Written by Dr Ariane Herrick, Consultant Rheumatologist at Salford Royal Hospital.
Liz Wragg has been in post as Raynaud's and Scleroderma Nurse Specialist since June 2004. In the 5 years since Liz was appointed, the Raynaud’s and Scleroderma service at Salford Royal Hospital has expanded substantially and the post of Raynaud’s and Scleroderma Nurse Specialist is pivotal in its infrastructure. Key points to highlight are:
i. An increased number of referrals. New patient scleroderma clinics are now held twice per month to accommodate this. Liz sees all new patients and co-ordinates their investigations.
ii. Increased research activity, including single centre and collaborative studies. Liz helps recruit into research studies and assists with these studies.
iii. Establishment, in 2009, of a scleroderma tissue bank (serum, DNA and skin biopsies). This builds upon previous sample collections and is facilitating multicentre research. As detailed below, Liz is responsible for ensuring that patients are given the opportunity, when attending the outpatient clinic, to allow a sample of their blood to be stored for research purposes.
iv. Consolidation and expansion of the scleroderma MDT (multidisciplinary team). Liz liases with members of the MDT and organises regular team meetings.
v. Increased teaching commitments, especially for undergraduates, including special study modules focussed on scleroderma-spectrum disorders for 4th year students, and 4th year project options. Liz assists with this, for example identifying patients who might take part in student-led research projects.
A. Achievements in the last year
The broad aim of the post was to enhance the care of patients with Raynaud's and scleroderma referred to Salford Royal Hospital. The specific objectives of the Raynaud's and Scleroderma Nurse appointment were/are as follows:
1. To provide a key co-ordinating member of the MDT
As above, Liz continues to co-ordinate the scleroderma MDT, responsibilities including the organisation of:
i. Regular MDT meetings, and taking the minutes of these.
ii. The annual review visits within the context of the scleroderma clinics. This involves writing patients in advance of their visits and ensuring the smooth running of the clinics. At any one follow-up clinic (usually 20 patients are seen per clinic), approximately 75% are attending for annual review and so this represents a substantial workload.
2. To educate patients about their disease and its treatment
Liz undertakes this primarily on a one-to-one basis. This is especially helpful at the new patient scleroderma clinic, but there are also opportunities for patient education at other clinics, on the ward (for inpatients) and via the telephone helpline.
A major initiative in the last year was the ‘Scleroderma Awareness Day’, held on the 3rd June 2009. Liz had the major role in organising this and gave the introductory talk. It was extremely successful, and another is being planned for next year. The format of next years ‘Awareness Day’ has already been discussed at the July MDT meeting (taking into account comments from the feedback questionnaires), and the feeling was that this should replace the patient education programme. Latterly this had not been well attended, and the feeling of the MDT was that many patients struggled to attend on all three occasions (the programme ran over three afternoons) and that having a one day meeting was more successful. This proved to be the case, as evidenced by the feedback received from participants.
3. To provide support to patients and their families
As in the last report, this is a key aspect of the role of the Raynaud's and Scleroderma Nurse Specialist, many patients being reassured by having a ready point of contact with the hospital services. For example, there is enormous pressure on the outpatient services and Liz’s post gives some flexibility in this by (a) helping patients reschedule appointments if necessary and (b) facilitating extra appointments/clinics.
4. To maintain the Raynaud's and Scleroderma helpline
The scleroderma helpline remains popular and provides a direct link between patients and the hospital service.
5. To support clinical research
Current research responsibilities are as follows (similar to last year but with the addition of the digital ulcer study):
a. Observational study. Liz has responsibility at Salford Royal Hospital for the observational study of early diffuse scleroderma, which is being co-ordinated by the UK Scleroderma Study Group. This involves checking dates of patients' next visits, documenting clinical details, and liasing with the study co-ordinator.
b. Serum and DNA bank, and annual capillaroscopy. At the annual review visit, each patient is asked if he/she is happy to give a blood sample for research purposes and to have 'extra' checks such as capillaroscopy. Therefore all patients attending for annual review are given patient information sheets and, if agreeable, asked to sign consent forms. Liz facilitates this process at the clinic and is responsible for keeping records of all consents for the serum/DNA bank and ‘annual review’ studies.
c. Digital ulcer study. Although this is being run from a nursing point of view by Adrienne Taylor, Liz assists with this and runs the study on occasions when Adrienne is not in the clinic.
d. Recruitment of patients into studies. Liz assists Dr Herrick and other members of the MDT team in recruiting patients into studies, for example the pilot IPL (Intense Pulsed Light) study which has recently completed.
6. To establish a patient education programme
As above, this has now been replaced by the Patient Awareness Day, although this decision will be kept under review: if sufficient numbers of people are interested we may continue to run a once yearly patient education programme aimed primarily at newly diagnosed patients.
7. To provide nursing input (if requested) to a patient support group
Liz has expressed willingness to be involved in the activities of the local patient support group, and liases with members of the group.
8. To develop expertise in the management of cutaneous ulceration (especially finger and leg), and establish a nurse-led ‘ulcer’ clinic
Liz has developed further expertise in the management of finger ulcers, facilitated by working alongside Adrienne Taylor, Tissue Viability Nurse, during Adrienne’s research appointment. Numbers of patients attending the research-based digital ulcer clinic are increasing, and the work from this study may identifiy the need for a service-based clinic to take over from the research clinic. However, it is not possible at present to be definite about this.
9. To participate in the training of undergraduate medical students
As above, a small number of undergradute medical students undertake a 3-4 week 'Student Selected Component' in scleroderma-spectrum disorders. As part of this, Liz spends sessions with these students (and also with other students attached to the department), informing them of the role of the scleroderma MDT.
B. Plans for the next year of the post
These include the following:
1. To continue to provide the high level of nursing support outlined above to patients with Raynaud's and scleroderma, and their families.
2. To run a second Patient Awareness Day in June 2010.
3. To set up and run a nurse-led primary Raynaud’s clinic (anticipated start date October 2009).
4. To continue to provide teaching sessions for undergraduate medical students (usually on a one-to-one basis).
5. To gain further research experience and to participate fully in future clinical trials.
