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For families and carers

Practical life and money

Dialysis costs money and it costs time, and the time is usually the more expensive of the two. Much of what a family loses here is lost by default, because nobody knew to ask a question early enough. These are the questions.

Work, and how it is usually lost

Kidney failure takes people out of work, and it takes them out early. In United States registry data, around 38% of people who had been employed six months before kidney failure had already stopped working by the time dialysis began (USRDS Annual Data Report, 2022). The job is often lost before the first session, during the months of feeling steadily more unwell.

Employment among people who have just started dialysis is low, and it differs sharply by modality: about 9.9% for in-centre haemodialysis, about 21% for home haemodialysis, and about 25% for peritoneal dialysis (USRDS Annual Data Report, 2022).

Read those three numbers carefully, because they are easy to misuse. They do not prove that home dialysis keeps people in work. Younger, fitter, more independent people are more likely to be selected for home therapies in the first place, so some of that gap is selection, not effect.

What is genuinely plausible, and consistent across countries, is the direction of it: home therapies give you control over the schedule, and control over the schedule is what makes a job survivable. In-centre haemodialysis takes three fixed half days out of every week and hands you back a body that feels wrung out afterwards. That is very hard to fit around most employment, and it is the reason the in-centre number is the lowest of the three.

So the modality conversation is not only a clinical conversation. It is also a conversation about whether they keep working, and it deserves to be had before the choice is made rather than after the job has gone.

What to actually do about it

  • Ask about home dialysis, either home haemodialysis or peritoneal dialysis, explicitly in terms of work. Ask whether they are a candidate, and if not, why not.
  • Ask whether the unit runs twilight, evening or nocturnal in-centre slots. A session that starts after work is a completely different life from one that eats a working morning.
  • Ask the employer for flexible or reduced hours, remote working, or a change of duties, and ask before things reach crisis point. Employment protections for long-term illness exist in many countries and differ in every one of them, so get the position for your own jurisdiction from someone qualified rather than from a website.
  • Involve the renal social worker early. Early means while the job still exists. A social worker brought in after a dismissal is doing damage limitation.
  • Think about the carer job too. If you are the one driving three times a week, your own employment is quietly on the line as well, and it is worth saying so to your own employer before it becomes a pattern of absence nobody explained.

Employment law is different in every country. Nothing on this page is a legal position, and we deliberately do not give one. Ask someone qualified in your own jurisdiction, and start with the renal social worker.

Building a household around three fixed half days

A dialysis timetable is not negotiable in the way most appointments are, and pretending otherwise is how families end up in a permanent low-grade crisis. Build the week around it deliberately, once, rather than re-improvising every seven days.

  • Write the schedule on a calendar the whole household can see. Sessions, travel time, and the recovery hours afterwards, which are part of the treatment even though nobody books them.
  • Protect the non-dialysis days. That is when the family lunch, the visit, the outing and the good hours go. Stop scheduling life onto dialysis days and then feeling let down.
  • Treat the long weekend gap with respect. Fluid and potassium build up most across it, and the session that follows it is the one that must not be missed.
  • Have a backup plan for transport, and a backup person, from the beginning. Not when the car breaks down.
  • Agree who does what, in writing if the family is large. Vague collective goodwill reliably becomes one exhausted person.
  • Plan holidays around dialysis rather than hoping. Dialysing away from home is possible and it is a clinical handover that takes months to arrange, not a booking.

Money, and what we will not pretend to know

We are going to be direct about this, because being vague would be worse than useless.

We do not know what dialysis costs a patient or a family in Seychelles, and we are not going to guess. There is no authoritative published statement of what a patient pays, what is covered, what a visitor is charged, or what support a household can claim, and inventing a figure on a health website would be an act of vandalism.

You will find numbers online. Treat them with real suspicion. Figures of around USD 175 and USD 220 per session appear in Seychelles press reporting and in a Ministry of Health report, but those are the state procurement costs of running the service. They are not a price list, they are not what an individual pays, and they must not be read that way. A widely indexed commercial travel site quotes a much higher per-session figure for visitors, and it is undated, third-party and corroborated by nobody.

The only reliable number is the one the renal unit or the Ministry of Health gives you directly, in writing, for your situation. Ask them. Then ask them again when the answer matters.

What a household can do

  • Count the costs nobody puts on a form: transport three times a week, parking, time off for the carer, food, phone calls, and the income that quietly stopped.
  • Ask the renal social worker what financial support exists locally, and what the process is. Do not assume there is none and do not assume there is some.
  • If travel insurance is anywhere in the picture, kidney failure and dialysis must be declared. An undeclared policy is void when you need it, which is the worst possible moment to discover it.
  • Get anything that matters in writing. Verbal reassurance about money has a short half-life.

Questions worth putting to the renal unit

Take this list in with you. Write the answers down at the time, because nobody remembers a clinic conversation accurately afterwards, least of all someone who is frightened or exhausted, and that includes you.

  • What exactly is the schedule going to be, including the arrival time, the session length, and how long they are realistically in the building?
  • Are they a candidate for home haemodialysis or peritoneal dialysis? If not, what is the specific reason, and could it change?
  • Do you have evening, twilight or nocturnal slots, and what is the waiting time for one?
  • What transport support exists, and who arranges it?
  • Can we see a renal dietitian, and can I come to that appointment as the person who cooks?
  • Is there a renal social worker, and can we speak to them now rather than later?
  • Is there a counsellor or psychologist attached to the renal service, and is it available to family members?
  • What is their target weight, and how will we know if it needs changing?
  • What number do we ring out of hours, and what counts as a reason to ring it?
  • What is the plan if they miss a session, or if we cannot get here?
  • Is there a patient and carer group we can be put in touch with?
  • If they want to travel, who do we talk to, and how far ahead do we need to start?

And one for yourselves

Ask the unit what support exists for the carer, using that word. Renal social workers, counsellors and psychologists, peer groups and respite are part of standard kidney care in many systems, and families routinely never find out because nobody offers and nobody asks.

Sources

  1. Annual Data Report 2022 (employment among incident dialysis patients, by modality) (United States Renal Data System (USRDS), 2022)
  2. NG107: Renal replacement therapy and conservative management (NICE, 2018)
  3. Seychelles National Survey of Noncommunicable Diseases 2023 (national cost of haemodialysis) (Ministry of Health, Seychelles, 2024)
  4. Your complete guide to travelling abroad as a kidney patient (Kidney Care UK)