P10 Psychologist? But the pain is not all in my head…

Abstract Introduction/Background Chronic pain has been dubbed a place where mental and physical health meet. The emotional and social needs of young people experiencing Chronic Pain can be vast, yet families often fall through cracks in services. Other families receive a plethora of support options from psychological practitioners, allied health professionals and social care, but with laser focus on the medical answer and fix decline all potential referrals. Historically psychology received numerous referrals for young people who declined to meet with us, leaving our colleagues and families feeling unheard, frustrated stuck and alone. How to support families/colleagues without seeing children individually? Description/Method Ed (15-year-old male) experiencing paralysis and pain in dominant arm and hand: • extensive investigations and specialist consultations sought, including scans and neurological opinion - nothing medically concerning identified. • Previous referral to another tertiary psychology service made and group therapy offered. • Over the course of the investigations reports of pain and A&E attendance increased, whilst school attendance decreased -> referred to chronic pain service. Input offered at Evelina London: • 2 x Multidisciplinary clinic (chronic pain diagnosis given at first appointment). • 1 x Pain education workshop. • Multiple physiotherapy and occupational therapy appointments. • 3 x referrals to psychology over preceding 9 months with concerns about mood and engagement. Progress: Initial gains in first months • Pain and paralysis reduced to dominant hand only. • Strength and range of motion restored to shoulder and arm. • School attendance increased. However, in recent months A&E attendances and reports of pain were increasing, with service engagement decreasing. Requests for individual psychology for Ed had been made by various team members, but Ed had not taken up offered psychology conversations or appointments. This contributed to expressions of frustration, worry and hopelessness in the team who wanted individual psychology for Ed “to move things forward”. 3rd Multidisciplinary Clinic appointment: With all therapists and doctors in attendance the psychologist took time to explore Ed and his mother's daily lives outside pain, their interests, joys and skills. They explored the family's explanations for pain, experience of services so far, roles they felt investigations, doctors, occupational therapy, physiotherapy and psychology had, could and should play. Amongst other things particular emphasis placed on: • Privileging family's views. • Using patient's language. • Regular summarising. • Placing professionals then family members in listening positions and exploring what each had heard the other say. The psychologist endorsed Ed's view that psychology had no role to play in his care. Discussion/Results Was Ed in desperate need of 1-1 psychology to move forward? For this family the psychological intervention was with both family and healthcare system. The psychologist used a narrative approach, positioned as a curious (almost) "outsider", with the patient as an expert in their own care. Beginning with a foundation of identity outside pain, followed by facilitated witnessing of ideas and experiences for family and healthcare professionals. Thus, new insights, a shared understanding and plan could develop. With this approach it emerged referrals to psychology coupled with no simple medical explanation and treatment fed fears professionals thought "pain was all in Ed's head". This shook confidence in the healthcare team and reinforced messages the family experienced family, school and friends as giving. Around this time Ed's progress stalled. Whilst family described previous negative experiences of psychologists, current physiotherapy was described as developing "strength and mobility", occupational therapy as "really understanding" and giving "useful exercises/advice", cheerleading throughout a difficult journey. Doctors offered (another) detailed review of investigations and physical examination reiterating pain, but not damage were present. The psychologist thoroughly explored and all things psychology might add, none of which the family felt were useful. This choice was thoroughly validated and respected. During the appointment "thinking break" (family not present) the team were surprised by the family's positive interpretations of care offered thus far. It was hypothesised not feeling believed/validated was a very difficult place to "recover" from and ideas generated of what validation/being believed would look like for this family. Given the family's vocalised block to progress was "the hand", perhaps is was a hand specialist rather than a psychologist? The family were pleased to see joint occupational and hand therapy resulting in "full recovery". Throughout the professionals were offered regular psychological consultation and team discussion time. Key learning points/Conclusion There are many ways to peel the chronic pain orange.  When faced with often overwhelming needs of young people living with chronic pain and sometimes overwhelming needs of referring health and social care systems it can be hard to hold onto this idea. Initially referrers thought individual psychology was indicated, what was offered and created change was a psychologically informed multidisciplinary appointment in which the family's worries were given space, validated and answered, whilst their right to decline psychological support was validated and bolstered. Alongside ongoing psychological consultation to professionals. Pain is all in my head, no-one believes me, no-one understands.  Are powerful ideas that can be detrimental to family-healthcare relationships, whether stated directly, implied or internally voiced. They can represent a significant barrier to families accessing psychology directly. We may wholeheartedly believe people experience pain that cannot reliably be seen or measured externally, but that does not mean we are experienced that way. For me this case highlighted the importance of • checking out beliefs about symptoms. • gauging whether ongoing/regular validation and reassurance is needed and in what form. • even celebrating someone's successes in the face of pain even suggesting someone can move on with their life can be experienced as invalidating/not getting it. Families need a voice in their won paths forward. Is what you thought you said what they thought you meant?  Whether with families or professional you can never underestimate the value of checking whether the same thing was heard differently. This is written from the position of a psychologist embedded within a predominantly non-pharmacological multidisciplinary chronic pain service, which informed the intervention. Other cases have invited/necessitated different approaches. It would be interesting and helpful to invite discussion around the variety of ways similar/different road blocks have been bypassed, removed or otherwise.

Introduction/Background: Chronic Pain is a complex condition. Our approach is to enable young people to function despite their pain. All patients are offered our Pain Education Workshop (PEW) based on pain education, self-management, and cognitive behavioural therapy. Pre-pandemic this was delivered face to face, and with social distancing guidelines in place we adapted virtually in response to patient need. We were interested to see if the children and young people were finding the intervention useful in their journey towards managing their pain. We hoped this would prove to a positive experience for our patients in a time of great uncertainty. Description/Method: Data was collected from patients who attended a weekday virtual PEW (a 3-hour multidisciplinary biopsychosocial intervention) at Evelina London Children's Hospital between November 2020 and May 2022. All patient had an initial appointment in our multidisciplinary Paediatric and Adolescent Chronic Pain Clinic. Overall, the aims of the workshop are for patients to learn and recognize the link between psychosocial factors and the impact of boom and bust on pain intensity, whilst supporting patients' ability to self-manage. Attendees completed a series of pre and post workshop self-report questionnaires. The questionnaires requested patients to rate their confidence in their understanding of pain and in using selfmanagement strategies, using a 5 point Likert scale (1¼Not at All to 5¼Extremely Confident). Patients were then asked an open question to establish what they would like to gain from the workshop. Immediately post workshop patients were asked to re-rate their confidence in their understanding of pain and in using self-management strategies. They were also asked to report what they will do differently as a result of attending the workshop. A statistical comparison of the patients' confidence in understanding chronic pain before and after PEW; and in self-management strategies were assessed with paired t-tests. Our null hypothesis being that no difference pre and post workshop would be found. A qualitative content analysis of the patient's reported hopes for (preworkshop) and what they took away (post workshop) was undertaken and key themes were identified. Discussion/Results: Since November 2020, a total of 140 patient were offered PEW, 107 of which undertook this intervention. Group sizes varied from 4-14 young-person and parent diads, over 17 sessions. Full data sets for pre-and post-intervention feedback were analysed on 56/107 patients. These patients' average age was 14 (range 9-18); 47 female, 9 male. The mean patient self-reported understanding of chronic pain preworkshop was 2.8/5 (range 1-5). Post-workshop scores increased to 4.0/5 (range 3-5). Patient's confidence in managing their pain increased from 3.2/5 (range 2-5) to 3.9/5 (range 2-5). Paired T-tests on these scores showed a statistically significant difference in understanding chronic pain post PEW (P < 0.001), and in confidence in selfmanagement post PEW (P < 0.001). Themes identified pre-intervention by the young people included: • Increasing understanding and knowledge of chronic pain • learning how to cope with pain • Improving access to treatment Take home message themes: • relaxation techniques • pacing • goal setting. Analysis of the themes in combination with the patient reported scores demonstrated that outcomes as set by the young person were met by the intervention. The results from this study provide evidence for the effectiveness of PEW, in terms of delivering predefined workshop outcomes. It showed significant improvements in patients understanding of chronic pain, and patient's confidence in using self-management strategies. Similarly, when asked what they took away from the intervention, patients reported wanting to practice using self-management strategies-reinforcing the assumption that PEW was effective in increasing patients confidence to self-manage. As a result, the findings are supportive of assumptions that CBT interventions combined with pain education can have a positive impact, increasing patient's selfefficacy and increasing their confidence to self-manage. Key learning points/Conclusion: In conclusion, this study provides evidence for the effectiveness of a brief multidisciplinary biopsychosocial intervention for chronic pain. Previous research into the field has mainly focused on face-to-face interventions run over numerous weekly sessions. We have demonstrated similar effectiveness whilst using an online, one-off intervention. This demonstrates services can access patients and offer effective treatment whilst reducing the impact on resources. Moreover, we provided much needed virtual support for young people during and post pandemic. Limitations: • Small sample size. Larger sample is needed to fully assess the effectiveness of virtual PEW and to generalise to a wider population. • High attrition rate (33/140). Paediatric patients with chronic conditions are more likely to show persistent/chronic absences (school attendance <90%). Research has shown that psychoeducational interventions have been most effective when they are run on weekends to minimise the loss of school. Access to technology to participate in a virtual group may also be a factor. It is likely that further longitudinal studies are needed to assess the long-term effectiveness of PEW. We are unable to predict whether patients remained confident in using self-management strategies after the workshop or for how long. Since chronic pain is recurrent pain lasting longer than 3 months it is important to capture how effective PEW is in increasing patient's confidence in managing their condition in the long-term. It is also necessary to assess the long-term effectiveness of PEW in increasing and improving patients understanding of pain. Studies have shown recall can improve 9-24 hours after new information is learnt. However, past 24 hours, recall of learnt information starts to decline if the information is not relearned continuously. Not being able to recall pain messages can affect patients' abilities to utilise this knowledge to inform coping strategies and manage symptoms long term. Introduction/Background: Chronic pain has been dubbed a place where mental and physical health meet. The emotional and social needs of young people experiencing Chronic Pain can be vast, yet families often fall through cracks in services. Other families receive a plethora of support options from psychological practitioners, allied health professionals and social care, but with laser focus on the medical answer and fix decline all potential referrals. Historically psychology received numerous referrals for young people who declined to meet with us, leaving our colleagues and families feeling unheard, frustrated stuck and alone. How to support families/colleagues without seeing children individually? Description/Method: Ed (15-year-old male) experiencing paralysis and pain in dominant arm and hand: • extensive investigations and specialist consultations sought, including scans and neurological opinion -nothing medically concerning identified.
• Previous referral to another tertiary psychology service made and group therapy offered. • Over the course of the investigations reports of pain and A&E attendance increased, whilst school attendance decreased -> referred to chronic pain service. Input offered at Evelina London: • 2 x Multidisciplinary clinic (chronic pain diagnosis given at first appointment).
• 1 x Pain education workshop.
• Multiple physiotherapy and occupational therapy appointments.
• 3 x referrals to psychology over preceding 9 months with concerns about mood and engagement. Progress: Initial gains in first months • Pain and paralysis reduced to dominant hand only. i26 https://academic.oup.com/rheumap POSTERS • Strength and range of motion restored to shoulder and arm. • School attendance increased. However, in recent months A&E attendances and reports of pain were increasing, with service engagement decreasing. Requests for individual psychology for Ed had been made by various team members, but Ed had not taken up offered psychology conversations or appointments. This contributed to expressions of frustration, worry and hopelessness in the team who wanted individual psychology for Ed "to move things forward". 3rd Multidisciplinary Clinic appointment: With all therapists and doctors in attendance the psychologist took time to explore Ed and his mother's daily lives outside pain, their interests, joys and skills. They explored the family's explanations for pain, experience of services so far, roles they felt investigations, doctors, occupational therapy, physiotherapy and psychology had, could and should play. Amongst other things particular emphasis placed on: • Privileging family's views. • Using patient's language. • Regular summarising. • Placing professionals then family members in listening positions and exploring what each had heard the other say. The psychologist endorsed Ed's view that psychology had no role to play in his care. Discussion/Results: Was Ed in desperate need of 1-1 psychology to move forward? For this family the psychological intervention was with both family and healthcare system. The psychologist used a narrative approach, positioned as a curious (almost) "outsider", with the patient as an expert in their own care. Beginning with a foundation of identity outside pain, followed by facilitated witnessing of ideas and experiences for family and healthcare professionals. Thus, new insights, a shared understanding and plan could develop. With this approach it emerged referrals to psychology coupled with no simple medical explanation and treatment fed fears professionals thought "pain was all in Ed's head". This shook confidence in the healthcare team and reinforced messages the family experienced family, school and friends as giving. Around this time Ed's progress stalled. Whilst family described previous negative experiences of psychologists, current physiotherapy was described as developing "strength and mobility", occupational therapy as "really understanding" and giving "useful exercises/advice", cheerleading throughout a difficult journey. Doctors offered (another) detailed review of investigations and physical examination reiterating pain, but not damage were present. The psychologist thoroughly explored and all things psychology might add, none of which the family felt were useful. This choice was thoroughly validated and respected. During the appointment "thinking break" (family not present) the team were surprised by the family's positive interpretations of care offered thus far. It was hypothesised not feeling believed/validated was a very difficult place to "recover" from and ideas generated of what validation/ being believed would look like for this family. Given the family's vocalised block to progress was "the hand", perhaps is was a hand specialist rather than a psychologist? The family were pleased to see joint occupational and hand therapy resulting in "full recovery". Throughout the professionals were offered regular psychological consultation and team discussion time. Key learning points/Conclusion: There are many ways to peel the chronic pain orange. When faced with often overwhelming needs of young people living with chronic pain and sometimes overwhelming needs of referring health and social care systems it can be hard to hold onto this idea. Initially referrers thought individual psychology was indicated, what was offered and created change was a psychologically informed multidisciplinary appointment in which the family's worries were given space, validated and answered, whilst their right to decline psychological support was validated and bolstered. Alongside ongoing psychological consultation to professionals. Pain is all in my head, no-one believes me, no-one understands. Are powerful ideas that can be detrimental to family-healthcare relationships, whether stated directly, implied or internally voiced. They can represent a significant barrier to families accessing psychology directly. We may wholeheartedly believe people experience pain that cannot reliably be seen or measured externally, but that does not mean we are experienced that way. For me this case highlighted the importance of • checking out beliefs about symptoms. • gauging whether ongoing/regular validation and reassurance is needed and in what form.
• even celebrating someone's successes in the face of pain even suggesting someone can move on with their life can be experienced as invalidating/not getting it. Families need a voice in their won paths forward. Is what you thought you said what they thought you meant? Whether with families or professional you can never underestimate the value of checking whether the same thing was heard differently. This is written from the position of a psychologist embedded within a predominantly non-pharmacological multidisciplinary chronic pain service, which informed the intervention. Other cases have invited/ necessitated different approaches. It would be interesting and helpful to invite discussion around the variety of ways similar/different road blocks have been bypassed, removed or otherwise.

Nottingham University Hospitals, Nottingham, United Kingdom
Introduction/Background: Juvenile dermatomyositis is a rare inflammatory disease with a reported incidence of 0.8-4.1 per million children per year. It presents with a constellation of symptoms and signs of inflammation of skin and muscle, and is associated with significant morbidity if untreated. Juvenile systemic sclerosis (JSSc) is an even rarer rheumatological condition of childhood with significant risk of internal organ involvement, especially cardiopulmonary disease. We herewith present the case of a 7-year-old boy with history of hypothyroidism associated with a PAX8 gene variant who presented with clinical features of an overlap of Systemic Sclerosis with JDM with supportive autoantibody profile. Description/Method: A 7-year-old boy presented with a history of restricted range of movements in his hands -noted due to difficulties with pen grip -and calcinosis. He reported symptoms of fatigue, intolerance to cold with colour changes to hands and feet, stiffness of movements particularly in the morning, and infrequent episodes of choking. His past medical history was significant for hypothyroidism secondary to a paternally inherited PAX8 missense mutation, and there is a family history of Raynaud's and hypothyroidism. A detailed examination identified diffusely swollen hands with sclerodactyly, calcinosis of his elbows and fingertips, and limited flexion of his fingers and wrists. He also had telangiectasia of his upper eyelids, Gottron's papules over his knees and elbows, and sluggish circulation in his hands and feet. He had evidence of mild proximal muscle weakness. His investigations revealed mild elevation of muscle enzymes with normal inflammatory markers. His autoantibody profile showed a moderately positive ANA titre of 1600 with a nucleolar pattern, and was positive for anti-NXP2 and anti-SCL-100 antibodies MRI scan of the pelvis showed no evidence of myositis, echocardiogram was normal and a high-resolution CT scan of chest was normal with no features of interstitial lung disease. The overall picture was one of Systemic Sclerosis/JDM overlap with CREST syndrome. He was commenced on induction therapy with IV Methylprednisolone and Cyclophosphamide in view of the calcinosis. After three cycles of Cyclophosphamide and weaning course of oral corticosteroids, his energy levels are significantly improved and he has better overall mobility with no significant proximal muscle weakness (Childhood Myositis Assessment Scale score 49/53). However, flexion of his fingers remains limited albeit better; he has ongoing fingertip calcinosis but fewer lesions over his elbows. He has been commenced on weekly subcutaneous Methotrexate as he completes Cyclophosphamide. Discussion/Results: This patient had an unusual medical history of early onset thyroid dysfunction, the genetic testing for which revealed a missense PAX8 gene variant [c.49G>Ap.(Gly17Arg)] (also present in his father, who is euthyroid). This was classified as being of uncertain significance, although felt to clinically be the most likely cause for his hypothyroidism. There was no evidence to suggest that PAX8 gene mutations increased the risk of autoimmune conditions. There is evidence that PAX8 gene mutations, when expressed on malignant cells, may confer resistance to chemotherapy, which made us rethink the plan to commence him on Cyclophosphamide. However, we were