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Chronic kidney disease: meeting the challenges

Beverley Matthews MSc RN
Director, NHS Kidney Care

Nurses in primary care are uniquely placed to identify and lead improvements in the integration and co-ordination of care for people with chronic kidney disease.

Around 15 million people in England have a long-term condition. This group accounts for 29% of the population, but uses 50% of all GP appointments and 70% of all inpatient days. In addition, it is estimated that the treatment and care of those with long-term conditions accounts for some 70% of the primary and acute care budget in England.

More significant than the impact on resources is the effect that long-term conditions have on quality of life for patients and their families. Around 170,000 people die prematurely in England each year in total, with the main causes being cancers and circulatory diseases.

The Heath Survey for England 2009 estimated that around 5% of men and 7% of women have chronic kidney disease (CKD).1 However, the condition is frequently unrecognised and often coexists with other conditions, such as cardiovascular disease and diabetes.

Early detection in primary care
The risk of developing CKD increases with age and is particularly common in people with diabetes and cardiovascular disease. There are usually no symptoms of CKD until it becomes very advanced, but it can be detected by a simple blood test (eGFR) and testing the urine for blood and protein.
Early detection of CKD is important as it allows treatment to help protect remaining kidney function and reduce the risk of myocardial infarction and stroke. Protecting kidney function may avoid the need for dialysis or transplantation later in life.

Primary care services are well placed to identify people at risk of CKD and offer testing. People identified with CKD should have their cardiovascular risk assessed and be offered treatment and support. The National Institute for Health and Clinical Excellence(NICE) Clinical Guideline 73 describes the key aspects of the diagnosis and management of CKD in the community.2 Not all people with CKD will need referral to specialist services - again, the NICE guideline sets out who needs to be referred.

Co-ordinated care planning
It is widely recognised that improving a patient's knowledge about their condition and encouraging greater self-management can lead to better health outcomes. Nowhere is this more important than for patients with CKD. In the early stages, effective self-management can significantly slow the progress of the disease. Where it does progress, and renal replacement therapy is required, patients who have already been fully involvedin their care planning are much more prepared to make decisions about their treatment options.

Care plans should be developed in partnership between the patient and the integrated team, including professionals from primary and secondary care such as nephrologists, dieticians, physiotherapists, nurse specialists, psychologists and social workers. Care plans should be holistic, addressing all the patient's needs together, rather than addressing individual conditions in isolation. Evidence shows that involvement in care planning improves patients' ability to self-care, improves concordance with treatment plans and improves their overall health outcomes.

Care planning also enables the patient's family or carer tobecome involved in shaping the treatment plan. Long-term conditions have a significant impact on those who care for the patient. This is particularly true for patients on dialysis who need support with travel or with home haemodialysis, which often has to be a partnership between the patient and their carer.

From the carer's perspective, satisfactory involvement in care planning decision-making requires a strong sense of inclusion in the process. Additionally, carers need to feel that there is someone they can contact when they need to and that the service is responsive to their needs.

Care at home
Self-care, care at home and home dialysis offer real benefits for kidney patients. They link closely to the vision of an NHS that is organised around patients, giving them more choice, convenience and control over their care. Over the past year, NHS Kidney Care has been engaging with dialysis patients and local care teams to influence the way services are planned and designed and to promote choice for kidney patients. Some of the most powerful contributions to these events have been the personal stories told by patients and carers about the impact that home dialysis has had on their lives (see www.kidneycare. nhs.uk/_Ourworkprogrammes-Preparation-Improvingchoice. aspx for more information).

Many treatments required by people with long-term conditions that have traditionally been provided in hospital can be delivered far more conveniently and cost-effectively for patients in their own homes or primary care settings. A great example of how primary and secondary care can work collaboratively to provide patient care in a way that suits the patient rather than the service, while also saving money, is Cornwall's 'Intravenous Iron at Home' initiative (www. kidneycare.nhs.uk/_Whatworks-QIPPExamples.aspx).

Because of the rural geography of Cornwall, many patients with CKD-related anaemia had to travel for up to an hour to hospital for a ten-minute appointment to receive an injection of iron. Since 2003, nurses from a number of community hospitals across the county have received training so that they are able to administer the injection in the community hospital or in the patient's own home.

This change has no impact on clinical quality, as the patient receives the same treatment. However, there is a beneficial impact on safety as patients treated at home are at lower risk of developing a healthcare acquired infection and patients and carers frequently comment on their improved experience. There have been no adverse events reported from community-given iron since its introduction in 2003.

In addition, it is significantly more cost-effective for the NHS. It is estimated that in 2010 the service saved the NHS over £150,000, based on 217 patients with an average of six appointments each year and with a third of them requiring transport or recouping travel costs.

The important role of carers
While patients' lives are being improved through dramatically increasing the choice, convenience and control available through self-care, care at home and community based services, we need to be mindful of the impact that this has on families and carers. Carers have a valuable role and they need to be involved and supported. One carer described the transition to becoming a carer as 'like a bereavement' (www.kidneycare. nhs.uk/Library/CarersReport.pdf). Dialysis patients will often speak of how they have been liberated to live as normal a life as possible by moving to dialysis at home rather than in centre but their carer will sometimes speak of the burden and worry this has created for them.

Support services should be commissioned for carers in the same way they are for carers of cancer patients. As well as patients having regular check-ups, carers could be asked how they are doing at regular intervals. A helpline for carers to call could also be used to access greater carer peer support, and meetings, events and appointments at weekends can be easier times for many carers to attend.

Carers are a core part of the team and healthcare professionals should be encouraged to involve them at every stage, inviting them to watch and ask questions, building their understanding and confidence.

Improving services for patients with long-term conditions
Improving the quality, safety and efficiency of care for patients with long-term conditions requires greater integration and co-ordination of services. Integration needs to improve between local secondary and primary care systems but co-ordination can only happen on the frontline where patients receive care. Nurses in primary care are in an excellent position to take a lead in identifying and implementing innovations to improve co- ordination and the quality, safety and efficiency of care.

There are three key questions that nurses can ask of their service:

  • How could we co-ordinate better with other services so patients are treated in a more holistic way, comorbities are managed together rather than in isolation, and risk factors for other conditions identified at an early stage? Could better care planning help achieve this?
  • How could we provide our services as close to the patient as possible? Could procedures currently carried out in secondary care be delivered more safely, conveniently or efficiently in the community or in the patient's own home?
  • Could we do more to support our patients' carers, building their involvement, understanding and confidence?

Conclusion
Supporting people with long-term conditions is one of the greatest challenges facing the NHS. Nurses in primary care are uniquely placed to identify and lead improvements in the diagnosis and management of CKD and help ensure that the needs of patients, their families and their carers remain at the heart of how we deliver healthcare services.

References
1.    NHS Information Centre. Heath Survey for England - 2009: Health and Lifestyles. London: NHS Information Centre; 2010.
2.    National Institute for Health and Clinical Excellence (NICE). Early identification and management of chronic kidney disease in adults in primary and secondary care. London: NICE; 2008.

Resource
NHS Kidney Care www.kidneycare.nhs.uk