Download Haemodialysis - patient guide - Epsom and St Helier University

Patient Guide
Information book and DVD
for Patients and their Families
2241_Fres_PatientGuide.indd 1
7/4/11 08:14:01
2
2241_Fres_PatientGuide.indd 2
7/4/11 08:14:02
Information on your dialysis clinic
Chapter 1 ������������������������������������������������������������������������������������� 5
Welcome to your dialysis clinic ������������������������������� 6
Your unit team ��������������������������������������������������������������������������� 7
Confidentiality matters������������������������������������������������������� 8
Your health and safety matters ��������������������������10
Smoking ����������������������������������������������������������������������������������������11
Fire Evacuation ����������������������������������������������������������������������11
Behaviour and Tolerance ��������������������������������������������11
Hygiene and infection control��������������������������������11
Your Unit is called:
Your Unit Telephone no:
Your Clinic / Unit Manager is: Your named Nurse is:
(nurse responsible for overseeing your care)
Your clinic’s opening hours are:
Mon
Tue
Wed
Thu
Fri
Sat
Your Referring Consultant
Nephrologist is:
Your Referring NHS Trust is:
Telephone contact details
for referring NHS Trust:
Contents
Other relevant Healthcare
Professionals (e.g. Dietician,
social worker, diabetologist):
Please note
No clinic is open on Christmas Day or New Year’s Day. Your haemodialysis
schedule will be altered during these two weeks to allow for this. For out of
hours please contact your NHS Trust.
Other Useful Clinic Information
Chapter 2 ����������������������������������������������������������������������������������13
Understanding haemodialysis��������������������������������14
How does dialysis work?��������������������������������������������15
Access ��������������������������������������������������������������������������������������������18
Fistula������������������������������������������������������������������������������������������������18
Graft����������������������������������������������������������������������������������������������������18
Caring for your fistula or graft��������������������������������19
Haemodialysis catheter ����������������������������������������������20
Blood tests����������������������������������������������������������������������������������21
Chapter 3 ����������������������������������������������������������������������������������23
Living with haemodialysis�������������������������������������������24
Commonly asked questions������������������������������������25
Holiday dialysis and you ����������������������������������������������26
What do I do first?��������������������������������������������������������������26
Where can I go?��������������������������������������������������������������������26
Diet ����������������������������������������������������������������������������������������������������27
Sodium��������������������������������������������������������������������������������������������27
Protein����������������������������������������������������������������������������������������������28
Fluid Restriction ��������������������������������������������������������������������28
Potassium ����������������������������������������������������������������������������������29
Phosphate ����������������������������������������������������������������������������������29
Breads, Cereals and Potatoes������������������������������29
Fruit and Vegetables ��������������������������������������������������������29
Chapter 4 ����������������������������������������������������������������������������������31
Talk to us ��������������������������������������������������������������������������������������32
Patient Satisfaction Survey ��������������������������������������33
How to make a complaint������������������������������������������34
Sources of Information��������������������������������������������������36
3
2241_Fres_PatientGuide.indd 3
7/4/11 08:14:02
Foreword
We want to make your dialysis journey with us as comfortable
as possible. We have created this Patient Guide and DVD in
close collaboration with long-term dialysis patients and our
NephroCare® nurses who care for our patients on a daily basis.
Fresenius Medical Care Renal Services is dedicated to
providing patients who suffer from a kidney disease with the
best level of care. Our NephroCare® Programme ensures that
patients receive the best quality of care by employing the best
staff and technology.
Our organisation has worked in partnership with NHS Hospitals
for over 20 years and is currently providing dialysis to thousands
of patients throughout the UK.
This guide is a thorough introduction for new dialysis patients as
well as their families and carers. We want to help you come to
terms with dialysis and this guide will provide answers to many of
the questions you will have and encourage you along the way.
It will also serve as a useful ongoing reference book for patients who
are already being treated through NephroCare®.
Christine Houghton
Managing Director, Fresenius Medical Care Renal Services Ltd.
4
2241_Fres_PatientGuide.indd 4
7/4/11 08:14:03
Chapter 1
Welcome to your dialysis clinic
NephroCare Reflections:
“ No road seems long with a friend
at your side”
5
2241_Fres_PatientGuide.indd 5
7/4/11 08:14:04
Welcome to your
dialysis clinic
you know you’re
in safe hands
Fresenius Medical Care Renal
Services is the largest provider
of renal care in the world. In the
UK we have over 55 dialysis
units, which can be found as far
north as County Durham and as
far south as Cornwall.
In the UK, all patients receiving dialysis
This statement includes the
are NHS patients Your treatment
company’s aims and objectives
is free of charge and payment is
and the services to be provided for
arranged through a contract between
patients It also provides an overview
the NHS and Fresenius Medical
of the complaints procedure and
Care Renal Services We work in
statement in respect of dignity, privacy
partnership with your local hospital to
and patient confidentiality
deliver a high quality treatment and
Through our NephroCare® Programme,
care at your dialysis unit
Fresenius Medical Care Renal Services
A copy of the ‘Statement of Purpose’
will be on display in your unit Please
is delivering the highest standards of
The Fresenius Medical Care Renal
feel free to ask a member of staff
patient care through fully-managed and
Services ‘Statement of Purpose’
should you require a personal copy
fully-equipped dialysis units We give
outlines to its patients and support
the best possible individual treatment to
service users the standards and
over 60,000 patients, in 650 of our own
conditions of care the company
units, in 27 countries around the world
will provide
6
2241_Fres_PatientGuide.indd 6
7/4/11 08:14:07
Di
re
c
Regi
o
nal
r
to
Clinic Services
Dir
ec
to
r
Fresenius Medical Care Renal
In the UK there are five Regional
Services considers its greatest asset
Directors, these people are responsible
to be its employees We are the single
for the overall management of their
largest employer of renal personnel in
dialysis units and ensure that each
the UK and believe in the recruitment
unit provides the highest level of care
of high quality staff, whilst providing
for its dialysis patients In achieving
excellent training and development to
this goal, the Regional Directors
encourage career progressions within
are supported by Regional Support
the organisation
Managers, who are then supported by
individual Clinic or Unit Managers
Reporting into the Managing Director
ct
or
Your unit team
ng
agi
Man
re
Di
of the Clinic business is the Clinic
The Clinic or Unit Manager is
On a day to day basis patients are
Services Director, she is responsible for
responsible for the daily management
cared for within teams of Registered
the Regional Management, Training,
of the dialysis unit This group of highly
Nurses, each with a dedicated
Nursing and Technical teams
qualified individuals and his/her team
Team Leader who is an experienced
perform the dialysis treatment This
Registered Nurse Each patient will
treatment is provided in accordance with
also be allocated a named nurse on
the policies and procedures set out by
admission to the unit
Fresenius Medical Care Renal Services
Although the named nurse will
Your unit will have either a Clinic
not deliver your treatment every
Manager and Deputy Clinic Manager
session they will be your direct
or a Unit Manager and Clinical
point of contact and responsible for
Manager These senior clinic staff will
assessing, planning, coordinating
be supported by some or all of the
and evaluating your care needs on
following – Team Leaders, Registered
an individual and ongoing basis
Nurses, Dialysis Assistants, Healthcare
Clinic Manager
Assistants and a unit Secretary
7
2241_Fres_PatientGuide.indd 7
7/4/11 08:14:16
You will see your nurse with a handheld
computer also called a PDA – this is the
link between the information in the dialysis
machine and the EuCliD5 system.
At our Clinics Head Office in
Birmingham we have a training
centre that runs various educational
sessions throughout the year for the
development of unit staff. Training is
coordinated by the Training Manager
who is supported by a team of highly
experienced Teacher Practitioners,
who also provide clinical training
within the units. We also have a Chief
Nurse who works in conjunction with
the senior management and training
teams to provide leadership, support
and guidance to clinical staff.
Confidentiality matters
It is vitally important that we keep
your medical information private
and confidential. When you begin
your dialysis journey with us, you will
be given a patient card where we
will store data about your dialysis
treatment. You will be given the card
when you arrive at the unit and it will
be used to record your weight.
While you are undergoing dialysis,
the machine is recording information
about your dialysis treatment. In
8
2241_Fres_PatientGuide.indd 8
7/4/11 08:14:20
2009 we installed a new patient
management system called EuCliD5,
this system stores all the treatment
EuCliD5 ®
The European-wide database
for optimal Dialysis
and clinical data of all our patients
You will see your nurse with a
handheld computer also called a
PDA – this is the link between the
information in the dialysis machine
and the EuCliD5 system
This system allows information to
be securely shared with your NHS
Consultant Nephrologist and ensures
a seamless transfer of data between
ourselves and the parent hospital
The nurse will record information on
the PDA such as your weight, blood
The EuCliD5® clinical database was set up in 1999 by Fresenius
pressure, temperature and other
Medical Care to collect anonymous clinical data, pinpoint
general nursing information
problems and find new solutions
At the end of the session the card is
Thanks to the positive results achieved, EuCliD5® is in use in Fresenius
locked away until your next visit
Medical Care centres in Europe and now even in Latin America It supplies
precise information on the effectiveness of therapy – of course, encrypted
to comply with strict data protection regulations
EuCliD5® is a safe and unique resource to safeguard and continually
improve the high quality of NephroCare treatment for each patient
9
2241_Fres_PatientGuide.indd 9
7/4/11 08:14:21
Your health and safety matters
During your visit to the unit, it is important to us that you stay safe and any potential hazards are minimised so far as is
reasonably practicable. Your unit staff are trained and regularly updated in a number of health and safety subjects but as
a patient you can also help contribute to a safe environment. Here are some guidelines to assist you in further minimising
the risks to your own health and safety and that of our staff. Slips, trips and falls are the most common of hazards within a
healthcare environment, so please observe the following:
1
Never rush around
2
Take care when climbing any stairs that
may be present in the unit
always take your time when moving around the unit.
always hold on to the handrail; always use lifts
where provided (except in the event of a fire).
3
Never enter prohibited areas
4
Take care when getting on and off your
dialysis chair
5
8
After treatment always take your time
when leaving your dialysis chair
9
Pay attention and take your time when
standing on and off the weighing scales
10
Never overreach to get something
11
If you accidentally spill something such
as a drink
if an area is off limits to you, it is for a reason.
ensure your clothing is not caught on anything
before you stand up. Ideally you should put
the chair in the upright position and lower to a
comfortable level before getting off.
Never leave items on the floor
they are a trip hazard to yourself, other patients and
the staff; always keep personal belongings on the
tables provided alongside your dialysis chair in the
treatment area, or on your knee in the waiting areas.
6
Do not walk around the unit without
wearing shoes
7
Observe and follow any hazard
warning signs
ensure your access to them is clear. If in doubt ask
for assistance.
always ask for assistance, our staff are always
happy to help.
please inform a member of staff immediately in order
that it is cleaned up quickly to prevent anyone slipping.
12
If you wish to report any hazards
13
If you feel there are aspects of your
treatment where additional assistance
may be required
you are more likely to slip in stockinged feet.
they are there to inform you of any hazards, which
may be present.
sometimes standing up too quickly can lead to
light headedness, which could potentially make
you lose your balance and fall.
which you see during your time within the unit,
please inform a member of staff who will ensure
that it is dealt with.
please inform a member of staff.
10
2241_Fres_PatientGuide.indd 10
7/4/11 08:14:21
Smoking
Hygiene and infection control
Smoking is not permitted on any part of the premises,
entrances or grounds of Fresenius Medical Care Renal
Services at any time. Where units are located on NHS
premises, local agreement and designated areas apply.
Just as health and safety is important so is hygiene and infection control.
There are many ways in which you can help to minimise the risk of infection
when you are at the dialysis unit.
• Always use the hand rub when you arrive and leave the unit
Fire Evacuation
• If you have a fistula, always wash your access arm before your dialysis
The possibility of a fire occurring is highly unlikely; however it is
important that you are familiar with the evacuation procedure and
location of emergency exits. You should receive information about the
fire evacuation procedure when you begin your dialysis with us.
• If you bring in any food with you, keep this at your own station and
Behaviour and Tolerance
• Always ask the nurse for gloves if you are handling your own access site
Fresenius Medical Care Renal Services has a statutory obligation to
provide a safe and secure environment for its staff and others as well
as a moral duty to take all reasonable steps to protect and support its
staff. Any form of violence, abusive, racist or sexist behaviour against
its staff, patients or visitors will not be tolerated.
Protecting and safeguarding individuals
treatment begins, sinks are located close to your station
don’t share with other patients
• Keep bags away from the top of trolleys and bins
and always ensure your hands are clean on leaving your dialysis station
• Understand the difference between the waste bags – black is general
waste and the coloured bag (yellow or orange) is clinical waste such
as used dressings and lines. The yellow boxes are for the disposal of
sharp items
• Finally, remember to always use the foot pedal to open the bin
not your hands
Nursing staff have a responsibility to act on any suspicion or evidence
of abuse and to pass their concerns on to a responsible person.
• Do not place anything on top of any bins or boxes.
What is abuse?
Abuse can be physical, sexual, verbal, financial, and
psychological or an act of neglect or discrimination. Anyone can
be an abuser e.g. relatives, professional staff, friends or other
service users, and it can take place in any setting.
If you or another person are being abused
Signs of abuse
Examples can include:
• Unexplained injuries, multiple bruising, abrasions or finger marks
• Withdrawal, mood changes, extreme anxiety,
low self esteem
• Deterioration of health for no apparent reason
• Inadequate clothing, hygiene needs not being met
• An unwillingness to be alone with a particular carer
• Unwillingness of a carer to allow access to a person
or suspect abuse
Tell someone you can trust as soon as you can e.g. relative, friend,
member of nursing staff, social worker.
Your unit staff can give you a list of useful local contact numbers
on request e.g. social services, police, age concern, NSPCC. You
do not have to tell them the reason for your request.
What happens next?
• If you tell a member of unit staff they will inform their line
manager.
• They will document what you have told them.
• Advice will be sought from the local social services who will help
and support you to stop the abuse from happening.
11
2241_Fres_PatientGuide.indd 11
14/4/11 11:41:44
12
2241_Fres_PatientGuide.indd 12
7/4/11 08:14:21
Chapter 2
Understanding Haemodialysis
NephroCare Reflections:
“ Take good care of yourself and
each day can be a gem” (from Laos)
13
2241_Fres_PatientGuide.indd 13
7/4/11 08:14:22
i
NephroCare Info:
A kidney is made up of around
1 million mini filters called
nephrons. 1.2 litres of blood
flow through both kidneys
every minute – that’s about
1,700 litres a day.
The kidneys are high-performance, vital organs
Understanding haemodialysis
You probably already know what the kidneys look like and where they are in
your body It’s important to also know what the kidneys do for the body Once
you know this, you’ll understand what the NephroCare nursing team and you
yourself must do to ensure you continue to feel well far into the future
The kidneys are bean-shaped, about the size of the fist, sitting beneath the
lowest rib They perform many vital tasks for the body, these include:
• Theyexpelexcesswaterandmetabolicend-products(waste)
out of the body as urine
• Theyplayacentralroleinregulatingbloodpressure
• Theyplayanimportantroleinbloodformationandthe
development of bones
14
2241_Fres_PatientGuide.indd 14
7/4/11 08:14:22
How does dialysis work?
It replaces some of the functions your kidneys normally perform, such
as the removal of extra water from the body and the removal of waste
products that build up in the blood stream
Q
What does Haemodialysis do?
Haemodialysis is a treatment that replaces some of the functions
your kidneys normally perform, such as the removal of extra water
from the body and the removal of waste products that build up in
the blood stream. When your kidneys are not working properly,
waste products and fluid build up in your blood and can cause:
• Sickness and vomiting
• Loss of appetite and weight loss
• Hiccoughs
• Anaemia
• Trouble sleeping
• Tiredness
• Itching
• Leg cramps at night
• Swelling, often of your ankles
• Difficulty breathing
Dialysis will help you manage these problems. However if you are not
receiving enough dialysis this will show up in your blood results and you
may still suffer some of these problems. Getting the right amount of dialysis
is important as it has been proven to make you feel better and live longer.
15
2241_Fres_PatientGuide.indd 15
7/4/11 08:14:24
Healthy kidneys work 14 times
longer than “artificial kidneys”
8760
hours/year
Q
624
hours/year
How does dialysis work?
When a person has kidney failure the haemodialysis
Throughout the haemodialysis treatment your blood is then
machine and dialyser, (also known as an artificial kidney)
pumped by the machine from your access through the
work together to take over some of the work that the
bloodline circuit and dialyser The dialyser is made up of a
kidneys can no longer manage This work includes the
semi permeable membrane – toxins from the blood pass
removal of toxins or waste products and excess water
through this semi permeable membrane in the fluid that
from the blood You may hear clinic staff referring to these
flows through the dialyser This fluid is called dialysate
processes as clearance and ultrafiltration
Pressure inside the dialyser ‘squeezes out’ any excess
To enable these processes to happen your nurse will
fluid The toxins and excess fluid then go down the
programme the dialysis machine according to your dialysis
drain whilst the blood is returned to you This process is
prescription This will include your treatment time and
continuous during treatment but only a small amount of
amount of excess fluid to be removed You will then be
your blood is in the circuit at any one time
connected using bloodlines and your ‘dialysis access’
which may be a fistula, graft or catheter
Your nurse programmes the machine according to your
Consultant Nephrologist’s prescription, this ensures you
receive the correct haemodialysis treatment Your individual
prescription is based on your blood results
16
2241_Fres_PatientGuide.indd 16
7/4/11 08:14:27
Q
How much dialysis do I need?
It is found that to live longer and stay fit and healthy
most people need haemodialysis three times a week.
Each dialysis session should last at least four hours
making a total of 12 hours of dialysis each week.
Fit on Dialysis – it is possible!
Q
What are the complications associated with haemodialysis?
Between treatments the levels of toxins in your blood
The symptoms described are commonly due to hypotension
rise. During dialysis these levels can drop quickly and
(low blood pressure). This can be caused by taking too much
can affect people in different ways. Haemodialysis
fluid off you during your dialysis or by removing it too quickly.
patients can experience some or all of the following:
Your nurse can adjust your treatments to minimise these
• Dizziness
occurrences but carefully adhering to your fluid restriction will
• Feeling sick
help reduce the risk of these symptoms occurring.
• Headaches
• Muscle cramps
Blood pressure medication can also make a difference to
Many patients do not experience any of these
how you feel on dialysis and along with the fluid removal
complications and dialyse with no ill affects at all.
can cause your blood pressure to fall. If this happens your
The nurses will be monitoring you closely during your
Consultant Nephrologist can discuss your medication with
dialysis treatment. If you experience any of these
you and make any necessary alterations to your prescription.
complications or feel unwell during your treatment it is
very important to alert a member of the nursing team
Muscle cramps are again related to the fluid removal but
immediately.
also the removal of salt. Your nurse can adjust your dialysis
to help alleviate these symptoms.
17
2241_Fres_PatientGuide.indd 17
7/4/11 08:14:28
Access
Access in this context, means access to your blood so we can
perform dialysis. There are different types of access – fistula, graft or
haemodialysis catheter – and the Consultant Nephrologist at your renal
unit will advise on the best option for you. A fistula or graft is usually
formed a few weeks before you need to start dialysis.
Fistula (also know as an AVF or Arterio Venous Fistula)
A fistula is the best form of access for most patients because it lasts longer and
has fewer problems such as clotting or infection. It requires a small operation
to join an artery and vein together, usually in your arm. A large vessel will then
develop over a 4-6 week period and this will then allow for dialysis needles to be
inserted each dialysis session so you can be connected to the dialysis machine.
Graft
A graft is the second best choice to a fistula. This requires a small operation
where a soft synthetic tube is attached to an artery and vein, joining them
together. This type of access is often made if your own blood vessels are too
small to make a fistula.
Patients with a fistula or graft can use a local anaesthetic spray (Xylocaine),
cream or injection to help reduce any discomfort that may be associated with
insertion of the needles. We can provide the injection and your GP can prescribe
Emla cream or Xylocaine spray.
18
2241_Fres_PatientGuide.indd 18
7/4/11 08:14:29
Caring for your fistula or graft
Our Chief Nurse gives you some tips for caring for your access. It’s really
important to look after whichever type of access you have carefully so please
follow the instructions you receive from your nursing team.
• Do check the buzz at least once daily. If you can’t feel the buzz, you must
contact the renal unit immediately as your fistula/graft may have stopped
working. Do not wait until your next dialysis treatment.
• Do keep your fistula/graft area clean by washing it with soap and water every day
• Do report any increased pain, swelling, bruising, bleeding or increased heat
over the area to the nurses on the dialysis unit
• Do remove old dressings from cannulation sites when it is safe to do so
(nursing staff will advise)
• Do check the buzz if you feel dizzy or if your blood pressure is low
• If possible, wash your fistula or graft site when you arrive at the unit for
treatment or ask for assistance to do this
• Do not wear restrictive clothing and jewellery over the access site
• Do not carry heavy objects with a fistula or graft arm
• Do not expose to extremes of hot and cold temperature
• Do not allow any blood samples, injections or blood pressure readings to be
carried out on your fistula or graft limb
• Do not allow yourself to become dehydrated
• Do not sleep on an access arm
19
2241_Fres_PatientGuide.indd 19
7/4/11 08:14:30
Haemodialysis catheter
Haemodialysis catheters are usually only used as a temporary access as they
carry more risks of infection A small plastic tube (the haemodialysis catheter)
is inserted into a large vein, usually in the neck or in a vessel running alongside
your collarbone
Caring for your Haemodialysis catheter
• Ahaemodialysiscathetermaybereferredtobydifferentnamesincludinga
line Permcath or central venous catheter (CVC)
• Theexitsitereferstowherethecatheterentersyourskin
• Tohelpkeepthecathetersecureandtoreducetheriskofinfectionadressing
should cover the exit site at all times
• Thecathetershouldalwaysbekeptdryasadampcatheterprovidestheideal
environment for bacteria
• Anyoneusingthecatheterortouchingthecatheterexitsitemustfirstwash
their hands this includes the patient, or healthcare staff
• Contactyourdialysisunitimmediatelyifyounoteanyswelling,pain,redness,
or oozing from the exit site or if you have a temperature
• Ifthereisbleedingfromtheexitsiteapplypressureandcontactthedialysis
unit for advice If bleeding is heavy or doesn’t stop when applying pressure
call 999 to obtain prompt medical attention
• Do not pull/tug the catheter as it may become dislodged If playing sports
tape the line securely to your chest Contact sports are not advised
• Yourdialysiscathetershouldonlybeusedfordialysisunlessthereisa
medical emergency
20
2241_Fres_PatientGuide.indd 20
7/4/11 08:14:30
Blood tests
Blood tests are performed routinely and show how effective your dialysis is and
It is a standard safety procedure in all UK
how you are responding to your diet and medications. A group of blood tests
haemodialysis centres to test for a number of
are taken every month to monitor certain substances in your blood. Your Nurse,
infections (viruses) that are transmitted in the
Consultant and Dietitian review the results each month. The results, and any
change in your treatment will also be discussed with you. Monthly blood tests
usually include the following:
blood. These include Hepatitis B Virus (Hep
B), Hepatitis C Virus (Hep C), and HIV. These
tests are taken when you first commence
haemodialysis treatment and thereafter
approximately every 3 months for Hep B and
• Urea – measures how well you are dialysing and gives an indication of the
amount of protein you are eating.
• Calcium & Phosphate – monitored to enable you to be prescribed the right
dose of phosphate binders. Getting those levels right will help reduce or
correct renal bone disease.
• Potassium – too high or too low can have an adverse affect on your heart.
• Sodium – low levels can cause cramp; high levels can cause thirst, fluid gains
and high blood pressure.
C and annually for HIV although this may vary
depending on your own unit’s specific schedule.
Should you go for holiday dialysis abroad the
frequency of these tests is also likely to increase
for a short time on your return.
Your Consultant Nephrologist may ask for other
blood tests to be taken from time to time, these will
be explained to you by the doctor or your nurse.
• Albumin – an indication of how well nourished you are.
• Haemoglobin – Hb is the level of red blood cells in your body. Too few (a low
Hb) means you are anaemic. Your Consultant Nephrologist will prescribe your
Erythroprotein (EPO) dose dependant on this result.
21
2241_Fres_PatientGuide.indd 21
7/4/11 08:14:30
22
2241_Fres_PatientGuide.indd 22
7/4/11 08:14:30
Chapter 3
Living with Haemodialysis
NephroCare Reflections:
“To rule the moment is to rule life.”
(Marie von Ebner-Eschenbach)
23
2241_Fres_PatientGuide.indd 23
7/4/11 08:14:30
Living with haemodialysis
Having kidney failure and needing to be on haemodialysis means adapting your
lifestyle. How you handle the changes and your feelings are important factors in
maintaining your health.
The staff at your dialysis unit can offer you advice and support through difficulties
you and your family may be experiencing. The staff can also put you in contact
with other support workers such as a social worker should you request it.
You are encouraged to lead as normal a life as possible whilst maintaining your
dialysis diet and regime. This will help you cope with the changes your illness
has brought to your life.
24
2241_Fres_PatientGuide.indd 24
7/4/11 08:14:33
Commonly asked questions
Here, we answer some of the common questions we receive about living with haemodialysis.
Q
Q
Can I work or go to college as normal?
Can I still do regular exercise?
Yes. A regular exercise programme has many
continue with your education. Every effort will be made
benefits for a dialysis patient. Physically it can
to arrange your dialysis around your work or college
increase red blood cells and as a result increase
schedule. The nursing staff will advise you as to any
your energy levels. It may also lead to improved
particular care that should be taken with your access.
muscle strength and a lower level of blood fats.
Psychologically, exercise can lower anxiety, improve
Will my sex drive be affected?
self-esteem and give you a sense of control over
Possibly, many patients experience a decrease
your body.
in sexual activity due to changes in physical and
emotional health. Impotence may occur. If you have
Q
Q
You are encouraged to return to your occupation or
Q
Can I still go on holidays?
any problems please do seek advice. You can, if you
Yes. Being a dialysis patient doesn’t mean you
wish, choose to talk to a member of staff who is the
cannot travel for business or pleasure. It does mean
same sex as you. There may be medical intervention
you will need to make plans to receive treatments
that might be of help to you or you could ask to
in a dialysis centre near where you are visiting. Your
discuss your problems with a trained counsellor.
nurse can help make these arrangements.
Am I able to eat out?
(for more information about holidaying while on dialysis,
please see overleaf)
Yes. You can eat out even though you are on a renal
diet, by following the advice given to you by your
dietitian and nurses. If you are eating out for one
meal you can always adjust the amount of other food
eaten at home on that day. Be especially careful with
drink and food containing fluid for example sauces,
gravy and custard as this can often be your biggest
temptation when socialising.
25
2241_Fres_PatientGuide.indd 25
7/4/11 08:14:34
Holiday dialysis and you
What do I do first?
The first thing you need to do is decide where you would like
The EHIC also covers any treatment you need for a
to go and then find a dialysis centre in that area, which can
chronic disease of pre-existing illness. You need to make
provide you with holiday dialysis. Do not confirm any bookings
arrangements in advance for kidney dialysis and
or pay any holiday deposits before this has been done.
oxygen therapy.
Where can I go?
It is also important to take out travel insurance, which covers
Your local unit or kidney patient associations should be able to
you for a pre-existing medical condition. Most standard
advise you of dialysis units in other areas both in the UK and
policies do not provide this cover. The National Kidney
abroad. Many of the Fresenius Medical Care Renal Services
Federation website has a list of companies that may be able
units will offer holiday dialysis. If you are going on holiday
to help if you have problems getting insurance. It is advisable
within the European Union e.g. Spain, France, Canary Islands
to sort out insurance before you book your holiday.
etc., you will need a European Health Insurance Card (EHIC).
Information on where to find this form is given below:
Q
How long does it take to arrange?
You are responsible for arranging your holiday, the
Online: www.ehic.org.uk
clinic staff will help you by ensuring that the correct
Telephone: 0845 606 2030
documentation is sent to your holiday clinic in
Or collect a form from your local post office.
good time. You need to give your clinic at least two
months notice to enable them to do this.
The EHIC is normally valid for three to five years and covers
any medical treatment that becomes necessary during your
If you have any queries your clinic staff are only too happy
trip, because of either illness or accident. The card gives
to help you. Happy Holidays!
access to state-provided medical treatment only and you’ll
be treated on the same basis as an insured person living in
the country you’re visiting. Remember, this might not cover
all the things you’d expect to get free of charge from the
NHS in the UK. You may have to make a contribution to the
cost of your care.
26
2241_Fres_PatientGuide.indd 26
7/4/11 08:14:34
Diet
Haemodialysis patients require a special diet, which helps
reduce waste products building up in your blood stream
between dialysis sessions The dietary information you are
given has the potential to reduce complications associated with
your treatment and therefore has the benefit of improving your
overall health You will see a dietitian at regular times either at
your regular Consultant Nephrologist appointment or at your
clinic Your dietitian will give you advice on what foods you
may eat and what drinks to take and to avoid Some of this
advice is general to most patients on dialysis while some will be
tailored to your individual needs as determined by your blood
results We have focused on the nutritional areas which are of
relevance to all patients – sodium, protein and fluid restriction
Sodium
Salt
Sodium (salt) is a mineral found in nearly all foods and helps the body
What is
HIGH
per 100g
over
1.5g
Eat occasionally
or as a treat
maintain its water balance and regulate blood pressure Too much
sodium can cause thirst, water retention and high blood pressure
The main source of sodium comes from adding salt to your meals
and in processed foods and ready meals This means you should
What is
between
MEDIUM 0.3g
and
per 100g
1.5g
not add salt to your food We do not recommend that you use salt
An OK choice
substitutes as these contain potassium Your dietitian will be able
to give you very clear advice on what foods to avoid or limit When
you are shopping, check the label to see much salt is in the food per
What is
LOW
0.3g A healthier choice
and
per 100g
below
100g Then you can work out if the food is high, medium or low in
salt using the figures below
27
2241_Fres_PatientGuide.indd 27
7/4/11 08:14:39
Protein
Protein is required for the growth, maintenance and repair of body
tissues. The kidneys normally remove the breakdown products of
protein from your body. When the kidneys fail this function is lost.
Haemodialysis removes this waste protein (urea). It is important for
you to eat protein but too much can make you feel sick, tired and
itchy. The protein intake you need is very specific to you and the
dietitian will discuss with you exactly what amount is right for you.
Fluid Restriction
Controlling your fluid intake is an important consideration when
you are having haemodialysis. The amount of fluid you are
allowed differs from person to person and depends how much
the kidneys are making and the amount of urine you are passing
each day. This may decrease over time.
Fluid removal is therefore a vital part of your treatment, however
the dialysis machine can’t remove as much fluid as the kidneys
would naturally remove. Watching your fluid intake is important
as fluid overload may put a strain on your heart.
As a general rule, the amount of weight you can gain safely
depends on your body size. Between dialysis sessions try not to
exceed a weight increase of 2-3kg above your dry weight.
Your fluid allowance includes everything that you drink including
tea, coffee, milk, squash, fizzy drinks and alcohol. Remember
that fluid is also found in food such as yoghurt, ice cream, gravy,
soup and jelly.
28
2241_Fres_PatientGuide.indd 28
7/4/11 08:14:42
1
2
3
DIETARY TIP:
Eat regular meals including breakfast; don’t skip meals
3
DIETARY TIP:
Eat more fruit and vegetables – just check with your
doctor or dietitian about your blood potassium levels
DIETARY TIP:
DIETARY TIP:
Eat less fat and fewer fatty foods – this will help
control your cholesterol, which is important in reducing
the risk of heart disease
4
DIETARY TIP:
Drink alcohol in moderation
Eat foods rich in fibre – eating fibre-rich food helps
protect against heart disease and cancer
Potassium
Potassium can be very important for some renal patients
provide a constant energy supply Higher fibre choices such
Potassium helps the nerves and muscles in your body
as wholemeal, granary and rye breads, oats and wholegrain
function properly and extra potassium is normally removed
cereals such as weetabix, are recommended rather than
by your kidneys Too much potassium can have an affect
more refined choices such as white bread, rice krispies etc
on your heart You may need additional information on this
depending on your blood results, however your doctor or
Higher fat, lower fibre options such as chips, roast potatoes,
dietitian will advise
waffles, hash browns, sugar or chocolate coated breakfast
cereals, fried rice, and pasta with creamy sauces should be
Phosphate
eliminated where possible, or kept to a minimum
Phosphate can also be important for some renal patients
Phosphate is a form of the mineral phosphorous and is
Fruit and Vegetables
needed to make, maintain and repair bones The kidneys
All fruits and vegetables are low in phosphate If you are
control the amount of phosphate in the body, however
on a potassium restriction, remember to follow your low
as kidney failure progresses, the kidneys lose their ability
potassium advice regarding fruit and vegetable intake
to do this Most people on dialysis will need to eat less
and limit to no more than 5 servings per day Most
phosphate in order to control the level in their blood
fruit and vegetables contain some potassium, however
however your doctor or dietitian can advise you on this
potassium is lost if they are boiled when cooked To retain
the potassium content of your vegetables when you
Breads, Cereals and Potatoes
cook them you may wish to steam, bake or microwave
Bread, cereals and potatoes contain carbohydrate (starch)
them (with minimal water) Fruit and vegetables provide
which provides us with energy, fibre and some vitamins and
protection against heart disease from the antioxidants and
minerals These foods should be included in each meal to
the soluble fibre they contain
29
2241_Fres_PatientGuide.indd 29
7/4/11 08:14:43
2241_Fres_PatientGuide.indd 30
7/4/11 08:14:43
Chapter 4
Talk to us
NephroCare Reflections:
“ Some wait for time to change,
others seize the moment and act.”
(Dante Alighieri)
2241_Fres_PatientGuide.indd 31
7/4/11 08:14:43
“I think the unit is wonderful. The surroundings are perfect and the
unit itself is very bright, clean and airy, it cannot be faulted. The
machines are marvellous and very modern. You never have to
wait for your treatment and find it really good that you can come
straight in for your dialysis when you arrive. The staff are always
pleasant, helpful and kind, and there is a brilliant Clinic Manager.
The unit is a lovely environment to have your dialysis treatment.”
Patient at our Woodgate Dialysis Unit
Talk to us
For new patients we want to reassure
you about your forthcoming journey at
one of our NephroCare dialysis units.
For patients who have been dialysing
with us for some time, you will have
already developed a relationship with
the nursing staff and other patients.
32
2241_Fres_PatientGuide.indd 32
7/4/11 08:14:45
Patient Satisfaction Survey
One way you can give us your feedback is through our
annual Patient Satisfaction Survey This is handed out
to all our patients in all our units and is your opportunity
Th
e
20
r
leading p
arrangements and the staff
th
si
s
annive
rsary
vi
ly
de
r of dia
o
ser ces
vi
to give us feedback on your dialysis unit, your dialysis
2010
Patie
nt Sa
Your c
tisfac
hance
tion S
to let u
urvey
s know
what
you thin
k
Talk to me about
the Survey
We’re
listen
ing
We’re
listening
33
2241_Fres_PatientGuide.indd 33
7/4/11 08:14:49
How to make
a complaint
Should any patient, relative or visitor wish to make a
complaint or a suggestion the following guidelines, which
have been based on the National Health Service procedure
should be followed:
Should you wish to make a complaint regarding your care
you should initially refer it, in writing or verbally, to your
Clinic or Unit Manager who will acknowledge receipt within
two working days of receiving the complaint.
All complaints will be sympathetically dealt with within two
weeks or where an investigation takes longer a letter of
explanation will be sent.
Once the complaint has been investigated you will receive
written confirmation of the investigation and actions taken.
If you are not satisfied with the explanation and want the
matter investigated further, you should write to:
Clinic Services Director
Fresenius Medical Care Renal Services Ltd
Facet Road
Kings Norton
Birmingham
B38 9PT
34
2241_Fres_PatientGuide.indd 34
7/4/11 08:14:54
You are also entitled to make a complaint to the Care
Trust (PCT). PALS are not part of the complaints procedure
Quality Commission (CQC) who will investigate any issues.
itself but they might be able to resolve your concerns
The address for complaints to the CQC is displayed on the
informally or can tell you more about the complaints
notice board in the waiting area.
procedure and independent complaints advocacy services.
Staff will be happy to provide you with a full copy of the
The PALS or complaints manager at the NHS organisation
company complaints procedure should you request one.
you are complaining about can provide advice, including
Your family members/carers may also make a complaint. In
about local independent complaints advocacy services.
this case the above procedure should be followed. Should
you or your family/carer wish to make a complaint the staff at
Your local PCT can also advise if you have a complaint
your clinic will provide support in how to follow the process.
about a primary care practitioner.
A copy of all complaints will be sent to the Clinic Services
The Independent Complaints Advocacy Service (ICAS)
Director and where necessary will engage the involvement
provides advice and support to people who want to complain
of the Care Quality Commission.
about the NHS. Details are at www.dh.gov.uk. Call NHS
Direct on 0845 4647 or your local Citizens Advice Bureau.
As you are a NHS patient you can also use the NHS
The Department of Health’s website also has information
complaints procedure. If you are unhappy with the
on the NHS complaints procedure – www.dh.gov.uk.
treatment or service you have received from the NHS you
are entitled to make a complaint, have it considered, and
If you or your family/carer wish to make a suggestion,
receive a response from the NHS organisation or primary
please speak to a member of staff from the unit or put
care practitioner concerned.
it in writing and address it for the attention of the Clinic
Manager. Fresenius Medical Care Renal Services Ltd.,
The NHS complaints procedure as previously mentioned
value the comments and suggestions from patients and
applies to the NHS in England, except for NHS Foundation
their families as we are continuously striving to improve our
Trusts. A Patient Advice and Liaison Service (PALS) has
services to you.
been established in every NHS Trust and Primary Care
35
2241_Fres_PatientGuide.indd 35
7/4/11 08:14:54
Sources of Information
There are many national and local organisations that provide information and services to local kidney
patients and their families. Your local Kidney Patient Association (KPA) or a member of your clinic
National Kidney Federation (NKF)
British Kidney Patients Association (BKPA)
The National Kidney Federation is the only UK charity run
Founded in 1973 by Elizabeth Ward, whose son Timbo was
by kidney patients for kidney patients.
diagnosed with kidney failure at the age of 13. The BKPA is
concerned with helping the material and physical needs of
Its aim is to promote, throughout the United Kingdom, the
patients and their families. It also lobbies for improved facilities,
best renal medical practice and treatment, the health of
increased Government funding the need for kidney doctors.
persons suffering from kidney disease or renal failure, and
to support the related needs of those relatives and friends
Tel: 01420 472021/2
who care for kidney patients.
www.britishkidney-pa.co.uk
A list of all the KPAs can be found on the National Kidney
Other organisations
Federation website.
You may find the following organisations useful:
Tel: 0845 6010209
Diabetes UK – www.diabetes.org.uk
www.kidney.org.uk
Royal National Institution for the Blind – www.rnib.org.uk
British Heart Foundation – www.bhf.org.uk
Blood Pressure Association – www.assoc.org.uk
Independent Healthcare: National Minimum Standards Regulations (2002)
As independent providers of health care we are regulated by the Care Quality Commission (CQC). From October 2010 we must comply with the Health and Social Care Act 2008
(Regulated Activities) Regulations 2010 and the Care Quality Commission (Registration) Regulations 2009. These regulations describe the essential standards of quality and safety that
people who use health care services have a right to expect . Our compliance with these essential standards is continuously monitored by the CQC.
fmcrs uk 04/11 104 Date of preparation: April 2011 © Copyright 2010 Fresenius Medical Care Deutschland GmbH.
staff can help you with contact details.
Fresenius Medical Care UK Limited · Nunn Brook Road · Huthwaite · Sutton in Ashfield · Notts · NG17 2HU · England · Phone: +44 (0) 1623 445100 · Fax: +44 (0) 1623 550807
Head office: Else-Kröner Straße 1 · 61352 Bad Homburg v. d. H. · Germany
www.fmc-ag.com
2241_Fres_PatientGuide.indd 36
7/4/11 08:14:56