Supporting patients with Chronic Kidney Disease

Senior Chronic Kidney Disease (CKD) Clinical Nurse Specialist Rebecca Lorimer talks about her role and the support available for patients.

What is your role?

“Whilst there are many rewarding aspects of my job, what I find most fulfilling is the privilege of guiding patients through their CKD journey.

“Together with my colleague Jude, we provide care to around 500 patients with CKD – we offer pre-dialysis education, manage renal anaemia, and run Hepatitis B vaccination clinics. Additionally, we facilitate the Patients Know Best platform, allowing kidney patients to access and track their blood results online. I also work closely with our medical colleagues in the Low Clearance clinic, which is dedicated to supporting patients with advanced kidney disease. Beyond clinical care, we are committed to promoting patient advocacy and engagement, running regular education sessions and a peer support service to foster community, shared experiences, and emotional resilience among people with CKD.

“Whilst specific numbers and statistics fluctuate over time, the prevalence of CKD is undoubtedly on the rise. Within the CKD team, we’ve already seen a 15% increase in referrals for pre-dialysis education compared to the previous year.”

What is your favourite part of your job? And what are the challenges?

“I often encounter individuals at their most vulnerable, and they place their trust in me to help them make informed decisions about their health. The transformation I see in patients, from uncertainty to strength and clarity, reinforces the significance of our work and the profound impact it has on their lives. Helping patients take control and find hope in the face of their challenges is what keeps me dedicated to my role.

“One of the most challenging aspects of my role is navigating the emotional demands of having difficult, life-changing conversations with patients. As a healthcare professional, it is hard to see patients struggle, especially when their resilience and determination isn’t always enough to overcome the challenges they may face. Fortunately, I am very lucky to have an extremely supportive specialist team that I can talk to whenever needed.”

What are the main causes and what can we do to prevent CKD?

“Chronic kidney disease is a long-term condition where the kidneys gradually lose their ability to function properly over many years. The two main causes for CKD are uncontrolled diabetes and high blood pressure. Other contributors can include genetic conditions, autoimmune diseases such as lupus or vasculitis, recurrent kidney infections, or prolonged use of certain medications like ibuprofen or other non-steroidal anti-inflammatory drugs.

“Prevention of CKD involves adopting a proactive and healthy lifestyle to reduce risk:

• Manage your diabetes: Regularly check your blood sugars and make sure they are within range
• Maintain a good blood pressure: I recommend investing in a home blood pressure monitor and checking blood pressure readings regularly.
• Eat a healthy, balanced diet: Whilst there is no specific ‘kidney diet’, a diet low in salt, processed foods, and saturated fats can help control blood pressure.
• Exercise regularly: Exercise helps to maintain a healthy weight, improves cardiovascular health, blood pressure, cholesterol levels and lowers your chances of getting diabetes or heart disease.
• Stay hydrated
• Avoid smoking and limit alcohol: Smoking harms the blood vessels and decreases blood flow to the kidneys, whilst excessive alcohol intake can raise blood pressure.
• Be cautious with medications: Long-term use of medications such as non-steroidal anti-inflammatory drugs (e.g. ibuprofen), especially in high doses, can restrict blood flow to the kidneys and damage them over time.
• Attend your routine medical check-ups”

What are the symptoms?

“In the early stages, CKD is often asymptomatic, which can make it difficult for people to recognise or come to terms with the condition. Many people feel completely fine and continue functioning normally until their kidney function decreases to about 10–15%. However, as CKD progresses, some common symptoms may become noticeable:

• Fatigue
• Loss of appetite
• Swelling
• Nausea/vomiting
• Itchy skin

“Whilst there is no cure for CKD, treatment focuses on managing the underlying causes, slowing disease progression, and alleviating symptoms.”

What support is there for patients with CKD?

“There are several support groups and events available to help patients and their families.

• Patient Education Information Sessions – Jude and I facilitate these sessions every other month at the Norfolk and Norwich Kidney Centre. They run from 12.30pm to 4pm and include information on the various types or renal replacement therapy we offer. These sessions fill up quickly, so if you or a family member have been diagnosed with CKD and are interested in attending, please call 01603 288920.
• Peer Mentor Scheme – We have a group of volunteers who have lived with CKD for some time and are eager to share their experiences with others.
• Polycystic Kidney Disease (PKD) Charity – PKD Connect is an online meetup via Zoom where anyone affected by PKD can chat. Additionally, the charity often host local face to face events in Norfolk pkdcharity.org.uk/support.
• United Norwich Kidney Patients Association (UNKPA) – A local charity run by patients, for patients. UNKPA supports kidney patients and their families in Norfolk.
• The Norfolk Renal Fund – This charity provides financial support to kidney patients, helping cover the cost of equipment and services not available through the NHS. Visit norfolkrenalfund.com.
• Kidney Care UK – Sandy Lines is the Local Advocacy Officer for Norfolk. She can assist individuals in accessing support services, help with benefits and welfare checks, offer support with employment and housing issues, and provide advice on respite or dialysis holidays. Email lines@kidneycareuk.org”