AimsHealth comorbidities contribute significantly to the development and maintenance of illness in patients with Functional Neurological Disorder (FND). As part of a service evaluation project, we investigated the physical and mental health comorbidities of people referred to a community neuropsychiatry service in East Kent, in one-year periods preceding and following the March 2020 lockdown due to COVID-19.MethodsWe included all people accepted to the service between 23rd March 2019 and 23rd March 2021, where the reason for referral was Functional Neurological Disorder (FND) or Non-Epileptic Attack Disorder (NEAD). Referrals to the service for other reasons were excluded, as were declined referrals. Routinely collected data sources were reviewed and data stored in anonymized fashion. Data were analysed using Statistical Package for Social Sciences (SPSS).ResultsTotal number of referrals for FND in the 2-year period was 260, with 161 referrals for NEAD and 99 for other FND.In the pre-lockdown period, 163 patients were referred due to FND (101 with NEAD, 62 for other FND). There were fewer FND referrals in the post-lockdown period: 60 referrals for NEAD and 37 for other FND. The majority were female (74% pre-lockdown, 81% post-lockdown). Where ethnicity was recorded, White British was the most common (94% pre-lockdown, 90% post-lockdown), with a small number of people from other ethnic groups (3.5% White Other, 1.4% BAME, 1.4% Mixed pre-lockdown; 5.4% White Other, 3.2% BAME and 1.1% Mixed post-lockdown). Ethnicity was not specified in 21 cases (13%).Of the pre-lockdown group, 15 patients had prior contact with Child and Adolescent Mental Health Services (9%), with 7 patients (7%) in the post-lockdown group. Many patients had previous contact with mental health services (47% pre-lockdown, 53% post-lockdown). The majority of patients had at least one physical illness (69% pre-lockdown, 73% post-lockdown). Most had 1–3 physical comorbidities but 9% (pre-lockdown, 7% post-lockdown) had more than 4. Fibromyalgia (14% pre-lockdown, 12% post-lockdown), chronic pain (23% pre-lockdown, 21% post-lockdown), and epilepsy (11%, 9%) were common. Over 90% had psychiatric illness in both periods. Most patients had 1–3 psychiatric illnesses; a few had more than 4 (6.1% pre-lockdown, 1.4% post-lockdown). Depressive disorder was the most common comorbidity in both groups (41% pre-lockdown, 44% post-lockdown), followed by anxiety (35% pre-lockdown, 36% post-lockdown). PTSD was present in 8% pre-lockdown and 8.2% post-lockdown.ConclusionPhysical and psychiatric comorbidities are common in people with FND; multidisciplinary working and liaison between services is crucial for care of these patients.
AimsFunctional Neurological Disorder (FND) is known to be associated with high healthcare resource utilisation and poor quality of life. Patients’ understanding of the disorder is considered instrumental in improving prognosis.We produced a symptom self-management patient education strategy with a booklet and FND symptoms recording template in a community neuropsychiatry setting. We embedded this psychoeducation intervention in a post-nursing triage model of care.MethodA co-production cycle of patient education material was implemented as part of a Quality Improvement Project (QIP) at East Kent Neuropsychiatry Service. Year 4 medical students completed their first QIP cycle involving 4 students, 2 multidisciplinary team members and 4 patients with functional neurological presentations. An FND leaflet and symptom recording template was produced and reviewed using feedback domains such as leaflet readability, perceived usefulness, and template design. The revised version of leaflet was then pilot-tested in second QIP cycle via email or post to 12 patients awaiting their group psychology or neuropsychiatry appointments for treatment of FND. The uptake and impact of leaflet was assessed using telephone-based structured feedback collection.ResultThe first QIP cycle included 10 participants and generated qualitative knowledge domains, providing examples of different types of FND presentations and a biological-psychological-social model explaining onset and/or recurrence of FND symptoms. Group patient feedback and co-production input allowed inclusion of the patient voice and a re-design of leaflet and symptom recording template.The second QIP cycle involved 12 participants: feedback was collected two weeks after circulation of patient education material. Only 5 participants (42%) had read and used their education leaflet and template during this period. Patients described the booklet as useful overall, but thought it to be more useful at the point of diagnosis and referral to neuropsychiatry. Qualitatively, patients wished there to be more emphasis on FND being explained as “less psychiatric, more a neuropsychiatric problem”, and that it would be “very good for someone who had just been diagnosed”. 80% of responders rated the leaflet quality 8/10 or above. These respondents felt that the leaflet had helped them understand their condition better than they did previously. Usefulness of an additional self-formulation flowchart was rated as 8/10 or below by all patients - with several finding it difficult to use.ConclusionOur QIP supports the need for early patient education when discussing diagnosis of FND. The finding of 42% uptake within two weeks of leaflet dispatch is encouraging.
AimsPatients with Functional Neurological Disorder (FND) often endure low quality of life. Understanding the diagnosis is critical to management, but patients with FND do not always receive appropriate information about their condition. The patient journey through healthcare services can be complex, with often long waits for specialist attention. Creating psychoeducation resources for patients is important to improve patient experience and outcomes. We developed a symptom self-management patient education booklet with an FND symptom recording template, using a co-production model, in a community neuropsychiatry setting.MethodsWe used co-production as part of a quality improvement project (QIP) at East Kent Neuropsychiatry Service, to produce a patient education booklet with symptom self-management information and a symptom recording template. The QIP cycle involved input from 11 participants. Initially, 3 medical students and 4 multi-disciplinary team members adapted an existing booklet, removing medical jargon and simplifying diagrams. The adapted booklet was distributed to patients with FND who were attending psychoeducation/Cognitive Behavioural Therapy group sessions. One week later, four patients discussed the booklet with a medical student facilitator; both quantitative and qualitative feedback was obtained. Feedback was gathered using an adapted 20 point Ensuring Quality of Information for Patients (EQIP) tool. Patient responses were recorded, and qualitative themes identified.ResultsFour themes were found from qualitative feedback during co-production: need for a glossary; an expanded resource list; more diagrams to simplify text; and for the booklet to also address family, friends, and carers. The EQIP questionnaire feedback emphasised that the booklet contained too much medical jargon and that it didn't personally address the reader. On average patients scored the booklet 53.33% using the EQIP questionnaire.The booklet was further adapted and a glossary, further diagrams and a section addressing family, friends, and carers was added. Further resources were added and the text was simplified for clarity.ConclusionThis QIP shows the value of co-producing information for an underserved patient population. Patient psychoeducation is a key part of treatment; involving patients at an early stage of the development of information and self-management tools will increase their acceptability to patients and improve the accessibility of patient psychoeducation.
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