Home haemodialysis - practical aspects

A guide for patients, carer’s and health care team

VERSION CONTROL
Version / Date Issued / Brief Summary of Change / Owner’s Name
Draft 1.0 / 15.07.11 / First Draft / Martin Wilkie
Draft 1.1 / 26.10.11 / Contributions from: M Lean, R Flint, C Hayden, E Broadley, P Broadley, C Stubbs, H Lintern, Paul Taylor, Steve Hibbert / Martin Wilkie
Draft 1.2 / 03.01.12 / Formatting – to be circulated for comment at the Home Therapies Forum (16.1.12) / Rebecca Campbell / Martin Wilkie
For more information on the content or status of this document, please contact: / Dr Martin Wilkie
Clinical Lead for Home Therapies & Shared Haemodialysis Care, Consultant Nephrologist
Sheffield Kidney Institute, Northern GeneralHospital, Sheffield S5 7AU
Tel:0114 2715327
E-mail:
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Contents

Page
Introduction / 3
Advantages and challenges of HHD / 3
Patient suitability for HHD / 4
Practical arrangements / 5
4.1 Home alterations / 5
4.2 Financial aspects / 6
4.3 Technical support / 7
4.4 Trouble Shooting and Emergencies / 7
4.5 Utilities / 8
Nursing requirements / 8
Medical support / 9
Agreements, insurance and legalities / 10
Training facilities and arrangements / 10
Holidays and respite dialysis / 11
Patient and Carer Support / 11
Evaluating the service / 11
  1. Introduction

This guide is intended to provide practical information relating to the successful set-up and support of patients on home haemodialysis (HHD). It is hoped that a clear guide to the processes and requirements will help patients, carers and their dialysis units to feel able to take on the challenge and realise the benefits of dialysing at home. It is based on discussions with patients, carers, nurses, doctors and administrators from Yorkshire and the Humber and further afield. It will be ratified by the Yorkshire & the Humber Renal Strategy Group.

A lively HHD program requires leadership and enthusiasm from dedicated nurses, patients, their carers and doctors.

  1. Advantages and challenges of Home Haemodialysis

The distinct advantage of HHD is that is provides a treatment that is relatively independent of the hospital. The patient gains control of their own condition learning to become an expert, empowered in the management of their kidney disease. HHD offers flexibility of treatment times and schedules with the important option of dialysing more than three times weekly or for longer treatment sessions than are usually available in centre. There is evidence that both more frequent or longer dialysis sessions are beneficial for patient well being.

The challenge is to become familiar with the processes and procedures of the dialysis treatment, and to gain confidence in its safe management. It is our experience that patients become very confident with their own care, from learning to needle the arterio-venous fistula, to setting up the dialysis machine, programming the prescription and disposing safely of contaminated waste. The button-hole needling technique provides an easier and more consistent approach for patients to learn self-needling.

  1. Patient suitability for Home Haemodialysis

Patient eligibility criteria for HHD have been discussed at length (including being the focus of discussion at a Yorkshire and Humber Home Therapies and Self-care forum).

It is important that the process of patient selection is based on patient safety considerations and the practical considerations around treatment management rather than being seen as a medically driven value judgement.

The key criterion is that the patient should be able to dialyse themselves safely or with the assistance of a willing carer. It is clearly important to the team responsible for the patient that this is achieved which explains some of the rules that have evolved. The following criteria (table 1) are generally agreed.

Table 1: Patient Eligibility
The patient should –
  • be stable on dialysis – i.e. should not be at risk of collapse during the dialysis session
  • have good quality dialysis access, and although primary arterio-venous fistulae are preferable, grafts and lines are also possible. The key determinant is that the access should be reliable and safe to use – otherwise the patient will continually have to return to the unit for medical attention to the access
  • agree to take on the responsibilities of HHD
  • have a suitable home environment to permit dialysis being conducted at home. This may require a degree form of home adaptation.
  • be evaluated as being able to conduct their treatment safely – i.e. having achieved a competence in self-dialysis. The health care team will need to be very confident regarding the stability and capability to manage potential dialysis complications for patients who intend to dialyse at home.
Please note, that the patient does not necessarily require a carer / dialysis buddy – although this is preferable it is by no means essential. Indeed, it is important that unacceptable pressures are not placed on carers and that carers and patients feel well supported by the home therapies team. Lone patients will require more support from the nursing team.
  1. Practical arrangements

4.1Home alterations

It is important that required home adaptations are agreed in detail with the patient and their family. Plans should be available supported by appropriate illustrations so that the patient and their family know what the adaptation will look like before the work is done. A mutually convenient time table should be agreed for the work to be done.

Home adaptations do not need to be expensive and the simplest solution should be achieved where possible. The following table contains a conventional check list.

Table 2: Home Adaptations check list
  • a water proofed floor area (e.g. a dialysis tray),
  • plumbing an power for the reverse osmosis and dialysis machines
  • power supply
  • storage shelf
  • dialysis chair
  • lighting

The process would be best outsourced to a competent agency.

4.2Financial aspects

This can be divided into the set-up and the revenue costs.

4.2.1. Set-Up Costs – Capital

Although HHD is considered to be financially cost-effective in comparison with unit based HD the capital cost for patient set-up can be a real barrier. Renal units are subject to the capital procurement teams of their local hospital where priorities can be very significantly different to those of the renal team.

Table 3: Capital Costs
Home adaptation / range £2,000 - £10, 000 across Y & H
Reverse osmosis machine / approx £4,000
Haemodialysis machine / approx £14,000

The costs of the home adaptation can vary considerably – the range above having been collected from across Y & H in 2010. The discussion in the Renal Association HHD working party suggests that home adaptations should be “more attractive or innovative”. However the costs are an important consideration and should clearly be reasonable. Interestingly Sheffield offers the lowest adaptation grant in Y & H and has the highest number of patients on HHD.

In accessibility of capital for home HD set-up results either in significant delays for patients who would like to be able to take up the modality. Alternatively renal units make arrangements to lease equipment – which overall is more expensive for the NHS. A possible solution would be for the tariff for HHD to be top-sliced to facilitate the provision of capital grant. I would estimate that £3,000 annual charge on a £24,000 tariff would provide possible £20,000 grant on the basis of amortisation over 7 years.

4.2.2. Ongoing Costs - Revenue

The revenue costs need to be sufficient – and have been estimated at £17,000 per year which is similar to the service line report in Sheffield.

4.3Technical support

Once the home alterations have been completed, the Renal Engineers will need to arrange to complete the installation of the Dialysis Machine and Reverse Osmosis Unit.

The Renal Engineers will need to provide technical support. This support will vary from unit to unit as required.

The Renal Engineers will need access from the patient to carry out an annual service on both the Dialysis Machine and Reverse Osmosis Unit (which requires a full day). Also they will need access to carry out water sampling.

4.4Trouble shooting and emergencies

Patients need to have clearly identified contact numbers so that they can obtain prompt advice as necessary. Laminated instruction sheets should provide clear guidance on what to do if problems arise and who to call. It is important that when patients or their carers call for help that they are able to contact appropriately experienced individuals who can provide the right level of support and advice. Information should be clear about whether nursing or technical advice is required and who to contact. The individual taking the call should be sufficiently experienced to be able to trouble shoot and advise the patient appropriately. Patients and their carers will require refresher courses in trouble shooting for infrequent problems that they may not see commonly.

A resource file should be available on the dialysis areas giving information to nurses about HHD with documentation to complete if a home patient rings – including the nature of the problem, the advice offered and the outcome.

4.5Utilities

HHD patients are required to use their own domestic resources to support their treatment such as power, water and heating. It is therefore important that this should be adequately reimbursed. The following arrangements are made in Sheffield – and need to be debated across Y & H.

Electricity and water costs are reimbursed based upon the estimated energy/water consumption per hour of the machines the patients have been given, the number of hours of HD the patient has been prescribed and the current cost of the utility per unit. Patients are required to provide the renal unit with copies of their utility bills so the current cost of the utility can be verified. Energy consumption is calculated using a matrix provided by the Trusts Biomedical Engineering Department. The Renal Directorate does not currently reimburse patients for heating costs.

  1. Nursing requirements

Sufficient nursing with respect to patients and their carers at home is required for:

Assessment – for potential home patients, discussions with potential carers

Preparation – accommodation, involvement of social workers regarding housing arrangements, Multi Disciplinary Team (MDT) involvement including architect, builders, technicians, dieticians, obtaining the required equipment for patients and arranging re-imbursement. Identification of utility providers so that reimbursement can be arranged. Also setting up arrangements with the utilities for unexpected outages.

Training – includes new patients, retraining on new machines, retraining carers and training new carers, retraining and support for new access (which may be ongoing).

Support – building up new needle sites, respite dialysis in centre (e.g. for vulnerable patients when carers go away including mothers with young children), patients who have angiograms, chemotherapy, terminal care, for patients with significant co-morbidity at home (e.g. myeloma patient with autologous bone marrow transplant). Day to day management of patients at home – for example reviewing blood results, anaemia control, blood borne virus control, holidays, intercurrent problems as they occur for example power failures, machine problems, needling problems, general ill health that may impact on their ability to dialyse at home. Following up patients following intercurrent admissions (the home staff are often not informed when patients are admitted or discharged).

There needs to be a consensus on how many nurses and what grades are required (including level 3 support workers) – Erika to input please

  1. Medical support

Sufficient medical support should be required to –

  • Review home dialysis patients on a regular basis in clinic
  • Perform regular MDTs with the nursing staff and ensure prompt care planning.
  • Manage day to day queries regarding patient care
  • Review patients as necessary when they require dialysis in centre or are admitted to hospital with intercurrent medical problems.
  • Provide appropriate prescriptions, write reports and necessary correspondences.
  1. Agreements, insurance and legalities

A formal contract is not required between the centre and the patient dialysing at home. However it is important that the patient and the health care team are clear of their responsibilities.

Patients need to know that their home insurance may be affected by performing HHD and to inform their insurer.

  1. Training facilities and arrangements

The following elements should be taken into consideration:

Preparation of training documents – instructions, competencies, protocols and procedures.

Arrangements for patient training programs – in hospital and at home

Training for carers - Carrying out training for carers.

Refresher Courses - Carrying out refresher courses) for patients and their carers

Training for ancillary components - such as self-administration of iron, tinzaparin, new needle site

Time required to train an average patient is usually 5 – 7 weeks of 4 hours 3 times per week approximately. There is scope for attending patients more than 3 times per week.

There is a requirement for flexibility to fit in with the patient – e.g. 7 am until 6 pm. The dedicated training nurse is regularly working extra hours to fit in with the patient requirements for training and with the on going work load e.g. trying to train 2 patients at the same time, or offering support for an established patient while training another.

Liaising with shared care nurses and patients on the HD units so that training can be dove tailed with their requirements.

Requirement for continued training and assessment to identify whether further training requirements are necessary and to review patients general progress and support.

  1. Holidays and respite dialysis

Holidays both within and outside the UK are possible for HHD patients with adequate planning.

  1. Patient and carer support

It is very important that patients and their carers feel adequately supported to dialyse at home. Patients on HHD can at times feel isolated and the development of patient networks can be valuable. Available resources will include the services of social workers and counsellors.

  1. Evaluating the service

The service should be evaluated on a regular basis by users and to that end a survey that has been used in Sheffield is attached.

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