People living with kidney disease (PLKD) Decision making ∐

PLKD who struggle to make a decision/remain ‘undecided’ for longer tend to opt for unit haemodialysis (UHD).

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Some PLKD ‘bury their heads in the sand’, pretend it is not happening and delay making a decision.

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Unlike other diseases, CKD progression can be unpredictable. It can be a long-term case of just ‘seeing how things go’; people avoid making decisions because of the unpredictability of progress.

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PLKD on certain pathways, for example, ‘pre-emptive transplant pathway’ often become so fixated with not wanting dialysis that they refuse to plan for another pathway and will not engage with any dialysis conversations.

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Many PLKD tend to make a decision and then justify it retrospectively, rather than weighing up the pros and cons of each option.

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Often by the time patients come to make a decision, they have accumulated a mass of mis information.

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Every patient in Wales is supported to make an informed decision in a timely way based on clinical recommendations and PLKD values and preferences.

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Education is personalized and tailored to individual PLKD needs.

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Education provided, and decision made a minimum of 1 year before treatment is needed (2018 NICE guidelines).

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Dialysis options are considered alongside all transplant options.

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SDM is applied with a home-first approach. Additional time and resources are applied where appropriate to unpick barriers to home therapies and work with PKLD and family to explore all home-based dialysis options.

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Peer-to-peer support workers are introduced early in the processes and options for patients to talk to others is routinely offered.

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PLKD and peer support workers (who have been through these experiences) have the best potential to alleviate fears, encourage people to accept the disease prognosis and make decisions in a timely way.

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PLKD on home therapies can share their positive experiences of home therapies, their personal perspectives and work with health and social care teams to change to a home-first approach.

Demographics ∐

PLKD from areas of deprivation/low socioeconomic status tend to choose UHD.

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Many PLKD from areas of deprivation/low socioeconomic status are more familiar with ‘being told’ what to do. ‘You are the doctor, you tell me what I should do’. They find it more difficult to practice SDM.

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PLKD from lower income/areas of deprivation are supported through health and social care services (e.g. welfare and benefits) for any additional (hidden) costs associated with home therapies.

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Additional Shared Decision Making (SDM) approaches are used to support people who struggle to assert their needs and values, as well as tailored peer-to-peer support.

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PLKD on home therapies and peer-to-peer support workers can support health and social care professionals to identify patients who are not currently on a home pathway, but would benefit from being on one.

Social contexts and services ∐

Many PLKD (in particular older) patients opt for UHD as they benefit from socializing with staff, other PLKD and ‘getting out of the house’.

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PLKD build relationships with staff in their clinics and form meaningful attachments to their clinical care team. PKLDs' assumption then can be that all dialysis units and staffing are the same.

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PLKD on home therapies previous routines/friendships can change after they start home dialysis. PLKD can become isolated, and can lead to developing anxiety and depression.

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Some patients choose UHD as they live alone or in unsuitable housing.

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Universal credit and PIP is not currently set up to support people with ESRD. For example, people on unit dialysis sometimes decline a transplant as they are worried what it will do to their benefit claims; also, people who need to make a decision about future treatment are so concerned about setting up their benefits/paying bills that they put their healthcare needs last. Water rates and services often do not account for people on HHD—which needs a lot of water.

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PLKD utilize the service as intended, not to fulfil unmet social care needs. New services are developed/modified to address unmet social care needs (e.g. isolation, loneliness, home care and social support).

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PLKD should be supported onto a home therapy pathway early and not base decisions on the familiarity of clinics/and clinic staff.

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Each local authority is accessed for its capacity to manage PLKD including numbers, resources and link staffing.

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Additional social services are more routinely accessed e.g. community connectors, red cross, mens sheds, lunch clubs, Dewis Cymru – which can identify different groups of people to support social care and social prescribing services.

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GP services and sign posting are more routinely used.

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Tailored home care packages for PLKD are offered.

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PLKD are offered a holistic assessment when they come into the service and this includes social care needs.

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New roles are developed in the community such as ‘well-being practitioners' or ‘support practitioners' for the purpose of supporting Home therapies of patients.

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Resources and time are spent upskilling nurses to sign post to these services.

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The home therapies teams host regular newsletters and updates to sign post to community activities that do not necessarily need to be based on dialysis or kidney disease.

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Barriers to home therapies are identified early, and patients and full MDT teams work together to address practical and psycho/social barriers to home therapies (e.g. unsuitable housing). Options for care and support at home are explored with social service sector and link workers. Option to move home is presented as last resort and if presented PLKD can stay in local areas.

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People with ESRD are provided with appropriate entitlements to support them over their lifetime irrespective of what treatment they are on.

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Expert PLKD advisors and peer-to-peer support workers can provide input to help design more integrated health/social care services that work for people with kidney disease in Wales over their lifetime.

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PLKD on home therapies can present to the social services sector with support from renal social workers about the need for linked workers/community connectors in local authorities across Wales.

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PLKD stories and experiences can support and develop shared understandings of fears and concerns of home therapies and how this might be different across Wales in particular for those not automatically deemed ‘ideal for home therapies' e.g. living alone, older.

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People with kidney disease can support the creation of business cases to work more directly with social services to develop a system that works better for patients with ESRD over their lifetime.

Expectations versus reality ∐

Treatment outcomes do not always match the goals and expectations of patients.

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Once patients start on UHD, they are unlikely to move to a different treatment option and some patients sometimes regret their decision to start UHD.

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Patients and multidisciplinary teams work together to develop shared understandings of goals, preferences and expectations. Opportunities to revisit this are presented throughout PLKD treatment plan.

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Patients on UHD who are suitable for home therapies are given opportunities to review their decision. Treatment switches can happen in a timely way with minimum burden.

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PLKD and support groups can work with health and social care professionals to produce advice and guidance about what to expect and how to overcome barriers with treatment burden.

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Peer-to-peer support and visits to units from PLKD networks can help to unpick the barriers to home therapies and provide key support to switch.

Family members, close friends, unpaid carers Influences and concerns ∐

The family often (as with PLKD) often do not want to think about disease progression and future treatments. Sometimes, they struggle to come to terms with disease progression.

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The family often has more of an influence on the decision making than the PLKD. Adaptations to the home, anxiety about ‘treatment going wrong’ are common concerns and enough to stop PLKD choosing a home therapy.

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The family (especially in the early stages) worry more than the PLKD, but they do not have the same support as the PLKD.

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The shifting/changing roles of the family into ‘carers’ are not routinely supported or recognized. The family members often don't get the care and support they need and have little respite or opportunities to discuss their unmet needs.

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Family visits are encouraged to discuss their needs and concerns looking ahead.

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Novel approaches to home adaptions are shared early; families have the opportunity to discuss concerns about home adaptions and any issues with their perceptions of safety.

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Care and support is offered equally to the family as they progress with PLKD into RRT.

Professionals: Multidisciplinary teams Bias ∐

Bias in multidisciplinary teams. Some professionals may prefer certain treatments over others, for example, peritoneal dialysis (PD) is currently not discussed as an option with 30%–40% of patients in Wales, but 10%–15% of all patients in Wales are eligible for PD.

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There is a lack of acceptance of standard of evidence of benefits of different types of dialysis.

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It is sometimes a case of ‘better the devil you know’; some clinicians just default to the history of ‘their unit’ and cannot easily see a pathway outside of that.

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There are Inconsistencies/disagreements on who is eligible for home therapy, for example, comorbidities, frailty and low quality-of-life (QoL) score.

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Regional variation across Wales in terms of what treatments are available, offered, discussed and subsequently chosen across Wales, for example, 50% of frail patients over 70 chose maximum conservative management in one region, but in others, the figure is as low as 9%.

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Full multidisciplinary team meetings are held regularly to minimize conscious and unconscious potential bias.

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Audit data are presented to MDTs regularly.

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Updated research is shared and assimilated e.g. ‘Prepare for kidney care' and other relevant data sets.

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Welsh renal professionals receive regular and up-to-date training regarding frailty scores and QoL training. MDTs could review patient data and agree on reporting and consistency. Audit data are monitored for consistency.

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Reduce or eliminate variation in availability of treatment options across Wales.

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MDTs involved in educating PLKD about options receive up-to-date training on different treatment options.

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PLKD and support groups can help make MDTs more aware of the impacts of conscious and unconscious bias and work together to address it.

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PLKD can recollect their experiences of learning about treatment options. This can support MDTs to continue to present and discuss options in a suitable format for each patient.

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PLKD can use their influence to ensure sharing and feedback of information on patients between ISPs and NHS.

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PLKD and wider key stakeholders can support a redesign of patient education materials, utilizing their regional knowledge and recent experiences.

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(note that patient-specific details cannot be shared outside of the NHS and lack of resources and staffing is not easily changed through CoPro).

Variation in practices ∐

There are regional and local variations in paper-based educational materials.

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There are regional and local variations in the ways in which education is delivered, for example, nurse-led patient groups, peer-to-peer support networks, patient-led education sessions. Multidisciplinary team (MDTs) meetings, shared decision making tools.

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Education materials are pan-Wales, with consistent messages. Individual units and professionals can tailor core materials as they see fit into their patient education programme.

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Clinical nurse specialists across Wales work together to pool knowledge and resources to deliver a varied MDT and patient-centred education programme.

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Multiple learning strategies (video, online, social, peer-to-peer, paper based) are deployed to support patients.

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Education is focussed on patient experiences first and not on ‘the business' of dialysis.

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PLKD and wider key stakeholders can work with Clinical Nurse Specialists to support professional practice and vice versa to improve the consistency of education whilst at the same time providing best care for patients.

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Charities can work together to help NHS develop education materials, reduce duplicity and ensure that patients are not overloaded with information and instead education is tailored to patient preferences from the outset.

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Patient stories, blogs and resources are used as the templates in which education is built around. Expert patients and family members can be supported/employed to coproduce education materials.

Staffing and training ∐

Not all predialysis nurse specialists are fully trained in the available home therapies.

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Some AHP posts in remain unfulfilled for long periods of time, for example, clinical psychology and renal social workers.

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Not all professionals feel comfortable discussing disease progression, prognosis or are trained in ‘difficult conversations’, for example, ACP.

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All predialysis clinical nurse specialists are up-to-date trained (with review) on various home therapies.

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Renal posts are advertised and filled in a timely way. Benefits of job positions are advertised widely, highlighting potential career pathways and diversity of working in renal health and social care.

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Up-to-date training is provided for all Multi-Disciplinary Teams. ACP ‘experts' are identified across regions.

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PLKD on various types of home therapies can be invited to training to share their most recent experiences and learning and support in keeping training and reviews up to date and current with patient experience.

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PLKD can share their views on the pros and cons of ACP conversations with the MDTs.

Organizations: NHS, Wales Renal Clinical Network (WRCN), Kidney Charities, Independent Service Providers (ISPs), Welsh Government Configuration of services ∐

PLKD's first experience of dialysis tends to be in a unit or around unit dialysis.

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PLKD coming into secondary care often have little or no understanding of their disease condition.

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Currently, most people only meet their ‘home therapies' teams when they are ready to start on a home therapy.

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Palliative care services are not currently part of the renal service and renal nurses are not trained in end-of-life care. People who chose conservative management are not getting access to specialist care palliative care services.

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There is a lack of dedicated ‘training areas’ for people who are on a home pathway or additional training areas for people who are uncertain/worried about home therapies, for example, option to try nocturnal dialysis, or self-needling, and so forth.

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There are three independent service providers (ISPs) in Wales. Each provider has different focusses in terms of dialysis modalities.

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Most units are run by ISPs who specialize in different treatments and they do not all currently offer all options for home therapies.

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Many MDTs are unaware of the services that kidney charities provide and do not routinely sign post to them.

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Opportunities are taken to discuss dialysis options and choices at home, outside of the unit in an informal setting (E.g. café, meeting room and at home).

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Transitions from primary care to secondary care are more clearly defined from the patient and professional perspectives.

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Home therapies teams are introduced early as part of the patient overall care team

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Primary care/geriatrics/palliative care services are more integrated into renal secondary care services.

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Every training centre in Wales has dedicated ‘share care' and ‘share care to home' areas in centre.

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ISPs work with NHS, WRCN and the Welsh Government to support targets of 30% on home therapies.

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Ensure the consultant role on the unit is visible and is able to champion for home therapies.

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Kidney Charities work to ‘join up' different parts of the service (ISPs, Policy contexts, MDTs, NHS) to ensure that the home-first agenda is followed and supported. Opportunities to raise awareness of services that can support patients chose home, or live well at home are provided.

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PLKD can work with professionals to create photo books, videos, virtual realities of home therapies as well as share their stories of home therapies with people predialysis. Charity providers can work to create home training areas that look and feel more like a home and a home environment.

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Renal Charity providers are also signposted as part of the patient home care team

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Charity providers and PLKD representatives can use their experience, expertise and creativity to design and develop appropriate dedicated training areas for pathways to home.

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ISPs share their barriers and enablers to home therapies with the WRCN. Outcomes are fed into the overall service design.

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Kidney charities work with the various organizations (including wider sectors below) to (a) identify areas of need, (b) barriers to home therapies and (c) agree on and co-ordinate plans to implement them.

Limited resources ∐

For the first time in 10 years, the WRCN was forced to request a net increase in investment from NHS Wales to sustain the dialysis service.

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Currently, the demand for UHD is outstripping supply.

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The WRCN can invest funds to meet the needs of the whole service including social care and well-being.

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It is about asking who ‘should be treated in hospital' as much as asking ‘who is suitable for home therapies'.

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PLKD can map out what, where and how the WRCN could invest in the CKD service as a whole, using their experiences mapped against the service delivery.

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PLKD and professionals can work together to promote the benefits of home therapies over UHD. Peer-to-peer support workers can help identify any unmet social care needs of patients on UHD and work with renal professionals and the social care sector to address them.

Policy contexts ∐

Increasing home therapies is a Welsh Government prudent healthcare policy, but the numbers have remained static.

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WRCN target for patients on home therapies is 30%. It was 20% from December 18 to May 19 (6 months). This is the highest it has been.

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Welsh renal professionals and PLKD understand the importance and value of prudent healthcare on the complete CKD service.

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All renal professionals are aware of WRCN targets; they are monitored and ongoing opportunities for shared learning are made available.

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Patient and carer advocates can work to promote the importance of prudent healthcare and what it means for them, that is, benefits of shifting costs or reducing spending in one area.

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WRCN targets are higher than NICE guidance. Patients and professionals can promote the Welsh service as an exemplar of home therapies nationally.

Clinical recommendations  Outside secondary care including early-stage CKD, the public, wider health and social care services Overall Health literacy Population Wider service configurations ∐

Resources are reconfigured/re invested into key identified social care services to support PLKD's and family members' unmet social care needs and ensure that these needs are not barriers to choosing a home therapy.

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Welsh CKD services should continue to promote and take opportunities to promote organ donation registration.

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Involvement of social services and PLKD can help identify more quickly the social services which could potentially be invested to support uptake of home therapies and best patient care.

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Transplant recipients and people waiting can work with WG to share their story and register as a contact with comms teams.

Research ∐

Opportunities for new research including clinical trials and opportunities to work together to reduce time on treatment development and maximise progress are taken. New treatments should result in fewer people needing dialysis, early detection and prevention of disease progression. Research funding is directed to kidney disease.

Culture Public perceptions and attitudes – Kidney charities can work with wider charity providers and Public HealthWales to support raising awareness of ESRD treatments.