help get my unit up to date please.

[deanocank]

hi my names dean and im a dialysis patient in england leicester the unit that im ae isnt t is n.h.s run there are 22 beds for patients but only 3 tvs between them all and they are old small portables there isnt a radio and it is so boring and it just makes the aggony of dialysis more harsher so ive spoke to the manager and asked if there was funding for equipment for patients and there isnt my 1 dream would be to have a i-pad 2 tablet thing so people could use it at the unit and to get 1 donated to my unit is there any1 out there that can make this happen?? donations welcome
from dean cank.x

[amanda100wilson]

I realise that it doesn't solve the overall problem but is there any chance of you purchasing one for your own use?  Not sure if the Kindle Fire is available in the UK yet but these are very reasonably priced in comparison to an iPad.

[Poppylicious]

Hi Dean.  Are you saying your dialysis unit is NHS funded, or not NHS funded (sorry, wasn't clear from your post!)? Blokey's dialysis was at a major hospital and they have a kidney patients fundraising association which raises money for things like telly-visions.  I'm assuming that most NHS dialysis units have fundraising committees.  Perhaps you could find out if your unit/area does have an association (I know they don't always make it clear that there is one; sometimes it's just a little leaflet hidden amongst a plethora of other stuff on a board, or it only becomes apparent at Christmas when they sell raffle tickets!) and push them for things to relieve the boredom of dialysis.  Failing this, could you start a fundraising/supportive group up with likeminded folk at your unit? 

Or, how about writing a cheeky letter to somewhere like Amazon or Apple and explain how grateful your unit would be for the donation of a Kindle or laptop or iPad and see if that works ...

 

(Oh, just had a gander ... does this link help at all?  If not, they may be able to put you in touch with people who can: http://www.lkpa.org.uk/)

[deanocank]

Yey its nhs funded its just realy out of date and ive asked them about funding and our unit is on a serious budged problems and i lost my job because of my illness as i had a line in my neck for dialysis so they said i couldnt do security anymore so am on a realy tight budget it would be nice just to have something to pass the time away . thanx for the post's.

[Poppylicious]

Dean, I would seriously consider using the link in my previous post and contacting someone locally.  As far as I'm aware you can put personal requests in if you're struggling (and you ARE struggling if you're at dialysis and they're not making your time there as comfortable as possible and someone needs to be made aware of that).  They may even be able to help with the cost towards some techno-gadget ... it's worth a try, eh?  They have a contacts page.

 

As for the job, do you still have a line or are you on a fistula now?  It's pretty pants that they let you go (I assume you hadn't been with them for long) for something that wasn't your fault.  I hope you can find something (if you're even looking). 

[deanocank]

Thanks for the link poppylicious yey they aint making me comfortable at al lat the unit and because of the budget they are struggling there isnt a renal social worker or even a male sexual health nurse to help get medication as the dialysis is making me impertant im just getting to terms with excepting my illness i cant except there not being any help for me as a patient but im sure i will have to cope and my job i worked there for 5 years i did overtime every week never sick or ill unill this happend . i find it so hard being on that machine being left alone while im on it and the nursing staff dont help me much as i have a fear of the machine as about 1 year before i got kidney faliure i went to se my grandma on dialysis and she died and that has stayd with me and haunts me every night and im so scared thats gunna happen to me . i know it sounds like im being silly but that machine every time it alarms i nearly have a heart attack. thanks for the advice and time u have gave me i will follow your advice and try to find some local help somewhere gunna check the link now thanks again.

[Poppylicious]

It doesn't sound like you're being silly at all, Dean.  I know that my Blokey found it very hard being on dialysis and we had many evenings when he came home close to tears through either boredom or feeling as though nobody was there to help him.

As for the impotence ... could you make an appointment with your GP instead?  I don't know if s/he would be able to help, but it might be worth a try.  You could also talk to your GP about how this is affecting you.  Our GP was brilliant at communicating with the nephs at the beginning. 

Do you have a local library?  Maybe in the short term you could borrow some books.  Know anybody with a DS:Lite?  Perhaps they'd lend it to you a couple of times a week.  What are your 'neighbours' on dialysis like ... worth striking up a conversation with?!  Could you take up knitting (or is that a step too far?!  ) Has anybody asked what you want for Christmas yet?!

I do really feel for you.

[Whamo]

Try reading a book.  England has some fantastic literature.  Explore it.

[kristina]

Hello, Dean, I am very sorry for your predicament and I feel very much for your situation. 

But your Dialysis-Unit receives the same amount of NHS-money as other Dialysis-Units in England.
If they chose to use the allocated NHS-money for example to pay themselves more income instead,
there is nothing you can do about it. I have heard similar stories from other Dialysis-patients in the UK
and that is one of the reasons why I am (still) pre-Dialysis with a kidney function of 11%,
fighting very hard to have a chance that my kidneys pick-up again through my special vegetarian kidney-diet, and/or
hopefully I have a chance to be safely out of the country if and when I need medical care.

Problem is, I have lived & worked in London for so long and it is difficult to be accepted in any other country
especially when in need of medical care/pre-Dialysis & suffering from a rare disease.

In the meantime I have to save-up money to pay privately for my monthly blood-tests to see how my kidneys are functioning,
decipher the results of the blood-tests with the help of the Internet and hope for the best...

...I have also heard that some Dialysis-Units in the UK have become unbearable,
so that Dialysis-patients pester their families for an urgent kidney-transplant...

On a more practical side, you could research about other Dialysis-Units in your area to find out
if there is a more caring one and if you are lucky enough to have a NHS-GP/nephrologist
to ask for medical help, you could perhaps ask if they could assist you ?

[deanocank]

i was also on a kidney function of 11 for over a elt the fluid year and i can onistly say that was the worst time of my life i felt like i was diying i couldnt hardly breath or walk very fare without the fear of passing out once i started dialysis the first session ater the first 2hours of being on that machine i got this sudden urge of pure hungreyness and i felt starving for the the first time in a year or so i felt hungrey and i felt the fluid gone off my chest and i felt alot better so im sure you will but if you can fight fight and fight this kidney disease you have got and recover cuz dialysis is no life it is hard and its a struggle and there are times you just dont want it but its the only thing keeping me alive.

also yey ive started thinkin that my unit is just so under funded they isnt a renal social worker and there isnt a male sexual health nurse that im in need of as dialysis is making me impotent and there is no1 at the unit to help my gp is helpin but there should be help at the unit and the gp wanted to know why there isnt 1 as there used to be ive inquired at the unit and there definatley isnt its just so unfair ive never had to claim benifits befor im realy struggling and theres no help in my unit there is 30 beds on my shift there is only 2 white patients the rest are ASIAN and they get treated like royalty the last 6 transplants have been ASINA and they get everything the nuses are asian the transplant doctor is asian im not a racist i realy aint and never have been but i have seen this word for what it is and its 1 sided in my own country its just sad its ot like this most of the patients dont talk english and are not interested in learning and have only been in the counry for less than 6 mounths most of them. and you will find it hard to get excepted into anogther country its disgusting   

[kporter85db]

Dean, if you are not getting proper care and you can't make the situation change at your unit, you need to do what it takes to get to another unit that will give you proper care. Your life depends on it. YOU need to make something happen that gets you the care you need. It probably won't be easy, but you CAN do it. You deserve good care. Fight for yourself!

You will find much information and emotional support from this site but you are the one who has to make the changes it will take to get good health care. I wish you all the best and I hope you can figure out how to get the care you need.

[kristina]

Sorry again for your experiences, Dean, I thought as much...

I am also sorry that you felt so lousy with 11% kidney-function.
I have been lucky so far with my 11% kidney-function & my body shows no typical symptoms of ESRF
and I do hope that gives me enough time to sort out the mess I am in...

I listened to a report on the Radio which stated, that the white indigenous population in England
has become an ethnic minority. Many are not even receiving a proper education to get proper jobs.
It was also mentioned that many churches in England have been changed into Disco’s or Bars
and it was mentioned that some Christian churches have even been degraded into Striptease parlours.

It was also mentioned that thousands of the indigenous population leave England
but many return after having failed miserably in other countries because of the economic climate.

Of course, being in good health gives many a fair chance to try and start again in another country.

Being in ESRF does not provide such privileges and we have to do the best we can for the time being...

You sound as if you do have at least your NHS-GP on your side. That is indeed very lucky
because humanitarian NHS-GP with Christian values are very rare to come by these days.
Please try and inspire your NHS-GP for you to receive your Dialysis-treatment in a place where you don’t feel so isolated -
or perhaps you could be trained to do your Dialysis at home independently?

Please give yourself the best possible chances and make sure
that you are no longer racially discriminated against on the transplant-waiting-list.

I know how hard it can be to sort this out, especially when you don’t feel too well, but please give it a try.

Having a humanitarian NHS-GP on your side is a very good advantage.

My thoughts are with you and I wish you all the best. 

[Poppylicious]

I listened to a report on the Radio which stated, that the white indigenous population in England
has become an ethnic minority.

As of 2009 every single UK region had a white British majority population.  Except for London (which only had 59% white British population, with the white British population being a minority in some boroughs) all regions of the UK had white British populations inexcess of 80%.  Of course, the term indigenous is open to interpretation: we can assume that due to copious invasions and such the percentage of folk who really are white British is so low it's off the scale!

Please give yourself the best possible chances and make sure
that you are no longer racially discriminated against on the transplant-waiting-list.

I doubt very much that Dean is being discriminated against, mostly because it would be completely illegal.  My understanding would be that Dean lives in a region with a high proportion of ethnic minorities.  This would make his experiences different to my Blokey's, who is treated in a region where the proportion of folk who are white British is incredibly high.  When I've been to dialysis with him I have only ever seen white people getting dialysed (I have no way of knowing if they were British though, just as Dean has no way of knowing what proportion of the folk at his unit are, or consider themselves to be, British.)

Dean, obviously if your unit is predominantly made up of ethnic minorities then it will seem as though they're getting all the transplants.  It would be like Blokey being one of only two males on dialysis with all the other patients being female ... if they were the best matches for kidneys then he might think the chaps were being discriminated against.  Be very careful what you say if you don't know all the facts; your emotions won't help you see the balanced picture.

At Blokey's unit most of the staff were Filipino.  They were (mostly) brilliant.

Dean, what time of day do you dialyse?  I would imagine this might make a difference to your experiences too. 

Kristina's idea of home dialysis is a good one; have you asked about Peritoneal Dialysis?

[kristina]

Dean has not been back on IHD and I do hope he is doing alright?

...I am aware that discrimination is illegal, but it happens all the same...

Dean feels discriminated at his Dialysis-centre and the transplant-list
and I feel discriminated because I suffer from a rare genetically inherited disease
which causes me ESRF and I have no NHS-doctor to go to in my ESRF...

 ...I do hope, though, that patients in ESRF are still allowed to express their feelings on IHD...
especially when they feel isolated and discriminated against...

I also hope Dean comes back soon to tell us how he is getting on...and I do hope he is doing better...
...and perhaps he has a chance to be trained for home-dialysis ?

...I have just heard on the Radio that another NHS-top-surgeon, Dr. D. Goodier,
who worked at Barts Hospital and the London Hospital (two top NHS-hospitals in the UK)
has resigned last week from the NHS. He admits that he has “been complicit
in a poor standard of health care and guilty of negligence by association”.

He stated that the hospital was “regularly out of kit, out of nurses, and always out of beds”.
He added that “we have been so used to the situation that it is no longer seen as a crisis, it is the norm”...

...Yesterday I heard on the Radio that Animal Testing Life Science Companies are given access
to NHS-patients-files and NHS-patients-records for further clinical trials in NHS-hospitals.
Many people are deeply disturbed by the notion that their NHS-medical records
can be handed to firms seeking new markets...

[amanda100wilson]

Kristina, please don't believe all that you hear/read on/in the news.  Scaremongering stories make people buy newspapersand up the ratings.