Yorkshire Lupus Group - Lupus Nurse

An Interview with Elizabeth Tyas - Lupus Nurse

With all the controversy about continuation of funding for the post of a Leeds-based Lupus Nurse I thought it would be useful and interesting to meet with Elizabeth in April 2004 and find out exactly how we all benefit from her role.

We met in the Lupus Room at the LGI, a cosy meeting place and resource room in the hospital, which was funded by the Yorkshire Group 6 years ago in memory of Gillian Hankins. This is the base from which Elizabeth works and meets patients away from the busy clinic atmosphere.

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How do you divide up your time?

My post is 18 hours, 3 days a week. Thursday is my busiest day. I spend the morning in a Database Clinic, which is where we review patient's records and use the data collected to compile trends, cross-match disease with medications used and identify possible areas for promising research. We also use this information to update each individual patients records and plan for regular testing. This means that clinic time is used most effectively and patients receive continuity of care even if they see different doctors on consecutive visits. I also see patients who need further help on a 1:1 basis. I have a drop in clinic here in the Lupus Room or people can book an appointment to see me then. In the afternoon I'm working in the Connective Tissue Clinic as part of the team.

On Tuesdays I work in Chapel Allerton Hospital in the morning, visiting lupus in- patients in Ward 2, taking part in ward rounds in the Day Ward and formulating plans for continuation of treatment. This is where our most seriously ill patients are treated, including those referred from all over the Region, perhaps receiving pulses of cyclophosphamide (chemotherapy) and/or steroids.

Monday is my most flexible day. It includes longer appointments at either LGI or Chapel Allerton. I see new patients who need lupus education or others who have specific problems. I also spend a lot of time returning Helpline calls, I fit these in when I can but today is the day when I can make them a priority. I consider this to be the most important of my roles. Calls come mostly from Leeds patients needing advice but also from much further afield, across our Region and beyond.

If funding continues do you see your role changing in the near future?

Obviously it depends on the conditions of the funding. If I'm allowed to carry on with my current autonomy then I am working on a plan to factor in regular visiting of other Lupus Clinics around the Region. I presently try to get to the Clinic at St. James on the first Wednesday of the month whenever I can, though it isn't always possible as it's actually on my day off and involves juggling my schedule for the week. If the post becomes Trust funded however my time will be strictly regulated on quantity rather than quality based criteria.

Can you suggest any ways that this room could be used more extensively?

It is a shame that it is very under-used. I think it has a lot to do with its location. Patients have to make a huge effort to get here into the middle of Leeds and parking is very difficult, usually entailing a long walk as well. If it became possible to transfer the facility to the Chapel Allerton site at a later date then its convenience would make it much more accessible I feel.

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I bade farewell to Elizabeth after squeezing in a session of advice on my own medication and came away reflecting on what a huge miss her post would be if we lost her services. Since this interview it has been confirmed that the Trust has taken up funding her post. We are delighted that we will continue to benefit from Elizabeth's wealth of experience, though it remains to be seen how her post will alter in these times of 'cost effectiveness at all costs'!

Need help?

Call Elizabeth Tyas on 0113 392 3035