"General Over view of Experiences so far"

About: Royal Sussex County Hospital

There are some great doctors, specialists, nurses and staff, unfortunately I feel slightly let down due to some of the service, my disorders been impacting my life expidentially over the last few years, my first appointment I was supposed to have an echo and a tilt test, after I had the echo the receptionist told me to go home as I apparently had no more appointments and they were very rude. Thé next time I came in the receptionist was great.

But this meant I missed the appointment I needed for diagnosis and help, so I had to wait another 3 months for the test I was meant to have that day.

After I was diagnosed I recieved no follow up but was continuing/worsening symptoms.

This next appointment was à very important appointment to me as the disorder combined with what it relates to is greatly impacting my life.

The doctor didnt even let me describe what was going on as they said they knew nothing of the disorder, I was referred by à specialist cardiologist for a specific treatment, when I asked the cardiologist about thé treatment they said they'd never heard of it and that was that. No investigation, no help.

They told me it was normal to have à heart rate lower than 40 while standing. Not only is this abnormal in a healthy person its paricularly abnormal in someone with tachycardia.

I also had to remind them of the words autonomic system.

There needs to be more awareness and knowledge of these disorders as they impact many young healthy looking people to à disabling degree. Also the extent of what it affects is greatly missunderstood from poor understanding and education.

I know this is à great department for many, but if you have something rare or poorly understood find à specialist in the subject so you dont wait years, after having it since à child, to recieve no help and to be brushed off.

Story from NHS Choices

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Royal Sussex County Hospital

I am sorry to read that you have been let down by the cardiology service and that there seems to have been a lack of knowledge and communication with you about your condition, which has caused you distress and frustration.

If you would like to contact me or PALS on 01273 523284 or 664588 pals@bsuh.nhs.uk, we will be happy to help you.

Best wishes

Caroline Davies

Deputy Chief Nurse


  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful