My name is Mandy McCartney and I am Leicester's Hospitals Lupus Specialist Nurse (a post which is being funded by LUPUS UK for five years). There are approximately 600 people in Leicestershire living with lupus and it is my role to provide education, information, advice and counselling.
What is Lupus?
Lupus is an incurable immune system illness, probably genetic in origin and mainly suffered by females. It can affect any part of the body. In lupus the immune system produces far too many antibodies which, circulating through the bloodstream, cause reactions leading to inflammatory processes anywhere in the body.
Lupus can produce many symptoms and family doctors often fail to recognise it. Meanwhile, a number of major organs can be damaged in an irreversible way.
The two major symptoms are joint and muscle pain and an extreme tiredness that won't go away no matter how much you rest.
Rashes, depression, anaemia, feverishness, headaches, possible hair loss and mouth ulcers may all be part of the pattern of lupus.
Noticeably, whilst the two major symptoms are invariably present, people with lupus can differ greatly in their symptoms and how the illness can affect them - life-threatening for a few, very mild for some. Miscarriage, often recurrent, is another unhappy complication of lupus.
Why have a Lupus Nurse?
There's far more undiagnosed lupus out there being 'put up with' and we have to increase awareness hugely if these people are to be diagnosed and then get some quality back into their lives. Lupus is usually 'for life' at present, having an ongoing impact upon the patient and also upon her or his parents, children, friends and colleagues.
My specialist appointment enables an opportunity for individuals and families to discuss concerns and worries; provide support and understanding in helping people to come to terms with the disease. In some cases patients with lupus have been undiagnosed for several years, and they feel frustrated that no one understands what they are going through. In most cases patients look reasonably well and it can be difficult for friends and relations to comprehend how ill they feel.
Some of the important aspects of the nurse specialist consultation include the following:
- Diagnosis and treatment plans
- Enabling informed choice, shared decision making and providing time to talk
- Patient Information leaflets prior to starting any new drugs with an opportunity to discuss any worries and concerns in detail
- Education and advice for the patient and importantly, family/significant others in helping them to understand lupus and its impact on the patient
- Access to on-going support via telephone advice line
- Developing collaborative clinics where specialists can combine approaches, where possible in the following specialist areas:
The specialist nurse and the patient work together to address issues of worry and concern. Patients feel relieved to talk to someone who understands what they are going through. In a nurse-led clinic the specialist nurse can closely monitor the patient’s drug therapy and check through regular blood testing for toxicity or side effects. They can also check the patient’s blood pressure, urine and further investigations can be organised as needed. Managing a flare is important for the patient to reduce risks associated with active disease and the nurse specialist provides a point of access to discuss as needed treatment changes with medical colleagues.
Telephone advice lines are provided in rheumatology units by specialist nurses, enabling support for patients between hospital appointments. These lines are also available for GPs and other health professionals to ring for advice and information as needed.
To find out more about Lupus visit LUPUS UK for additional advice and information.
To contact Mandy McCartney please email: firstname.lastname@example.org