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
• Dudley
• 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.

LUPUS UK Funded Clinical Nurse Specialist in Belfast, Northern Ireland

I would like to introduce myself. I have had the pleasure of joining the Belfast Trust as a lupus Clinical Nurse Specialist. My name is Cathal Boyle and my family and I have made the big step of moving back home to Northern Ireland after 20 years in England. Most of my early career was spent working in critical care in and around London or abroad carrying out aid work. I have spent the last six years working in Rheumatology at the Royal National Hospital of Rheumatic Diseases in Bath. This is a Lupus Centre of Excellence and I am looking forward to bringing what I have learnt there, here to Belfast.
Unfortunately, I joined the Belfast trust just before the COVID-19 outbreak so I only had the briefest of opportunities to see patients in clinic before lockdown. However so far, the team and I have set up Nurse-led Lupus annual review clinics. These Clinics are a vital way of monitoring lupus patients and in-line with National Institute of Clinical excellence (NICE) guidelines. When the lockdown ends, my aim will be to have routine nurse-led clinics and Emergency flare clinics, but this will be planned alongside discussions with patients to ensure the local needs are met within the service.

Although the pandemic has made it difficult to meet new patients, I am contactable via the rheumatology advice line. I will also endeavour in the meantime, to contact as many of our patients as I can. I look forward to meeting you all.

LUPUS UK funded Nurse in Lothian, Scotland

Hi, I’m Joanne and I will be working with the Rheumatology team at NHS Lothian as a Lupus Specialist Nurse. I have worked in the Rheumatology field for over 10 years both in research and in clinics. My role will involve a weekly clinic working alongside the Rheumatology Consultants at the Western General Hospital in Edinburgh. As well as seeing people in clinic I will be working with the Rheumatology Specialist Nurses in helping with any Advice Line calls from lupus patients and running the Fatigue Management Programme for groups of patients who struggle with this problem. We are also setting up the Lupus Registry in NHS Lothian which will assist with research projects for lupus patients in the future.
We have not yet started the Nurse Clinics due to the COVID-19 situation, however I am hopeful this will change in the near future. We have successfully run the first group Fatigue Management Programme and feedback from patients has been incredibly positive. We have a second group about to start, with a third for September in the planning stages.

If patients would like to get in touch with me they can contact the Rheumatology Office at the Western General Hospital.

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."