Sorry, this is a long one.
TLDR: How do we navigate the highly contradictory information we are getting about my elderly father's treatment? Are there any services, other than PALS, that can help us?
About seven weeks ago my 85-year-old father was admitted to hospital with a severe arterial blockage and had to have an emergency above-knee leg amputation. (Earlier the same day my mother had a massive heart attack, but that's a whole other issue). Within a week it was found that there was an infection in the stump. He was told that he would need a further amputation and given a 50-50% chance of success. He refused the operation, having lost trust in the surgeons. He was told that he would die within two weeks of sepsis. Two weeks later, still not dying, he was visited by the surgeon who had previously done by-passes on both of his legs, and offered another chance at the operation, with somewhat lower odds of success. Again he refused. We had asked a number of times if he could continue on antibiotics, but were told that there was absolutely no chance that his leg could heal itself and as he was now on the palliative pathway he could have no treatment. He was then discharged to a nursing home which we were assured had sufficient nursing expertise and access to doctors to deal with his now necrotic stump and his pain needs.
Unsurprisingly, they did not. They also removed him from the palliative pathway as they saw no sign that he was dying. After some weeks of increased confusion he suddenly gained clarity, and having forgotten the reasons for his refusal of the operation decided he would like to see if it was still possible. After endless phone calls I managed to get the original consultant's secretary to arrange for him to be brought in to a clinic for reassessment. The nursing home's GP (only available once a week) thought he was too weak to wait a week for hospital transport so together they arranged for him to be admitted via A & E. Then ensued the usual profound lack of communication that had been a feature throughout. The ambulance did not know where they were meant to be taking him and why; the various wards he was admitted to thought he was there for wound treatment (the home had been unable to deal with the wound at all and mostly left it undressed); his notes said he was not to be readmitted to hospital. We eventually managed to clarify things and were told by yet another consultant that another operation was not possible but that they would keep him in for a few days to clear up his wound.
Then three days later, the ward sister stopped us at visiting time to tell us his wound was healing itself. The thing that we had been assured was completely impossible. Within a week he had been removed from the palliative pathway, had a vacuum dressing applied, was back on all of his drugs, lost his CHC funding, and was all set for a slow recovery with the hospital very keen to find another facility to discharge him to. Then they suddenly announced he was in fact well enough to go straight to the local amputation rehab centre.
Which brings us to the latest confusion. On Saturday he was moved to the centre. On Sunday they sent him back to hospital via A & E because of low blood pressure. Hospital very annoyed they had not discussed it with a doctor as this blood pressure apparently normal for him. Kept in hospital until Tuesday for vacuum dressing change, then back to rehab centre. Sent back in as a day patient on Wednesday for vacuum pump to be emptied and because they were concerned he had a temperature. On Thursday sent back to hospital via A & E with concerns about sepsis. Hospital now saying he is so far from sepsis that they are taking him off all antibiotics, and that his infection has cleared. Rehab centre told my mother and sister that they would keep a bed for him over the weekend and that he was a lovely man and they would be happy to have him back. On his discharge notes they wrote that they would not readmit him. Hospital now looking for somewhere else to discharge him to.
We are really worried that he will not get the rehab and occupational therapy he desperately needs to be able to live independently. We just don't know who to trust or what is going on. There seem to be so many hidden agendas - mainly the hospital's obsession with discharging as soon as possible. If anyone has read this far, I'd be really grateful for any suggestions of what we can do now. I have raised a case with PALS but their timescale is so slow that I don't think they are going to be of much help. At my wits' end.