key: cord-1036108-e7rwve8m authors: Livermore, Polly title: ‘Reducing anxiety and maintaining care’ during the COVID-19 Pandemic date: 2020-10-28 journal: Rheumatol Adv Pract DOI: 10.1093/rap/rkaa062 sha: abd530fedc94b537352b1ae0ae58f0f7d2b19401 doc_id: 1036108 cord_uid: e7rwve8m nan The paediatric-rheumatology nurse has been instrumental in maintaining care and reducing anxiety during the pandemic. In March of this year, overnight the care of Rheumatology patients changed significantly. For both adult and paediatric patients, severe restrictions were put into place and families found they could not access their usual services and treatments. At the height of the pandemic, immunocompromised children and young people receiving named medications at certain doses, were encouraged to 'shield'. This advice caused a tsunami of parents calling paediatric rheumatology services asking for advice on their child. Parents asked questions about shielding, stopping therapies, changing therapies, appointments being cancelled, clinics being changed to virtual, school attendance and many, many more. More often than not, the first port of call for these concerns was the paediatric rheumatology nurse specialist. However, with the variation around the UK in how national guidelines were developed and implemented, and the constant changing advice that was being cascaded, staying on top of all this information and having enough nurses to disseminate this guidance safety, has been a challenge. The British Society of Rheumatology (BSR) State of Play report [1] emphasises that rheumatology nurse specialists are at the forefront of patient care. Paediatric rheumatology nurse specialists in particular have a dual role, not only managing the child's care, but also inherent parental anxiety. During the worldwide pandemic, we were interested to know how this role has adapted to meet the current needs and concerns of paediatric patients and their families. As the British Society of Paediatric and Adolescent Rheumatology Nurse Lead for the United Kingdom (UK), I distributed an electronic survey to an established active email group of paediatric rheumatology nurses across the UK. This email group is known to include the majority of paediatric rheumatology nurses around the UK who have paediatric rheumatology nursing as their main role. However it must be acknowledged that there are some nurses who care for paediatric rheumatology patients combined with other specialty paediatric caseloads or those who are predominantly adult nurses, which are not part of this group, thought to be approximately 10-15 nurses. The survey was structured in three sections; information about the individual, information about their role during the pandemic and their concerns for the future. Ethical considerations were paramount; the respondents were assured of confidentiality of their responses, no personal data was requested and return of the survey was taken as assent to take part. The survey was sent to 60 paediatric rheumatology nurses in July 2020, with 50 (83%) responding from the majority of secondary and tertiary centres. The biggest proportion were Band 6 Clinical Nurse Specialists (n=18, 36%), followed by Band 7 Clinical Nurse Specialists (n=16, 32%) and 46 of these (86%) were members of BSR. The majority (n=18, 36%) have worked in paediatric rheumatology for between 2-5 years, with 5 (10%) new to the service of less than 3 months, and 4 (8%) working for over 20 years in the speciality. Of these 50, 15 (30%) are independent nurse prescribers and only 8 of these (16%) administer intra-articular corticosteroid joint injections. When considering their role during the pandemic, 17 (34%) respondents were expecting to be redeployed, but only 7 (14%) actually were. Of these 7, only 1 was moved to an area previously employed in (the high dependency unit), whereas the other 6 (12%) were moved to areas they had not worked in previously. All 50 respondents (100%) said that their roles had changed since the pandemic began, with 36 (72%) nurses saying they have been allowed to work from home and 26 (52%) who were involved in delivering virtual clinics. All 50 respondents agreed that patient care had also changed, as illustrated further by Figure 1 . The majority (n=48, 96%) were regularly giving shielding advice, 33 (66%) changed patients from intravenous hospital based therapy to home administration and 30 (60%) said that intraarticular joint injections had been postponed. Reducing anxiety and maintaining care were described as key daily roles. Nurses provided extra information in their qualitative comments, such as; "We have done fewer home visits". "Patients stopped medication as they were frightened due to immunosuppression and not telling us". The UK nursing workforce has made a substantial contribution during the Covid-19 public health emergency [2] . However, whilst the current focus is on getting through the pandemic, the hardest challenge maybe to return to a sense of normality and fix some of the inevitable consequences, such as: "Patients with delayed joint injections have now developed fix flexion deformities" "Re-establishing care is even more challenging than cancelling" The recently published 'Paediatric and Adolescent Rheumatology -The State of Play' [3] clearly highlights the high vacancy rates of Paediatric Rheumatology Clinical Nurse Specialists. Without retaining this current skilled and expert workforce who have clearly demonstrated their worth during this pandemic, we could be at risk of loss of specialised and experienced care, putting our patients at risk. This survey provides a snapshot to the changing and challenging role of the nurse specialist during current times and highlights the importance and adaptability of their role within the Rheumatology team. Specialist Nursing in Rheumatology: The State of play How should the role of the nurse change in response to covid-19?', Nursing Times (online) Paediatric and Adolescent Rheumatology -The State of Play Acknowledgements P.L. is funded by NIHR BRC GOSH.Funding: No specific funding was received from any funding bodies in the public, commercial or notfor-profit sectors to carry out the work described in this manuscript. The author has declared no conflicts of interest.