

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I was signed off after 2 visits to the neurologist. My doctor referred me to another (different) hospital who cancelled the appointment and wrote to the doctor:”what do you expect me to do with this woman? I am not going to see her”. How rude! The doctor was trying to help after I explained that NOONE told me anything, I’d even to look up Ataxia on the internet!

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Sorry to hear about your father and also your cat .

You seem to be having a rough time at the moment, added to with the frustrations of your various appointments.

Sending you some strength vibes and hugs

Love

Alison xxx

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It never rains, it pours.

I know that you won’t appreciate sympathy, but I send much empathy from Liverpool.

What a nightmare you are going through, if it is any consolation – you won’t get many answers beyond signposting to the brain injury clinic. I smashed the back of my head and ended up in hospital, wasn’t given any scans, was sent home to an empty house by disinterested staff. Then after never really recovering fully, was diagnosed with cerebellum ataxia and signposted to a brain injury charity.

At no point was I warned that this may rapidly progress - which it has. And thats it, no advice, no nothing of any note and three years later, no follow up.

The social care in this once Great Britain is none existent now, and the people who make the policies and decisions will never know or care about anything other then the balance sheet and the savings they have made the government.

It is a crisis of epic proportions- but callous, immoral politicians will remain untouched while Bupa exists.

So people like us who worked hard all our lives will be left with an uncertain and stressful future, at a time when we need the support the most.

No wonder we get consumed with anger, it’s beggars belief frankly.

Kindness, respect, empathy and care cost nothing; so it is as much a reflection on the changing morals of our society as a whole.

: “The true measure of any society can be found in how it treats its most vulnerable members.”

We are on our own.....but together in our CA journey.

You are doing your very best in extremely difficult circumstances. And that is after all, all you can do. Good on you and respect

Like a teabag, you only know how strong you are when you are in hot water eh?

My sincerest condolences and heartfelt empathy winging its was to you, along with a big hug.

✨💐💕🌈🍀☮️✨

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You Know the NHS take the piss,too busy???

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If you have CONFIRMED ataxia (any kind) going to doctor once is enough because there is no cure, I live in US & 80% of the doctors dont have more details about it OR they dont want to spend there time where 1 in 10000 patients will have this , Google is your best freind , my 2 CENTS

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I totally get your point, and where you are coming from. Its just here in England, we have available "PIP" and other things. And what I was trying to say, was that appointments that have been made for me, by the Doctors, have been cancelled, and during this time of family problems, moving house, it is just not needed

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Hi Peter, how are you doing?

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