"Dialysis Patient Care, support and guidance"

My husband started dialysis in September 2019. He  was advised his care and support needs will now be managed by an  assigned nurse and the clinic consultant at the renal ward. He was not to visit a regular clinic anymore.

Unfortunately he has had no care or support since, he is basically attached to a  dialysis machine, the  operators  push, twiddle some buttons,   punch in some numbers and that's about the measure of the staff involvement. My husband has to remind them  of all the additional adjustments,   medications that need to added  / given to him on every visit.   He is always anxious going in for treatment and the same coming off.

There is the added fear of another patient who very loudly mistreats the staff  on a regular basis, threatening them and disturbing the  whole ward. My husband understandably feels very  vulnerable and scared as he could bleed to death if this patient did carry out these threats.    

Recently for about 10 days  he was coming off feeling  dizzy, sickly and  nauseous and  felt worse the following day, no one suggested any changes. I had to reach out to KCare UK to alert the consultant to do a review of his side effects. The consultant didn't recommend any dialysis changes  but  if he feels poorly to phone for ambulance and not to wait until his next dialysis session. We followed this instruction in Covid19 / risky times.   My husband  was hospitalised over night in the Queen Elizabeth, appropriate reviews carried out, they discovered his was his dry weight was too low and too much fluid was being removed. The consultant diagnosed this by just looking at my husband. This level of knowledge, experience or care has not been available to my husband as a dialysis patient in the New Vic Hospital. Sorry, why is this?

The patients at the New Vic are required to  request an  appointment to see the consultant which can take more than a week. The renal nurses have provided no care advise or support guidance - why were we advised they will be his go to while he is on dialysis? There is no advice on  mental wellbeing, financial, care support / information available.

We have asked to be moved to Queen Elizabeth several times even before Covid19 due to it being closer to home  but it was never followed up. Because my husband isn't on benefits there are no travel expenses available to him but they expect him to travel past the QE and dialysis in the New Victoria. Also the Renal Unit are not aware of any travel expense process/advice.