Home therapy with haemodialysis treatment

The Home Haemodialysis team

Introduction

The information enclosed is to help you make an informed decision about your treatment so that you can consider whether home therapy treatment is suitable for you and your family.

As a team we are here to support the decision you make and are available to answer any questions to help with this decision.

Coronavirus Covid-19

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 our 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 your appointment if you or someone in your household have a:

• high temperature
• new, continuous cough
• loss or change to your sense of smell or taste

Do not enter/attend your dialysis unit. The staff at your dialysis unit will give you instructions on what you will need to do.

If our staff are unavailable please leave a message on the answer phone and the staff will contact you. Staff will discuss any further action that is required.

Additional advice can be found on the NHS website:
www.nhs.uk/coronavirus

Points to consider

Are you interested in home haemodialysis (HHD)?
Would you like to know more?
To help you consider this treatment option you need to consider whether;

• You have space at home for your treatment and to store your medical supplies
• Your dialysis access is functioning well. You or your carer are willing to learn how to cannulate your fistula or access your central venous catheter
• You have a carer to assist and support you, however this is not always necessary
• Your renal consultant has discussed with you that you are well enough to carry out your own dialysis treatment at home
• You and your carer are able to attend Seacroft hospital for haemodialysis for training between Monday- Friday
• You are willing to maintain a good communicative relationship with the HHD team so that we are able to assist you if any problems arise and organise any bloods/investigations for you in a timely manner

The training

You can begin your training as soon as you begin dialysis in which ever centre you have your treatment. The units promote Shared Care so you can begin with, recording weight, blood pressure, learning to open your trolley, programme the machine, line the machine, and move on to self cannulate / accessing your line, then connecting on and off the machine. This can all begin in the dialysis centre, and then when you are ready to transition to home you will already have developed many of the skills required.

The home dialysis machine is a Fresenius 5008S which is almost identical to the hospital machines and you will be able to do HDF at home too.

You will have training by the HHD nurses who will teach you: How to use the dialysis machine and other equipment, how to recognise and deal with problems, how to order your stores and how to dispose of equipment.

The training can take place in a unit which is close to home or in the training rooms which are at R+S ward in Seacroft hospital. There is no set amount of training time as all patients learn differently. You will be assessed and once competent and confident you will begin dialysis at home. You will receive additional support whilst at home especially for the first few sessions. One of the HHD team will come to your home and stay with you whilst you have your treatment. The nursing staff will be there to offer encouragement, support and will intervene if necessary.

Equipment Installation

Once you have expressed an interest in HHD and begun your training, the process for having your home installation will begin. There is a lot of co-ordination involved with different companies to get your home ready.

“Haemodialysis for me was the best decision I ever made. At first I was a bit apprehensive but with time and support from the home haemo team and the R&S ward at Seacroft I have found my rhythm with my treatment. All the staff are amazingly special and are dedicated to help anyone with support and guidance.
With home haemo I can pick my days & time to work with my treatment plan. The flexibility means I don’t miss out on those special moments with my family and means I can continue to create precious memories with my grandchildren from the comfort of my own home.
I would recommend home haemodialysis to anyone”

What’s Required

A room or area in the house where you can have your haemodialysis treatment this will usually be approximately a minimum of 2 metres x 2 metres.

In this area you will require;

• A reclining chair or bed and a table.
• A space for your equipment. If you require further storage you can contact kidney care UK and apply for a grant. They can provide a shed for your medical equipment.

We will provide;

• A haemodialysis machine and water treatment machine. (WRO) and water softener.
• The renal technicians will need to install a panel to supply water, electricity and remove waste.

As with all appliances there are times when there maybe a fault with your equipment. Please do not worry as we aim to repair equipment promptly and if there is a delay we will organise alternative dialysis treatment.

Decommissioning of Equipment

The Haemodialysis Equipment will need to be decommissioned and removed from your home if you were to decide/require transfer back in centre for your treatment, or if you were to have a transplant and no longer required Haemodialysis.

The process of removal is similar to the set-up of the equipment – the HHD team will inform the Leeds Technicians, Fresenius and CES that your equipment needs decommissioning and they will make arrangements to do this.

Firstly, FMC will make arrangements to decommission and remove your dialysis machine, WRO and any consumables.

Following this, your wall board will be removed by CES. The company cannot guarantee that there will be no damage to your wall following removal. CES will do their best to fill in any holes caused by the wall board- they will amend this with filler. CES or Leeds Trust will not re plaster or decorate the wall.

Finally, the Leeds Technicians will remove the last remaining equipment e.g. scales and table.

Nurse and medical follow-up:

The HHD team will contact you regularly by phone and the occasional pre-arranged visit but we will rely on you letting us know if you are experiencing problems.

We will ask you to take pre and post dialysis blood samples which we will arrange to be picked up or dropped off locally to you. The results will be reviewed by a senior nurse and if we need to make any changes to your treatment we will contact you. You will also have access to a Renal Dietician.

Your anaemia bloods will be checked every other month. You will self-administer your Aranesp at home but you will need to attend a dialysis unit if you require any Intravenous Iron. Your Aranesp will be delivered by a company called Alcura. They will need to contact you prior to delivery to ensure that someone is in to accept delivery as it needs to be stored in the fridge.

Your consultant will be Dr Mooney. You can have either a face to face or telephone appointment. These appointments are a minimum of every six months.

If at any time you feel you need a break or are too unwell to perform your treatment yourself the team will look at available treatment sessions in your local area or the HHD training rooms to try to accommodate your needs.

“The team are always available when I need them and I am seen at Seacroft regularly”

“Always make themselves available when I need advice or to dialyse in centre if unable to dialyse at home”

“I’m always able to talk to someone if there’s a problem during working hours”

“Haemodialysis support at Seacroft is the best”

Supplies & medical equipment

You will need to count the stock you have left and the customer care co-ordinator will contact you on a set date for the numbers, then the delivery will arrive two weeks later. You will get a schedule of call dates and delivery dates in your first order. You can ring Fresenius after 3pm the day before your delivery is due to get an estimated delivery time.

The delivery driver will place the consumables where ever you decide to have it and will rotate the stock.

Waste Disposal / Refuse collection

Clinical waste is collected by your local council. The HHD team will contact your council and arrange for your clinical waste to be collected.

The Trust will reimburse you quarterly for your electric and water used, if you are on a water meter. You may be required to provide bills/receipts.

You are advised to contact your electric supplier and ask them to register you as an essential user. This means they will inform you if there is any interruption in supply.

We will contact Yorkshire water on your behalf.

You should also contact Yorkshire water and see if you are eligible for any financial support schemes they offer, visit the website on www.yorkshirewater.com or call on
0345 124 2424, please have your household income figures ready at hand when calling.

Holidays

You will still be able to go on holiday using the same procedure as when you dialyse in centre, that is;

• Check with the doctor to ensure you are medically fit to go
• Contact the renal holiday co-ordinator at least six weeks before you book the holiday so that she can confirm there is a dialysis unit there and that they have space
• When your sessions have been confirmed you can book your holiday
• Please ensure you inform the HHD team of any planned holidays to ensure we can get your bloods and swabs back in time, they will need doing before your holiday, on your return and at 12 weeks

On Reflection

To be able to dialyse yourself at home is a big responsibility and allows you to take charge of your own treatment.

It is a big commitment for the person helping too, so don’t forget that they need to be able to talk about their fears and anxieties before agreeing to help.

You will need a good standard of hygiene. The cleanliness of your machine and equipment will be your responsibility. This will help prevent infections and allow the technicians to service the machine safely. You need to keep the equipment clean and wipe away any blood splashes.

There is a small amount of maintenance work required for the wall board filters, salt softener and the dialysis machine and again you are responsible for keeping up to this.

Dialysing at home may seem an overwhelming thought but once you have been home a few weeks you should find that your dialysis sessions become part of your daily routine.

It can give you the freedom to have dialysis when it is convenient for you, and you can change your days and session times to suit your lifestyle. There is evidence that having more frequent dialysis for shorter sessions has great health benefits. Again this can be discussed with the HHD team.

The HHD team and your Dr are always willing to talk to you if you have any queries or problems.

Patients Know Best

Online Information for Individual Patients

If you would like to –

• Find out your latest test results.
• Read online information about your kidney condition and treatment.
• Read letters about you from the renal unit.
• Read about renal diets.
• Check your transplant list status.
• Find any other information about kidney disease.

Information:

Please ask for a Patients Know Best leaflet or take a look at: https://patientsknowbest.com/renal/

Patient Associations

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 to educate those who plan, deliver and use services for kidney patients 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]