UK Home Hemo

[MattyBoy100]

Hi everyone,

I have a question mainly for people in the UK on either notcurnal home hemo or daily.  I am looking to build a case to convince my renal consutant that I am suitable for nocturnal home hemo.  Everyone insists that there is help at home in case something goes wrong.  I have heard differently however, and that there are people who live alone and are doing nocturnal home hemo.

I would like to get in touch with any of you who have convinced their doctors they can do it on their own and how they went about it.  I am more than capable of doing home hemo but it is necessary for me to build a strong case to present to my consultant.

I have trawled through the net but it is very hard to find any specific individual (apart from in the US) who does home hemo on their own.  If any of you are out there in the UK that manages their own treatment without a partner or care assistant I would like to get in touch with you either on here or via private messages.

Thanks in advance.

m

[okarol]

Maybe there's help in this thread http://ihatedialysis.com/forum/index.php?topic=9705.0
I know Meinuk would be a good person to talk to.

[Stoday]

You may find the National Institute for Clinical Excellence publication "Guidance on home compared with hospital haemodialysis for patients with end-stage renal failure" helpful. It's No.48 of their Technical Appraisal Guidance. I got it from somewhere on NICE's web site.

This is from page 12 of the publication. The sixth bullet point seems to cover your issue.

7.3.2 A patient selected for or currently receiving haemodialysis in a hospital or satellite unit is offered the option of home haemodialysis when the following are present. The patient:
• has the ability and motivation to learn to carry out the process
• has the commitment to maintain treatment
• is stable on dialysis
• is free of complications and significant concomitant disease that would render home haemodialysis unsuitable or unsafe
• has good functioning vascular access
• has a carer who has (or carers who have) also made an informed decision to assist with the haemodialysis unless the individual is able to manage on his or her own
• has suitable space and facilities or an area that could be adapted within the home environment.

There are other paragraphs that include the option of having no carer.

My hospital is happy for me to use home hemodialysis, but not during the night when the hospital's dialysis unit is closed. There would then be no support available should anything go wrong.

If you can't find the publication, drop me a pm with your email address and I shall send you a copy.

[Hanify]

I don't know if this is of any help, but over here in NZ people are not allowed to do home haemo UNLESS they can do it on their own.  So when you go for training in home haemo you go on your own and if you do have a partner they're not even allowed to come until the last day!  Just to get a bit familiar with it.  I can ask my nurses if they know anything about pressure going on in other countries to allow home haemo solo if you like.

[billybags]

Hi MattyBoy100, We live in the UK and my husband was asked when he was on hemo if he would be interested in doing it at home. This is a new thing. The criteria was " you have to have a spare room down stairs" and also a partner. Now as you know our houses are very different to the ones in America. We have smaller rooms and if you are lucky you may live in a bungalow. I don't think many people in the unit have been able to take this up. MattyBoy100 do not give up in your quest, things are changing all the time. Go for it.

[MattyBoy100]

hey everyone,

Thanks for your replies,

I found my answer in Stoday's reply.  I have two copies of the NICE guidelines on my pc, one is the original draft written by my very own head consultant in Glasgow, though I have never met him!  And the second verstion is the final draft on the NHS NICE website.

I don't know how I missed the "unless the patient can manage on their own'" part.  Think it cos I been trawling through so much stuff I just skim read it when it mention carers and thought here we go again!

A fresh pair of eyes always helps, I am a man on a mission now!  I do have some support, my sister is 5 mins up the road but she has  two small children and could not commit and my partner lives 45 mins away from me and I am not ready to live together.

I expect and uphill struggle but as it is in black and white written by my top Doc, I cannot see how they can refuse me now!
Thanks, M.

[Stoday]

I'm pleased to have been able to help.

Do keep us posted about your progress.

[del]

Good luck on your quest for home hemo mattyboy!!!  It is the way to go. Nocturnal is even better than short daily (in my opinion) if you can do it.  We are in Canada and hubby has been on nocturnal home hemo for over 3 years now. No diet or fluid restrictions     Here they do prefer that you have a partner but there are some people who do it on their own.  best part of all is that at home you can set your own schedule.  Fight for home hemo 

[MattyBoy100]

Here is an update,

I phoned the people in charge of home hemo here.  They do not currently offer nocturnal home hemo but do offer daily which is not much good for me as i work during the day.  They also said that it is a stipulation that someone else is there despite my mentioning the guidelines stating unless a patient can manage on his or her own.

I have emailed my renal team and I also have a review at the end of the month with my consultant.  I am not giving up and believe there is always a first for everything.  My uncle was the first person in Aberdeen to get a dialysis machine in his house and that was way back in the 70's.  I guess it's a case of fighting for everything.

M.

[billybags]

MattyBoy100, keep up the fight.

[Stoday]

I phoned the people in charge of home hemo here.

I fear you got the monkey and not the organ-grinder.

[MattyBoy100]

Stoday you are soooooooooooooooooooooo right!!!

I got one of the nurses that trains patients for home hemo!

Why is it so hard to see the top people about something!

M

[KICKSTART]

Ive discussed this today at my unit ..yes im in the UK . Nocturnal home hemo is not very popular its seems , for the very reason i brought up ..the fact that you have to sleep with 2 needles in your arm ! You think how still people who are awake are with 2 needles in their arm , now try and imagine trying to keep that still while sleeping!!! It seems the majority of people that have tried Nocturnal home hemo dont like it .
As for home hemo in general ,eg;daytime, ANYONE can do it , providing they are capable and are willing to sign a DISCLAIMER (if they live alone) should anything go wrong, ALSO  no mention of it having to be a downstairs room either and all costs to convert a room for home hemo will be covered by the foundation ! Hope this helps ?

[willowtreewren]

 
Good to see you posting, Kickstart!

I would like to add that the folks on a separate listserv for NxStage who are doing nocturnal are thrilled with it. They have no problems with the needles. Some sleep in beds and some sleep in chairs.

[MattyBoy100]

Hi guys,

about the needles, a single needle is used.  The reason for this is for safety and before any of you say that you won't get such high pump speeds through a single needle that is irrelevant...

You spend more time on the machine overnight so the pump speed does not need to be as high as it is with two needles and, if for some reason the needle comes out while you are sleeping the machine automatically shuts off while it doesn't with 2 needles and can leave you spraying blood out the line.  Seems to me people can sleep in a chair or on a bed - whatever they are most comfortable in.

I have heard that plastic needles are also used though I would have to research this further.  I think the improved overall health far outwieghs a little bit of discomfort - after all, most dialysis entails some discomfort of some sort.

M