"Untimely adoption of urgently transferred sick patient"

I’m writing on behalf of my wife who is now so mentally and physically exhausted over the lack of care she has been fighting for under the Gastro team at FVRH.

My wife has Crohn's and over the past year developed a High Output Stoma that is causing her electrolytes to drop weekly to critical levels and therefore also requires weekly infusions, mainly of magnesium, or she could die.

This was being managed and investigated in another health board, but we recently moved into the area. Our previous health board asked FV, due to the time sensitiveness of the case, that she be urgently seen by a specialist consultant in FV.

Just having to move healthcare teams was frightening enough for a vulnerable person, but we never imagined where things would go to and the complete lack of care sick patients would receive between health boards.

My wife's transfer process was started earlier this year, and she still has not been seen by a consultant that understands her condition or is even under any consultant for that matter.

She has been picked up by the day unit for the infusions, which has been wonderful, but they are working blind without any instructions for her care from a knowledgeable consultant. She is seeing a dietician, but same issue, where dietician needs input from GI. GP requesting GI.

Her health has deteriorated since leaving our previous HB and she has been forced to have to go to the emergency room multiple times because she doesn't have a consultant managing her case. This was not the level of care she experienced in her previous HB.

I have spoken to patient relations many, many times (they must be sick of me!) who just keep telling me they aren't getting a response back from GI. I have spoken with my MSP and they haven't had a resolution response from FV either. I have even looked into going private.

This experience moving to this HB has been so scary! We're considering moving as we just don't feel safe.

I totally understand the system is under pressure, but It feels like FVHB aren't holding to any SLA standards any longer and no one is accountable for anything. I have also found staff to be dismissive and unorganised, and I don't feel that they are empowered to speak up to senior members of staff.

I am appalled and scared of how this situation is playing out. Trust is completely gone at this point. I don't know what else to do.