The Louise Coote Lupus Unit
Louise Coote died on 24th November 1995 at the age of 31, having suffered from Systemic Lupus Erythematosus (Lupus) for 14 years. For many years, including her last weeks, she was treated at St Thomas' Hospital.
At the age of 17, Louise developed a rash and was diagnosed as suffered from Lupus. She initially responded well to treatment, the symptoms persisted however, expanding to include painful joints, fatigue, muscle weakness and the onset of kidney disease. Further signs of the disease were revealed in the form of salmonella, kidney failure, hair loss, laboured breathing, heart irregularities and a minor stroke. Problems persisted with dialysis and infections, culminating in septicemia.
Louise refused to be incapacitated by her health, leading as full a life as possible; skiing, riding, travelling and holding down a demanding job. In 1990 she married Timothy Coote and did much to promote the problems of Lupus sufferers including, among other things, the bi-annual "Langham's Lupus Lung" In London's famous restaurant.
Lupus is a chronic debilitating disorder of the immune system and is one of the major medical conditions of today. It is a condition which causes inflammation of virtually any system or organ of the body and can be life threatening. Symptoms range through the whole medical textbook from fatigue, depression and allergies to convulsions, pleurisy, heart and kidney failure - there is no cure. Lupus mainly affects women in their childbearing years, but men and even children can be affected. Because of the diversity of the disease, it can mimic other diseases and is therefore often misdiagnosed and mistreated. It is estimated that 20% of recurrent miscarriages have a direct link with lupus and an associated condition known as Hughes' (the antiphospholipid) Syndrome.
What causes lupus?
The current figure for estimated sufferers is now 1 in 750. Although the cause of lupus is unknown, research suggests that hereditary factors play a role. Interesting advances in genetics have dramatically improved the pace of research for discovering the genes that contribute to lupus susceptibility, severity and mortality. The identification of these genes will provide a framework for understanding the basis of this illness.
Is it treatable?
Although there is no cure, with a variety of modern treatments, we know that in the majority of patients, the disease can be controlled. Remissions can occur where the patient may go for long periods without any sign of the disease and lead a normal life. However, remission does not mean that constant medical attention is unnecessary. The key is to have a well managed treatment program.
- lupus affects 1 in 750 women and can also affect men and children
- the rate in some groups, for example, Afro-Caribbean, is as high as 1 in 200
- it is more common than MS and Leukaemia
- the 10 year survival rate is now over 95% compared with 50% twenty years ago
- it is estimated that 20% of recurrent miscarriages have a direct link with lupus and "sticky blood" or Hughes' (the antiphospholipid) Syndrome
The Louise Coote Unit was established in June 1997, named in memory of a patient at St Thomas' as a dedicated outpatient facility for the treatment of patients with lupus. The unit provides:
- specialist clinics, including renal, dermatology, pregnancy, antiphospholipid (clotting)
- nurse led advice/counselling service
- patient information including CD ROM, booklets etc
- greater focus on the specific needs of our patients
- national centre for the treatment of patients with lupus
- telephone hotline for GPs and specialists
- close link with lupus research
This unit has provided the ability to focus on this important and common disease. Our patients come not only from our local areas, but also from a wide geographical spread from the Channel Islands to the North of Scotland. Our telephone advice line receives calls from all over the world.
Much of the funding for this unit, for clerical and administrative staff and for the refurbishment and decoration, was provided by charitable donations. These were notably our own St Thomas' Lupus Trust and Lupus UK. Both charitable organizations provide invaluable support for our research effort.
The St Thomas' Lupus Trust is a Registered Charity No: 1010523
The Rayne Institute
St Thomas' Hospital
London SE1 7EH
Tel: 020 7922 8197
The Current Team
- Dr Graham Hughes, Consultant Rheumatologist and head of the Lupus Unit
- Dr Munther Khamashta, Lupus UK Senior lecturer and Consultant
- Dr Beverely Hunt, Consultant Haematologist
- Dr Mike Batley, Registrar
- Dr Fran Williams, ARC Research Physician
- Dr Sally Knights, ARC Research Physician
- Dr Maria Cuadrado, Louise Coote Research Fellow
- Dr Patrick Gordon, British Heart Foundation Research Fellow
- Sister Angela Barwick, Specialist Nurse
- Nurse Kim Wakefield
- Dawn Reader, Louise Coote Lupus Services Manager
- Penny Davis, Secretary
- Barbara Hallett, Clerk
- John Coleman, Hospital Administrator
Attending Colleagues from Other Departments
- Dr Richard Leach (Intensive Care)
- Dr Ian Abbs (Nephrology)
- Dr Susan Bewley (Obstetrics)
- Dr Catherine Nelson-Piercey (Obstetric Medicine)
- Dr Jane McGregor (Dermatology)
- Dr Tom Millard (Dermatology)
- Dr I Box (Psychiatry)
- Mrs Joan Glennie (Medical Make-Up)