11.0 Ongoing Support

Nicola Pacy, RGN. Home Haemodialysis Manager, Wessex Kidney Centre, Queen Alexandra Hospital, Portsmouth, UK
nicola.pacy@porthosp.nhs.uk

Introduction

If you decide to dialyse at home you will be given support from your home team, this will be for you and your partner or carer. Home dialysis will change your lifestyle and those who live with you. Your home team will be able to discuss these changes with you and what support is available from your team.

In this chapter we will take you through the support that should be available to you to make home dialysis successful.

11.1 Dialysis Adequacy and Well-being

11.1.1 Check-ups and general support

You should be offered regular contact from a member of the home team which can be a home visit, attending a nurse led clinic or telephone and e-mail support. Frequency will depend on your needs but monthly check-ups are common. You will usually see your kidney specialist every 3 months1.

11.1.2 Visits to center

If you do well at home, visits to the main hospital should be significantly reduced. You will still need to go for your clinic appointments and any investigations that are needed. If you are able to attend a nurse led clinic it can be beneficial. Many nurse led clinics can monitor your vascular access, offer dietary advice, anaemia management and monitor your bloods.

11.1.3 Blood sampling

You are usually responsible for taking your own monthly blood tests and sending to pathology via GP/satellite dialysis units or the home nurse. Some patients attend their local pathology center or clinic so that bloods can be sent in a timely fashion. Most units will follow the unit policy for in center Haemodialysis patients, typically this will be:

  • Urea and electrolytes before dialysis monthly.
  • Full blood count monthly.
  • Hepatitis B, C and PTH 3-6 monthly.
  • Iron studies as requested (often quarterly).

11.2 Patient Empowerment

11.2.1 Expert patient and carer

When you do Home Haemodialysis you become an expert patient and you have more control over your health and treatment options2. Involved care partners often find the same. Becoming an expert patient is empowering for you as you are more involved in your care and decisions that are made about you. It is your responsibility to make sure that you do your treatment as you have been trained and follow your prescription. You must should also report any problems or issues to the home team and in return the home team are responsible for providing feedback or support to help you.

11.2.2 Community Support

It is the joint responsibility of both the home team and yourself to ensure that community services have been informed that Home Haemodialysis will be carried out. Letters may need to be supplied to:

  • Clinical waste services.
  • General practitioners.
  • Utility providers (electricity/gas/water).

11.3 Procedural Support

11.3.1 Machine troubleshooting

Basic trouble shooting will be taught during training. The level of support given by the company in troubleshooting will depend on the equipment chosen for the home therapy. Some centers have dedicated renal technicians who are available to support you at home. Some companies will provide a dedicated 24/7 helpline that you can access and if necessary a new machine can be sent to your home within 24 hours.

11.3.2 On call

Some centers will offer a 24 hour on-call service which will offer advice and support for any clinical or technical problems that you may have. Separate on call may be provided for nursing (clinical) and technical issues.

11.3.3 Managing machine alarms

Before you go home you must be confident with all aspects of your care and how to solve and act upon machine alarms confidently you will be trained how to do this with the use of simple trouble shooting guides, either paper or online.

11.3.4 Remote monitoring and technology

The use of technology is becoming more popular with the use of specially designed Apps that can record dialysis sessions and problems so that center staff are able to access the data in real time and act upon it. Some centers use Skype to communicate with their patients and having access to an e-mail address is helpful. Patients in the UK are able to monitor their own bloods with the use of Renal Patient View to manage blood results and if your country has similar system patients should be encouraged to access this.

11.4 Maintaining Competency

11.4.1 Competencies

You will be provided with training materials to ensure that you are competent to perform your own treatment at home, your trainer will not let you dialyse at home unless they feel you are safe to do so.

11.4.2 Review of competencies

As part of your home visits the nurse will check that you are happy and safe performing your treatment. Extra training and information can be given on these visits.

11.4.3 Post-hospitalization

If you have been admitted to hospital for a long period of time and may have lost your confidence to dialyse at home then a member of your home team should be able to offer support for retraining either at home or in the training centre, it may be that you just want the nurse with you for your first session back at home.

11.5 Vascular Access

11.5.1 Vascular access monitoring

During your training you will be taught to recognize the signs of infection and failing access, for example raised venous pressures, prolonged bleeding times and difficulty with needling.
If the equipment is available transonic readings can be performed as part of your monthly home visit. These will help to show if there are any problems with your access.

11.5.2 Vascular access specialist

To make sure that your access is working well and if you have any problems you will be given the contact details of your vascular access specialist to arrange fistula-grams and any procedures that are required.

11.6 Home Visits

11.6.1 Frequency of home visits

Following training you should have home visits from your nurse on a weekly basis for the first few weeks. This will be to make sure that you are safe and confident at home.

11.6.2 Psychological support

Sometimes patients and carers may need extra support when dialyzing at home, some patients may feel isolated if they are used to dialyzing in a busy unit. If you feel that you need more support than your home team can offer there are usually counselling services, social workers and psychologists that you can be referred to.

11.7 Support groups

Local support groups may be beneficial for both social and financial support. Charitable organizations may be able to offer grants to help with financial difficulties, Kidney care UK being one.

www.kidneycareuk.org

11.7.1 Respite care

Sometimes patients or carers need a break from the routine of doing their own dialysis. If possible your unit should be able to offer the option of respite care if you feel you need it. This can be done by having your dialysis at the training center, the local dialysis unit or maybe a nurse to provide some dialysis support at home if that service is available. Many countries have private nursing agencies that may be able to help if the patient can pay.

11.7.2 Financial support

Financial stress is common for families having dialysis and many people on dialysis have a reduced income3, however the flexibility of dialyzing at home should make returning to work easier. If you have financial concerns it is important that you tell the home dialysis team or the social worker so that they can make you aware of benefits or reimbursements that you can claim.

CONCLUSION

There are many supports at home to make the transition smoother and also to help you manage your dialysis in the best way possible. If you think you need more support please let your health care professional team know.

References

1. Hothi D, Stronach L, Harvey E . Home Dialysis Summit, Increasing Uptake of Home Dialysis to Benefit Patients and the NHS 2013.Home haemodialysis. Paediatric Nephrology 28:721–30 Paediatric Nephrology 28:721–30

2. Kent Chiro/Med Wellness Clinic. Patient education. Available from https://www.kentchiromed.com/portfolio-view/patient-education Accessed Aug 8,2016

3. Ikonomou M,Skapinakis P,BalafaO,Eleftheroudi M,Damigos D,SiamopoulosKC. The impact of socioeconomic factors on quality of life of patients with chronic kidney disease in Greece. JRen Care2015 Dec;41(4):239-46.