"My overall experience was utterly disappointing"

I have Sickle Cell Anemia & I've been in this trust under Northwick Park Hospital & Central Middlesex Hospital for years. I recently survived a stroke & I feel Northwick Park Hospital is ill-equipped. I'm in a wheelchair. The past 2 years I've been terribly let down by the NHS from how people speak to me, as if what I say is to be met with an eye roll.

Before I got the port in my chest I had the vascaff inserted in my groin (which was uncomfortable) & yeah I've met great people but my overall experience was utterly disappointing. I felt there was dishonesty and that they didn't always have my best interests in mind.

I got pointless referral after referral & I don't even know if I'll ever walk again. I've lived with Ossiphication in my hips and knees for over 2 years. I'm young but I also have a chronic condition...

I finally got referred to Guys Hospital & the wait is incredibly long!

The surgeon overlooking surgery at one point disrespected me by telling me that my life will never be the same again, as if I didn't have enough to deal with .. I was in a nursing home which the hospital put me in!

I'm honestly depressed.

On another occasion, I had to go to the Ambulatory Day Care unit for a venesection & after the procedure was done I called one of the nurses over to remove me from the line.

Now, here's where it gets dangerous. 

There was still blood in the line that seeped back into my body & finally I got disconnected after 30 minutes - but that in my view was a danger to my life.

I had a chest crisis shortly after which could've caused a heart attack...

I feel that because of staff error I could've died that same day.