n The Leeds Teaching Hospitals NHS Trust

HaemodialysisHaemodialysis WelcomeWelcome BookletBooklet

InformationInformation forfor patientspatients 2 Contents Contacts Page 4 Welcome to the Dialysis Unit Page 4 What to expect Page 6 Kidneys - How do they work, what do they do? Page 8 Haemodialysis Page 9 Vascular access Page 10 Shared Care in Haemodialysis Page 18 Attending for dialysis Page 20 PatientView Page 21 Blood tests and what they mean Page 22 Carbapenemase-producing enterobacteriaceae (CPE) screening Page 26 COVID-19 (Coronavirus) information Page 30 Medication Page 31 Dietary information and guidance Page 33 What can you do? Page 35 Dialysis away from base Page 36 Renal Clinical Psychologist Page 39 Social Worker Page 41 What happens to your information Page 43 End of life care (Conservative Management) Page 44 Your Notes Page 47

2 3 Contacts The contact number for your dialysis unit is:

The Unit Manager is:

My Consultant is:

My Dialysis Slots

Welcome to the Dialysis Unit Welcome to the Haemodialysis Service. Dialysis treatments vary, however the majority of patients attend for treatment three times a week. All units are open Monday to Saturday with the exception of Ward J48 which runs 24 hours, 7 days a week.

4 Contacts Appointment times are: • Morning The contact number for your dialysis unit is: • Afternoon • Early Evening Shift The Unit Manager is: • Twilight - 7pm (Ward J48 at St James’s only, ) • Night - Midnight (Ward J48 at St James’s only)

My Consultant is: Each dialysis treatment takes four hours although this can sometimes be longer or shorter. You will be allocated an appointment time – on the same day and at the same time each week. However, this may need to be altered in order My Dialysis Slots to accommodate new patients who also require lifesaving treatment.

We have a number of dialysis units across the region; these are: • Ward J48 Dialysis Unit - 1st Floor, Lincoln Wing, St James’s Hospital, Leeds, LS9 7TF. • Beeston Dialysis Unit - James Reed House, Beeston Village Medical Centre, Town Street, Beeston, LS11 8PN. • Dewsbury Dialysis Unit - Staincliffe Wing, Dewsbury District Hospital, WF13 4HS. Welcome to the Dialysis Unit • Halifax Dialysis Unit - Calderdale Royal Hospital, Welcome to the Haemodialysis Service. Dialysis Salterhebble, Halifax, HX3 0TW. treatments vary, however the majority of • Huddersfield Dialysis Unit - Acre Street, Lindley, patients attend for treatment three times a week. Huddersfield, HD3 3EA All units are open Monday to Saturday with the exception of • Pontefract Dialysis Unit - Friarwood Lane, Pontefract, WF8 1PL. Ward J48 which runs 24 hours, 7 days a week. • Seacroft Units - R&S Ward/B Ward - Seacroft Hospital, Leeds, LS14 6UH.

4 5 Despite receiving dialysis at one of these units your care will remain the responsibility of Leeds Teaching Hospitals and their Consultants. There may be a need to change where you have your treatment and/or your appointment times. We will discuss this with you if the need should arise.

What to expect When you arrive at the dialysis unit for your appointment time, you will be asked to wait in the waiting area. The nursing staff will call you when your dialysis station is ready. Please be patient, there may be a wait, as staff need time to make sure all areas are thoroughly cleaned and prepared for you. We are keen to support ‘Shared Care’ on the dialysis unit. This means we support patients to participate and learn any aspect of the dialysis preparation and/or therapy. • Before treatment you will need to be weighed and have your blood pressure and pulse taken. Your hands will need to be washed. • Your fistula or graft will need to be washed and dried before being settled on your dialysis chair or bed. • It is advisable to wear comfortable, loose fitting clothing when you attend for treatment. • Please bring with you any medication you may need, particularly your phosphate binders, as you will be offered a light snack during your treatment.

6 Despite receiving dialysis at one of these units your care will While you are with us some of the people you may see will remain the responsibility of Leeds Teaching Hospitals and their include:While you are with us some of the people you may see will Consultants. •include: Renal consultant There may be a need to change where you have your • Renal nursingConsultant staff treatment and/or your appointment times. We will discuss this • Renal matronnursing staff with you if the need should arise. • SpecialistRenal Matron renal dieticians • Specialist renal dieticians What to expect • Advanced clinical practitioners • Advanced clinical practitioners When you arrive at the dialysis unit for your • Research nurses appointment time, you will be asked to wait • YorkshireResearch nursesAmbulance Service staff in the waiting area. The nursing staff will call • Yorkshire Ambulance Service staff you when your dialysis station is ready. Please be patient, there may be a wait, as staff need time to Practitioner make sure all areas are thoroughly cleaned and prepared for Treatment Shared Care you. Pharmacist CPE Friends Screening Condition

Help Service Monitor

We are keen to support ‘Shared Care’ on the dialysis unit. This Doctor Plan Support means we support patients to participate and learn any aspect Ward Renal of the dialysis preparation and/or therapy. Fair Carer • Before treatment you will need to be weighed and have Patient your blood pressure and pulse taken. Your hands will need Medicine Diagnosis to be washed. Quality Diatician Health Staff Unit Appointment Machine • Your fistula or graft will need to be washed and dried Nurse Results

Patient Centred Clinic

Haemodialysis Referral Procedure before being settled on your dialysis chair or bed. Family Leeds Hospital Care • It is advisable to wear comfortable, loose fitting clothing when you attend for treatment. DialysisInformation Kidney Operation • Please bring with you any medication you may need, Tests Lifesaving particularly your phosphate binders, as you will be offered a Comfort light snack during your treatment.

6 7 7 Kidneys - How do they work, what do they do?they do? Most people have two kidneys, bean shaped organs about 12 centimetres long, 6cm wide and 3cm thick. Each kidney weighs about 150grams and lie deep inside the body and sit under the lower ribs at the back. The left kidney is located slightly morehigher superior than the than right the kidney right kidneydue to thedue largerto the size larger of thesize liverof the on liver the righton the side right of sidethe body.of the body. Normal healthy kidneys: Normal• Clean healthy waste products kidneys: from the blood • CleanRemove waste excess products fluid from the blood • RemoveHelp to controlexcess fluidblood pressure • Help to controlmake red blood blood pressure cells • HelpProduce to make vitamin red D blood for healthy cells strong bones • Produce Vitamin D for healthy strong bones

8 Kidneys - How do they work, what do they Haemodialysis do? Most people have two kidneys, bean shaped organs about 12 centimetres long, 6cm wide and 3cm thick. Each kidney weighs about 150grams and lie deep inside the body and sit under the lower ribs at the back. The left kidney is located slightly more superior than the right kidney due to the larger size of the liver on the right side of the body.

Normal healthy kidneys: • Clean waste products from the blood • Remove excess fluid Haemodialysis treatment involves the blood being cleaned or • Help to control blood pressure filtered using a haemodialysis machine. • Help to make red blood cells Haemodialysis is is usually usually undertaken undertaken three three times times per per week week and and takes approximatelyapproximately four four hours hours on on each each occasion. occasion. Dialysis Dialysis slots slots • Produce Vitamin D for healthy strong bones are Monday, WednesdayWednesday and and Fridays Fridays or or Tuesday, Tuesday, Thursday Thursday and and Saturday.Saturday (Ward J48 are Monday, Wednesday and Friday or Tuesday, Thursday and Sunday). Some patients have haemodialysis in their own homes. If you wouldSome patients like to explore have haemodialysis this treatment in optiontheir own please homes. mention If you thisare suitableto the staff to have on the dialysis unit whoat home, can arrange this can forbe youdiscussed to meet thewith Home our Home Haemodialysis Haemodialysis Team. Team. Haemodialysis is usually commenced gradually over three sessions and a treatment programme will be prescribed to your individual needs. You will be allocated an appointment time – on the same day andday andat the at samethe same time time each each week. week. However However, this maythis isneed subject to beto changealtered into orderaccommodate to accommodate new patients new patientswho also who require also lifesavingrequire lifesaving treatment. treatment. 8 9 Vascular access Haemodialysis requires access to the blood system; we refer to this as the vascular access. There are three different options for this: Aa fistulafistula (preferred first choice), a graft or a dialysis lineline..

Fistula A fistula is formed during an operation. During the operation the surgeons join a vein and an artery together; this is usually in the lower or upper arm. This increases the blood flow into the vein which enlarges the vein enough to make it suitable for the insertion of dialysis needles. This operation is not always possible for every patient and an alternative procedure of a graft may be offered.

How will I get a fistula? An appointment will be made for you to have an ultrasound scan of the veins in your arms. Following this you will receive afurther clinic appointmentinformation from with thethe specialistsurgeons teamto discuss to discuss the options the availableoptions available to create to a createfistula. a Depending fistula. Depending on where on the where the fistula will be, it may be created under a local anaesthetic or nerve block (which numbs the whole arm) and you would wouldbe discharged be discharged the same the day. same Alternatively day. Alternatively you may you require may a requiregeneral aanaesthetic general anaesthetic which may which require would you requireto stay overnight.you to stayYour overnight. fistula will Your be monitored fistula will at be outpatient monitored appointments at outpatient to appointmentsassess how it has to assessdeveloped how andit has further developed ultrasounds and further may be ultrasoundsrequired. may be required.

10 Vascular access Benefits of having a fistula Haemodialysis requires access to the blood system; A fistula is the best possible form of access for haemodialysis we refer to this as the vascular access. There are and provides the safest, most efficient way to receive regular three different options for this: A fistula treatment. However if a problem does occur you need to (preferred first choice), a graft or a dialysis line. report this to the dialysis staff, so that they can act quickly.

Fistula Risks of having a fistula include: A fistula is formed during • Clotting - Occasionally fistulas can clot. If you cannot feel an operation. During the the usual ‘buzzing’ over the fistula or if it weakens contact operation the surgeons join a the dialysis staff. Clots can be removed by surgery or by vein and an artery together; other procedures where clots can be dissolved. this is usually in the lower or • Bruising or swelling - This often occurs when the fistula is upper arm. This increases the new and is due to the needle piercing the fistula or graft blood flow into the vein which wall allowing blood to leak into the tissue. All bruising and enlarges the vein enough to swelling should be reported to the dialysis staff. make it suitable for the insertion of dialysis needles. This • Allergies - If your fistula becomes red, itchy or sore it may operation is not always possible for every patient and an be due to the application of creams, cleaning products or alternative procedure of a graft may be offered. dressings, let your nurse know. How will I get a fistula? • Aneurysm - This is a swollen area that can occur over time due An appointment will be made for you to have an ultrasound to the needles being put in the same area. If the skin becomes scan of the veins in your arms. Following this you will receive thin or shiny or you can see a pulse under the skin or swollen a clinic appointment with the surgeons to discuss the options area appears suddenly, please tell the dialysis staff. available to create a fistula. Depending on where the • Steal Syndrome - This can occur if your hand is not receiving fistula will be, it may be created under a local anaesthetic a good enough blood supply. When a fistula is created some or nerve block (which numbs the whole arm) and you of the blood supply is diverted or ‘stolen’ by the fistula. Let would be discharged the same day. Alternatively you may the dialysis staff know if you experience pain, coldness or require a general anaesthetic which would require you to tingling in the fingers or hand on your fistula arm. stay overnight. Your fistula will be monitored at outpatient appointments to assess how it has developed and further • Redness or heat - Sometimes together with swelling and ultrasounds may be required. pain, can be signs of infection. Please contact the dialysis unit immediately.

10 11 • Narrowing of the fistula - Narrowing of a fistula can result in poor flows when you are on the dialysis machine, bleeding post dialysis or swelling of the arm and hand. This condition may require a procedure called fistulaplasty to open or widen the narrowing. If this is something that is required you will have further discussion with your team. • Scab - If a scab over your needle site does not heal quickly or gets larger let the dialysis staff know as this can lead to a risk of bleeding. • Bleeding - The flow of blood through the fistula is much stronger than through ‘normal’ veins which can increase the risk of bleeding: • Bleeding• Bleeding during during dialysis dialysis - If - bloodIf blood starts starts to toooze ooze around around youryour needles needles during during dialysis dialysis or orit takesit takes longer longer to tostop stop bleedingbleeding at atthe the end end of oftreatment treatment tell tell the the dialysis dialysis staff staff immediately.immediately. • Bleeding• Bleeding at athome home - Occasionally - Occasionally a fistula a fistula may may start start to to bleedbleed at athome, home, if thisif this happens happens it shouldit should stop stop quickly quickly when firmwhen pressure firm pressureis applied. is However,applied. However, although although this is a very this rareis aoccurrence, very rare occurrence, you should youknow should what know to do whatif profuse to do bleedingif profuse occurs bleeding from youroccurs fistula from or your graft fistula site unexpectedlyor graft site betweenunexpectedly dialysis betweensessions. dialysis sessions.

This is is a a medical medical emergency emergency

Apply firm pressure at the bleeding point. Use gauze or two fingers. Do not use a large dressing like a towel as this may stop you applying enough pressure in the right place.

12 • Narrowing of the fistula - Narrowing of a fistula can Get help from anyone that is around, the blood flow can be result in poor flows when you are on the dialysis machine, fast and make you feel faint so DO NOT delay in alerting others. bleeding post dialysis or swelling of the arm and hand. This condition may require a procedure called fistulaplasty to Ring ‘999’ for paramedic assistance open or widen the narrowing. If this is something that is required you will have further discussion with your team. Where will my fistula be? • Scab - If a scab over your needle site does not heal quickly Preferably your fistula will be formed in your non-dominant or gets larger let the dialysis staff know as this can lead to a arm unless this is unsuitable. The surgeon will discuss with you risk of bleeding. the most appropriate site after assessments of both arms have been made. • Bleeding - The flow of blood through the fistula is much stronger than through ‘normal’ veins which can increase the What to expect after the fistula operation? risk of bleeding: On returning to the ward, the nursing team will check your • Bleeding during dialysis - If blood starts to ooze around temperature, pulse and blood pressure as well as regular your needles during dialysis or it takes longer to stop checking of the fistula itself. This will involve listening to bleeding at the end of treatment tell the dialysis staff the ‘bruit’ which is a whooshing sound heard through a immediately. stethoscope around the fistula. The presence of a bruit is an • Bleeding at home - Occasionally a fistula may start to indicator that there is a good blood flow through the fistula. bleed at home, if this happens it should stop quickly On touching the fistula you may feel a buzzing sensation. The when firm pressure is applied. However, although this nursing staff will show you how to feel for this sensation and is a very rare occurrence, you should know what to do check your fistula. if profuse bleeding occurs from your fistula or graft site unexpectedly between dialysis sessions. Initially there may be some bruising but this should resolve within a couple of weeks. You may feel some discomfort and you can have pain relief for this, inform the nursing staff if This is a medical emergency you do have pain or discomfort.

Apply firm pressure at the bleeding After Discharge point. Use gauze or two fingers. Do not There will be a small sterile dressing over the incision site use a large dressing like a towel as this which can be removed after 48 hours after your operation and may stop you applying enough pressure kept clean and dry. You can shower after 48 hours providing in the right place. you carefully pat the wound dry.

12 13 Important Points • You need to check the thrill/bruit of the fistula every four hours initially, by placingby placing your your first first two two fingers fingers gently gently over the wound site or just above. You will need to check your fistula at least once a day. Please contact your dialysis unit immediately if your hand becomes excessively swollen or becomes painful, if the appearance changes or you cannot feel the usual thrill. • Avoid any pressure on your arm or wrist as this may cause the thrill/bruit to stop or a clot to form inside. This includes tight fitting clothing or jewellery, shopping bags looped over your arm. • Avoid any heavy lifting for the first two weeks to allow healing to take place. • Avoid sleeping on your fistula arm. • Do not let anyone use this arm for taking blood samples or checking blood pressure.

Skin Care The frequent use of antiseptic skin cleansers and tapes used at dialysis can lead to a disruption in the normal barrier function of the skin. As a result skin can become itchy, sore, red and flaky which can increase the risk of developing a skin infection. We recommend that you apply a non-perfumed moisturiser to the skin on your fistula arm each day. Always wash your hands before touching your fistula and make sure staff do the same. The arm should be washed with soap and water when attending for dialysis. 14 Important Points Graft • You need to check the thrill/bruit of A graft is an artificial tube inserted the fistula every four hours initially, by during an operation, one end is attached placing your first two fingers gently to an artery and the other end attached over the wound site or just above. to a vein. Again this will usually be in the You will need to check your fistula at upper or lower arm, sometimes in the least once a day. Please contact your thigh. dialysis unit immediately if your hand becomes excessively swollen or becomes painful, if the How will I get a graft? appearance changes or you cannot feel the usual thrill. A graft operationoperation will will always always require require a a • Avoid any pressure on your arm or wrist as this may cause general anaestheticanaesthetic and and an an overnight overnight stay. the thrill/bruit to stop or a clot to form inside. This includes stay.Grafts Grafts can sometimes can sometimes be used be immediately used tight fitting clothing or jewellery, shopping bags looped immediatelyor within a couple or within of weeks. a couple of weeks. over your arm. Dialysis Line • Avoid any heavy lifting for the first two weeks to allow A dialysis line is a flexible tube, which is put into one of the healing to take place. large veins in the neck and held securely in place by a cuff • Avoid sleeping on your fistula arm. under the skin or by two stitches. • Do not let anyone use this arm for taking blood samples or AsAs soon soon as as the the line line has has been been inserted, inserted, it it checking blood pressure. cancan be be used used for for haemodialysis. haemodialysis. Skin Care TheThe line line is is divided divided into into two two ‘lumens’. ‘lumens’. The frequent use of antiseptic skin cleansers and tapes used at DuringDuring dialysis, dialysis, blood blood flows flows to to the the dialysis can lead to a disruption in the normal barrier function machinemachine through through one one lumen lumen and and back back of the skin. As a result skin can become itchy, sore, red and flaky intointo your your body body through through the the other other lumen. which can increase the risk of developing a skin infection. Yourlumen. line Your provides line providesa way for a theway dialysis for the machinedialysis machineto clean yourto clean blood. your The blood. point We recommend that you apply a non-perfumed moisturiser to whereThe point the tubingwhere entersthe tubing the skin enters is called the the skin on your fistula arm each day. anskin ‘exit is calledsite’. Lines an ‘exit can site’. be temporary Lines can beor Always wash your hands before touching your fistula and moretemporary long term. or more long term. make sure staff do the same. The arm should be washed with soap and water when attending for dialysis. 14 15 Risks of having a line include: • Infection - The nursing staff will check your line and the exit site at each dialysis session for any signs of infection. You must contact your dialysis unit immediately if you notice: • the skin around your dialysis line is sore, red or has a discharge • You have fevers or chills • You are generally unwell • There is pain or swelling around the line site These symptoms could indicate that you have a serious infection and it must be treated urgently as you may need intravenous antibiotics. • Bleeding - If there is bleeding from or around the tube apply pressure to the exit site, and contact the renal unit for advice. If you are unable to control the bleeding please call 999. • Clamp fallen off/hole or tear in line - Apply firm pressure above where the clamp has fallen off or the hole/ tear to prevent air from entering the blood stream , call 999 and lie down on your left side with your feet up and head down until help arrives. This is to help prevent any air in your blood stream from causing any damage. • Cap Dislodgement - if the caps should come off ensure the clamps on the line are closed. Cover the end of the line with a sterile gauze and cling film or plastic bag and contact the dialysis unit immediately. • Line movement - if the length of line appears longer than normal do not attempt to push it back in. Occasionally lines can be pulled out or fall out especially in the days following insertion before the line has been secured to your skin.

16 In Inthe the event event of ofa line a line falling falling out, out, apply apply firm firm pressure pressure (preferably(preferably sterile sterile gauze) gauze) and and call call 999. 999. Important Points • Your dialysisdialysis line line may may contain contain heparin heparin. It(a isblood important thinning that drug). you It(or is aimportant relative) informthat you any (or healthcarea relative) inform staff that any mayhealthcare need tostaff access that thismay line need in toan access emergency.this line in an Any emergency. heparin inAny the heparin line needsin the lineto be needs removed to be beforeremoved this before can bethis done. can be Your done. line Your should line shouldnot be notused forbe used any otherfor any purpose other purpose than dialysis than ordialysis in the or event in the of event an emergency, of an emergency, alternative accessaccess must must be be used. used. • Avoid touchingtouching your your line line or or the the area area around around it. it. Line Line dressings aredressings usually are changed usually weekly, changed unless weekly, they unlessare soiled they or are the soiled site looksor the infected. site looks Only infected. change Only the dressingchange theat home dressing if absolutely at essentialhome if absolutelyand if you haveessential been and trained if you to have perform been this trained task. to perform this task. • Avoid getting your line and dressing wet as this can increase • Avoid getting your line and dressing wet as this can increase the risk of developing an infection. The dressing must be the risk of developing an infection. The dressing must be covered for showering or bathing. Nursing staff on your covered for showering or bathing. Nursing staff on your unit can advise you on how to do this. unit can advise you on how to do this. • Avoid pulling the line or catching your line on clothing when dressing or undressing. YouYou cancan wearwear aa vestvest oror aa cropped bra under your clothes to help keep your line close to your chest. If you need a securing device to stop the line moving, discuss with the nursing staff. • Ensure thatthat thethe clamps clamps and and caps caps remain remain closed closed at atall all times times when youryour dialysisdialysis line line is is not not being being used used for for dialysis. dialysis. These These prevent airair andand germs germs from from entering entering the the blood blood stream. stream. Do not letDo peoplenot let otherpeople than other your than dialysis your team dialysis handle team or handle touch the or linetouch (especially the line young(especially children young & babies). children & babies). 17 Shared Care in Haemodialysis

At Leeds KidneyKidney Unit Unit we we are are committed committed to to delivering delivering the highesthighest qualityquality of of dialysis dialysis care care and and promote promote Shared HaemodialysisShared Haemodialysis Care. Care. Shared Haemodialysis Care means working with you in partnership to be more actively engaged in your treatment. The idea is that shared care gives you the opportunity and encourages you to learn more and participate in any aspect of your dialysis care. You will gain a greater understanding of your condition and treatment, gain greater confidence and have more control of your dialysis. You will be supported and educated to be as involved as you choose, to a level you would feel safe and comfortable with, choosing which aspects you want to be more involved with. There are many ways in which patients can engage in their own dialysis care from learning about their condition and how haemodialysis works to participating in any of the tasks involved such as:

Taking their Setting up their Programming own blood own trolley and their own pressure equipment machine

Completely Fully Self- Degrees of shared haemodialysis care Assisted Caring 18 Shared Care in Haemodialysis Patient experience Patients involved with Shared Care tell us that they enjoy being involved and that it helps them to understand and feel in control of their condition: At Leeds Kidney Unit we are committed to delivering the highest quality of dialysis care and promote Shared One of the down sides of being on dialysis is that you feel Haemodialysis Care. you have lost control of your life. Taking part in Shared Care has given me back some control, a feeling of self- esteem Shared Haemodialysis Care means working with you in has given me back some control, a feeling of self- esteem and achievement and a better understanding of my care. partnership to be more actively engaged in your treatment. and achievement and a better understanding of my care. The idea is that shared care gives you the opportunity and encourages you to learn more and participate in any aspect For more information visit: www.shareddialysis-care.org.uk/ of your dialysis care. You will gain a greater understanding of your condition and treatment, gain greater confidence and have more control of your dialysis. You will be supported and educated to be as involved as you choose, to a level you would feel safe and comfortable with, choosing which aspects you want to be more involved with. There are many ways in which patients can engage in their own dialysis care from learning about their condition and how haemodialysis works to participating in any of the tasks involved such as:

Taking their Setting up their Programming own blood own trolley and their own pressure equipment machine

Completely Fully Self- Degrees of shared haemodialysis care Assisted Caring

18 19 Attending for dialysis THINK Like healthy kidneys, the dialysis treatments clean the waste products and excess water to prevent them from Missing one dialysis This is the same as building up in the body. It keeps a safe level of certain session per week = 52 missing four months of chemicals in your blood, such as potassium, sodium and treatments a year dialysis in one year bicarbonate fromfrom your your blood. blood. Finishing dialysis 15 minutes each session You need to know that missing dialysis or coming off treatments early by 15 = 39 hours every year treatment early has risks and can lead to complications which minutes each session can put additional stress on your body. Symptoms you may experience if you’re not having enough dialysis include:

• Shortness of breath - build of fluid in the lungslungs. PatientView • Cramp and low blood pressure - as a result of removing PatientView allows patients in certain more fluid at the next session specialities and locations to look up test results • Heart problems - such as irregular heartbeat, cardiac arrest and info about their disease and its treatment, and death due to high potassium levels and excess fluid and death due to high potassium levels and excess fluid both online and via mobile. It began as a Renal that has built up that has built up. (kidney) project, and now covers 90% of UK renal units. All • Weakness and lethargy - as a result of worsening anaemia you need is access to the internet via a computer terminal. due to not having iron and aranesp medications. PatientView shows your latest test results, letters and • Loss of body/flesh weight • Loss of body/flesh weight medicines, plus info about diagnosis and treatment. Set up • Poor appetite/ a taste of ammonia in the mouth • Poor appetite/ a taste of ammonia in the mouth alerts, monitor symptoms and download your records. You can • Nausea view PatientView from anywhere you want and share your • Nausea Missing dialysis may result in you not being fit enough to have information with anyone you want. For more information go kidney• Not beingtransplant fit enough surgery to if youhave are kidney on the transplant list. Your lifesurgery depends if to www.renalpatientview.org. or ask the nursing staff. uponyou you are receiving on the list. the right amount of dialysis treatment, You will have bloods taken whilst on dialysis every month the doctors and nurses and other members of the team will Your life depends upon you receiving the right amount of dialysis which are then looked at in monthly meetings by the doctors, encouragetreatment, youthe doctorsto attend and for nurses all your and treatments other members and to of remain the nurses and dieticians. This allows the team to review onteam dialysis will encourage for the amount you to of attend time you for haveall your been treatments prescribed. and If youto remain are having on dialysis difficulties for the in amountattending of fortime your you treatment have been please The information below will help you to interpret your routine speakprescribed. to a member If you are of having staff. difficulties in attending for your blood test results. The ‘normally preferred’ range is a guide but treatment please speak to a member of staff. for more information ask the doctors or nurses on the unit. 20 21 Attending for dialysis THINK THINK Like healthy kidneys, the dialysis treatments clean the Missing one dialysis This is the same as waste products and excess water to prevent them from sessionMissing per one week dialysis = 52 missingThis is four the monthssame as of building up in the body. It keeps a safe level of certain sessiontreatments per week a year = 52 missingdialysis four in one months year of chemicals in your blood, such as potassium, sodium and treatments a year dialysis in one year bicarbonate from your blood. Finishing dialysis Finishing dialysis 15 minutes each session treatments early by 15 15 minutes each session You need to know that missing dialysis or coming off treatments early by 15 = 39 hours every year minutes each session = 39 hours every year treatment early has risks and can lead to complications which minutes each session can put additional stress on your body. Symptoms you may experience if you’re not having enough dialysis include: PatientView • Shortness of breath - build of fluid in the lungs. PatientView • Cramp and low blood pressure - as a result of removing PatientView allows patients in certain PatientView allows patients in certain more fluid at the next session specialities andand locations locations to to look look up up test test results results specialities and locations to look up test results and info about their disease and its treatment, • Heart problems - such as irregular heartbeat, cardiac arrest and info about their disease and its treatment, both online and via mobile. It began as a Renal and death due to high potassium levels and excess fluid both online and via mobile. It began as a Renal (kidney) project, and now covers 90% of UK renal units. All that has built up. (kidney) project, and now covers 90% of UK renal units. All you need is access to the internet via a computer terminal. • Weakness and lethargy - as a result of worsening anaemia you need is access to the internet via a computer terminal. due to not having iron and aranesp medications. PatientView shows your latest test results,results. lettersSet up alerts,and PatientView shows your latest test results, letters and medicines,monitor symptoms plus info and about download diagnosis your and records. treatment. You canSet up • Loss of body/flesh weight medicines, plus info about diagnosis and treatment. Set up alerts,view PatientView monitor symptoms from anywhere and download you want your and records. share yourYou can alerts, monitor symptoms and download your records. You can • Poor appetite/ a taste of ammonia in the mouth viewinformation PatientView with anyonefrom anywhere you want. you For want more and information share your go view PatientView from anywhere you want and share your • Nausea informationto www.renalpatientview.org. with anyone you want. or ask For the more nursing information staff. go toinformation www.renalpatientview.org. with anyone you want. or ask For the more nursing information staff. go • Not being fit enough to have kidney transplant surgery if toYou www.renalpatientview.org. will have bloods taken whilst or ask on thedialysis nursing every staff. month you are on the list. Youwhich will are have then bloods looked taken at in whilst monthly on meetingsdialysis every by the month doctors, You will have bloods taken whilst on dialysis every month whichnurses areand then dieticians. looked This at in allows monthly the meetingsteam to review by the doctors, Your life depends upon you receiving the right amount of dialysis which are then looked at in monthly meetings by the doctors, treatment, the doctors and nurses and other members of the nurses and dieticians. This allows the team to review nursesThe information and dieticians. below This will allows help you the to team interpret to review your routine team will encourage you to attend for all your treatments and Theblood information test results. below The ‘normally will help preferred’you to interpret range youris a guide routine but to remain on dialysis for the amount of time you have been The information below will help you to interpret your routine bloodfor more test information results. The ask‘normally the doctors preferred’ or nurses range on is the a guide unit. but prescribed. If you are having difficulties in attending for your forblood more test information results. The ask‘normally the doctors preferred’ or nurses range on is the a guide unit. but treatment please speak to a member of staff. for more information ask the doctors or nurses on the unit. 21 20 21 BloodBlood teststests andand whatwhat theythey meanmean PotassiumPotassium PotassiumPotassium isis aa mineralmineral inin thethe bodybody thatthat isis normallynormally removedremoved byby thethe kidneykidney andand isis removedremoved byby dialysis.dialysis. TheThe levelslevels ofof potassiumpotassium areare measuredmeasured beforebefore dialysisdialysis toto checkcheck thatthat inin betweenbetween dialysisdialysis treatmentstreatments itit isis notnot gettinggetting tootoo highhigh oror tootoo low.low. IfIf thethe levellevel isis aboveabove oror belowbelow thethe preferredpreferred levellevel itit cancan causecause seriousserious disturbancesdisturbances toto thethe regularregular beatingbeating ofof youryour heart.heart. YouYou maymay wishwish toto speakspeak withwith thethe dieticiansdieticians whowho cancan helphelp guideguide youryour dietdiet toto maintainmaintain potassiumpotassium levels.levels.

YourYour potassiumpotassium beforebefore dialysisdialysis shouldshould bebe betweenbetween 4.04.0 -- 6.0mmol/l6.0mmol/l

UreaUrea andand CreatinineCreatinine UreaUrea andand creatininecreatinine areare wastewaste productsproducts fromfrom metabolismmetabolism thatthat accumulateaccumulate inin youryour bodybody betweenbetween dialysisdialysis sessionssessions soso youryour pre-pre- dialysisdialysis ureaurea andand creatininecreatinine levelslevels willwill usuallyusually bebe muchmuch higherhigher thanthan normal.normal. YourYour creatininecreatinine levellevel givesgives anan indicationindication ofof howhow muscularmuscular andand howhow activeactive youyou are.are. YourYour ureaurea levellevel dependsdepends mainlymainly onon thethe amountamount ofof proteinprotein youyou havehave eaten.eaten. Kt/VKt/V measurementsmeasurements describedescribe thethe qualityquality ofof youryour dialysisdialysis treatment.treatment. TheyThey areare calculatedcalculated fromfrom thethe levelslevels ofof ureaurea inin youryour bloodblood beforebefore andand afterafter dialysis.dialysis. IfIf youyou dodo notnot havehave enoughenough dialysisdialysis thethe wastewaste productsproducts maymay buildbuild upup inin youryour bloodblood andand makemake youyou feelfeel unwell.unwell. IfIf thethe qualityquality ofof youryour dialysisdialysis (or(or youryour Kt/VKt/V isis low)low) wewe willwill looklook intointo thethe possiblepossible reasonsreasons forfor thisthis whichwhich maymay bebe asas aa resultresult ofof eithereither youryour fistulafistula oror dialysisdialysis lineline notnot workingworking properlyproperly oror thatthat wewe needneed toto changechange youryour dialysisdialysis prescription.prescription. TheThe nursesnurses andand doctorsdoctors willwill discussdiscuss thisthis withwith youyou ifif needed.needed.

22 Sodium Sodium helps to maintain blood pressure and blood volume and to help muscle and nerves work correctly. Your body regulates its sodium level carefully, this is why you feel thirsty if you eat something containing salt (the main source of sodium in food). Keeping your salt intake down to the recommended six grams per day is very important when you are on dialysis.

Your sodium level should be 135 - 145mmol/l

Bicarbonate Kidneys are important in maintaining the balance of acid in the body. If you have kidney failure the level of acid can rise and this causes the level of bicarbonate to fall. Dialysis corrects this. If your bicarbonate level falls too low we may need to change your dialysis fluid to make sure the acid balance is correct or you may need to take extra bicarbonate as a tablet. You can see the bicarbonate that is added to the dialysis fluid in the bag or cartridge attached to the machine.

Your bicarbonate level should be between 22 - 28mmol/l

Phosphate Phosphate is a mineral that, along with calcium, is important in keeping bones strong and healthy. Levels of phospahte tend to go up in kidney failure. Dialysis will help remove phosphate and keep levels stable. If phosphate levels rise too much it can upset the balance of calcium in the body. This can cause a chalky substance to be deposited in your skin and blood vessels making them hard. This can also lead to problems with your heart and poor blood supply. Phosphate is found in a lot of foods but especially in foods that are high in protein (eg. Meat, fish, cheeses, milk and eggs).

23 Tablets called phosphate binders can help block the amount of phosphate you absorb from your food into your blood, reducing the level within your blood. These tablets need to be taken just before food. The renal dieiticians will also guide and advise you with your diet.

Your phosphate level should ideally be between 1.1 - 1.7mmol/l

Calcium Calcium is also a mineral in the body that is important in keeping bones strong and allows your muscles to function properly. Calcium levels tend to fall in kidney failure and you may need to take a tablet called Alfacalcidol (Vitamin D) which will help to control your calcium levels. If you take phosphate binder tablets containing calcium this will also help to increase your calcium levels. Some patients with very high parathyroid hormone levels have high calcium levels which may need further treatment.

Your calcium level should be between 2.0 - 2.6mmol/l

Parathyroid Hormone (PTH) Parathyroid hormone is a chemical messenger produced by the parathyroid glands which are in the neck. Its job is to control the amount of calcium and phosphate within the body by taking them from your bones if necessary. It is normal for it to be a little raised in kidney failure however, if these glands become very over-active the levels can become very high. This can give you aches and pains in your bones and joints and make it difficult to control the calcium and phosphate levels. High levels can also make you feel itchy. Alfacalcidol (Vitamin D3) is used to help control the levels. 24 Your parathyroid hormone level should be if possible between 11 - 54pmol/l

Haemoglobin It is very common for kidney patients to be anaemic. This can make you feel tired, lacking in energy and breathless. This is because kidney failure stops the kidney producing Erythropoietin (EPO) which is a chemical messenger that tells the bone marrow to make more red blood cells. Red blood cells carry oxygen and nutrients to all the cells of your body. We check your haemoglobin (Hb) to measure your level of red blood cells. We can give you back EPO as injections through the machine to help boost the making of red cells and give IRON to make sure this happens easily. We will assess each month by looking at your blood tests whether we need to make any changes in your EPO or IRON.

Your haemoglobin level should be 100 - 120g/l

Albumin Albumin is a protein in the blood. If the albumin is low it is usually because you may have been unwell or found it difficult to eat properly. The dieticians may recommend some special supplements for you to help and improve your health.

Your albumin level should be between 35 - 50g/l

For more information on your blood test results please ask the nursing staff or doctors at your unit.

25 Carbapenemase-producing enterobacteriaceae (CPE) screening What is CPE? CPE is short forfor carbapenemase-producingcarbapenemase-producing Enterobacteriaceae. EnterobacteriaceaeEnterobacteriaceae are are bacteria bacteria that that usually live harmlesslyharmlessly inin thethe gut gut of of humans. humans. This This is is called called colonisation (a(a personperson isis saidsaid to to be be a a carrier). carrier). However, However, if if the the bacteria getget intointo thethe wrongwrong place, place, such such as as the the bladder bladder or or bloodstream theythey cancan causecause infection.infection. Carbapenems are one of the most powerful types of antibiotics which are used to treat some types of infection. Carbapenemases are enzymes (chemicals), made by some strains of these Enterobacteriaceae bacteria, which allow strains of these Enterobacteriaceae bacteria, which allow them to destroy carbapenem antibiotics and so the bacteria them to destroy carbapenem antibiotics and so the bacteria are said to be resistant to the antibiotics. This means that the are said to be resistant to the antibiotics. This means that the Carbapenem antibiotics would not be effective in treating Carbapenem antibiotics would not be effective in treating infections caused by CPE. infections caused by CPE. Why does carbapenem resistance matter? Why does carbapenem resistance matter? Carbapenem antibiotics can only be given in hospital directly Carbapenem antibiotics can only be given in hospital directly into into the bloodstream. Until now, doctors have relied on thecarbapenem bloodstream. antibiotics Until now, to successfully doctors have treat relied certain on carbapenem difficult antibioticsinfections whento successfully other antibiotics treat certain have difficult failed infectionsto do so. Inwhen a otherhospital, antibiotics where therehave failed are many to do vulnerable so. In a hospital, patients, where spread there areof resistant many vulnerable bacteria patients,can cause spread problems, of resistant so we bacteriawant to cantake causeaction problems, to minimise so wethe want risk ofto thesetake action bacteria to minimisebeing spread the risk of thesebetween bacteria patients. being spread between patients.

Do people who are carriers of CPE require any treatment? If a person is a carrier of CPE, they do not need any treatment. However, if the bacteria have caused an infection then other types of antibiotics will be required.

26 Carbapenemase-producing How will I know if I am at risk of being a carrier or having an enterobacteriaceae (CPE) screening infection? There is an increased chance of picking up these bacteria if What is CPE? you have been a patient receiving treatment in a hospital or CPE is short for carbapenemase-producing haemodialysis unit abroad or in a UK hospital or haemodialysis Enterobacteriaceae. Enterobacteriaceae are bacteria that unit that has had patients carrying the bacteria, or if you have usually live harmlessly in the gut of humans. This is called been in contact with a carrier elsewhere. If any of these apply colonisation (a person is said to be a carrier). However, if the to you, screening will be arranged for you and you will be bacteria get into the wrong place, such as the bladder or accommodated in a single room where ever possible at least bloodstream they can cause infection. until the results are known.

Carbapenems are one of the most powerful types of Why do I need to be screened for CPE? antibiotics which are used to treat some types of infection. If you are going away to receive haemodialysis or other Carbapenemases are enzymes (chemicals), made by some medical treatment in another medical centre either in the UK strains of these Enterobacteriaceae bacteria, which allow or abroad they may ask for you to be screened for CPE prior to them to destroy carbapenem antibiotics and so the bacteria your visit and you will be rescreened on your return. are said to be resistant to the antibiotics. This means that the Carbapenem antibiotics would not be effective in treating What does screening involve? infections caused by CPE. Screening usually involves taking a rectal swab (a sample Why does carbapenem resistance matter? taken by inserting a swab briefly just inside your rectum (back passage) because CPE live in the gut). Three swabs are Carbapenem antibiotics can only be given in hospital directly into required and will be usually be taken on three consecutive the bloodstream. Until now, doctors have relied on carbapenem dialysis treatments. We will normally be able to give you the antibiotics to successfully treat certain difficult infections when results within seven days. other antibiotics have failed to do so. In a hospital, where there are many vulnerable patients, spread of resistant bacteria can What will happen if my screening results show that I am a cause problems, so we want to take action to minimise the risk of carrier for CPE? these bacteria being spread between patients. If you are a carrier of CPE, you will usually be placed in a Do people who are carriers of CPE require any treatment? single room if you are admitted to hospital, and also when you attend for your haemodialysis treatment. Hospital If a person is a carrier of CPE, they do not need any treatment. patients with a weakened immune system (such as renal However, if the bacteria have caused an infection then other patients), or those who have had an operation or who have types of antibiotics will be required.

26 27 undergone another invasive procedure are at a greater risk of developing an infection caused by CPE. We may need to make special arrangements for your care, for example, in scheduling planned procedures. It is important for us to know if you are carrying CPE because if you develop an infection, we can choose the right antibiotic straight away to treat you appropriately.

How did I get CPE? It can be difficult to say when or where you picked it up. However, there is an increased chance of picking up these bacteria if you have been a patient in a hospital abroad or in a UK hospital that has had patients carrying the bacteria, or if you have been in contact with a carrier elsewhere.

How is the spread of CPE being controlled? We can reduce the number of patients affected by CPE by following simple prevention and control measures: • Thorough hand hygiene before contact with every patient. • Screening to identify patients who are carriers of CPE. • Using single rooms for patients infected with or carriers of CPE. If no single rooms are available, you may be cared for in an area where you are with other patients who also have CPE. • Ensuring healthcare workers use contact precautions (personal protective. equipment PPE) when caring for patients who are infected with or carriers of CPE. • Effective cleaning and disinfection of surfaces and equipment that may be contaminated with CPE.

28 The most important measure for you to take is to wash your hands regularly, especially after using the toilet and before eating food. Avoid touching any areas of broken skin, wound dressings, and your dialysis line, particularly at the point where it is inserted into your body or skin and maintain good general hygiene. As CPE does not usually cause infections in healthy people, your family/friends are at a low risk of CPE infection. However, visitors to dialysis units should wash their hands before and after touching you or your immediate environment.

What about the future You should carry on as normal, maintaining good hand hygiene using soap and warm running water. You should wash your hands before preparing food or eating and directly after using the toilet. Good personal hygiene is important; this will help protect you from infection and reduce the risk of spread to others Here in Leeds where ever possible, you will be accommodated in a side room if you are found to be CPE positive.

Further information Please speak to your doctor or nurse if you have any questions or concerns about CPE or other aspects of your treatment. For general infection prevention and control information, please contact the hospital’s infection prevention and control team on 0113 392 2691.

29 COVID-19 (Coronavirus) information Haemodialysis Services Due to the Coronavirus pandemic we have to adjust our services and look at new ways of working. Our main objective is to deliver a service that continues to meet the needs of our patients whilst keeping you and staff as safe as possible. To help with this if you are due to attend any treatment sessions please contact the staff at your dialysis unit before toyour yourappointment appointment if you if or you someone or someone in your in yourhousehold household have havea: a: • high temperature • new, continuous cough • loss or change to your sense of smell or taste

Do not enter/attend your dialysis unit. Do not enter/attend your dialysis unit. The staff at your dialysis unit will give you instructions on The staff at your dialysis unit will give you instructions on what you will need to do. This may include arrangements to what you will need to do. This may include arrangements to attend the dialysis unit at St James’s Hospital as you will still attend the dialysis unit at St James’s Hospital as you will still require your dialysis treatment. require your dialysis treatment. Additional advice can be found on the NHS website: Additionalwww.nhs.uk/coronavirus advice can be found on the NHS website: www.nhs.uk/coronavirus

30 COVID-19 (Coronavirus) information Medications Haemodialysis Services As a person with kidney problems you may Due to the Coronavirus pandemic we have have to take a large number of medications to adjust our services and look at new ways of each day which will be prescribed by your doctor. working. Our main objective is to deliver a service that When buying ‘over the counter’ medications, please let the continues to meet the needs of our patients whilst keeping pharmacist know that you are a kidney patient. you and staff as safe as possible. Common drugs used in kidney disease To help with this if you are due to attend any treatment • Blood Pressure Controlling Medications - people with sessions please contact the staff at your dialysis unit before to failing kidneys may have high blood pressure because the your appointment if you or someone in your household have a: kidneys are not working properly. It is important to control • high temperature blood pressure to avoid further damage to the kidneys and • new, continuous cough also cardiovascular disease (heart attacks and strokes). Some of the common blood blood pressure pressure tablets tablets include: include: • loss or change to your sense of smell or taste • Beta-blockers (atenolol, bisoprolol etc) • Calcium channel blockers (amlodipine, diltiazem etc) Do not enter/attend your dialysis unit. • Alpha-Blockers (doxazosin) The staff at your dialysis unit will give you instructions on • Ace-inhibitors (lisionpril, ramipril, perindopril etc) what you will need to do. This may include arrangements to • Angiotensin Receptor Blockers (losartan, candesartan etc) attend the dialysis unit at St James’s Hospital as you will still • Diuretics - If kidneys cannot get rid of excess fluid in the require your dialysis treatment. urine, it can be helped by water tablets called diuretics, most common Furosemide. Patients on dialysis may also Additional advice can be found on the NHS website: benefit from them. www.nhs.uk/coronavirus • Sodium bicarbonate - the kidneys are involved in keeping the acid levels in your body within a specific range. In kidney failure this does not happen as well and tablets of Sodium Bicarbonate can help manage this. • Phosphate binders - Phosphate is a chemical found in everyone’s blood but with kidney failure the levels can rise.

30 31 Most patients will need to take phosphate binders to ‘mop up’ phosphate before it is absorbed from the stomach. It is important to take these just before eating, with the meal or immediately afterwards. • Vitamin D - Kidneys are involved in making Vitamin D into a form the body can use. Without this patients can suffer from low levels of calcium in the blood and bone disorders similar to osteoporosis. Patients may need to take Alfacalcidol or Calcitriol which are active forms of Vitamin D. • Erythropoietin - Kidneys are involved in the making of red blood cells by releasing Erythropoietin (EPO). In kidney failure this no longer happens and patients often suffer with anaemia. This is usually treated by injecting EPO on dialysis. • Iron - Many patients will need iron supplements such as Ferrous Sulphate. In some patients including haemodialysis patients, it may be necessary to ‘top up’ iron levels with an infusion of iron. Whilst you are on dialysis you will be seen by the renal pharmacist who will support you with any queries you may have your medications. Nurses and doctors can also help with any queries you may have. This is not an exhaustive list of medications used.

32 Dietary information and guidance Diet and fluids are an important part of your dialysis treatment. When kidneys are not functioning properly, fluid and waste products will build up from the food and drink you have. The haemodialysis machine will clean the blood of this waste and excess fluid but they are not as effective as normally functioning kidneys so you will need to make changes to your diet and fluid intake. Specialist dieticians will review your blood test results and provide you with guidance and advice on eating the right foods to help limit the build-up of these waste products. This guidance is very specific to your own individual needs and will depend on your current dietary intake and urine output. It is important not to take dietary advice from other sources as this may not be right for you.

Salt Intake Having too much salt in your diet can cause an increase in thirst, high blood pressure and a build-up of fluid. Simple steps such as not adding salt at the table or in cooking will help, but the most important way to reduce your salt intake is by avoiding tinned and highly processed foods as the manufacturers of these products often add very large amounts of salt.

Potassium Not everybody on dialysis needs to follow a low potassium diet. The aim is to keep your potassium between 4-6.5mmol/L 33 before dialysis. If your potassium level is high the dieticians will advise you on what you can do to help reduce this by altering your diet, avoid foods that are high in potassium.

Protein Patients on haemodialysis require more protein, to meet the basic needs and replace what is lost through dialysis. The dietician will advise you how much protein you need and how to achieve this from your diet. Your urea levels give an indication of how much protein you have eaten.

Fluid Balance When you first start dialysis, it is important that you inform the nursing staff on the unit if you notice a significant change in how much urine you pass. You may still be passing urine but over time your urine output will usually reduce. When you drink more than you are passing, the excess fluid will build up in your body causing ‘fluid overload’. This increase in fluid on your body will cause an increase your blood volume so that your heart has to work harder, it makes tissues swell up and, in extreme cases, it can settle in your lungs making it harder to breathe. During dialysis, it is important that the excess fluid is removed and you achieve the target weight in order to reduce the risks of the above symptoms. Your target weight is your weight (bone, skin, fat etc.) without any excess fluid in your body. The dialysis machine can only remove a certain amount of fluid in one dialysis session and some people can only tolerate small amounts so it is really important to manage both your fluid and salt intake as you have been advised.

34 What can you do? • If you are diabetic, maintain good control of your blood sugar levels. • Eat a healthy, low salt diet. The dietician will give advice on your dietary intake. • Maintain a healthy lifestyle, exercise regularly, stop smoking and drink only in moderation. You may have been advised to restrict your fluid intake. • Have a yearly flu jab at your GP practice. • Have a course of Hepatitis B vaccinations - ask your dialysis team.

35 Dialysis away from base Holidays are important to most people and we wehope hope to do to everythingdo everything that that we wecan canto help to help make this possible and the process smooth so that you can enjoy your break away from your home life and daily commitments. It is important that you are established on dialysis and that you have had a review with your Consultantconsultant beforebefore arrangingarranging aa holiday.holiday. Due to infection reasons, it may not be possible to travel to all destinations. Not all dialysis units are able to take ‘holiday’ patients due to their own patient’s needs. We will need as much notice as possible if you are planning a holiday. If you thinking of holidaying in the UK or Europe we will require at least four weeks’ notice and eight weeks for anywhere else. The more notice given the more chance there will be of space being available at your destination. (Please do not book your holiday until you have had confirmation that your treatment has been successfully arranged) When planning a holiday, whether in the UK or abroad, we will help to organise your treatment for whilst you are away but there are some important steps that need to be considered:

StepStep OneOne 1 YouYou mustmust havehave hadhad aa reviewreview withwith youryour Consultantconsultant withwith thethe lastlast threethree months.months. YourYour Consultantconsultant will assess whetherwhether youyou areare fitfit andand wellwell toto gogo onon holiday.holiday.

36 Step Two Dialysis away from base StepStep TwoTwo 2 Inform the nursing staff who will discuss with the 2 InformInform thethe nursingnursing staffstaff whowho willwill discussdiscuss withwith thethe Holidays are important to most people and Holiday Dialysis Co-ordinator. we hope to do everything that we can to help HolidayHoliday DialysisDialysis Co-ordinator.Co-ordinator. make this possible and the process smooth so Step Three StepStep ThreeThree that you can enjoy your break away from your 3 If the destination you wish to visit is somewhere we 3 IfIf thethe destinationdestination youyou wishwish toto visitvisit isis somewheresomewhere wewe home life and daily commitments. It is important that you are have never used before, additional infection control havehave nevernever usedused before,before, additionaladditional infectioninfection controlcontrol established on dialysis and that you have had a review with checks will need to be made. This may take longer so please checks will need to be made. This may take longer so please your Consultant before arranging a holiday. inform us as soon as possible. Dialysis units will require you inform us as soon as possible. Dialysis units will require you are screened for infection before you travel. This will include Due to infection reasons, it may not be possible to travel to are screened for infection before you travel. This will include blood tests for Hepatitis B, Hepatitis C, HIV and routine all destinations. Not all dialysis units are able to take ‘holiday’ blood tests for Hepatitis B, Hepatitis C, HIV and routine MRSA screening. This may include a further test called a patients due to their own patient’s needs. MRSA screening. This may include a further test called a Carbapenemase Producing Enterobacteriaceae (CPE) screen We will need as much notice as possible if you are planning a Carbapenemase Producing Enterobacteriaceae (CPE) screen which is obtained by inserting a small swab a small distance holiday. If you thinking of holidaying in the UK or Europe we which is obtained by inserting a small swab a small distance into your bottom to obtain a sample. will require at least four weeks’ notice and eight weeks for into your bottom to obtain a sample. StepStep FourFour anywhere else. The more notice given the more chance there Step Four will be of space being available at your destination. 4 TheThe holidayholiday co-ordinatorco-ordinator willwill sendsend youyou aa letterletter 4 The holiday co-ordinator will send you a letter confirmingconfirming thethe arrangementsarrangements thatthat havehave beenbeen mademade for (Please do not book your holiday until you have had confirming the arrangements that have been made for foryou. you. This This will will include include dates dates and and times times of the of thedialysis dialysis and and the confirmation that your treatment has been successfully you. This will include dates and times of the dialysis and the theaddress address details details of the of unit.the unit. You Youwill willneed need to organise to organise your own arranged) address details of the unit. You will need to organise your own yourtransport own totransport and from to theand unit. from Please the unit. do notPlease book do anythingnot book transport to and from the unit. Please do not book anything When planning a holiday, whether in the UK or abroad, anythinguntil you untilhave youreceived have thisreceived information. this information. until you have received this information. we will help to organise your treatment for whilst you are StepStep FiveFive away but there are some important steps that need to be Step Five considered: 5 PleasePlease considerconsider thethe valuevalue ofof holidayholiday insurance.insurance. ItIt cancan 5 Please consider the value of holiday insurance. It can 5 appearappear costlycostly butbut aa proportionproportion ofof peoplepeople becomebecome unfit appear costly but a proportion of people become unfit Step One unfitto travel to travel between between planning planning and the and date the ofdate departure. of departure. Should to travel between planning and the date of departure. Should 1 You must have had a review with your Consultant Shouldyou need you any need treatment any treatment other than other your than dialysis your dialysistreatment you need any treatment other than your dialysis treatment with the last three months. Your Consultant will assess treatmentwhilst you whilstare away, you as are your away, healthcare as your healthcareprovider, the provider, Trust has whilst you are away, as your healthcare provider, the Trust has whether you are fit and well to go on holiday. theno obligation Trust has no to obligationcover any financialto cover anyloss financialyou may incur.loss you The may no obligation to cover any financial loss you may incur. The incur.Trust hasThe a holiday limited co-ordinatorbudget for holiday can help dialysis. with further The maximum advice or information.Trust has a limited budget for holiday dialysis. The maximum 37 36 37 value allowed per patient for holiday dialysis sessions away from the primary unit is a total of £1,500, in any financial year (1 April - 31 March). This will normally cover 6 dialysis sessions, on average. Any holiday dialysis costs over £1,500 must be met by the patient. The holiday co-ordinator can help with further advice or information.

Step Six Step Six Renal Clinical Psychologist 6 OnceOnce allall arrangementsarrangements havehave beenbeen confirmedconfirmed pleaseplease shareshare thisthis informationinformation withwith thethe nursenurse inin chargecharge onon Clinical psychologists can help people youryour dialysisdialysis unit.unit. manage the emotional aspects of physical illness with practical problem StepStep SevenSeven solving techniques as well as counselling and more formal 7 OneOne weekweek beforebefore youyou travel,travel, pleaseplease askask thethe staffstaff onon psychotherapy. your dialysis unit to confirm everything is in place for your dialysis unit to confirm everything is in place for Having kidney disease can have a major impact on people’s your holiday including any medication you need to take with your holiday including any medication you need to take with lives and can be hard to deal with at times. It can be difficult you. (A letter can be given stating that the medication must you. (A letter can be given stating that the medication must to come to terms with and accept a diagnosis and adjust be allowed through customs) be allowed through customs) to the lifestyle changes that may be required. Adjusting to StepStep EightEight treatment regimens and undergoing medical procedures may make you feel anxious or upset. 8 IfIf youyou areare onon thethe transplanttransplant waitingwaiting list,list, itit isis importantimportant thatthat youyou informinform thethe transplanttransplant co-ordinators/co-ordinators/ Other conditions not related to your kidney disease may also transplanttransplant teamteam thatthat youyou areare travellingtravelling abroad.abroad. affect how you deal with things. Some people can become depressed, anxious or angry about what is happening to them, such feelings of distress can be overwhelming and it may help to work through these issues with someone experienced in dealing with psychological and emotional difficulties.

Overwhelmed Failure Stress Fear Tention Anxiety Panic

Headache Withdrawal Fatigue Depression Scared 38 Despair Disorder Agitation Temper Nervous Worry PTSD Mood Awareness Insomnia Negative Frustration Lonliness

38 39 Renal Clinical Psychologist Renal Clinical Psychologist Clinical psychologists can help people Clinical psychologists can help people manage the emotional aspects of manage the emotional aspects of physical illness with practical problem physical illness with practical problem solving techniques as well as counselling and more formal solving techniques as well as counselling and more formal psychotherapy. psychotherapy. Having kidney disease can have a major impact on people’s Having kidney disease can have a major impact on people’s lives and can be hard to deal with at times. It can be difficult lives and can be hard to deal with at times. It can be difficult to come to terms with and accept a diagnosis and adjust to come to terms with and accept a diagnosis and adjust to the lifestyle changes that may be required. Adjusting to to the lifestyle changes that may be required. Adjusting to treatment regimens and undergoing medical procedures may treatment regimens and undergoing medical procedures may make you feel anxious or upset. make you feel anxious or upset. Other conditions not related to your kidney disease may also Other conditions not related to your kidney disease may also affect how you deal with things. Some people can become affect how you deal with things. Some people can become depressed, anxious or angry about what is happening to them, depressed, anxious or angry about what is happening to them, such feelings of distress can be overwhelming and it may help such feelings of distress can be overwhelming and it may help to work through these issues with someone experienced in to work through these issues with someone experienced in dealing with psychological and emotional difficulties. dealing with psychological and emotional difficulties.

Overwhelmed Overwhelmed Failure Stress Failure Fear Anxiety Stress Panic TentionFear Anxiety Panic HeadacheTention Withdrawal Fatigue Depression Scared

Withdrawal Fatigue Depression Headache Disorder Scared Despair Disorder Agitation Despair Temper Agitation Temper Nervous Worry PTSD Nervous Mood WorryAwareness PTSD Mood Awareness Insomnia Negative Insomnia Frustration Negative Frustration Lonliness Lonliness

39 39 What will happen if I am referred? A referral to the clinical psychologist will be discussed with you beforehand and will only be made with your agreement. Your first meeting with the psychologist will be informal, it will be a discussion about how you are coping with all the changes and treatments, about background information and you may asked to complete a short questionnaire. Next steps would be agreed as a joint decision between you and the psychologist.

Confidentiality The psychologist may want to share some of the things you have discussed with other members of the renal team with the intention of helping them understand more about you. However, for things that you want to remain confidential, this will be respected wherever possible subject to the need to consider the safety of yourself and others. If you would like to your referral to a clinical psychologist further, ask the nursing staff in your dialysis unit.

40 Social Worker What do renal social workers do? The Renalrenal socialSocial worker Worker works works within within the the renal Renal Team,team, withwith bothboth inpatientsinpatients andand outpatientsOutpatients -Pre-dialysis,-pre-dialysis, dialysis and patients who have received a transplant, alsoalso withwith patientspatients families/Carersfamilies/carers acrossacross WestWest Yorkshire.Yorkshire. Social Worker’sworker’s workwork toto enableenable renalrenal patientspatients to to make make the the best possible use of services available so they can remain independent in the community and enjoy a good quality of life.

How we support • We provide support and guidance in all areas of the patients life which includes; Personal,personal, Emotionalemotional and Financial.financial. • Some of the areas we can provide support are: • Welfare telephone calls and (where appropriate) visits • Signposting to other community services • Support with discharges from hospital • Support with Care Packages to enable safe discharge • Referral for financial benefitsbenefits adviceadvice • Referral to Occupational Therapists for aids, equipment and adaptations • Support with Housinghousing issuesissues • Support with accessing grantsgrants fromfrom BKPABKPA BritishBritish KidneyKidney Association • Support with accessing Advocacy • Support with Carercarer issuesissues 41 Where we work St James’s Hospital, Wards J48, J49 and J50. Seacroft Hospital Wards B, R & S. Renal units at Beeston, Pontefract, Dewsbury, Huddersfield and Halifax, Conservative Management, Renal Outpatients across West Yorkshire.

How to contact us Should you wish to contact us, we would be happy to hear from you directly or you can request a referral be made by your Renal Team.

Tel: 0113 378 0647

Tel: 0113 336 7679

42 What happens to your information? We collect information about patients from renal units and hospital systems. This statistical information is part of an annual report that helps helpsto educate to educate those thosewho plan, who deliverplan, deliver and use and services use services for kidney for kidneypatients patients by; by; • Identify areas of best practice. • Support research for the benefits of patients. • Help patients and health care professionals to make decisions and plan for the future. • Reveal areas of the country where treatment may not be available. We do not: • Publish information that could lead to your identity being revealed. If you wish to opt out of sharing your information please speak to the renal unit staff or you can contact the renal registry by telephone or email:

0117 414 8150 or [email protected]

43 End of Life Care (Conservative Management) Everybody has different experiences, stories and journeys and we want our care to reflect things that are most important to you at each and every stage of your illness. End stage kidney disease is a long term condition that can have a significant impact on your quality of life in many different ways. People can live for years on dialysis however there may come a point where the focus of your medical care changes from medical interventions, such as dialysis which prolong your life, to ones which aim to focus on maintaining your comfort. We recognise that these can be difficult topics to discuss and may not be relevant to you until a long time in the future. However, an important part of ensuring excellent care is providing you, your family and carers with the right support, advice and medical interventions at each stage of your illness. Talking about how end stage kidney disease may affect you in the future is an important part of this process. If anything within this section is upsetting or worrying please talk to any member of the team. There may be a point when you are seriously ill and this may affect your capacity to be involved in decisions. When we think ahead to these possibilities it may be important for you to write down what your future wishes and preferences would be so we can provide you with the best care possible.

44 End of Life Care Stopping Dialysis (Conservative Management) You may choose to stop dialysis if: Everybody has different experiences, • Your health has deteriorated making dialysis difficult stories and journeys and we want our • You feel the impact of dialysis has on the quality of your life care to reflect things that are most important to you at each has become unbearable. and every stage of your illness. • The Kidney team are concerned about your health and End stage kidney disease is a long term condition that can want to discuss stopping dialysis have a significant impact on your quality of life in many Whatever the reasons we want to ensure this decision different ways. People can live for years on dialysis however making is guided by your specific wishes and preferences. there may come a point where the focus of your medical care We recognise that these discussions are difficult and can be changes from medical interventions, such as dialysis which emotional and upsetting. You may wish to speak with your prolong your life, to ones which aim to focus on maintaining family or friends regarding these issues before speaking with your comfort. the kidney team. You may have religious or spiritual concerns We recognise that these can be difficult topics to discuss and about stopping this treatment and we can arrange for you to may not be relevant to you until a long time in the future. see a religious advisor if needed. However, an important part of ensuring excellent care is providing you, your family and carers with the right support, What happens when you stop dialysis? advice and medical interventions at each stage of your illness. Stopping dialysis is like stopping any other life sustaining Talking about how end stage kidney disease may affect you treatment. Without dialysis your health will begin to in the future is an important part of this process. If anything deteriorate (get worse), eventually causing you to pass away. within this section is upsetting or worrying please talk to any On stopping dialysis you may notice that initially things are member of the team. much the same however over time you will become more There may be a point when you are seriously ill and this may unwell and this can vary from person to person and will be affect your capacity to be involved in decisions. When we discussed with you. Medications can be used to keep you think ahead to these possibilities it may be important for you comfortable, manage and minimise any discomfort and distress. to write down what your future wishes and preferences would We may ask advice from the palliative care team regarding be so we can provide you with the best care possible. controlling your symptoms and support for you, your family and carers. On stopping dialysis other things to consider can include where you would like to be cared for where you would like to be cared for at the end of life. This can be in 44 your home, a nursing home, hospital or hospice. 45 Documenting your wishes and preferences As well as discussing your wishes and preferences of care, you may wish to document these in an advanced care plan. Further advice regarding this process can be discussed with your kidney team at any point. If youyou wishwish toto talk talk this this through through more more please please speak speak with with a a member ofof thethe kidney kidney team. team. You You may may wish wish to to discuss discuss this this through with your family and friends or with your family doctor.

46 Your Notes

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47 What did you think of your care? Scan the QR code or visit bit.ly/nhsleedsfft Your views matter

© The Leeds Teaching Hospitals NHS Trust • 1st edition (Ver 1) LN004694 Developed by: Nicky Lamb, Clinical Educator. Bev Craggs, Matron and Karen Publication date Baharvand, Clinical Educator. Dr Elizabeth Garthwaite, Consultant 04/2021 Nephrologist. Paul Taylor, KPA Liaison Representative Review date Produced by: Medical Illustration Services • MID code: 20191113_012/BP 04/2024