I recently had an appointment at Finchley Memorial Hospital to flush my port a cath . Normally this is a quick in and out. Great to have a local hospital to use with easy parking ( this has to be done every 6 weeks). The nurses are all great.
A few days later, on the thursday, I had an early start. I had my yearly scan of my kidneys at Royal National Orthopedic Hospital at 9.40am. Tried to check in at the same time for my 1.30 and 2pm appointments but not possible until 1pm. Scan appointment ran to time. Bumped into urology nurse and pleaded with them to change my suprabubic catherta as it was due to be changed the next day. Not surprisingly they did not have clinic time to do it. And is only able to change them regularly for people who need entonox or who go into autonomic dysreflexia. Had a telephone consultation booked with nurse on the following Monday. Wasn’t quite sure why.
It wasn’t worth going home in between appointments ….. so thought I might as well go to Stanmore High Street for a change. Got back before 1pm, finally got seen by Urologist at 3pm and shortly afterwards the rehab consultant. A whole day of hospital appointments but much needed and at least I had 3 appointments on one day.
Once I was home phoned the district nurse office (Based a Bullimore House, Finchley) to confirm arrangements for the change of catheter. The regular district nurse I had previously was great; they would ring me and give me an approx time they would come.
The admin staff said if I could go out I didn’t need district nurse and that it was only for people who needed palliative care. This upset me as I do not have another option… my GP is not trained to do it or the practice nurses. Nor will hospital do it.
I waited all day for district nurse on the friday, phoned at 3pm. Admin person didn’t know who’s list I was on. At 5.30pm got a call saying they couldn’t come out and would come between 11am- 3pm on Monday - I was upset and furious and concerned that the risk of infection would increase. DN said there was nothing they could do. If I wanted to, I could go to the hospital… I spoke to my GP practice who suggested I speak to DN manager on Monday.
Monday, I phoned and left a message for manager to phone me. Went out for a quick bit of fresh air after my morning routine.
Got a message at 2.30 pm to say they weren’t coming and would come on Tuesday instead. I went ballistic. I called the DN and asked the speak to the manager. They phoned me back to say it wasn’t possible. And I needed to wait in again on Tuesday.
I said that I was more than willing to go to a clinic at a set time to change my catheter - but this is not possible in Barnet.
The manager phoned me up and arranged for someone to be out within 2 hours. This was a nurse I had never met before. Fortunately the catheter change went smoothly… although it did not start to drain properly, I heard the nurse muttered under their breath "oh my god". Which made me panic. It eventually drained.
I dread the thought of going through this all over again in 6 weeks time. I wish had a regular district nurse and an approximate time or a clinic with a set appointment where I could go.
I want to live my life - to work, to go out and not be defined by my medical condition. Or to waste unnecessary hours. It makes me anxious and depressed to be waiting in.
Waiting time
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