"Nobody seems to have any interest or care"

27 minutes driving round car park to unsuccessfully find a parking space. Unable to walk the distance from any other legal parking space. Ended up illegally parking. I arrived late, breathless, spinning with vertigo and imbalance problems, nausea due to both, and atrial fibrillation and no voice.  

No directions from the hospital entrance to the test suite mentioned in the invite letter. 

Info on invite letter to tell me which suite to be at did not match the info on the wall outside the suite ie letter said ‘Diagnostic Clinic 1’.  I could find no such clinic. My appt took place at CT scan 2 suite. Letter said report to reception at clinic 1.  I could find no reception anywhere. 

At the scan i had to lie on my tummy - or I could not see what was going on around me.  I had no voice due to my breathing problems.  I am deaf.  Nobody asked me if I needed any added help.  Nobody gave me a chance to ask about a thing.  Very rushed.  Long queue.  I felt like a lump on a conveyer belt.  Annoying people when asking for things to be repeated.  Annoying people when I couldn’t be heard or understood. 

Nobody stopped and looked at me properly - they rushed away after speaking / barely looked at me when doing so - so nobody noticed I had balance problems and I didn’t get to say I had vision problems. 

So I didn’t know I was back out of the scan and it was over, until someone spoke into my ear.  I literally screamed and physically leapt.  It took ten minutes until my heart was back on rhythm and the floor, walls and ceiling stopped moving around me.  Nobody helped me.  Quick apology.  No time to listen to my explanation.  Carried on rushing around me with their system.  

2.5 hours after leaving home - distressed and exhausted - deaf and no voice with severe balance problems - I needed to eat and drink.  Cafe was not able to serve me one single item of food that was dairy free. Not one.  Not even an apple.  

I wanted to claim expenses as I’m on Universal Credit.  No directions to the relevant offices.  I had to walk to three different offices/desks to get through the process to get my money.  This took 20 minutes of walking with vertigo, heart and lung problems and no directions on how to get to each desk, how to get back out of each, how to find the exit of the building and how to access food, or drink, or toilets.  

My trip from and to home took 2 hours and 55 minutes.  The appointment took 4 minutes.  

I won’t be going back.  I’ll do without tests.  

I’ve no named consultant.  I don’t know why I’m getting all these tests.  I don’t know who to contact for results.  I’ve no idea what’s wrong with me to make me so unwell and I felt nobody helped or supported me or explained anything.  It’s now 12 weeks since I was taken ill. Nobody seems to have any interest or care that I am so unwell.   

The posters etc say it’s ok to ask.  Only answer I’ve had is, I don’t know, that’s not my field.  

Feel it's a waste of money and waste of my time and much depleted energy.  What’s the point in testing me for ‘something’ and making myself ill and exhausted for days after when nobody bothers to talk to me and tell me anything?  

It makes me feel that only the most severe of illnesses are treated and patients looked after, and the rest of us don’t count.  My quality of life trapped in my home with no help or support is not acknowledged or support or treatment given.  

As long as I have no diagnosis or treatment or support I cannot get benefits to pay for food or heating or transport to and from hospital tests. And I get called lazy and irresponsible.

I feel that the hospital system abdicates responsibility, causing huge effort, suffering and inconvenience.