What a Farce!

My social worker called in today to try and sort out this physio assessment.

The problem is they want me to take all my equipment too obviously I have to take the wheelchair but also the walker and i sometimes use crutches for short time.

My social worker could pick me up, though I doubt we'd get all the equipment in the car as the walker doesnt fold small but if she does that I cant get transport home as it has to be booked both ways. (she has another appointment booked straight after mine that day which is why she would be unable to get me home as well)


They have booked me a car but same problem again the folding chair will go in a regular car boot but the wheeled walker with seat wont fit as well. I asked why cant I go in ambulance like I did to audiology dept before, they said ambulance drivers wont carry equipment they only push the person in thier wheelchair.


So my social worker asked then 'How is she meant to get to the hospital with her equipment? The person suggested a home visit, ' thats ok' my social worker says 'can we arrange that?'


'No' the person on phone says 'its a seperate department', We have to cancel this appointment, cancel interpreter (and pay cancellation fee), go back to GP and ask for referral for Home Assessment!


So my social worker has gone to call down at my GP's to see if she can ask for a Home Assessment for me without having to make an appointment and take me back down there, as she has to get back for another appointment elsewhere this afternoon.


They don't like to make life easy for us do they!


It's coming up to 7 years from my first symptoms and I never received any physio or speech therapy as they said they had to wait for a diagnosis.


When I wrote a letter to my first Neuro back in 2003 saying I had heard that Hypothyroidism can cause Cerebellar Ataxia he said 'yes it can but its extremely rare and therefore unlikely in your case'.


When the NHS guy had to get my medical records to support my request for funding for a communciation aid it says for cause of ataxia 'Chronic Hypothyroidism'!! Yet no-one has ever admitted that they thought I might be right in the absence of finding any other cause and given that my T3 levels were so low despite been on 300mcgs of Thyroxine a day.


If the NHS guy hadnt sent me a copy of the papers he submitted to the panel I would have never known that I had been right in the first place 6 years ago!

They have agreed to fund me a communication aid but typically it has been delayed because there was a dispute over who was responsible for putting the order in so it still hasn't been ordered although funding was agreed in December (week before xmas). It will take 6 weeks as they are built to order so I should with any luck receive one around February/March providing someone manages to get the order in by the end of this week!