NKF Patient Support Pack

PATIENT Support Pack NKF HELPLINE: 0800 169 09 36

Order of Contents

Order of Contents

2

Introduction by the National Kidney Federation

3

Your Kidneys

4-6

Fluid Balance

7-8

About Anaemia

9-11

Dialysis Treatment Choices Haemodialysis Fistula Shared Haemodialysis Care Peritoneal Dialysis

12-21 12 13-14 15-16 17-21

Personal Information

22-27

Patient Session Details

28-46

About The NKF

47-51

Independence Products

52-53

Become a NKF Member

54-55

Kidney Patient Support Pack from the NKF

The NKF

for new patients starting their dialysis journey The National Kidney Federation (NKF) has produced this Patient Support Pack as a guide for new kidney patients who are facing dialysis or transplant.

NKF has been representing renal patients for over 45 years and is unique in being the only national charity run by kidney patients, for kidney patients. It has the only UK Helpline dedicated solely to kidney patients and their families.

When you are told that you have a longterm medical condition such as kidney disease and dialysis is the lifesaving treatment you will need, you might feel that you have lost control, particularly as dialysis treatment requires so many changes to your life.

This booklet has been designed for people who have been newly diagnosed with kidney disease and must decide what will be the best treatment options for them and to understand kidney disease and dialysis.

Should you require further information, please contact the NKF Helpline by calling 0800 169 09 36 or email helpline@kidney.org.uk or view NKF website at www.kidney.org.uk NKF is a registered charity in England and Wales 1106735 In Scotland SC049431 National Kidney Federation The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire, S81 8BW

3

Your Kidneys

Your Kidneys About one in every ten people have some abnormalities in their kidneys but some people can develop kidney failure which means that the kidneys are not working well enough to keep you healthy and if the kidney function is very low it can be life threatening.

The function of the kidneys is to: • Remove waste from our body • Remove excess fluid and balance the fluid in our body • Help to control blood pressure • Produce a hormone which makes red blood cells • Maintains healthy bones

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Patient Support Pack

When the kidneys are not able to do all of this there is a build up of chemicals in the body which need to be eliminated by the kidneys to make us well, this is called chronic kidney disease (CKD).

In most cases kidney failure is a slow deterioration of kidney function which is calculated in 5 stages from your blood and is called the eGFR which means estimated glomerular filtration rate.

Doctors will monitor patients who have chronic kidney disease as they may be at greater risk of having raised blood pressure, fluid retention, anaemia or other medical conditions.

The eGFR is calculated by the laboratory from the blood level of creatinine in your blood stream. This calculation takes into account body size, and measures how well someone’s kidneys are working for them.

Your Kidneys Estimated Glomerular Filtration Rate shown on blood testing CKD Stage 1

Greater than 90

Normal

CKD Stage 2

60-89

Normal unless the patient has other symptoms

CKD Stage 3A

45-59

Mildly to moderately reduced

CKD Stage 3B

30-44

Moderately to severely reduced

CKD Stage 4

15-29

Severely decreased kidney function

CKD Stage 5

Below 15

Kidney failure End stage kidney failure when dialysis or transplant may be necessary

5

Your Kidneys

At around stage 4 when your kidney function is severely reduced your GP will refer you to a consultant nephrologist to continue your treatment and blood monitoring until dialysis treatment or transplant becomes necessary. Your renal doctor will treat matters as they arise and discuss with you your treatment options. At this stage you may need to make changes to your diet to keep your potassium levels within normal range.

Because kidneys cannot regenerate the only available treatment for kidney failure is dialysis or kidney transplant.

Dialysis will remove the excess chemicals and fluid from our body and help to keep us feeling well, along with careful fluid and dietary management and medication which your renal team will help you with.

A new kidney from a donor is the best way of treating kidney failure. However, having a kidney transplant is not always the right option for everyone. A suitable kidney could come from the transplant waiting list or from a member of your family. Your renal doctors will discuss this with you when the time comes.

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Patient Support Pack

If you have diabetes as well as chronic kidney disease extra care needs to be taken to control your blood pressure, blood sugar levels and cholesterol levels. Additional urine tests will look for protein in the urine as diabetes can cause complications for the kidney function.

Further information about any of the above is available from the National Kidney Federation (NKF) Helpline who have patient information leaflets to help you. The NKF Helpline is free to call on 0800 169 0936 and experienced advisers will speak with you about any of your concerns.

What is fluid balance?

Fluid balance is about drinking the right amount every day. Half of your body is made of water and most of what you drink (tea, fruit juice, beer) is water.

People with normal kidneys can keep the water in their body at about the same level by getting rid of fluid in their urine.

Managing your fluid intake is very important for dialysis patients.

Normally your kidneys are responsible for removing extra fluid. But when your kidneys fail they can no longer do this.

Dialysis can only remove some of the extra fluid from your body so you need to make sure you consume less.

You also lose water by sweating and on really hot days you need to drink more, but if you drink too much it will stay inside your body. Some patients on dialysis will pass some urine and this means you can drink a little bit more.

Fluid overload can result in: • breathlessness • swelling • high blood pressure • and over time, enlargement of the heart Excessive weight gain between dialysis sessions means that you need to cut back on your salt and water intake.

Controlling sodium intake will help to avoid large fluid gains, cramping and low blood pressure.

Fluid can come from obvious sources (drinks) but also from food with a high water content such as ice cream, custard, ice cubes and gravy.

Because each half litre of water weighs just over a pound (500g) your weight goes up if you start to retain water.

Retaining water can lead to high blood pressure.

However, if you don’t drink enough and you are sticky or sweating a lot, too little water in your body can make your blood pressure drop making you feel weak and dizzy when you stand.

7

Fluid Balance

WHAT DO YOU NEED TO DO? Be careful how much you drink. You will be told how much fluid you can drink by your renal nurse, doctor, or dietitian. For patients on haemodialysis this could be around two pints per day and for patients on peritoneal dialysis it could be up to three pints per day. On hot days you might need to drink a little more.

It is important to know how much you should weigh. This is called your base weight (dry weight). You need to weigh yourself regularly. If you put on a few pounds quickly then try drinking less and if you lose weight then think about drinking a little bit more. If you are not sure, you should ask your renal nurse, doctor, or dietitian.

It is important that you don’t eat much salt so you must avoid salty snacks such as crisps, as this will make you thirsty and want to drink more.

If you are producing urine and are on water tablets make sure that you take them as prescribed.

WATER TABLETS (DIURETICS) Water tablets are used to help your kidneys remove extra fluid. They are best taken in the morning (taking them at night could keep you running to the toilet during the night). Side effects can include dizziness or feeling sick – try taking the tablets with food to reduce any side effects.

Always take tablets as directed by your doctor and only stop them on the advice of your doctor.

You should see your doctor or nurse to talk about changes to your fluid balance if : • You start to find it hard to breathe • If you feel weak and dizzy when you stand up • If you notice that your ankles are swelling up

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Patient Support Pack

About anaemia

About anaemia Many patients with kidney disease have a condition called anaemia.

This means that they have a lack of red blood cells.

Blood is made up of two parts. One third is made up of blood cells which float in the remaining two thirds, which is a yellow watery liquid called plasma. There are three main types of blood cell, white blood cells which help to fight infection, platelets which help the blood to clot or thicken and red blood cells which are produced in the bone marrow which is found inside some of our bones.

RED BLOOD CELLS When we breath oxygen into the lungs it is the job of the red blood cells to carry oxygen around the body. This is very important because the oxygen carried in the blood gives us energy. Most of our blood cells are red, which is why our blood is red in colour.

HAEMOGLOBIN Haemoglobin (or Hb) is the substance inside red blood cells that carries the oxygen. Measuring the level of haemoglobin in the blood gives us a guide as to the number of red blood cells and whether a person is anaemic.

One job of the kidneys is to manage the production of red blood cells. To do this they make a hormone substance called erythropoietin (EPO). When kidneys are not working properly erythropoietin is reduced and the person can become anaemic.

If you are anaemic you may • Feel tired • Short of breath • Feel the cold • Have reduced ability to do everyday tasks • Unable to concentrate Drugs which act like the natural hormone erythropoietin have been developed in the laboratory. These drugs are called erythropoiesis stimulating agents (ESA) which is an artificial version of this hormone given to increase the number of red blood cells in the body.

9

About anaemia ERYTHROPOIETIN (EPO) More than half the people on dialysis need to take this drug.

EPO is given by injection through the skin.

You will be taught how to inject yourself with EPO. The drug will need to be kept in the fridge in its original container until injected. Because EPO is broken down in the stomach, it cannot be taken as a tablet and has to be injected. This is not as bad as it might sound. The syringe uses a needle which is so short and thin that many people hardly feel it. Different types of EPO are given at different frequencies, it might be given as frequently as 2-3 times per week up to every two weeks or once a month.

You will be shown by a nurse how to inject yourself and you will soon gain confidence. If you cannot manage to inject yourself then your partner, dialysis nurse or practice nurse can do it. If you are on dialysis you might be given EPO at the same time to avoid extra injections.

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Patient Support Pack

WHY DOES ANAEMIA CAUSE TIREDNESS? When your kidneys don’t work properly, not enough EPO is made.

This means that your bone marrow stops making red blood cells and if this happens, the number of red blood cells in your body will drop and you become anaemic.

The drop in red blood cells means that there is not enough oxygen getting around your body. Without oxygen, your body cannot get the energy it needs and so you feel tired. As a result, you can’t do some, or all, of the things you want to.

Even walking up the stairs can become a big effort.

About anaemia

THE AIM OF EPO The EPO treatment is to raise your haemoglobin to the right level (determined by your nurse or doctor) and maintain the level, so the dose of EPO you inject might be changed from time to time.

Other factors which affect your haemoglobin can be down to infection or bleeding or you could be suffering from cardiovascular disease or diabetes.

Your dose of EPO treatment might need to be changed to ensure that your haemoglobin stays at the correct level.

To get your EPO the hospital will give you a prescription and you will need to take this to the pharmacy. The hospital might ask you to get a prescription from your GP which you will need to take to your local pharmacy.

Make sure you allow at least one week to get your EPO before you run out.

Your EPO will need to be kept cool in the fridge (but not in the freezer compartment).

Treatment can take a few weeks to have an effect and you need to keep up the injections even if you don’t notice an improvement straight away.

Because the body needs iron as well as EPO to make red blood cells, your blood will also be checked for iron. If it does not have enough your doctor or nurse might decide to give you extra iron either as a tablet or through a drip. Some patients can require a blood transfusion.

11

Dialysis Treatment Choices

What happens when your kidneys don’t work ?

If your kidneys stop filtering your blood properly you may have to start dialysis. Your nephrologist will discuss with you the possibility of you receiving a transplant.

This information is designed to outline the options available to help you choose the best dialysis treatment for you.

If you are medically suitable to receive a transplanted kidney it is time to discuss this with friends or family members who could be willing to offer a kidney to you.

Haemodialysis (HD) takes the blood from your body, pumps it around a dialysis machine and through a filter (this is called an artificial kidney). You will need a permanent access in which to insert your needles for access to the dialysis machine. This access is called a fistula.

However, until you are able to receive a kidney transplant you will need to consider dialysis treatment. There are several different options for dialysis treatment and you will need to give this careful consideration so that it fits into your lifestyle and expectations.

First of all you can decide if you wish to dialyse within a renal unit with the help of dialysis nursing staff or whether you are confident to take charge of your dialysis treatment and do this within your own home, after sufficient training.

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Patient Support Pack

HAEMODIALYSIS

The filtered waste passes out of your body into the dialysis fluid, which is a manmade liquid that carries excess water and waste in the same way as your blood. The cleaned blood is then returned to your body at the same rate at which it is taken away. The ‘used’ dialysis fluid (full of waste and extra water) is pumped out of the dialysis machine and down the drain along with any excess fluids.

FISTULA An arteriovenous fistula (or AVF) is formed by joining a vein to an artery in your arm. You will need a small procedure to form an accessible blood vessel which gives an increased flow of blood that can be used for dialysis, this is called a fistula. This is the best vascular access for dialysis.

During dialysis two needles are inserted into the fistula by the nurse or the patient, whichever is preferred, and after the dialysis session they are removed.

How to take care of your fistula?

• Keep your fistula clean • Check your fistula daily – a nurse will show you how to do this. You will feel a pulse or vibration through the fistula and if you cannot feel this you must contact the renal ward immediately • Do not let anything obstruct the blood flow to your arm • Do not carry heavy objects with your fistula arm • Never allow a cannula to be inserted into your fistula arm for administration of drugs or IV fluids • Try not to scratch your fistula or do anything which can cause an injury to it

The fistula needs to be protected as this is a ‘lifeline’ and is very important to enable good dialysis.

13

Dialysis Treatment Choices

CENTRAL VENOUS CATHETER FOR HAEMODIALYSIS If dialysis is required very quickly dialysis can be done through a central venous catheter. This is a soft plastic tube about twice the length and half the width of a pen, which is placed through the skin into one of the large veins in the neck or groin at the top of the thigh. Once the dialysis line has been inserted and made secure it can be connected to the tubes on the haemodialysis machine to allow blood to be pumped from your body into the machine and back for dialysis.

Inserting the dialysis line usually takes about 30 minutes and is done under a local anaesthetic so you will remain awake.

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Patient Support Pack

SHARED HAEMODIALYSIS CARE is taking some control of your dialysis care Whilst we are used to having our healthcare provided when we go into hospital, we often feel better when we are supported to take an active role in helping to look after ourselves with support from the professionals.

If you need to have regular haemodialysis treatment in hospital or at a haemodialysis centre, you can choose to learn about, practice and even become an expert at doing some of the tasks for yourself. This is called Shared Care.

By getting involved you can feel more independent.

Evidence gathered from haemodialysis patients who have been involved in Shared Haemodialysis Care shows that they: • Have a better understanding of their condition and treatment • Feel more able to discuss their treatment with health care staff • Have more involvement in making decisions about their treatment • Feel more confident and in control • Feel more positive about attending for dialysis treatment “From an initial position of feeling nervous and overwhelmed, patients transition to confidently managing aspects of their care and describe having a greater understanding of their Kidney disease and its treatment.”

“The value of this approach where individuals gain expertise at their own pace, making choices that are right for them, contributes to a culture of shared decision making where the patient voice is heard and a team relationship thrives.”

Tania Barnes, Shared Care Training Lead.

WHAT ARE THE PRACTICAL TASKS PATIENTS CAN CHOOSE TO GET INVOLVED IN? Any or all of the following: • Measuring own weight • Measuring own blood pressure and pulse • Measuring own temperature • Collecting equipment and setting up own dialysis machine • Preparing own dressing pack ready for putting on dialysis • Programming own details into the dialysis machine • Inserting or removing fistula needles or managing other access • Commencing, monitoring or discontinuing the dialysis procedure Any of these tasks will help you to learn and feel more independent and involved.

Anyone, regardless of age or ability, can get involved in some way if they want to.

Healthcare staff are there either to carry out your dialysis care or to support you to learn about the tasks you have chosen to do yourself.

15

Shared Haemodialysis Care

Understanding more about your own care might make you feel as if you want to learn more. However, even if you become an expert, you will always be supported by the nursing staff if you are doing Shared Care.

“It’s not as hard as you first think and the nurses are always there to support you. You get a feeling of accomplishment and it helps you learn more about your machine.

I really enjoyed it.”

Some dialysis units have a self-care unit. Here you can choose to be totally independent. Alternatively, you may like to dialyse at home. Talk to your dialysis staff if this is something you would like to do.

“I consider myself as part of the team treating my illness; my conversations with the rest of the team are a lot more productive.”

What is important to know about Shared Haemodialysis Care?

• It is your choice to get involved in shared care and which tasks you wish to get involved with.

• Feeling in control comes from doing even a small task.

• You can choose to do more if you want to, or less if it doesn’t suit you.

• You will always work in partnership with shared health care staff.

• It may lead to self-care and dialysis at home if that is something you would like to do, but it is not for everyone.

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Patient Support Pack

Quotes from two patients from Sheffield and Middlesbrough.

If you would like to find out more information about Shared Haemodialysis Care you should speak to your dialysis nurse.

PERITONEAL DIALYSIS AT HOME Peritoneal Dialysis (PD) is a therapy option that uses the lining of your own abdomen to remove waste products from your blood. Here you can learn more about doing PD at home.

WHAT IS PERITONEAL DIALYSIS? If you’re starting dialysis, PD might be one of the treatment options available to you. PD is usually done at home and can even be done while you sleep.

It is also possible to do PD treatments while you travel. So it might be the right therapy if remaining mobile or having a flexible treatment schedule are important to you.

During PD, a fluid called dialysis solution (or dialysate) passes into your abdomen through a catheter. Once the dialysis fluid has flowed into your abdomen, it stays there, cleaning your blood by absorbing any waste and excess fluid. This happens because of two processes called osmosis and diffusion, which allow the waste and fluid to be transferred from your blood into the dialysis solution.

After a period of between 1 and 4 hours, the dialysis solution containing the waste and excess fluid from your body is drained out of your abdomen through your catheter. This whole process is called an exchange.

There are two forms of PD: continuous ambulatory peritoneal dialysis (CAPD) and automated peritoneal dialysis (APD).

The basic treatment is the same for each, but the way the exchanges are done, and the number of exchanges needed, are different.

PD is done at home, typically by yourself, and occasionally with the support of a caregiver. Doing dialysis at home means that you can tailor your treatments to your lifestyle, rather than the other way around. For example, PD may give you the opportunity to work, study or travel.

Since PD is normally done every day, this flexibility may be a big benefit for you.

In terms of how the therapy feels, PD is considered a painless therapy, and does not involve the use of needles on a consistent basis. You may, however, experience a sense of fullness after therapy, depending on the prescription your physician determines is appropriate for you.

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Dialysis Treatment Choices

WHAT IS CONTINUOUS AMBULATORY PERITONEAL DIALYSIS (CAPD)?

CAPD is a type of PD that uses gravity, rather than a machine, to ‘exchange’ your old dialysis solution for fresh solution.

To do this, a bag of dialysis solution is connected to a tube that goes into your abdomen. The exchange starts by placing the drain bag portion of the system on the floor and draining out the used solution in your peritoneal cavity (effluent). The new solution bag is hung above your head on a coat stand or hook on the wall, and then gravity is used to pull the fresh solution into your abdomen.

Once this is completed, the system is disconnected from your catheter and you are free to move about until your next exchange. Each of these exchanges lasts about 20 minutes.

If you are on CAPD your abdomen will always contain dialysis solution and each time it is exchanged, you’ll go through the following steps: Connect • You will connect a new bag of dialysis solution to your catheter using a ‘non-touch’ technique, which will be taught to you by your clinician.

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Drain • The existing dialysis solution inside your abdomen is drained out, removing the waste and excess fluid from your body.

Flush • Your catheter is flushed with new dialysis solution to wash away any germs that may have got onto the end of it during connection.

Fill • Once your abdomen has been completely drained of the old dialysis solution and the flush is complete, your abdomen is filled with fresh dialysis solution.

Disconnect • When the new solution has filled your abdomen, the tubing and bags are disconnected using the ‘non-touch’ technique. The fluid is thrown away and the empty bags are discarded.

Your PD catheter will remain in place and be protected with a sterile cap and may be tucked away when the exchange is complete. Between now and the next exchange, dialysis is cleaning your blood. This is known as the ‘dwell’ period. You are free to move around and be involved in normal activities until your solution needs to be replaced again.

This CAPD exchange process is done between 1 and 4 times per day, depending on your dialysis requirements.

Each exchange takes about 20 minutes to perform. Your clinicians will discuss your medical and lifestyle needs with you in order to determine your individual dialysis prescription.

CAPD is termed a ‘continuous’ therapy.

This has several benefits in comparison to other types of dialysis. Waste products and excess fluid can be controlled more easily during the treatment process, which may reduce stress on your body.

If you’re doing CAPD, you might be able to eat more of the foods you enjoy and take fewer medications than if you were doing haemodialysis (HD). CAPD equipment is also more portable than other types of dialysis equipment, so it’s possible for you to continue doing normal daily activities while you’re performing treatment, and it is easier for you to do your dialysis in other places, such as a workplace or a relatives’ home.

WHAT IS AUTOMATED PERITONEAL DIALYSIS (APD)?

APD is a form of PD that uses a machine called a cycler to perform dialysis exchanges. The cycler is programmed to give you the dialysis treatment by your clinician. Typically, an APD programme lasts between 8 and 12 hours, and is performed overnight.

Before each treatment, your APD cycler is set up with tubing that connects it to 10-15 litres of clean dialysis solution.

A cycler tube is then connected to your catheter. The APD cycler is programmed to control the movement of clean dialysis solution into your abdomen by the machine. It drains the used dialysis solution from your body and replaces it with new solution at regular intervals throughout the therapy. You will have to set up the dialysis machine with fresh equipment and dialysis fluid every time you do your APD therapy. Since every patient needs a different amount of dialysis, your APD cycler’s program will be customised to your specific needs.

19

Dialysis Treatment Choices

During each APD treatment the cycler will automatically perform your therapy, made up of the following steps: Drain • The cycler drains the used dialysis solution from your abdomen, removing the waste and excess fluid from your body.

Fill • Once the cycler has completely drained your abdomen of the old solution, it fills it with fresh dialysis solution.

Dwell • When the new solution has filled your abdomen, your cycler will leave the new solution in your peritoneal cavity for a set time period. After this time has finished, the cycler will repeat these three steps again. These three steps are called an exchange, or cycle.

The dialysis machine will perform several exchanges throughout the prescribed treatment time.

APD treatment usually lasts between 8 and 12 hours, depending on your medical and lifestyle requirements.

It is typically done while you sleep, giving you the freedom to carry on your normal activities during the day. For the treatment to be completed, you need to be connected to your APD cycler.

However, it is possible to temporarily disconnect from the machine if necessary. There is also sometimes

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Patient Support Pack

longer tubing that allows you more freedom to move around while you’re connected to the machine. Sometimes patients may need to do extra daytime dialysis exchanges. Your clinician will advise you if this is necessary.

APD helps control the excess waste and fluid during treatment, which can help reduce the stress on your body. It may also provide you increased flexibility with your diet and the number of medications you need to take while on dialysis. Your treatments will normally happen at night, which may make it easier for you to continue working, studying or socialising during the day. You will need to prepare your cycler each day and discard the used equipment after your treatment has finished.

BENEFITS OF PERITONEAL DIALYSIS Peritoneal dialysis may be the right treatment for you if you work, study or travel regularly and if it suits your lifestyle and medical and physical condition.

Doing PD at home increases the flexibility and independence of your life on dialysis.

It can save you frequent trips to the hospital or clinic and gives you more freedom to do the activities you love.

LEARNING TO PERFORM PERITONEAL DIALYSIS The idea of performing PD at home may make you feel anxious, but it is actually quite a manageable process. Almost everybody can perform PD with proper training. In most cases, this will usually require between 2 and 5 days of training, depending on what type of PD therapy you choose.

Your clinician will schedule training for you that will include: • Setting up your treatment area • Caring for your catheter exit-site • Performing PD treatment • Washing your hands to ensure safe handling of PD solutions • Storing and ordering supplies for treatment • Keeping manual treatment logs (if necessary) • Measuring your own blood pressure, pulse, temperature and weight • Recognising and reporting problems with your treatment • Managing your diet and fluid intake You will not have to perform at-home PD by yourself until you and your clinician feel that you are ready. Even after this, you will not be alone with your treatment – always remember that your healthcare team is ready to support you at any time.

While performing PD at home, you will still have regular appointments with your healthcare team and will be able to ask him or her questions about your treatment or about how to get connected with other resources that can help.

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PERSONAL INFORMATION

Personal Information Physiotherapist:

Social Worker:

Social Services:

Chaplain:

Chemist:

Clinical Waste Removal:

Hospital Transport:

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Personal Information

Personal Information PATIENT NAME : Address: D.O.B.:

Home Tel:

Work Tel:

Mobile:

Email: Blood Type: Your hospital records number: Hospital address: Hospital Contact Number: Consultant: Your Nurse: Renal unit direct line number: Renal outpatient number: GP Name: Surgery address: Surgery Tel: Practice Nurse: District Nurse:

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Patient Support Pack

Appointment Record Sheet DATE

TIME

WITH

LOCATION

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Appointment Record Sheet

Appointment Record Sheet DATE

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Patient Support Pack

TIME

WITH

LOCATION

Appointment Record Sheet DATE

TIME

WITH

LOCATION

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PATIENT SESSION DETAILS

Haemodialysis Session Details Date of issue:

Unit No.:

Name:

D.O.B.:

Address:

Tel. Number: Named Nurse: Team: DAY

MON

TUES

WED

THUR

FRI

SAT

SUN

TIME Heparin dose:

Concentrate used:

Dialyser size: Frequency and duration:

Your daily fluid allowance is:

Telephone Numbers Dialysis Unit:

Ext:

Renal Ward:

Ext:

Mode of Transport:

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Patient Support Pack

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Haemodialysis Session Attendance Sheet

Haemodialysis Session Attendance Sheet Date

Signature

Date

Signature

Date

Signature

This needs to be presented to a member of staff each time you attend 30

Patient Support Pack

Haemodialysis Session Attendance Sheet Date

Signature

Date

Signature

Date

Signature

This needs to be presented to a member of staff each time you attend 31

Haemodialysis Session Attendance Sheet

Haemodialysis Session Attendance Sheet Date

Signature

Date

Signature

Date

Signature

This needs to be presented to a member of staff each time you attend 32

Patient Support Pack

Peritoneal Dialysis Session Details Date of issue:

Unit No.:

Name:

D.O.B.:

Address:

Tel. Number: Named Nurse: Team: Number of bags per day: Bag strength: Your daily fluid allowance is: Bag delivery company: Tel Number:

Telephone Numbers Dialysis Unit:

Ext:

Renal Ward:

Ext:

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Erythropoietin (EPO) and Blood Pressure (BP) record card

Erythropoietin (EPO) and Blood Pressure (BP) record card Date

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Patient Support Pack

BP

EPO Dose

Signature

Erythropoietin (EPO) and Blood Pressure (BP) record card Date

BP

EPO Dose

Signature

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EPOTherapy record

EPO Therapy record PATIENT NAME: Hospital Number:

D.O.B.:

Grant funded: Yes / No GP Name: Surgery Address: GP Tel. Number: Named Nurse: Unit Tel Number: Type of EPO used: Route of administration:

Date

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Hb

Patient Support Pack

SC / IV:

Total Dose per week

Dose interval

Dose per injection

EPO Therapy record Date

Hb

Total Dose per week

Dose interval

Dose per injection

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EPO Therapy record

EPO Therapy record Date

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Hb

Patient Support Pack

Total Dose per week

Dose interval

Dose per injection

Iron Therapy record Date Started: GP funded: Yes / No Type of iron used: Iron measurement used: IRON STATUS Date

Value

IRON TREATMENT Date

Drug

Dose

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Iron Therapy record

Iron Therapy record IRON STATUS Date

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Value

Patient Support Pack

IRON TREATMENT Date

Drug

Dose

Iron Therapy record IRON STATUS Date

Value

IRON TREATMENT Date

Drug

Dose

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Iron Therapy record

Iron Therapy record IRON STATUS Date

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Value

Patient Support Pack

IRON TREATMENT Date

Drug

Dose

Medication Details PATIENT NAME:

D.O.B.:

Address:

Medical problems/allergies:

Name of Medicine

Reason for taking medicine

Dose

Where to get prescription

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Medicines card

Medication Details Name of Medicine

44

Reason for taking medicine

Patient Support Pack

Dose

Where to get prescription

Medication Details Name of Medicine

Reason for taking medicine

Dose

Where to get prescription

45

Medicines card

Medication Details Name of Medicine

46

Reason for taking medicine

Patient Support Pack

Dose

Where to get prescription

ABOUT THE NKF

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Patient Support Pack

About the NKF THE NKF IS A WIDELY SUPPORTED KIDNEY PATIENT CHARITY IN THE UK, RUN BY KIDNEY PATIENTS, FOR KIDNEY PATIENTS. Originally formed in 1978 to represent the interests of all Kidney patients, both present and future, throughout the UK. For over 45 years, the aim of the charity has continued to have two main roles: • To provide an array of National Patient Support Services • And to campaign for improvements to renal provision and treatment NKF Freephone Helpline The NKF Freephone Helpline is the only free UK Helpline service dedicated to kidney patients, their families, renal units and health care professionals. The Helpline is manned by two fully trained, experienced advisers.

The NKF Helpline is available Monday to Thursday 8:30am - 5:00pm and Friday 8:30am - 12:30pm on 0800 169 0936 or email helpline@kidney.org.uk NKF Helpline Information Leaflets Patient education is of paramount importance for individuals dealing with Kidney related issues, and the NKF Helpline plays a crucial role by providing and extensive range of kidney related materials. Our collection comprises over 200 different leaflets, covering every facet of kidney disease. These materials serve as a lifeline for individuals grappling with kidney related concerns, offering comprehensive insights not only into the disease itself but also addressing the future implications for them and their families.

We can create and distribute hundreds of Helpline Information leaflets specificallyfor kidney patients throughout the UK, from travel insurance, dialysis, dietary advice, transplantation and living donors.

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Patient Support Pack

About the NKF Simply call the NKF Helpline on 0800 169 09 36 and our Helpline team can download the information for you and post that very same day or visit: www.kidney.org.uk/helpline-leaflets

The NKF Helpline, dialysis and transplant cards can be kept in your purse or wallet to alert paramedics in an emergency. These cards will inform medics that you are a kidney patient and to take extra care. These cards are being offered to dialysis and transplant clinics, but if you would like one sending free of charge in the post, please contact the Helpline team on helpline@kidney.org.uk or call 0800 169 09 36.

NKF Peer Support Service Our National Peer Support Service is a safe space where people can connect with our ‘peers’ to converse about lived experiences and they are there to support you.

This might be over the phone, online, or in person.

Our free Peer Support Service is for...

• Individuals who have kidney disease • Family members, partners or carers of somebody with kidney disease The UK-wide national service offers an opportunity for individuals to have a one-to-one chat with a fully trained peer supporter who may have similar life experiences and lifestyle stories. Whatever the experience or query you may have surrounding kidney disease, we can connect you with one of our peer supporters.

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About the NKF Example topics you may need support on: • Chronic Kidney Disease • Caring for somebody with kidney disease • CKD & Diabetes • Dialysis • Transplantation • Wanting to donate

All our peer supporters are fully trained and DBS checked and are between the ages of 20-80 years old.

They possess a wide range of experiences including: • Shared care • Peritoneal Dialysis • Haemodialysis • Home Haemodialysis • Nocturnal Haemodialysis • Balancing employment while on home dialysis • Studying while on home dialysis • Managing home dialysis with a young family • Travelling while on home dialysis • Dealing with Chronic Kidney Disease and Diabetes • Preparing to give or receive a transplant • Post-transplant • Experiencing transplant rejection • Receiving a kidney from a living donor • Receiving a kidney from a deceased donor Thank you to the generosity of The National Lottery Community Fund for their funding of the NKF Peer Support Service.

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Patient Support Pack

If you would like to talk with an NKF Peer, please call the NKF Helpline on 0800 169 09 36.

You or a healthcare provider can also make an online request for peer support, by using our online patient referral form. For more information about the NKF Peer Support Service or to make an online referral, please visit: www.kidney.org.uk/peer-support

NKF Website Our Website is often the first step in someone getting in touch with the National Kidney Federation. It’s the place patients and those important to them go to find vital information to make informed choices about their care. Our website is also home to multiple resources, including videos, leaflets and articles.

Visit the NKF Website: www.kidney.org.uk You can also find your local Kidney Patients’ Association (KPA) via the NKF website here: www.kidney.org.uk/kidney-patient-associations What does a KPA do?

The primary role of a KPA is to offer guidance, assistance, and local support to individuals at all stages of kidney disease, including those who are pre-dialysis, undergoing dialysis, or have received a transplant. In addition to aiding patients, KPAs also provide support to families and loved ones, helping them navigate the challenges associated with kidney disease. Through fundraising, social events, and peer support, KPAs play a crucial role in improving the wellbeing and quality of life for kidney patients and their local communities.

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Independence Products

A big thank you to Independence Products for their sponsorship of this patient support pack Shower Safely - With the Independence shower protection pouch The Independence VAP Shower Pouch is a specialised product designed to safeguard patients with central venous catheters (CVCs) during showering.

The Independence VAP Shower Pouch is easy to apply and provides a secure, watertight seal with its medical-grade adhesive. Soft, flexible, and latex-free for added comfort.

Clinically tested and proven to provide an effective barrier against water-borne bacteria, this pouch prevents water from reaching the CVC exit site and external catheter components. It is a trusted solution for improving patients’ quality of life, used and endorsed by healthcare professionals and patients nationwide.

Patient testimonial “These pouches provide you with dignity... means you can live as normal a life as possible with all of the life changing aspects that come with dialysis!” (Dialysis patient using VAP) Who are Independence Products [IPL] ?

IPL’s mission is to improve quality of life for people with kidney disease by developing and manufacturing innovative healthcare solutions. Driven by experienced leadership and a commitment to continuous improvement. Our products have been developed to keep people safe and to support self-care.

People Focussed You are at the heart of everything we do, from product conception to delivery.

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Patient Support Pack

0115 975 7254 ENQUIRIES@IPL.UK.COM WWW.IPL.UK.COM

UNIT 7J BLENHEIM PARK ROAD NOTTINGHAM NG6 8YP

Care & Compassion We call you monthly to update your prescription needs and to see if you have any queries we can answer.

One Service Patient Services, Prescription Services and a Home Delivery Service all in one.

Easy Application to Secure Your CVC The Independence VAP shower pouch & The Independence Activity Pouch is available on prescription. Please contact our friendly patient services team to order a free sample or to find out more.

Call 0800 160 1399 or email enquiries@ipl.uk.com or scan the QR code.

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BECOME A MEMBER https://bit.ly/nkfmembership

JOIN NOW!

Join the NKF Community and Make a Difference.

From just £3 a month—you can join the NKF community.

Your membership will help us continue providing essential support to kidney patients and their families across the UK.

You'll get a 10% off voucher to spend on our online shop. Plus, exclusive member discount days.

You'll receive exclusive invites to our NKF special events. Plus, exclusive discounted rates to our Annual NKF Event.

Be the first to know about upcoming sales, events, and more...

Our Helpline is a lifeline -Help us answer more calls for support.

Your knowledge is power - Help us to empower patients and be in control of their health choices.

Let’s shape futures together. Help us to raise big kidney challenges and voice real solutions in Parliament.

Together we’re stronger. Help us recognise and support local voices.

Together, we can bring hope and support to kidney patients and their families across the UK. Join now https://bit.ly/nkfmembership

BECOME A MEMBER TODAY! Your contribution makes a real difference in the lives of kidney patients across the UK. Please complete this form and return it to: National Kidney Federation, The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire, S81 8BW / or email: nkf@Kidney.org.uk

I wish to become a member of the NKF of:

£3

£5

£10

Other: £ ______________ (a month)

Full Name: Address:

Postcode: Email Address: Contact Number: Name of Account holder: Bank Name / Address: Postcode: Sort code:

Account Number:

Expiry Date: CVV / Security Number:

If you would like to become a member over the phone, please call 01909 544 999 or alternatively visit: www.kidney.org.uk/donate/membership

JOIN NOW!

Charity Nos. 1106735 SC049431 Company No. 5272349 Registered in England & Wales

NKF HELPLINE: 0800 169 09 36 Registered Office: The Point | Coach Road | Shireoaks Worksop | Nottinghamshire S81 8BW @NKF_UK @KidneyNKF @nkf.uk @NKFUK @nationalkidneyfederation5995

T: 01909 544999 | E: nkf@kidney.org.uk www.kidney.org.uk Charity Nos. 1106735 SC049431 Co. No. 5272349 Reg. in England & Wales Give as You Earn contribution No. CAFGY511