Specialist Lupus Nurses

LUPUS UK is the only charity that provides funding for Specialist Lupus Nurses in NHS hospitals. We recognise the substantial benefit and positive impact such roles offer for people affected by lupus.
Specialist Lupus Nurses play a vital role in providing extraordinary care and support to people with lupus and their families.

The service they provide can significantly improve a patient’s overall well-being and help reduce medication non-adherence. Research by the Royal College of Nursing Rheumatology Nurse Forum shows that clinical nurse specialists not only enhance the whole patient experience, but also benefit the NHS, by freeing up consultant time and reducing the number of GP appointments.

LUPUS UK funds Specialist Lupus Nurses within the NHS and seeks a commitment that these posts will become permanently funded by the Hospital Trust at the end of the five-year funding period.

Currently, there are ten Specialist Lupus Nurses that are being funded or have had funding agreed by the charity.

What are the key duties of a Specialist Lupus Nurse?

• To run patient education clinics and drop-in sessions
• To provide longer patient appointments
• To offer advice through an email and telephone helpline
• To assist with lupus research
• To run ‘fatigue management’ workshops (almost 90% of people with lupus experience this difficult to treat symptom)
• Support any local lupus groups

LUPUS UK is currently funding Specialist Lupus Nurses in:

• Belfast, Northern Ireland
• City Hospital, Birmingham
• Edinburgh
• Lanarkshire, West of Scotland
• Leicester
• North Wales
• Queen Elizabeth Hospital, Birmingham
• Royal Free Hospital, London

IN THE PAST, LUPUS UK HAS FUNDED NURSES IN:

• Aberdeen
• Bath
• Cambridge
• Coventry
• Exeter
• Leeds
• Manchester
• Newcastle
• Southampton
• St Thomas’s, London
• UCL, London

St George's Hospital, Tooting

Subject to availability of funds, agreement has been given in principle for a Specialist Lupus Nurse at St George’s Hospital in London for a five-year term.

Jane Hollis on the IMPACT OF LUPUS NURSE SPECIALISTS FOR PATIENT CARE

I started in a new post back in 2011 at Addenbrooke’s Hospital, Cambridge as a Lupus Nurse specialist with initial funding from LUPUS UK. After 5 years the Trust supported this as a permanent post.

The role has been very diverse and includes clinical, research and educational aspects. I particularly enjoyed setting up nurse-led clinics where patients have more time to discuss their diagnosis and its impact on their lives.

Service improvement from having a dedicated lupus nurse:
• Provide a point of contact for patients. The advice line has become an important service and provides a link to medical team. A recent audit showed that 59 patient's messages were returned in one week and this equated to an increase from 3.5 hours per week in 2013 to 5.7 hours per week in 2019 spent talking to patients. I was also pleased that 98% of all messages left on the advice line were returned within 24 hours.

• Reduce doctor workload and I follow up outcomes of medical advice given.

• Raise awareness of lupus within the trust and work across multidisciplinary teams.

• Achieving acknowledgement as a LUPUS UK Centre Of Excellence enabled us to have access to new treatments such as Belimumab and investigational products within studies.

• I facilitate patient education courses and strongly feel that knowledge empowers patients to have more control over their own disease and symptoms, such as fatigue.

• Counselling on new medications supports patients on their treatment journey.

• Having a link person at the end of a phone has the potential to improve psychological wellbeing and decreases feelings of helplessness for those living with lupus.

• We have a dedicated joint pregnancy clinic with obstetric team once a month to give support and specialist advice to mothers.

• The role allows me to develop the service to meet patients' needs.

How can I get a Specialist Lupus Nurse at my hospital?

One of LUPUS UK’s long-term goals is to see a Specialist Lupus Nurse in each large hospital throughout the UK. If you do not currently have a Specialist Lupus Nurse in your area then we would encourage you to ask your lupus consultant whether they would consider applying for funding. They can Contact Us for more information and access the application forms HERE.

Patient Testimonials

"My Specialist Lupus Nurse has been KEY to surviving the diagnosis & treatment process for close on 10 years now. She responds ASAP to tele-messages and gets back promptly with my rheumy’s feedback. She is always attentive, knowledgeable, kind & reassuring. Her presence has helped me feel much better able to cope with the ups & downs of life with lupus. I can’t thank LUPUS UK enough for everything you do for us, especially for funding specialist nurses!"

"We're lucky to have a Specialist Lupus Nurse in Leicester and she is fabulous, knowledgeable, responds quickly and always shows care and compassion while being a really good laugh like talking to an old friend...She always makes you feel that you are not an idiot for asking about what might seem like a small symptom or concern."

"I didn’t realise not everywhere had this (Specialist Lupus Nurse) service until recently and how lucky we are, she (nurse) really knows the patients and helps bridge the gap between consultant appointments and has more specialist knowledge than most GPs."