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Hi Folks,
As you probably know I left Guy's* last year as I was due to transfer to
the adult haemodialysis unit at Bart's* (St.Bartholemew's). I thought I'd
write this piece to let you know what it is like transferring to an adult
unit. I'm writing this piece as a haemo patient, but many of my points may
be relevant to transplant and PD patients.
First let me explain the situation; I was also starting at University, in
Preston, where I would be dialysing at the Royal Preston Hospital (RPH) whilst
studying, and dialyse at Bart's when at home in London. The original idea
was that I would leave Timbo Ward (at Guy's) and go to Bart's before starting
at University, however a place was not available at Bart's. This meant that
I went straight from Timbo to RPH and straight from home to university.
Moving away from home for the first time is not easy. Moving away from home
and transferring to an adult unit at the same time is even less easy. However
with a little care and planning this can be done without too many problems.
Here are a few things that may help you if you are transferring to a new
unit or moving to university.
Make sure you have a copy of your transfer letter including:
A list of all your drugs:
Include everything on this including: your EPO dosage and brand.
Your calorie supplement. (If you're on one.) This often seems to get left
off drug lists.
The dialysate you normally use. (A76 for example)
The dialyser (kidney) you would normally use. (Size 12 (Gambro))
The address and phone number of both the unit you are transferring from and
the one you are transferring to. You will need to know both of these, for
the following reasons; where you're going so you can get there, so you can
give the address to relevant people like the university or your new GP (if
you're going to university), or home GP. Where you've transferred from: so
that you can tell members of staff if they need to check things, so you can
give this address to your GP(s)
This means you will be able to tell your unit relevant information if they
do not know it, have access to it or have lost it!
The address(es) of your GP(s): it helps if they know what's going on as
well.
Also, if like me you previously got your EPO from your unit, you may find
your new unit will want you to get it from your GP. The system usually works
like this; you get your EPO prescription from your doctor, take it to your
chemist, who orders your EPO. You then pick it up from your chemist and take
it to the hospital next time you visit, they then store it for you (with
your name on it) and you give it (or get given it) (subcutaneously) as and
when prescribed. So you can see the number of people who will need to know
about your EPO, your unit(s), your GP(s) and your pharmacist.
It took my unit in Preston 5 weeks to sort out my EPO, 6 months to write
a letter to my GP to get it supplied and after all that the GP refused to
prescribe the EPO (as some GP's are now doing). I now get my EPO from my
unit in Preston. In London I get a prescription from my unit, which I take
to my local pharmacist. If you get prescriptions from your unit to take to
your own pharmacist it is important to get it stamped with a hospital stamp
as the pharmacy is unlikely to accept it otherwise.
As long as you are at school or college (and under 18) you will get free
prescriptions for this reason. When you leave school/college you are not
entitled to prescriptions for these reasons. However as a long term adult
haemodialysis patient you should be entitled to free prescriptions, but you
will need to get a prescription charges exemption certificate, you should
ask your doctor about this when you go for an appointment to your new unit.
When you visit your new adult unit it will probably appear much like Guy's,
only bigger (usually), however you will find a few differences.
You are likely to be expected to do a lot of thing's yourself. You will probably
learn to setup, line, prime, clean, strip and wash your own machine. Some
patients also put themselves on and take themselves off. You are also likely
to be expected to do your own general observations (BP, temperature and weight)
and calculate your total weight loss, including drinks and wash back. Many
of you probably do some of these things already, but I was surprised how
much I thought I knew, compared to how much I really knew when I started
setting up my own machines. Learn as much as you can whilst at Guy's, if
you have the time, it will save time and stress later!
Your new unit is likely to be busier and larger than Guy's with more patients,
possibly more shifts, and not necessarily more staff! Staff are however,
likely to change shifts more often so there are a lot more names to learn!
Adult units often run three shifts each day, a morning shift, an
afternoon shift and an evening shift. Usually six days a week (Mon to Sat)
These are usually fairly normal really, there are (often) more staff around
or available, than on night shifts including nurses, doctors, dietitians,
a social worker. Often patients on day shifts do not have to set up their
own machines.
Sometimes called 'Twilight' or evening shifts these usually start from between
7pm and 10 pm. My hospital in London also allows patients to sleep in the
hospital until the following morning. The main difference on the twilight
shift is the number of staff. There are likely to be fewer nurses, and usually
a doctor on call.
The number of nursing staff on night shift varies from unit to unit. My London
unit has 2 staff on the night shift (to 12 patients) my unit in Preston has
more staff on the night shift.
This depends on what your doing! I started on the night shift at Preston
when I started my course. I thought 'Great, I'll be able to do a full day's
study and then dialyse in the evenings'. However, getting to sleep at 2 am
is not compatible with lectures at 9 am in the morning. It took a while to
sort out the best way to make my treatment compatible with my timetable.
This was partly due to bad communication between the day and night staff
and the fact that I was unable to talk to the person in charge of treatment
session times. A phone call to the person in charge during the day often
does wonders in sorting out problems.
If you are studying or working you may not want to dialyse at night as it
may infringe into the next day, however if you are one of those lucky people
who finds it easy to sleep on and straight after dialysis then the night
shift may be for you.
I ended up dialysing on the afternoon shift two days a week and late night
on Friday, when I didn't have to get up early the next day!
This varies greatly from unit to unit and from shift to shift. One unit I
was at did full meals for the day patients, and tea and toast for the night
patients, another unit only provided sandwiches. Rules and regulations regarding
foods not 'normally' allowed also differ. Some units allow the eating of
crisps chocolate etcetera on the machine, others require you to continue
your renal diet even whilst on the machine!
You may have been on calorie supplements at Guy's. Some adult units do not
bother with them and it may be up to you as to whether or not you continue
to take them. My advice is, do. They keep your blood chemistry at acceptable
levels which in turn keeps your appetite up.
Another point to mention is that adult units usually only do bloods once
a month, so you do not have the close monitoring you had at Guy's, the more
you stick to your diet, the less likely you are to have unforeseen
problems.
When you transfer you will probably see patients with large amounts of fluid
to be removed. You will also probably see patients with cramp because of
this.
My advice is to stick to your restrictions, and you are unlikely to have
trouble with cramp.
for sticking to fluid restrictions.
Measure your fluid and drink little amounts.
Get yourself a shot glass (usually about 30 -- 40 ml.) and if you really
have trouble write down how much you drink until you regain control.
One of the worst tips I have come across is to suck sweets to stop yourself
feeling thirsty. Sweets and sugary, fizzy soft drinks will only make you
more thirsty. I find tea and chilled mineral water the most refreshing of
drinks.
Another thing I have found is that once you are over your restriction (ie
you have fluid 'on board') your mouth will feel dry any way. I have not found
anyway to combat this except by dialysing (and not drinking over the restriction
to start with)!
Some adult units have satellite unit attached to them. It may be located
in the grounds of another hospital, or be independent. They will still be
under the control of the main unit, however you will have to return to the
main hospital for clinic appointments. Also patients on satellite units are
usually fairly healthy and self sufficient. However, it is worth checking
about satellite units, when you transfer to your adult unit, as they may
be able to offer shifts, which your main unit may not. This is useful if
you need to switch shifts because of appointments, or special events. I also
had to change to daytime shifts when I started work (yes, work) and the satellite
unit was the only unit that had afternoon shifts available, so I picked up
my notes and off I went. (And it was closer and shared the same staff,
too.)
If you get hospital transport you will know of it's varying punctuality.
I have found that ambulance transport is more punctual than the contracted
taxi firms who are usually more interested in a paying fare than in the sum
they get paid by the hospital. However they will not admit to this!
: You can claim back travel fares using an AG1/AG5 form. You will need to
provide tickets ( or petrol receipts) and usually some sort of record of
your dialysis appointments. The Social worker should have more information
on this. Also, when you transfer you will need to sort this out pretty quickly
as you can only back claim one month's fares.
If you learn to drive (or drive already) you
must declare the fact that you are a dialysis patient
to the DVLA or you could be driving illegally, and possibly with invalid
insurance, (it is worth mentioning your condition to your insurance company
as well.
DLA: If your dialysis causes you a lot of physical problems,
ie dizziness, sickness problems walking, then you could be eligible for
Disability Living Allowance, there have been a number of articles about this
in the National Kidney Federations 'Kidney Life' Newsletter so they are a
useful contact. But your first contact should be your Social Worker.
If you go on to further college, or university, and you have had
a special needs report, have (or will) miss(ed) school due to dialysis, you
should be eligible for DSA. This is an allowance from the (central) government
that is applied for via your Local Education Authority (LEA) which can be
used to purchase equipment or materials (for instance a desktop or laptop
computer, pens, paper, books etcetera). The laptop I am typing this on is
being used for my coursework, and very useful it is too.
The total amount, including the 'top up' portion is £4795 (based on
1997 figures).
Most unit's will have some sort of patient organisation which is usually
there to represent and support patients, sort out problems, help with queries,
and allow patients to meet each other (among other things). Some KPA's are
better than others but they are usually worth joining as some of the activities
they organise are great fun. I am a member of no less than three KPA's, and
I have found them very useful on occasions. (See Useful Addresses at end
of document)
: Bad communications can be the cause of a huge number of problems on units,
especially when arranging shift changes, appointments, transport, prescriptions
etc. Always allow as much time as possible in advance when making arrangements,
and if made well in advance (more than a month), reminders don't hurt. If
you talk to someone by phone (or if you can't remember their name!!) ask
them, make a note of it, as well as the date and any action to be taken,
eg someone will ring you back etc.
Complaints!
If you are unhappy about treatment or anything else, talk to someone about
it. Most problems can be sorted out immediately, but if you don't tell anyone
about it, they won't know. Staff aren't psychic!
If there is a problem which does not get solved within a reasonable time
by staff, and you are still unhappy, then there is a complaints system in
operation.
The duty manager will handle initial complaints and can be summoned at
any time (and I have called out a duty manager at 2am
before!)
You will usually be asked about the nature of the complaint and also to put
it in writing. Sometimes this procedure can work wonders!!
National Kidney Federation
The National Kidney Federation is the only national organisation
in the UK which is run by kidney patients for kidney patients.
They give support to parents and families, and deal with hundreds of enquiries
each year from students, medical and support staff and members of the general
public on a wide range of kidney related issues. They also provide valuable
information to their members in their quarterly magazine 'Kidney Life' and
have an annual conference to bring together patients from all over the
country.
The NKF can also provide grants for educational needs for renal patients.
For more information: The National Kidney Federation, 6 Stanley Street, Worksop,
Nottinghamshire S81 7HX
Phone: 01909 487795
The Federation is active in promoting the concept of organ donation, in
representing the views of kidney patients to government and to the media
and is a leader in campaigning for improved renal services.
The British Kidney Patients Association
A National Kidney Patients Association set up by Elizabeth Ward OBE
the BKPA campaigns for more organ donation and provides educational grants
and assistance for patients.
The British Kidney Patients Association
Bordon
Hampshire
GU35 9JZ
UK
Phone: 01420 472 021
The Best Way To Find Out About Your Own Unit's KPA is To Ask Someone!
*If you are reading this elsewhere from Guy's hospital, London, please substitute
Guy's for the name of your paediatric unit, Bart's or RPH for the name of
the unit you are transferring to!
Copyright JAMES WARHAM DECEMBER 1997
This document is copyright to me, James Warham. You are welcome to use it
in an unchanged form for reference, educational use, newsletters, but you
should let me know first that you are going to use it! This document may
be updated at any time.
Disclaimer: all situations and occurrences within this document are purely
'as observed' and do not constitute any protocol of any kind. I am not
responsible for damage or harm caused by suggestions made herein. Neither
is it my intention to offend any person.
Have a nice day!!
jwarham@geocities.com
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