"Comment on information and follow up"

Following diagnosis I underwent mastectomy, sentinel node biopsy and immediate reconstruction. The diagnosis, surgery and care were great. The staff were excellent and the ward nursing staff exceptional.

I would like to comment on the lack of discharge advice though and subsequent requirement for surgery.

I was discharged with one of my two drains in situ and had to manage it myself before I could return to have it removed when it stopped draining. There was an assumption that I would be able to remember the information given verbally on discharge. There was no written information about exercise, how much and what I could do. No information on what I could expect as a result of the surgery.

As a result I had to contact the consultant or his secretary numerous times. I always got a response and the care continued to be good but I felt that I was bothering the consultant unnecessarily. When I discussed things with the Breast Care Nurse, she did her best but had never seen a reconstruction performed so struggled to answer some concerns and queries.

If there had been a Specialist nurse for Breast Reconstruction it would have helped immensely. Subsequently anyone having this surgery needs to have a nipple reconstructed (about a year later) but this is not considered a priority when you are on a waiting list and cancellations for surgery followed on two occasions. Whilst this is not a priority for the hospital, it is a huge priority for your own psychological well being and self esteem.

If you could get this message to people it would be a bonus.