We have all had a difficult and worrying time since the Covid-19 pandemic struck in early 2020 and this has been particularly true for those with kidney disease who need dialysis. There is strong evidence that patients who dialyse at home are able to protect themselves better from the pandemic compared to patients who dialyse in a centre. It is for this reason, the National Kidney Federation (NKF) is running a campaign to increase the incidence of home dialysis across the country and this pamphlet has been put together to help you to understand the issues that you should think about if you are considering home dialysis.

Key Points to Consider
Although there are great advantages to home dialysis, there are several factors to be considered in the decision to opt for this and this leaflet sets out the benefits and possible difficulties:

If you are considering home dialysis there are the following advantages:

1) Limited exposure to hospital setting reducing the risk of catching infection.

2) Dialysis treatments can be flexible and carried out at times that suit you and your lifestyle, providing greater quality of life.

3) Can reduce the rate of loss of the remaining kidney function as home dialysis has been shown to improve the survival rate.

4) Saves the time and inconvenience of travelling to and from the dialysis centre each week.

5) Remote consultations and treatments may be possible, which can reduce the frequency of hospital visits. Although on occasions hospital visits may be required, this will only be when necessary for you.

6) Daily visits from health care workers may be organised if required to help support dialysis at home.

7) With PD and some HD machine, these can be taken on holiday with you, which means you don’t have to travel to a dialysis centre.

Possible disadvantages
There are also the following possible downsides. These are well recognised and will be covered by your training by your Home Therapies team, but you should think carefully and satisfy yourself that you can manage them at home:-

1) You will need a place in your home to carry out your dialysis, as well as storage for the supplies of consumables. Your renal unit can help you with this, as well as arranging and funding any adaptions that are needed e.g. plumbing or electrical work.

2) You will receive full and comprehensive training through your renal team, but you need to be happy with the administration of injectable medications, and timely visits for blood tests. If this is something that you or your care partner feel will be difficult, you should talk through your concerns with your renal team.

3) You should ensure that you know how to obtain timely advice on access and technical issues, as well as ensuring that you know the procedures to be followed in emergencies.

4) You are responsible for ensuring that you stick to your dialysis timetable and not miss sessions. If you are struggling and feel the need to chat to someone the NKF Peer Support Helpline can put you in touch with volunteers who have similar experiences and there is a lot of evidence that this is very helpful in getting a better perspective on a situation.

5) If you are starting to feel overwhelmed, isolated or depressed by your illness you should speak to your renal or social work team who will be able to help you work through the issues. It is very important that you seek help if you feel that your kidney problems are adversely affecting your mental health.

Help and Support
Your renal unit’s home therapies unit will provide you with full training and sources of technical support. Many renal units also have a renal social work team who are there to help you.

In addition, as part of their campaign to promote home dialysis, the NKF recognise that being able to talk to someone who is a home dialysis patient or carer can be immensely valuable in making an informed decision before deciding to go for home dialysis. We have therefore launched the NKF Peer Support Service. This is aimed at anyone who is doing in centre dialysis or who is not yet on dialysis but will be starting in the future. If you are considering home dialysis, either Haemodialysis or Peritoneal, you can contact the NKF Peer Support Service via the NKF Helpline on 0800 169 0936 where you will be matched with a peer supporter to talk to you about home dialysis, who have experienced the types of issues that you are facing.

The NKF Helpline has a number of leaflets which can help you decide if home dialysis is for you, and how to maintain the best care.

Other resources
You can visit online the NKF Helpline information leaflets and their full list of titles including the advantages of HHD, introduction to peritoneal dialysis and much more:
https://www.kidney.org.uk/Pages/Category/online-help-resources

NKF’s Home Dialysis Resource Centre

https://www.kidney.org.uk/Pages/Category/home-dialysis

Shared Haemodialysis Care’s website which contains useful articles on how patients can be involved

https://www.shareddialysis-care.org.uk/patient-involvement

Baxter Healthcare has a home dialysis section on their website, which gives useful tips on how to perform home haemodialysis and outlines the advantages.

https://mykidneyjourney.baxterhealthcare.co.uk/

Patients Quotes
Dana Holmes

During the pandemic everyone was scared to leave their homes to go out for a walk, so imagine having to go into hospital for treatment 3 times a week. The ability to dialyse at home gave me great comfort knowing that I was in a safe environment, in control of my treatment and as protected and far from risk of contracting Covid as I could be. The HHD team and my HHD provider are only a phone call away.”

Caroline Storey

”The greatest thing I ever did was to train to dialyse at home. It changed my life completely and even more so during the current pandemic. I had first class training to do this from my Omagh Renal Unit who were amazing. I was extremely happy and confident dialysing at home, knowing the team were only a phone call away. This became even more evident during the pandemic, I was so relieved that I could protect myself from the possibility of catching Covid by not having to leave my house three times a week for dialysis, when many others felt incredibly anxious doing so. I would highly recommend it to all dialysis patients.”

Carers quote
Joyce Watt

“ My son’s kidney transplant failed in April 2020 at the start of the pandemic. Every trip to hospital was a worry as there were so many covid patients there plus some were on dialysis. We were very fortunate to be able to build a small extension to Blair’s flat when restrictions allowed and in May 2021 we started home dialysis. It really has been so much better and safer for Blair being able to dialyse at home.”

FAQ’s
Does it mean I will not catch the Covid-19 infection?

A large number of studies have demonstrated a significantly lower risk of Covid-19 infection in patients undergoing home dialysis. This unfortunately does not mean you have no risk of catching the Covid infection as there are various other ways people can get infected with Covid.

Does it mean I can totally avoid coming to hospital?

With home dialysis the number of hospital visits is significantly reduced, but under certain circumstances hospital visits are needed. This is usually decided by a doctor or a nurse but only if absolutely need for clinical reasons.

Is home dialysis free to me?

All equipment and training is provided at no cost to all patients who are eligible to receive NHS services. In addition, help with utility and council tax bills may be available.

Next Steps
If you feel that home dialysis is the way forward for you, then you should discuss this in the first instance with your clinical team who will be able to talk through the options and arrange for appropriate training for you. You also need to ensure that your household supports your decision. However, for so many, home dialysis has enabled them to have a life that includes dialysis but is not dominated by it, many patients on Automated Peritoneal Dialysis (APD) are able to continue working as the treatment is overnight. This is a prize worth pursuing.

About the NKF Peer Support Service
The free service is aimed to support people who:

Would like someone to talk to regarding the options of dialysis at home or have just started home dialysis and would like further support.

Our national service offers an opportunity to patients to have a one-to-one chat and share home dialysis queries, similar life experiences and lifestyle stories with trained peer supporters.

Patients can be matched with a peer supporter who have experienced home dialysis themselves or are a carer of someone on home dialysis.

If you would like someone to talk to and explore the options of dialysis at home, or have just started home dialysis and would like further support, the NKF Peer Support Service is now available

Covering the whole of the UK, our peers are available to give support over the phone, through Zoom and at some stage face-to-face discussions.

If you would like someone to talk to and explore the options of dialysis at home, or have just started home dialysis and would like further support, the NKF Peer Support Service is now available. Call 0800 169 0936 for further information.

About the NKF Helpline
We run the only free UK Helpline dedicated to kidney patients with two fully trained, experienced advisers providing a 5 day per week service to kidney patients, carers and healthcare professionals and renal units.

The NKF Helpline is open from 9am until 5pm Monday to Friday on 0800 169 09 36 or you can e-mail [email protected]

The NKF Helpline is also the UK’s largest provider of kidney-related medical information leaflets with a library of over 200 titles written by nephrologists in simple language for patients and carers. Our information includes Chronic Kidney Disease (CKD), dialysis, transplants, kidney diseases, dietary information, and benefits information.

Whether you require a single leaflet for yourself, or bulk quantities for a renal unit, hospital or Kidney Patient Association, just contact the NKF Helpline.

Download this information in PDF

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own consultant or renal clinic.

© 2020-2030 National Kidney Federation (NKF)
All rights reserved

Written September 2021