So Frustrated

[Piper2017]

So frustrated and need to vent, my daughter was seen by urology consultant in November who decided a plan of action for procedure for Botox injections in to bladder in january.heard nothing from hospital so was ringing consultants receptionist every few weeks to chase up appointment but kept getting fobbed off.then this week receptionist tells me that consultant is on long term leave and has not been in the hospital since December and she will have to move to another consultant.i decided to Google her consultants name only to find out he is up in front of a medical tribunal and may lose his medical licence.i am so frustrated that my daughter has been left to struggle for all these extra months when the hospital knew well that her consultant was not going to be back anytime in the near future.i feel they have let us down so much and am so exhausted fighting to get help for my daughter who is years down this horrible road of urinary incontinence without any success from numerous medications.i just don't know how much more of this I can take,really feel at breaking point.

[MrsSquirrel]

Oh Piper I do feel for you. We are possibly in line for botox. Got to have some invasive tube up willy/filling bladder procedure 1st to look at overactive/dysfuctional void.

It is very bad of the hosp to fobb you off. I would put in a complaint. Even if there was a reluctance to talk about what was happening with his case (may have been info sensitive) someone should have told you he was unable to work on the case and someone else appointed. There will be a complaints body ours is health watch Derbyshire x Explain how disruptive and how long the problem has been going on. Its not acceptable to delay treatment - esp for a child. Very poor. Hugs to you, we know what its like to battle NHS long windedness as well as navigating SEN stuff with school too. Take some time to yourself if you are able. We advocates have to have some space to recharge. Its a long and weary road we go by.

[Frustratedmum1]

I know where you are coming from as I feel we kept getting fobbed of by our health professionals. I think you should put in a complaint. Someone suggested PALS (patient advice liaison service) I'm considering this route. Please let me know how you get on. You are doing a good job keep going.

[Heidi_hi78]

I put a complaint I had too we been fobbed off to .we been on waiting lists longer than the n.h.s has done anything 3 years so far for us and 90% of this has been waiting lists times my daughter has to have a cystoscopy and urodynamics was told this October last year I asked how long I was told 8 to 12 weeks then told February this year now been told may when asked and question why so long as I was told 8 to 12 the secretary then told after every week of ringing her that the consultant has left and my daughter is on a routine waiting list which is 36 weeks . We were then 19 weeks on this now as I'm writing this we now 23 weeks on the list waiting list I went to g.p asked him to make my daughter as urgent 4 weeks ago as a new consultant has started I heard nothing I put a complaint 10 days ago waiting to hear back .put your complaint in we lie to like you I feel your pain x

[Piper2017]

I think it's so bad that all of us feel so let down by the medical people that are meant to be helping our kids.

I put a complaint in and they are investigating the situation.

In the meantime I got a phone call from the urology nurse to say that another consultant has looked at my daughter's file and doesn't think Botox is the way for her to go he feels she should try PTNS which would involve a 30 minute session per week for 12 weeks.has anyone done this and if so was it successful?.