ABSTRACT
Introduction: Bart's Neuromodulation Centre is a center of excellence for research and innovation. In the UK, the NICE 159 guidelines have highlighted the importance of psychological and multidisciplinary assessment to ascertain the suitability of patients for Neuromodulation. The global pandemic of Covid-19 has had far-reaching physical, psychological, and socioeconomic implications. Despite the various limitations of running services during a pandemic, Barts Neuromodulation Centre maintained the importance of multidisciplinary assessment in the selection of patients suitable for this form of therapy. This paper presents psychological wellbeing outcomes of neuromodulation patients during this unprecedented period. Method(s): Data collection was gathered remotely between January 2021 to December 2021.N=178 completed questionnaires. The mean age was 55 years and 63% were female. Data was collected at baseline and in addition, post-implant data was obtained at 1,3,6 and 12 month follow up. As per NHS England outpatient guidance (2020), all data was completed remotely. All collected data was anonymized and data was stored on an encrypted database. Result(s): Results showed a 78% decrease in depression scores from baseline to 2 years+ and a 76% decrease in anxiety scores from baseline to 2 years+. Conclusion(s): The data demonstrates significant improvements in psychological wellbeing as shown in depression and anxiety scores after SCS therapy. Despite the global pandemic, there remains a strong demand for SCS and encouragingly showed significant improvements in psychological wellbeing. It would be useful to explore ways to improve patient compliance and explore broader parameters of outcomes. Disclosure: Angie Alamgir, PHD: None, Serge Nikolic, MD: None, Habib Ellamushi: None, Amin Elyas, FRCS: None, Joanne Lascelles, Clinical nurse specialist: None, Kavita Poply, PHD: None, Sanskriti Sharma: None, Alia Ahmad, MSc: None, Vivek Mehta: NoneCopyright © 2023
ABSTRACT
Introduction: Covid-19 was classed as a global pandemic by the World Health Organization (WHO) in March 2020. This had an overwhelming effect on the National Health Services (NHS) in the United Kingdom resulting in the disruption and subsequent prioritization of the elective recovery services. Despite the various limitations of delivering services during a pandemic, Barts Neuromodulation Centre maintained the importance of multidisciplinary assessment in the selection of patients suitable for this form of therapy. We present the data on our continued activity through pandemic, dependent on the performance feasibility. The aim of this effectiveness project was to evaluate the post SCS outcome data during covid-19 pandemic. Method(s): This was a telephone and in person data collection of patient responses to standardized and validated pain outcome questionnaires following SCS implant performed at St Bartholomew's Hospital, London during January-December 2021. Data was collated from a tertiary Neuromodulation center at Barts Health NHS Trust, UK. Patients completed the questionnaires prior to SCS implant and post implant 1, 3, 6, and 12 month follow- up appointments with our neuromodulation specialists Results: Two hundred and fifteen patients underwent face to face or telephonic consultation during January to December 2021 for the follow ups. Total 178 patients registered their responses with F:M being 63%:37% and the average age 55 years. At each time point, the following number of patients completed: baseline n= 52;1 month n= 27;3 months n=28;6-month n= 21 and 12 months, n= 26. We demonstrate that NRS pain scores reduced by 43%, ODI disability improved by 35%, HADS anxiety reduced by 45%, depression reduced by 46%, PSQ sleep improved by 77% and EQ5D quality of life improved by 66% at 12 months when compared to baseline. There were no serious adverse events reported through this time. Conclusion(s): To our knowledge, this is one of the first reported real-world post SCS outcome data of prospective follow ups. We demonstrate safe delivery of services and data collection feasibility through pandemic. Moreover, our patient cohort showed improvement in the all dimensions of chronic refractory pain following SCS therapy despite clinical burden of COVID-19. Disclosure: Alia Ahmad: None, Angie Alamgir, PHD: None, Sanskriti Sharma: None, Joanne Lascelles, Clinical nurse specialist: None, Amin Elyas, FRCS: None, Helen Bonar: None, Serge Nikolic, MD: None, Habib Ellamushi: None, Vivek Mehta: None, Kavita Poply, PHD: NoneCopyright © 2023
ABSTRACT
Background/Aims The COVID-19 pandemic has placed unprecedented pressures on NHS departments, with demand rapidly outstripping capacity. The British Society for Rheumatology 'Rheumatology Workforce: a crisis in numbers (2021)' highlighted the need to provide innovative ways of delivering rheumatology specialist care. At University College London Hospitals (UCLH) we created a rheumatology multidisciplinary team (MDT) clinic to meet rising demands on our service. The aims of the Rheumatology MDT clinic were to: reduce new appointment/follow-up waiting times, increase clinic capacity, incorporate musculoskeletal (MSK) point of care ultrasound, reduce number of hospital visits and add value to each clinic encounter. Methods We ran a 6-month pilot, supported by our outpatient transformation team, incorporating a Rheumatology Advanced Practice Physiotherapist (APP), Clinical Nurse Specialist (CNS) and MSK ultrasound within a Consultant clinic. The success of the pilot helped secure funding for a further 12 months. Over 18 months we have implemented: APP/Consultant enhanced triage - up to 40% of referrals were appropriate for APP assessment, including regional MSK problems and back pain. This increased capacity for consultant-led appointments. Standardisation of time-lapse between CNS and consultant follow-up appointments to ensure appropriate spacing between patient encounters. Facilitated overbooking of urgent cases afforded by additional capacity provided by the APP. MSK ultrasound embedded in the clinic template. 'Zoom' patient education webinars facilitated by MDT members and wider disciplines e.g. dietetics, to empower self-management and reduce the administrative burden of patient emails/phone calls occurring outside the clinic. Patient participation sessions and feedback to help shape the service. Results During the 6-month pilot we reduced our waiting time for follow-up appointments from 9 months to 2. We now have capacity to book 1-2 urgent cases each week. Pre-MDT the average wait from consultant referral to physiotherapist appointment was 55 days. The MDT allows for same day assessment (reducing 2-3 patient journeys a clinic) and where suitable, facilitates discharge or onwards referral to the appropriate service. A dedicated MDT CNS has shortened treatment times, reduced email traffic between CNS and consultant and allows for same day, joint decision-making resulting in fewer appointments. Zoom webinar feedback has been positive. Patients value the broad expertise of allied health professionals which supports self-management. Embedding ultrasound allows for same day diagnostics, decreased referrals to radiology and reduced hospital visits. Conclusion Our MDT model has reduced waiting lists, decreased treatment delays and cut hospital attendances. Point of care ultrasound allows for same day decision making and abolishes the cost and diagnostic delay associated with referrals to radiology or outsourced providers. Shared decision-making adds value to outpatient attendances, which is reflected in patients' positive feedback. The MDT model maximises the existing workforce skill set by enhancing the APP and CNS role, allowing patients immediate access to their expertise.
ABSTRACT
Introduction: Cancer support groups provide valuable peer support for patients, carers and families. Lung cancer is the biggest cause of UK cancer deaths, but few local support groups exist due to patients' social vulnerabilities and stigma. A need was identified for a support group in Bromley, South East London. The COVID pandemic provided additional challenges to meet and support others. Method(s): The group was initiated by patients and the lung Clinical Nurse Specialist (CNS). Patients and relatives were invited to participate in a "lung cancer awareness" hospital stand. Sharing experiences was hugely beneficial leading to a regular meeting outside hospital. Patients established aims to provide: A voice for people living with lung cancer A sense of community, belonging and purpose A reason for hope The group is inclusive to patients, families and bereaved relatives. It survived the pandemic as an online community. Result(s): Every breath support group has been invaluable and feedback highlights the importance of a safe space to be understood. It successfully achieved its aims and continues to grow, with over 60 active members. It is recognised as the Bromley Mayors Charity of the year. Group members provide patient representation to local NHS Integrated Care Networks, and patient perspectives educating health professionals. Examples of group member feedback: "Every Breath has been like a family to me... This group have helped me find peace in the unknown." "Lung Cancer is the dirty cancer ... we are here to help support those in need and ... to change the perception of Lung Cancer" Conclusion(s): Every Breath support group offers a model for lung cancer support. Patients and CNS team have reached out to other areas to support establishing groups. Peer support has huge psychosocial benefits and should be available to every lung cancer patient and their family. Disclosure: No significant relationships.Copyright © 2023 Elsevier B.V.
ABSTRACT
Background: Nursing practice in Ireland are continually evolving. The introduction of the respiratory CNS/ANP role is one of the most significant changes in recent years. Respiratory CNS/ANP have responsibilities under their scope of practice NMBI (2015) to contribute to the education of their colleagues and patients. The respiratory CNS and ANP brings benefits for patients and consultants, however, raises issues in relation to boundaries affecting identity. Aim(s): Exploring the experience of respiratory CNS/ANP education, knowledge, learning and wellbeing in their clinical health environment. Methodology: This qualitative study is influenced by hermeneutic phenomenology. Ethical approval and permission were obtained, and a gatekeeper forwarded study information to potential participants. Fifteen participants participated in one-to-one semi-structured interviews, via digital media, recorded and transcribed. Result(s): Findings suggest that respiratory CNS/ANP enhance nursing professionalisation which was especially during COVID-19 pandemic and contribute to the empowerment of nursing and nurse education. Respiratory CNS/ANP enhances, compliments nursing practice, enabling a more agentic practitioner, though challenges to this have been identified. Conclusion(s): This study provides an account of the practice and experiences of respiratory CNS/ANP in the Irish health care setting, developing direct knowledge from those experiences. Findings from this research can inform those with direct responsibility for the regulation of respiratory CNS/ANP nursing practice and those responsible for education and research in the nurse context.
ABSTRACT
Patients with hidradenitis suppurativa (HS) often present to our tertiary service with severe perianal disease that is extremely debilitating. We are able to provide a holistic service for our patients through our perianal virtual clinic (PVC), a weekly service comprising dermatologists, colorectal surgeons, gastroenterologists and a gastroenterology clinical nurse specialist. Virtually, we discuss and optimize the management of patients who have a diagnosis of either HS or gastrointestinal/ cutaneous Crohn disease (CD), or both. Through discussion of the medical management, review of pelvic magnetic resonance imaging scans and the discussion of surgical treatment in detail with our colleagues, we are able to streamline treatment for these complex patients. We provide a review of the activity in this service over the last 2 years, from January 2019 to December 2020. As part of the clinical work in our tertiary hidradenitis clinic, we routinely treat patients with significant perianal HS. These patients have discharging sinus tracts and fistulating disease in apocrine gland-bearing areas. A proportion have gastrointestinal or cutaneous CD. From a medical perspective, these patients have often failed multiple therapeutic interventions, and surgery can provide a useful adjunct to treatment. Surgical intervention involves extensive laying open and debridement of disease, including biopsy, and seton control of anal fistulae. Perianal skin cancer can be identified at the time ofsurgery, a complication known to affect those with chronic inflammation and those on immunosuppressive drugs. In the last 2 years, following surgery, one patient has been diagnosed with cutaneous squamous cell carcinoma (SCC), one with SCC in situ and one with extramammary Paget disease. In reviewing the activity of the PVC, we discussed 26 patients with HS and severe perianal disease in 2019 and 42 patients in 2020, despite interruption to the service due to the COVID-19 pandemic in 2020. This increase in activity reflects our expanded service and the severity and complexity of the patients referred. We identify those that may benefit from early surgery and also take referrals of patients with both HS and CD that may need optimization of medical therapy. In total, eight patients were admitted under the joint care of the colorectal and dermatology teams for surgery in 2019 and seven in 2020. The PVC has become an important one-stop service in the optimization of complex treatment for patients with perianal HS and/or CD referred to our tertiary service.
ABSTRACT
Introduction: 90% of patients undergoing mechanical thrombectomy (MT) require collection of a 90-day outcome (Sacks et al, 2018). This paper presents the development and operation of a Stroke clinical nurse specialist (CNS) led, telephone thrombectomy outcome clinic at a Comprehensive stroke centre (CSC). The clinic was funded and included within the CNS role. The CNS completed formal mRS training. Service managers created a template for the clinic e.g., appointment duration, frequency, and volume. The CNS curated appointments at 90days & 6 months +/- 14 days. Clinics operated weekly (10-20 patients/month) in structured 15-minute appointments. Multiple 'Did not attend's' (DNA) outcome data was obtained via GP and next of kin. Method(s): Outcome completion and DNA rates were compared from 2019- 2021 from hospital systems. A survey for stroke consultants captured perceived benefits and challenges. Result(s): Outcome completion for 2019 was 97.6% (n=164), 2020 86.9% (n=145) and 2021 99% (n=101). 2020 data was temporarily impacted by stroke CNS staffing change and the coronavirus pandemic. DNA rates reduced between 2019 - 2021 for 3 month (18% to 17%) and 6-month reviews (19% to 11%). 100% of stroke consultants agreed outcome data is vital for the service (6/6). Perceived benefits were quality assurance, standardisation, governance, and clinical continuity. Practical challenges included room availability, following up DNA's and the use of interpreters. Conclusion(s): CSC's can achieve >90% of MT case outcomes with mRS trained CNS led clinics. They provide standardised, reliable, and vital patient outcomes for improving MT services.
ABSTRACT
Introduction COVID-19 has impacted the delivery of services provided throughout the National Health Service. Innovative ways of working remotely has been a challenge to provide safe and effective care to patients in a timely manner. The Gastroenterology and Nutrition Team at Birmingham Children's Hospital, treat one of the largest cohorts of paediatric patients in Europe with: Inflammatory Bowel Disease, intestinal failure receiving home parental nutrition and other gastrointestinal diseases. Many patients are on long-term medication and the pandemic increased the demand for remote prescription requests. The Advanced Nurse Practitioner recognised and developed a service improvement initiative to prescribe safely through remote consultations. Aim To provide a standardised approach to provide remote consultations in order to issue repeat prescriptions in a safe and effective manner. To adhere to current guidance, to promote best practice, work in partnership with GPs and to audit the findings following implementation. Method Searches were conducted for literature surrounding remote prescribing. Using current guidance, the ANP implemented a seven step approach in performing prescribing consultations (see figure 1). Results 232 patients requested repeat prescriptions, with a total of 435 medications. These figures are from booked clinics and any requests outside of these were not included in these findings. Figure 2 outlines the outcome from implementing stage 5 of the process (figure 1). Combining the number of GPs who agreed to prescribe, with the agreed Clinical Commissioning Groups (CCG's) funding, amounted to 54.74%. 17 CILT funding requests are pending, therefore 60.06% of requests are likely to be funded. 40 patients (17.24%) were removed from the medication requests for a variety of reasons and 48 requests (20.68%) are pending a response. In 18 consultations, recommendations were needed to promote patient safety, for example: . Unwell patient booked into a face to face clinic for review . Abnormal bloods - neutropenic (Azathioprine placed on hold) . Insufficient blood levels highlighted to consultant - increased medication dose/duration . Missed blood monitoring - arranged . Poor compliance - booked into Clinical Nurse Specialist clinic . Missed clinic appointments - booked in Summary By recognising and applying a new way of working has improved patient safety as it allows for a planned consultation to be completed in a timely assessment by an advanced practitioner. Auditing the process has reported that remote prescribing clinics have streamlined the process, provided accountability with clear documentation and facilitates working in collaboration with colleagues, all of which promote prescribing governance. This service improvement pathway has led to reducing drug costs within the department whilst generating income to the Trust, although figures are to be finalised. Conclusion It appears that from implementing a remote prescribing clinic, it has allowed a timely consultation to assess the patient, review investigations, identify evidence-based treatment options, present options and reach a shared decision. Working collaboratively with colleagues in primary care, by documenting and offering Effective Shared Care Agreements has developed patient care and reduced drug costs in the department. Many medications used in paediatrics are unlicensed. Where GPs have felt unable to prescribe in partnership with specialists, by offering paperwork to decline prescribing, has allowed the Gastroenterology Team work with the Commissioning Interface Liaison Team which has gained funding from the local CCG to cover the cost of supplying, dispensing and delivering the medication.
ABSTRACT
Introduction/Background: The Paediatric Rheumatology Clinical Nurse Specialist often has to manage a large caseload of children and young people. Paediatric Rheumatology is an umbrella term of over 80 conditions, most of which are long-term chronic illnesses which can be challenging for families to manage. The Clinical Nurse Specialist is therefore the first point of contact for families who want answers and guidance in caring for their child/young person. The UK and Ireland Paediatric Rheumatology Nurses Group, in turn, provides peer support to these nurses. This will present the growth of this network, particularly over the last two years. Description/Method: Over two decades ago, a UK Paediatric Rheumatology Nurses group was established. Since the group's formation, membership has grown from 20 to over 100 nurses, and has expanded into the Republic of Ireland. All nurses work in paediatrics and most are working solely in Rheumatology as Clinical Nurse Specialists (various titles exist). However, the group also contains nurses who may not solely focus on Rheumatology, but who also manage a number of specialities (one being Rheumatology), and those who have developed their own specialist interest in Rheumatology, often derived from providing clinical support to weekly Rheumatology clinics. The group's Lead Nurse has also encouraged Clinical Research Nurses supporting Paediatric Rheumatology studies to join, as the shared learning is useful to support their clinical practice too. Currently we only have one Paediatric Rheumatology Senior Clinical Research Nurse, but we do have some nurses who manage Paediatric Rheumatology studies as part of their wider clinical roles. Members are located across 37 different centres in the UK and Ireland. Four of these centres have joined in the last month, with nurses hearing about the group and approaching the steering committee about their participation. The centres range from district general hospitals through to specialist regional Children's hospitals. The seniority of our members ranges from band 5 through to band 8b, with three members managing Rheumatology services in a matron capacity. In fifteen of these centres, there is only one Paediatric Rheumatology Nurse within that centre, which can be isolating. The UK and Ireland group is accessible through email and WhatsApp and is always available for a quick question or check in. Keeping membership up to date, particularly with some nurses only joining for short periods of time to cover maternity leave, can be challenging. Tomorrow the numbers may have changed again! Discussion/Results: The growth of this group, particularly over the last two years, could be for a number of reasons: 1. Regular virtual meetings have been advertised on social media channels, especially via the British Society of Rheumatology (BSR). These don't have to be sighted by Rheumatology nurses themselves but may have been noticed from other Rheumatology multidisciplinary team members, who then encouraged their nurses to make contact. 2. Having regular virtual meetings ensures that all of the Paediatric Rheumatology Nurses are invited and can take turns in attending and sharing best practice, so it is in a team's best interest to encourage more hesitant nurses to ask to join. 3. The development of the WhatsApp group has provided quick and instantaneous responses and has clearly proven beneficial according to member feedback. 4. During the Covid-19 pandemic, working patterns changed with nurses being allowed to work from home. This change contributed to nurses feeling isolated from their peers, and also not having the wider multi-disciplinary team easily on hand and therefore asked the group their clinical questions. 5. Some members of the group have taken on additional roles, either within BSR or the Royal College of Nursing and this offers wider communication channels and increased visibility of the group through advertising. 6. Membership growth appears to mirror the growth seen in Rheumatology services, for example some centres have appointed veitis Clinical Nurse Specialist posts to work in conjunction with the Rheumatology Nursing Team. 7. The change in societal ways of working, with more work and meetings occurring virtually, and outside of the 9-5 office hours, means that nurses can attend meetings easier than having to expend time and finances to travel to face-to-face meetings. 8. New members joining naturally increases word of mouth and the wider reach of the group. Key learning points/Conclusion: Raising and maintaining the profile of this group is important. We know that there is no similar group for adult Rheumatology Nurse Specialists in the UK. Also, there is no other similar European Paediatric Rheumatology Nurses group. Paediatric Rheumatology is a huge speciality with nurses needing to be able to support families in their management of conditions outside of hospital appointments to prevent hospital admissions. The scope of the Rheumatology nurse is also always increasing, with pressure on nurses to undertake postgraduate studies, become nurse prescribers, carry out joint examinations, deliver nurse-led clinics and manage patients on immunomodulatory therapies in the community. The Paediatric Rheumatology Nurse also requires knowledge and skills in best practices for young people transitioning into adult services and be an expert in child development stages and the implications of these, whilst managing the needs and expectations of the child's main carer and wider family. For these reasons alone, it is vital that we protect the Paediatric Rheumatology Nurse Specialist and ensure that they are supported, developed and valued, and therefore, stay in Rheumatology. The ask of the wider multidisciplinary team is to allow Paediatric Rheumatology Nurses time to attend group meetings, encourage them to ask questions of the wider nursing group and to promote the group to new nurses or those who may not be aware of the group, to reach out and seek expert peer support.
ABSTRACT
Introduction: With the outbreak of the COVID-19 pandemic, clinical practice had to be adapted very quickly. As cancer patients are considered to be at higher risk, in cancer care substantial organizational and treatment related changes had to be implemented. Our presentation will focus on consequences of these changes for oncology nursing. Method(s): The Academic Society for Oncology Nursing in cooperation with the Swiss Oncology Nursing Society organized several webinars with oncology nurses, nurse managers and clinical nurse specialists. Tese experts from French and German speaking regions shared their experiences discussing a) major practice changes and b) needs of nurses to meet the care needs of patients and relatives in two webinars in French and in German. Result(s): The major practice changes included the use of personal protective equipment (PPE), the rapidly implemented changes in treatment and care resulting in changing patients needs. Facemask and protective glasses were standard PPE in many places. PPE impacted nursing interventions and communication with the patient. The lack of visibility of facial expressions hampered nurses' capacity to express empathy or to recognize the emotional state of their patients. Terapies were switched to longer cycles or postponed entirely. This resulted in an increased informational and educational needs of patients. Tey expressed the fear to be exposed to a higher risk of SARS CoV-2 infection or to receive a less efective cancer therapy. In turn, patients who did not come to cancer centers worried that something missed care could have fatal consequences. To meet these needs many centers reinforced remote consultations, mainly via phone. Centers with established procedures for telephone consultations felt better prepared for remote consultation during the pandemic. Overall, webinar participants highlighted the lack of guidelines for conducting telephone consultations and policies for reimbursement. Conclusion(s): The round-table webinars provided a platform for oncology nursing to exchange on challenges and solutions in times of COVID-19. Regarding telephone consultations, the webinars have stimulated the development of nursing guidelines for remote consultations. An important subject for future round-table webinars could be the preparation of oncology nurses for a second epidemic wave.
ABSTRACT
Introduction COVID-19 has impacted the delivery of services provided throughout the National Health Service. Innovative ways of working remotely has been a challenge to provide safe and effective care to patients in a timely manner. The Gastroenterology and Nutrition Team at Birmingham Children's Hospital, treat one of the largest cohorts of paediatric patients in Europe with: Inflammatory Bowel Disease, intestinal failure receiving home parental nutrition and other gastrointestinal diseases. Many patients are on long-term medication and the pandemic increased the demand for remote prescription requests. The Advanced Nurse Practitioner recognised and developed a service improvement initiative to prescribe safely through remote consultations. Aim To provide a standardised approach to provide remote consultations in order to issue repeat prescriptions in a safe and effective manner. To adhere to current guidance, to promote best practice, work in partnership with GPs and to audit the findings following implementation. Method Searches were conducted for literature surrounding remote prescribing. Using current guidance, the ANP implemented a seven step approach in performing prescribing consultations (see figure 1). Results 232 patients requested repeat prescriptions, with a total of 435 medications. These figures are from booked clinics and any requests outside of these were not included in these findings. Figure 2 outlines the outcome from implementing stage 5 of the process (figure 1). Combining the number of GPs who agreed to prescribe, with the agreed Clinical Commissioning Groups (CCG's) funding, amounted to 54.74%. 17 CILT funding requests are pending, therefore 60.06% of requests are likely to be funded. 40 patients (17.24%) were removed from the medication requests for a variety of reasons and 48 requests (20.68%) are pending a response. In 18 consultations, recommendations were needed to promote patient safety, for example: . Unwell patient booked into a face to face clinic for review . Abnormal bloods - neutropenic (Azathioprine placed on hold) . Insufficient blood levels highlighted to consultant - increased medication dose/duration . Missed blood monitoring - arranged . Poor compliance - booked into Clinical Nurse Specialist clinic . Missed clinic appointments - booked in Summary By recognising and applying a new way of working has improved patient safety as it allows for a planned consultation to be completed in a timely assessment by an advanced practitioner. Auditing the process has reported that remote prescribing clinics have streamlined the process, provided accountability with clear documentation and facilitates working in collaboration with colleagues, all of which promote prescribing governance. This service improvement pathway has led to reducing drug costs within the department whilst generating income to the Trust, although figures are to be finalised. Conclusion It appears that from implementing a remote prescribing clinic, it has allowed a timely consultation to assess the patient, review investigations, identify evidence-based treatment options, present options and reach a shared decision. Working collaboratively with colleagues in primary care, by documenting and offering Effective Shared Care Agreements has developed patient care and reduced drug costs in the department. Many medications used in paediatrics are unlicensed. Where GPs have felt unable to prescribe in partnership with specialists, by offering paperwork to decline prescribing, has allowed the Gastroenterology Team work with the Commissioning Interface Liaison Team which has gained funding from the local CCG to cover the cost of supplying, dispensing and delivering the medication.
ABSTRACT
Introduction/Background: The Paediatric Rheumatology Clinical Nurse Specialist often has to manage a large caseload of children and young people. Paediatric Rheumatology is an umbrella term of over 80 conditions, most of which are long-term chronic illnesses which can be challenging for families to manage. The Clinical Nurse Specialist is therefore the first point of contact for families who want answers and guidance in caring for their child/young person. The UK and Ireland Paediatric Rheumatology Nurses Group, in turn, provides peer support to these nurses. This will present the growth of this network, particularly over the last two years. Description/Method: Over two decades ago, a UK Paediatric Rheumatology Nurses group was established. Since the group's formation, membership has grown from 20 to over 100 nurses, and has expanded into the Republic of Ireland. All nurses work in paediatrics and most are working solely in Rheumatology as Clinical Nurse Specialists (various titles exist). However, the group also contains nurses who may not solely focus on Rheumatology, but who also manage a number of specialities (one being Rheumatology), and those who have developed their own specialist interest in Rheumatology, often derived from providing clinical support to weekly Rheumatology clinics. The group's Lead Nurse has also encouraged Clinical Research Nurses supporting Paediatric Rheumatology studies to join, as the shared learning is useful to support their clinical practice too. Currently we only have one Paediatric Rheumatology Senior Clinical Research Nurse, but we do have some nurses who manage Paediatric Rheumatology studies as part of their wider clinical roles. Members are located across 37 different centres in the UK and Ireland. Four of these centres have joined in the last month, with nurses hearing about the group and approaching the steering committee about their participation. The centres range from district general hospitals through to specialist regional Children's hospitals. The seniority of our members ranges from band 5 through to band 8b, with three members managing Rheumatology services in a matron capacity. In fifteen of these centres, there is only one Paediatric Rheumatology Nurse within that centre, which can be isolating. The UK and Ireland group is accessible through email and WhatsApp and is always available for a quick question or check in. Keeping membership up to date, particularly with some nurses only joining for short periods of time to cover maternity leave, can be challenging. Tomorrow the numbers may have changed again! Discussion/Results: The growth of this group, particularly over the last two years, could be for a number of reasons: 1. Regular virtual meetings have been advertised on social media channels, especially via the British Society of Rheumatology (BSR). These don't have to be sighted by Rheumatology nurses themselves but may have been noticed from other Rheumatology multidisciplinary team members, who then encouraged their nurses to make contact. 2. Having regular virtual meetings ensures that all of the Paediatric Rheumatology Nurses are invited and can take turns in attending and sharing best practice, so it is in a team's best interest to encourage more hesitant nurses to ask to join. 3. The development of the WhatsApp group has provided quick and instantaneous responses and has clearly proven beneficial according to member feedback. 4. During the Covid-19 pandemic, working patterns changed with nurses being allowed to work from home. This change contributed to nurses feeling isolated from their peers, and also not having the wider multi-disciplinary team easily on hand and therefore asked the group their clinical questions. 5. Some members of the group have taken on additional roles, either within BSR or the Royal College of Nursing and this offers wider communication channels and increased visibility of the group through advertising. 6. Membership growth appears to mirror the growth seen in Rheumatology services, for example some centres have appointed eitis Clinical Nurse Specialist posts to work in conjunction with the Rheumatology Nursing Team. 7. The change in societal ways of working, with more work and meetings occurring virtually, and outside of the 9-5 office hours, means that nurses can attend meetings easier than having to expend time and finances to travel to face-to-face meetings. 8. New members joining naturally increases word of mouth and the wider reach of the group. Key learning points/Conclusion: Raising and maintaining the profile of this group is important. We know that there is no similar group for adult Rheumatology Nurse Specialists in the UK. Also, there is no other similar European Paediatric Rheumatology Nurses group. Paediatric Rheumatology is a huge speciality with nurses needing to be able to support families in their management of conditions outside of hospital appointments to prevent hospital admissions. The scope of the Rheumatology nurse is also always increasing, with pressure on nurses to undertake postgraduate studies, become nurse prescribers, carry out joint examinations, deliver nurse-led clinics and manage patients on immunomodulatory therapies in the community. The Paediatric Rheumatology Nurse also requires knowledge and skills in best practices for young people transitioning into adult services and be an expert in child development stages and the implications of these, whilst managing the needs and expectations of the child's main carer and wider family. For these reasons alone, it is vital that we protect the Paediatric Rheumatology Nurse Specialist and ensure that they are supported, developed and valued, and therefore, stay in Rheumatology. The ask of the wider multidisciplinary team is to allow Paediatric Rheumatology Nurses time to attend group meetings, encourage them to ask questions of the wider nursing group and to promote the group to new nurses or those who may not be aware of the group, to reach out and seek expert peer support.
ABSTRACT
Introduction/Background: Many children and young people with Juvenile Idiopathic Arthritis (JIA) and other rheumatological conditions can face extra challenges as they grow up. These include coping with their condition, treatments and treatment side effects but also attending school and achieving in their chosen hobbies. Families often play a vital role in supporting children at home and so these challenges are rarely seen by others. The aim was to create a way to support families in recognising, encouraging and celebrating the efforts of their children and young people, as well as siblings, in relation to managing life with their condition. Description/Method: The Children's Chronic Arthritis Association (CCAA) is a charity offering support to families living with JIA in the UK. CCAA decided to prioritise the scheme during the COVID-19 pandemic to offer another avenue of support direct into families' homes. During this time, some families had less contact with their care teams, many children were feeling isolated while not at school and we were not able to offer our usual peer support activities. The concept was put, via a survey, to the group of 38 CCAA local area parent representatives who represent families from across the UK. Incorporating their feedback, we developed our initial offering of six badges - Effort, Courage, Raising Awareness, Fundraising, Supportive Sibling and Active Achievement. We aimed to promote CCAA core values. We wanted to focus less on success or achieving goals but instead to celebrate trying and persevering. We developed a website page to promote the badges including a nomination form, rules, a guide to help families find the award badge best suited to their child's needs and a set of Frequently Asked Questions (FAQs). Designs were chosen to appeal visually and to be collectible. We added a lanyard on which to collect and keep the badges and a certificate delivered in environmentally friendly packaging. The scheme was launched in April 2021. We established a weekly 'Monday Badge Story' social media post where photos and stories of badge recipients were shared (with consent from families). Early in 2022 we added one further award for Research as we felt this was lacking from the original offering and was another area that we wanted to encourage our families with. On the first anniversary of the scheme in April 2022 we added a medal for the end of the lanyard for any child who had collected eight awards. Discussion/Results: Selected statistics from the first year of the scheme being live: Some aspects of the scheme being live during the first year have provided learning for us in the areas of support and raising awareness. In terms of support, the scheme offered support more widely than just to the child or young person alone. Many nominators gave lengthy reasons for nominating the child or young person suggesting that the nomination process itself is cathartic for parents and families and can help them feel that they are being heard. Children, young people and their families also appreciate reading the badge stories of others like them and it may help them feel less alone. We have also been able to support the work of Healthcare Professionals who have appreciated the opportunity to reward and incentivise their patients. With regards to raising awareness, the accessibility of the nomination process to all has generated a wide range of nominators (as detailed in the table above) which has naturally aided raising awareness of JIA across the communities we support. Our 'Badge Story' social media posts have been a good way to help increase awareness of paediatric rheumatological conditions in children and young people more widely still. Key learning points/Conclusion: Positive feedback sent from families and clinicians shows us that the scheme has been well received. As one Clinical Nurse Specialist said, I have recently come into post and have used your award badge scheme a few times now, the kids love it! Comments from parents show the collectible side to the scheme: They are looking forwa d to finding out how to get more badges. They also reflect how the badges can help increase positivity and selfesteem: The badges are a fabulous idea to lift their moods, and She is thrilled and felt so proud. They also show how they can promote and incentivise positive behaviour change and coping skills: Her badges last week really helped with her injection on Friday. Developing this scheme has allowed us to offer support directly to families in an individual way that is tailored to the needs of each family. The support is driven by the family themselves or their medical team or others who know them well. Families have particularly appreciated the ability to reward siblings whose needs are often overlooked. The scheme ensures that families can self-access an entirely different type of support to the face-to-face residential weekends and local meet ups or the online support groups we already offer. This new line of support has the added advantage of being available and easily accessible whenever it is needed. An unanticipated benefit is that we have also been able to increase our reach to some families who have not engaged with the charity previously by accepting nominations from healthcare professionals who have contact with these families. Going forward, at the end of the second year of being live, we aim to more formally evaluate the scheme and measure its impact. (Table Presented).
ABSTRACT
Background: 1 in 20 cases of unprovoked VTE are associated with and maybe the first manifestation of an occult malignancy. Current UK guidelines for patients with unprovoked VTE no longer recommend routine screening for cancer and instead advise targeted investigations based on history taking, base line investigations and basic radiology. Physical examination in the context of our outpatient DVT clinic has historically been performed by physicians, supported by clinical nurse specialists. The COVID-19 pandemic has necessitated changed ways of working in the DVT service due to clinical pressures and redeployment of medical staff. With less in-person medical cover, a need to develop a nurse-led pathway for cancer assessment without routine physical examination was identified. Aim(s): To develop a cancer assessment tool for history taking in the nurse-led DVT clinic Methods: National guidance "Suspected cancer: Recognition and referral" (NICE NG12) www.nice.org.uk/guida nce/ng12 reviewed to identify signs and symptoms warranting investigation and referral for suspected cancer. Grouped according to body systems (e.g. respiratory, gastrointestinal) to facilitate ease of use in a structured assessment questionnaire used by clinical nurse specialists in the DVT clinic. The tool was then incorporated into modified clerking paperwork as part of the patient's systems review. A pathway was established to ensure appropriate referral or investigation if cancer suspected, including weekly discussion of all cases in a DVT clinic MDT meeting, arranging medical review for physical examination if indicated and regular review of the outcome of investigations. Result(s): A pragmatic, nurse-led cancer assessment tool has been successfully implemented as part of routine patient assessment for unprovoked DVT in an outpatient clinic. Ongoing audit and review is planned to ensure a high standard of patient care Conclusion(s): The COVID-19 pandemic has precipitated changes in clinical working practice that we as nurses have embraced to fimplement a new occult cancer assessment pathway for patients with unprovoked VTE.
ABSTRACT
Aims Attendance to hospital for children and young people with complex medical needs and autism can be frightening and stressful, due the unfamiliar setting and unknown people, communication difficulties and sensory overload. Currently at our Trust, there are no specific resources for this patient group, and we have received informal and formal feedback that the needs of these young people and their families are not being met. We aim to improve the experiences of children and young people with complex medical needs and autism at our Trust by creating a new patient pathway, involving children and families early to drive change. Methods We designed a focus group for parents of children with complex medical needs and autism. We identified families from the neurology clinic, and wrote to them to explain the project and our aims and to invite them to take part in the focus group. We followed this up with a phone call to discuss the project further and to answer their questions. The focus group took place in September 2021. Results Five parents and one grandparent attended the focus group. Between them, they had experience of emergency hospital attendances, inpatient admissions, outpatient appointments, paediatric intensive care, multiple investigations and care across multiple sites in the UK and abroad. Their children attended both mainstream and special schools. There was a wide range of complexity of need, and input from health, school, therapies and social care. The range of experience made for a highly insightful and interesting discussion. Positive feedback was received for the neurology consultant, epilepsy clinical nurse specialist, play specialists and hospital school team, with a particular focus on parents knowing who to contact when they needed advice and support. Key areas for change identified included more privacy for adolescents, a leaflet detailing what to expect during an admission, sensory toys, a patient passport and iPads for the emergency department. Families also commented that specific changes could be made to improve their children's experiences of outpatient clinics, including minimising the wait to be seen, considering whether the child needs to be brought to a face-to-face appointment, the presence of a sensory room and improvements to the phlebotomy room, including the presence of play specialists. They also identified opportunities to join up care between secondary and tertiary services, for example arranging for pre-admission COVID-19 swabs at the local hospital, rather than at the tertiary hospital where the admission was planned. The next phase will be to apply for funding to achieve these aims. We are devising a Makaton passport and a system to help children to communicate using symbols. We will involve the children, young people and families at every stage of our project. Conclusion Patients and families have a much greater insight into the challenges faced than professionals, and their input is the most valuable tool to drive change. Relationships between patients and professionals have a huge impact on experience of care. We will continue to work with families in order to bring about meaningful and impactful change.
ABSTRACT
Background Three Acute NHS Trusts were reaching maximum bed capacity by January 2021 due to the COVID-19 Pandemic. A local recently refurbished care home was identified as a suitable COVID-19 discharge facility for COVID-19 positive and COVID-19 contact patients whose ceiling of care could be managed in this setting (including oxygen therapy) to help ease bed pressures. Aims•To support primary care and care home staff with symptom control and decision making for those patients who were end-of-life.•To help avoid readmission back into the Acute NHS Trusts who were already at capacity.•To support the relatives of these patients Method From January until the end of March 2021 support was provided to the designated care home in the form of:•A weekly virtual ward round. Members on the virtual ward round included a GP, the Lead Nurse from the care home, an Advanced Nurse Practitioner, a paramedic and a Palliative Care Nurse Specialist.•The provision of regular telephone calls throughout the week was dependant on need from the care home.•If there were any particular patients that the care home staff had concerns about a clinical nurse specialist would be available at weekends and bank holidays for advice and support.•Telephone calls to relatives. Results•Prevention of patients being readmitted to the Acute NHS Trusts following the input from specialist palliative care.•Quality symptom control provided for patients not for escalation.•Quality end-of-life care.•Support for care home staff. Conclusion The specialist palliative care input made a positive contribution to the care of patients and also to the symptom control of those patients who were end-of-life. Staff felt supported in looking after these patients at a time when care home staff were generally feeling very isolated.
ABSTRACT
Background: Covid-19 has consumed hospital resources since January 2020. In the UK, routine care has been disrupted with an estimated 30 million fewer outpatient attendances (2020/21) and over 6 million patients waiting for consultant led care (1). The British Society for Rheumatology 'Rheumatology Workforce: a crisis in numbers (2021)' highlights the challenges facing National Health Service rheumatology departments in managing rising caseloads (2). In 2021, UCLH wait time for follow up rheumatology appointments was 9 months. We were inundated with patients requiring urgent treatment. Innovative ways of running outpatients were required which led to the formation of an MDT clinic. Objectives: Create a Rheumatology MDT clinic to: Reduce follow up time Increase clinic capacity Reduce number of hospital attendances Add value to each clinic encounter Methods: The consultant lead identifed an existing clinical nurse specialist (CNS) interested in supporting the MDT. With a UCLH Outpatient Transformation grant of £15,000 we recruited an advanced physiotherapy practitioner (APP) and administrator for a 6 month trial period. Managerial support was provided by the board. We met weekly to agree aims and allocate responsibilities. We did the following: Reviewed clinic lists for 6 months to identify duplicate appointments. Identifed patients with CNS and consultant follow up scheduled in a short time frame and cancelled unnecessary appointments. Reviewed the clinic list weekly to identify patients suitable for APP management. This allowed overbooking of urgent cases. Embedded hand ultrasound appointments in the clinic template. Created CNS 'Zoom' virtual drop-ins for routine enquiries to reduce the administrative burden of patient emails/phone calls occurring outside the clinic. Organised patient participation sessions to help shape the service and collected patient feedback questionnaires. Results: We reduced our waiting time for follow up appointments from 9 months to 2 months. Pre-MDT the average wait from consultant referral to physiotherapist appointment was 55 days. The MDT allows for same day assessment (reducing 2-3 patient journeys a clinic) and where suitable, facilitates discharge or onwards referral to the appropriate service i.e. pain management, hand therapy, APP-led hypermobility programme. A dedicated MDT CNS has shortened treatment times, reduced email traffic between CNS and consultant and allows for same day, joint decision making resulting in fewer appointments. Patients welcomed the Zoom sessions as an efficient, reliable method of raising concerns/queries. Our administrator helps to facilitate communication between patients and clinicians and streamline MDT processes. Embedding point of care ultrasound reduces hospital visits and enhances treatment decision making thereby reducing follow up attendances. Conclusion: Our MDT model has reduced waiting lists, decreased treatment delays and cut the number of hospital visits. Performing ultrasound in clinic helped prevent patients being sent for scans at private providers. This cost saving likely covers the APP, ensuring the project is close to cost neutral. Shared decision making added value to outpatient attendances, refected in patients positive feedback. The MDT enhances the role of APP and CNS, utilising their unique skill set. Administrative support is crucial, enhances team working and places added value on this often underappreciated role. We encourage other Rheumatology departments to adopt an MDT approach to tackle the backlog of patients awaiting treatment, add value to clinic encounters and maximise the skill set of clinicians involved in patient care.
ABSTRACT
Background: Janus kinase inhibitors (JAKi) are relatively new to the feld of rheumatology and provide health professionals in rheumatology (HPRs) with more therapeutic options for treating infammatory arthritis (IA), specifcally rheumatoid arthritis (RA) and psoriatic arthritis (PsA) [1]. Aside from a different target, JAKi differ from often currently prescribed biologics by being administered orally. To date, there is a lack of evidence on what HPRs think about their real-world use and how the COVID-19 pandemic affects JAKi prescription. Objectives: To explore UK-based HPRs' perspectives towards JAKi use in IA patients, and in the context also of the COVID-19 pandemic. Methods: A 15-item anonymous online survey, with both closed and open-ended questions, was designed and piloted on 5 HPRs with amendments made based on their feedback. The survey was advertised on Twitter and shared by email in September 2021. Data were exported from the online survey platform and analysed descriptively with the assistance of statistical software. Results: Fifty-one HPRs responded to the survey: 37 Consultants, 7 Registrars, 5 Clinical Nurse Specialists, 1 Clinical Fellow and 1 'other rheumatology role' (not stated). Responses were received from 11/12 UK regions. Most represented was Greater London (18%) and North-West England (16%). 69% of respondents worked in secondary care, with the remaining 31% in tertiary care. The majority (40%) spent 1-25% of their job role doing research, followed by 27% who were not research active. 60% of HPRs indicated that 1-5% of their RA and/or PsA patients take a JAKi (no HPRs had more than 15% of their RA/PsA patients on a JAKi). 96% of HPRs indicated that they prescribe JAKi in their clinical practice, with 91% of those who prescribe following their local guidelines. 72% of respondents who prescribe JAKi, prescribed them 'frequently' as a monotherapy. Figure 1 shows responses chosen for when JAKi therapy is usually started and for feeling less confdent with JAKi prescription. Of those HPRs who prescribe, 17% have continued JAKi in their patients. When discontinuation occurred, the most common reasons chosen (multiple responses allowed) were 'due to inefficacy' (60%), 'due to other adverse events' i.e., non-major adverse cardiovascular events (32%) and 'due to herpes zoster infection' (28%). 55% of HPRs would consider switching patients to another JAKi after initial failure. Across prescrib-ers, 49% indicated no impact of the COVID-19 pandemic on their prescribing of JAKi. Common reasons chosen for a change in prescribing patterns for JAKi as a result of the pandemic (multiple responses allowed) included: prescribing them more as 'an alternative to infusions, in order to reduce hospital visits' (23%) and as 'an alternative to injections, in order to reduce at-home training visits' (21%). This was followed by 'other reason' (15%) with the free text from all 7 respondents highlighting the benefts of the shorter half-life of JAKi e.g., 'Prescribed more as quick on and quick off so can be discontinued quickly in event of severe infection' (Registrar, Greater London). Safety concerns around the use of JAKi were raised in 13/14 free text comments left at the end of the survey e.g., 'I am concerned about recent reports of increased VTE [venous thromboembolism] and malignancies' (Consultant, Yorkshire and the Humber) and 'Concerns about cardiovascular safety' (Clinical Fellow, Scotland). Conclusion: A large proportion of HPRs indicate confdence in prescribing JAKi to their patients with IA, adhering to local guidelines. JAKi are largely prescribed as monotherapy, with the most frequent reason for discontinuation being ineffi-cacy. The COVID-19 pandemic seems to have positively impacted JAKi prescription, however, safety concerns over JAKi use remain for some HPRs.