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Research Article| Volume 63, P105-112, December 2018

Awareness, attitudes, skills and training needs of psychiatrists working with adults with intellectual disability in managing epilepsy

Open ArchivePublished:November 14, 2018DOI:https://doi.org/10.1016/j.seizure.2018.11.001
Awareness, attitudes, skills and training needs of psychiatrists working with adults with intellectual disability in managing epilepsy
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      Highlights

      • •
        Comorbid epilepsy is found in 22.5% of people with intellectual disability (ID).
      • •
        The Royal college of Psychiatrists published CR203 to clarify ID psychiatrist role.
      • •
        A UK survey undertaken on CR203 impact found minimum standards are frequently not met.
      • •
        ID psychiatrists have an interest in epilepsy care irrespective of region and grade.
      • •
        Significant regional disparity exists of services, clinician knowledge and skills.

      Abstract

      Purpose

      Comorbid epilepsy is found in 22.5% of people with intellectual disability (ID). Responding to the continuing lack of clarity to the role of the ID psychiatrist in the United Kingdom with regards to epilepsy care, the Royal College of Psychiatrists (RCPsych) published the College Report (CR) 203 in May 2017. This proposed a three-tiered model of competency in ID epilepsy care, with minimum acceptable standards described as Bronze and greater expertise as Silver and Gold. This article documents the perceptions of ID psychiatrists as to their skills and training needs, and the perceived impact of CR203 on the profession.

      Methods

      An e- questionnaire, matching the standards on CR203 and encouraging comments was designed, reviewed and approved by the RCPsych ID executive faculty. The survey was sent by email to all UK-registered RCPsych ID Faculty members via the RCPsych communications.

      Results

      Of the expected 332 ID psychiatrists in the UK, 141 responses were received (42.4%). Key findings included that ID psychiatrists as a group have an interest in epilepsy but Bronze standards were frequently unmet, with variation across the UK. There was a noted lack of agreement on role among ID psychiatrists again linked to geographical variation. Regional disparity correlated to population density and proximity to tertiary neurological centres.

      Conclusion

      There are significant implications on training, both pre- and post- accreditation for the ID psychiatry speciality. The CR203 standards appear to be steps in the right direction to help define the role ID psychiatrists have in the delivery of epilepsy care.

      Keywords

      1. Introduction

      Comorbid epilepsy is found in 22.5% of people with ID, a prevalence positively correlated with severity of ID [
      • Robertson J.
      • Hatton C.
      • Emerson E.
      • Baines S.
      Prevalence of epilepsy among people with intellectual disabilities: a systematic review.
      Seizure. 2015; 29: 46-62
      ,
      Scottish intercollegiate guidelines network.
      2015
      https://www.sign.ac.uk/assets/sign143_2018.pdf
      ]. The link between behavioural disturbance in people with ID and epilepsy is complex and poorly understood [
      • Kerr M.
      • Linehan C.
      • Brandt C.
      • Kanemoto K.
      • Kawasaki J.
      • Sugai K.
      • et al.
      Behavioral disorder in people with an intellectual disability and epilepsy: a report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE.
      Epilepsia Open. 2016; 1: 102-111
      ,
      • McGrother C.
      • Bhaumik S.
      • Thorp C.
      • Hauck A.
      • Branford D.
      • Watson J.
      Epilepsy in adults with intellectual disabilities: prevalence, associations and service implications.
      Seizure. 2006; 15: 376-386
      ]. There is a paucity of research [
      • Robertson J.
      • Baines S.
      • Emerson E.
      • Hatton C.
      Service responses to people with intellectual disabilities and epilepsy: a systematic review.
      J Appl Res Intellect Disabil. 2015; 30: 1-32https://doi.org/10.1111/jar.12228
      ,
      • Shankar R.
      • Rowe C.
      • Van Hoorn A.
      • Henley W.
      • Laugharne R.
      • Cox D.
      • et al.
      Under representation of people with epilepsy and intellectual disability in research.
      PLoS One. 2018; 13e0198261https://doi.org/10.1371/journal.pone.0198261
      ]. Seizures themselves are often more complex and subtle than in the general population [
      • Chapman M.
      • Iddon P.
      • Atkinson K.
      • Brodie C.
      • Mitchell D.
      • Parvin G.
      • et al.
      The misdiagnosis of epilepsy in people with intellectual disabilities: a systematic review.
      Seizure. 2011; 20: 101-106
      ], leading to higher rates of misdiagnosis [
      • Devinsky O.
      • Asato M.
      • Camfield P.
      • Geller E.
      • Kanner A.
      • Keller S.
      • et al.
      Delivery of epilepsy care to adults with intellectual and developmental disabilities.
      Neurology. 2015; 85: 1512-1521
      ,
      • Kerr M.
      • Linehan C.
      • Brandt C.
      • Kanemoto K.
      • Kawasaki J.
      • Sugai K.
      • et al.
      Behavioral disorder in people with an intellectual disability and epilepsy: a report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE.
      Epilepsia Open. 2016; 1: 102-111
      ]. Reliance on informants is another possible source of uncertainty [
      • Kerr M.
      • Watkins L.
      • Angus-Leppan H.
      • Corp A.
      • Goodwin M.
      • Hanson C.
      • et al.
      The provision of care to adults with an intellectual disability in the UK. A special report from the intellectual disability UK chapter ILAE.
      Seizure. 2018; 56: 41-46
      ]. The confidential inquiry into premature deaths of people with intellectual disability (CIPOLD) [
      Confidential inquiry into the premature deaths of people with learning disabilities.
      2013
      http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf
      ] found 43% of their examined sample had epilepsy. Sudden Unexpected Death in Epilepsy (SUDEP) rates are up to nine times higher in people with ID than in people without [
      • Young C.
      • Shankar R.
      • Palmer J.
      • Craig J.
      • Hargreaves C.
      • McLean B.
      • et al.
      Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk?.
      Seizure. 2015; 25: 112-116
      ]. The British Branch of the International League Against Epilepsy (ILAE) Working Group in its recent national survey [
      • Kerr M.
      • Watkins L.
      • Angus-Leppan H.
      • Corp A.
      • Goodwin M.
      • Hanson C.
      • et al.
      The provision of care to adults with an intellectual disability in the UK. A special report from the intellectual disability UK chapter ILAE.
      Seizure. 2018; 56: 41-46
      ] identified significant disparity in diagnosis and medical treatment, delivery of service, risk management and broader impact upon quality of life for adults with ID and epilepsy compared to the general population. It showcased care for people for people with ID and epilepsy was fragmented, divided and shared without clarity between psychiatry, neurology and primary care services. The report recognised that the care pathways for this vulnerable population are so splintered that it has given rise to disparity of health provision compared to paediatric and general population [
      • Kerr M.
      • Watkins L.
      • Angus-Leppan H.
      • Corp A.
      • Goodwin M.
      • Hanson C.
      • et al.
      The provision of care to adults with an intellectual disability in the UK. A special report from the intellectual disability UK chapter ILAE.
      Seizure. 2018; 56: 41-46
      ].
      There is guidance for diagnosis, investigations and management of epilepsy in ID [
      Scottish intercollegiate guidelines network.
      2015
      https://www.sign.ac.uk/assets/sign143_2018.pdf
      ,

      Epilepsies: diagnosis and management | Guidance and guidelines | NICE [Internet]. Nice.org.uk. 2004 and 2012 [cited 12 September 2018]. Available from: https://www.nice.org.uk/guidance/cg137/chapter/1-guidance#children-young-people-and-adults-with-learning-disabilities-see-also-sections-115-and-117.

      ] and agreement that the management requires a specialist multidisciplinary team skilled in formulating seizure events in the wider context of mental health, behavioural change and social care provision [

      Epilepsies: diagnosis and management | Guidance and guidelines | NICE [Internet]. Nice.org.uk. 2004 and 2012 [cited 12 September 2018]. Available from: https://www.nice.org.uk/guidance/cg137/chapter/1-guidance#children-young-people-and-adults-with-learning-disabilities-see-also-sections-115-and-117.

      ,
      • McGrother C.
      • Bhaumik S.
      • Thorp C.
      • Hauck A.
      • Branford D.
      • Watson J.
      Epilepsy in adults with intellectual disabilities: prevalence, associations and service implications.
      Seizure. 2006; 15: 376-386
      ]. The service model must be able to provide individualisation in healthcare, such as more frequent and longer appointments [
      • Devinsky O.
      • Asato M.
      • Camfield P.
      • Geller E.
      • Kanner A.
      • Keller S.
      • et al.
      Delivery of epilepsy care to adults with intellectual and developmental disabilities.
      Neurology. 2015; 85: 1512-1521
      ,
      Medical and social needs of people with epilepsy and intellectual disability. International League Against Epilepsy.
      2013
      https://www.ilae.org/files/ilaeGuideline/ListeningForChange-2013.pdf
      ,
      Valuing people now: a new three-year strategy for people with learning disabilities : department of Health - Publications [Internet].
      2009
      ]. A White Paper identified that the extent of needs was a challenge across various professional groups [
      • Kerr M.
      • Linehan C.
      • Thompson R.
      • Mula M.
      • Gil-Nagal A.
      • Zuberi S.
      • et al.
      A white paper on the medical and social needs of people with epilepsy and intellectual disability: the Task Force on Intellectual Disabilities and Epilepsy of the International League Against Epilepsy.
      Epilepsia. 2014; 55: 1902-1906
      ]. A study comparing care provided by ID psychiatrists and that of general neurology has found parity, but observed they tended to care for patients with different needs [
      • Ring H.
      • Zia A.
      • Bateman N.
      • Williams E.
      • Lindeman S.
      • Himlok K.
      How is epilepsy treated in people with a learning disability? A retrospective observational study of 183 individuals.
      Seizure. 2009; 18: 264-268
      ,
      • Wagner A.
      • Croudace T.
      • Bateman N.
      • Pennington M.
      • Prince E.
      • Redley M.
      • et al.
      Clinical services for adults with an intellectual disability and epilepsy: a comparison of management alternatives.
      PLoS One. 2017; 12e0180266
      ], and across the UK, care provision is fragmented, variable and geographical variations exist [
      • Robertson J.
      • Hatton C.
      • Emerson E.
      • Baines S.
      Prevalence of epilepsy among people with intellectual disabilities: a systematic review.
      Seizure. 2015; 29: 46-62
      ,
      • Kerr M.
      • Watkins L.
      • Angus-Leppan H.
      • Corp A.
      • Goodwin M.
      • Hanson C.
      • et al.
      The provision of care to adults with an intellectual disability in the UK. A special report from the intellectual disability UK chapter ILAE.
      Seizure. 2018; 56: 41-46
      ,
      Future role of psychiatrists working with people with learning disability. Royal College of Psychiatrists faculty report FR/LD/1.
      2011
      ]. In the UK neurology services are predominantly hospital based and have a focus on treating neurological disorders in addition to epilepsy. Specialist health services for ID are community based and focused on psychiatric, behavioral and complex health co-morbidities. This in some areas has led to the inclusion of epilepsy management given the over representation of epilepsy concerns in people with ID and its association with mental and behavioural health outcomes.
      The UK is the only country where the national medical regulator recognises the psychiatric speciality in ID. The Royal College of Psychiatrists advice the medical regulator of the UK, the General Medical Council, on the curriculum for the post graduate training in psychiatry. The Faculty of Intellectual Disability of the Royal College of Psychiatrists provides specific guidance and advice on the training requirements at both basic and senior post graduate levels and the standards needed for accreditation in the speciality of Intellectual Disability. ID psychiatrists historically, along with managing mental health issues and behavioural problems extended their role to handling epilepsy, but, coinciding with the national policy move towards mainstreaming and the rapid development in anti-epileptic drugs (AEDs) over the last 20 years, this provision has reduced in an unsystematic manner. While basic knowledge of epilepsy is assessed at multiple levels of the postgraduate training prior accreditation in ID psychiatry, clarity on the ID psychiatrist’s role in epilepsy care is still lacking. Two sets of guidelines that were developed by consensus, in the international community by the International Association for the Scientific Study of Intellectual Disability [
      • Kerr M.
      • Scheepers M.
      • Besag F.
      • Bowley C.
      • Brown S.
      • Espie C.
      • et al.
      Clinical guidelines for the management of epilepsy in adults with an intellectual disability.
      Seizure. 2001; 10: 401-409
      ,
      • Kerr M.
      • Scheepers M.
      • Arvio M.
      • Beavis J.
      • Brandt C.
      • Brown S.
      • et al.
      Consensus guidelines into the management of epilepsy in adults with an intellectual disability.
      J Intellect Disabil Res. 2009; 53: 687-694
      ] which asserted standards for the care of people with ID were not fully incorporated into routine clinical practice for the management of people with ID and epilepsy in the UK.
      While ID speciality has struggled to come to terms with the changes to epilepsy care, in paediatrics epilepsy care has seen a structured framework evolve to keep pace with the need for ensuring clarity for the different levels of involvement paediatricians have with regard to epilepsy care. The Royal College of Paediatrics has developed a Specialist Interest Module framework to facilitate competences for paediatricians with expertise in epilepsies. This includes a comprehensive curriculum and training for those in training and those specialists who want to develop new skill sets. The British Paediatric Neurology Association also delivers a three tier Paediatric Epilepsy Training (PET) and distance learning course structure which is evidenced based and practical.
      The RCPsych therefore published College Report (CR) 203 [
      Management of epilepsy in adults with intellectual disability. Royal College of Psychiatrists college report CR203.
      2017
      ], proposing a tiered approach to the competency requirements of ID psychiatrists in the management of epilepsy: Bronze, Silver and Gold (Appendix A). The report and the proposed framework has used available good practice guidance in particular those suggested by National Institute of Clinical excellence [

      Epilepsies: diagnosis and management | Guidance and guidelines | NICE [Internet]. Nice.org.uk. 2004 and 2012 [cited 12 September 2018]. Available from: https://www.nice.org.uk/guidance/cg137/chapter/1-guidance#children-young-people-and-adults-with-learning-disabilities-see-also-sections-115-and-117.

      ] criteria to help justify its recommendations. Bronze level represents the minimum standard expected, whilst Gold represents the epileptologist trained and up to date with all epilepsy related issues. The report’s aim is to build a solid foundation that can support care pathways, links with other professionals such as neurologists and epilepsy nurses, raise standards of care delivery and improve outcomes of service delivery to people with ID and epilepsy. This paper feedbacks on the impact of the report and needs of ID psychiatrists as identified through a national survey carried out within six months of its launch.

      2. Methods

      An online survey using SurveyMonkey was circulated to all RCPsych ID Faculty UK members using the RCPsych email network. It was developed by the authors and then reviewed and approved by the RCPsych ID Executive. The survey had 10 questions (S1), covering the areas of competence recommended under the CR203 tiered model. The survey was done 6 months after release of CR203 and was kept open for 6 weeks. A reminder was sent 2 weeks prior closure.
      Analysis of quantitative data was done using SurveyMonkey paid features and Excel Analysis Toolpak, and statistical tests using the R program. The p-values were calculated using the chi-squared test, using the Monte Carlo simulation rather than the standard approach to analyse associations where numbers are low. With the aim of establishing general patterns, in the presence of very low counts (avoiding the multiplication of zero events), non-consultant grades were merged. Statistical analysis was run for the UK mainland nations.
      No ethical permission was required as this was a survey to evaluate attitudes. Further it was to a group of medical practitioners where consent was implicit by returning the survey form. All participants were advised at the start of the survey that participation was voluntary and their replies i.e. data would be anonymized and analyzed. We also used the NHS Health research tool (http://www.hra-decisiontools.org.uk/research/index.html) which helped confirm that no ethics review was needed.

      3. Results

      There were 141 respondents of a possible 332 (as per ID Faculty census and estimates, 2017), the response rate being 42.5%. Five of the respondents worked with a paediatric ID population the rest with adults. Frequency counts suggested variation according to region, and grade of clinical seniority (i.e. trainee or specialist). All grades were equally aware of CR203. There was no difference between pre- and post-2002 consultants. Table 1, Table 2, Table 3, Table 4, Table 5 and findings are summarised here. Statistically significant differences according to grade and region are reported in Table 6.
      Table 1Overall respondent data: grade, region and epilepsy care provision.
      GradeConsultants before 2002Consultants since 2002Higher ID Trainees (ST4-6)Associate SpecialistsStaff gradeOther cliniciansTotal Respondents
      Count376426266141
      % Total26.245.418.41.44.34.3100
      Region

      England - London      		England - South East (exc. London)England - South WestEngland – MidlandsEngland - North EastEngland - North WestWales – South
      Count%TotalCount%TotalCount%TotalCount%TotalCount%TotalCount%TotalCount%Total
      2517.81812.82114.91611.4128.5117.853.5
      Wales – NorthScotland -Scotland - South WestScotland - NorthNorthern IrelandOtherTotal
      Count%TotalCount%TotalCount%TotalCount%TotalCount%TotalCount%TotalCount%Total
      0064.264.221.496.4107.1141100
      % time spent in epilepsy mattersOf total clinical timeOf total CPD
      0%26%13%
      1–10%36%62%
      11–25%23%13%
      26–40%11%7%
      >40%4%5%
      Co-working with other epilepsy professionalsEpilepsy nurse specialist or another nurse/clinician with specialist interest in epilepsy within teamJoint ID psychiatry / epilepsy clinic with local neurology colleaguesJoint transition clinics for epilepsy and ID with paediatricians
      YesNoYesNoYesNo
      Count64771412714127
      % Total45.454.610.090.010.090.0
      Management of epilepsy in patients……referred specifically for epilepsy…referred for mental health / behavioural problem
      ResponseYesNoYesNo
      Count52898160
      % Total36.963.157.442.6
      Table 2Respondents’ awareness of important studies and reports in epilepsy, pertaining to ID.
      Awareness of CR203Awareness of SANAD and its findingsAwareness of NASH and its findingsAwareness of ILAE new seizure classification
      ResponseYesNoYesNoYesNoYesNo
      Count94476279321088655
      % Total66.733.344.056.023.476.661.039.0
      Table 3Practice and confidence of respondents with regards to epilepsy and its interface with ID psychiatry.
      AssessmentConfidence taking a history in a patient presenting with active (or suspicion of) epilepsyConfidence identifying seizure typesConfidence in differentiating AD(H)D / ASD from absence seizuresConfidence in differentiating functional from peri ictal psychosisRoutine consideration of peri-ictal activity and/or AED side-effect when patient with ID and epilepsy presents with behavioural disturbance
      ResponseCount% TotalCount% TotalCount% TotalCount% TotalCount% Total
      Completely disagree2.842.1332.153.542.8
      Somewhat disagree7.81115.6221812.81611.385.7
      Somewhat agree48.96956.7806143.38258.24632.6
      Completely agree40.55725.6365941.83827.08358.9
      InvestigationsConfidence and experience requesting neuroimagingConfidence and experience requesting different EEGs
      Routine consideration of genetic investigations into aetiology of seizure disorderResponseCount% TotalCount% Total
      Completely disagree64.33021.3
      ResponseCount% TotalSomewhat disagree3222.73927.7
      Yes5035.5Somewhat agree5236.93625.6
      No9164.5Completely agree5136.23625.5
      Epilepsy risk assessments

      Response      		Count% Respondents to which statement applies
      Not confident and not applicable to respondent’s practice5438.3
      Confident5236.9
      Respondent follows guidance from SIGN3021.3
      Respondent follows guidance from NICE6948.9
      Respondent follows guidance from ILAE3524.8
      Confident in assessing the need for, and advising and/or prescribing rescue medication7351.8
      Respondent routinely discuss the risk of SUDEP with patients and carers4934.8
      Confident in advising patients and their carers on SUDEP risk6646.8
      ManagementConfidence titrating and withdrawing most AEDs, keeping in mind their licensed approval, safety and side-effect profile, as well as any specific concerns pertaining to special populationsConfidence in treating peri-ictal behavioural disturbance, including psychosisMonitoring of side-effects of AEDs, including routine blood tests, serum levels and where needed specific investigations such as DXA/DEXA bone scansAwareness of non-pharmaceutical management of epilepsy
      Mentioned, in descending order of frequency: vagal nerve stimulation, surgery, ketogenic diet, diet, environmental, aromatherapy, sleep, psychological interventions.
      		Overall confidence managing epilepsy in ID
      ResponseCount% TotalCount% TotalResponseCount% TotalCount% TotalCount% Total
      Completely disagree3021.353.5Yes6848.386615841.2
      Somewhat disagree3424.13625.5
      Somewhat agree4632.66143.3No4351.755398358.8
      Completely agree3122.03927.7
      * Mentioned, in descending order of frequency: vagal nerve stimulation, surgery, ketogenic diet, diet, environmental, aromatherapy, sleep, psychological interventions.
      Table 4Training needs reported by respondents.
      Count% Respondents ticking option
      Recognising a seizure that is not a tonic clonic seizure6546.1
      Semiology6948.9
      Identifying peri-ictal behavioural disturbance and psychiatric-like presentations9970.2
      Management of anti-epileptic medication8661.0
      Understanding and Monitoring side-effects of AEDs7855.3
      SUDEP and its prevention8761.7
      Prescribing / advising on rescue medication7251.1
      Non-pharmaceutical management of epilepsy9869.5
      Risk assessment in epilepsy8661.0
      Table 5Main single theme in each free comment made by respondents (n’ = 44) (Full comments in Appendix C).
      ThemeCount
      Expressing thanks for the survey and/or compliments on CR2035
      Opinions on place of ID psychiatrist in managing epilepsy:4

      3

      5
      • •
        Unavoidable due to behavioural comorbidities, neurology unable to manage that complexity, epilepsy should be an essential part of training, psychiatrists should be competent in that area, and it is essential to keep up to date.
      • •
        Ok for ID psychiatrist to manage epilepsy but not diagnose it, and should co-work with neurology.
      • •
        Inappropriate, on the basis of lack of knowledge and skills (no MRCP); puts patients and doctor at risk; potentially a violation to the Equality Act 2010.
      On CPD:3 5
      • •
        Complaint about difficulty in keeping up-to-date is or expressed concerns about their loss of skill in epilepsy
      • •
        Request for training and CPD
      Practical aspects impacting on epilepsy management: eg removal of examination couches, access to blood tests2
      Disparity of care and institutional discrimination faced by people with ID; stretched neurology services, delays, inability to meet expectations; need for more collaborative work; guidelines for tertiary referrals not being met4
      Comments about own services: close links to neurology / paediatrics to in-team professional with a special interest in epilepsy; own special interest in epilepsy

      Comments about own practice: bearing in mind epilepsy in behavioural disturbance      		8

      2
      Misc: reporting little contact with patients with epilepsy; question about gold standard2 1
      Table 6Statistically significant variations by grade and region.
      1. By grade – 1a In favour of consultants
      GradeCompletely disagreeSomewhat disagreeSomewhat agreeCompletely agreep-value
      Confidence at titrating and withdrawing most AEDs0.08 (borderline)
      Consultant15223426
      Non-Consultant109113
      Confidence naming the most common side-effects of AEDs0.05
      Consultant7174430
      Non-Consultant25233
      Consideration of epilepsy/AED as cause of behavioural disturbance0.04
      Consultant323162
      Non-Consultant041316
      Confidence identifying seizure types0.003
      Consultant3115132
      Non-Consultant010212
      1. By grade – 1b In favour of non-consultants
      Respondents lack confidence in performing epilepsy risk assessments - deemed not applicable to their practicep-value
      GradeAgreedDisagreed0.04
      Consultant4256
      Non-Consultant726
      2. By region – 2a Percentage of clinical time spent by ID clinician on managing epilepsy
      Up to 10%>10%p-value
      London1960.02
      South East England810
      South West England1011
      Midlands78
      Northern England194
      Scotland104
      Wales14
      Northern Ireland63
      2. By region – 2b Patients referred to the ID doctor specifically for epilepsy
      YesNop-value
      London4210.002
      South East England810
      South West England129
      Midlands97
      Northern England518
      Scotland410
      Wales50
      Northern Ireland27
      2. By region – 2c Patients’ epilepsy managed when referred for behavioural disturbance
      YesNop-value
      London8170.0005
      South East England162
      South West England156
      Midlands142
      Northern England914
      Scotland59
      Wales41
      Northern Ireland54
      2. By region – 2d Confidence in titrating AEDs
      RegionCompletely disagreeSomewhat disagreeSomewhat agreeCompletely agreep-value
      London106630.06 (borderline)
      South East England0477
      South West England3576
      Midlands0295
      Northern England5863
      Scotland4433
      Wales0122
      Northern Ireland3150
      2. By region – 2e Awareness of non-pharmacological treatments
      RegionYesNop-value
      London11140.016
      South East England144
      South West England147
      Midlands151
      Northern England1112
      Scotland86
      Wales41
      Northern Ireland45
      2. By region – 2f Confidence with risk assessments and relevance to practice
      Respondents lack confidence in performing epilepsy risk assessments - deemed not applicable to their practicep-value
      RegionDisagreedAgreed0.01
      London520
      South East England117
      South West England1110
      Midlands610
      Northern England1013
      Scotland311
      Wales32
      Northern Ireland09
      2. By region – 2 g Overall confidence in managing epilepsy in patients with ID
      YesNop-value
      London6190.001
      South East England117
      South West England1011
      Midlands115
      Northern England716
      Scotland59
      Wales50
      Northern Ireland18
      Response from all regions of the UK was availed. Seventy five percent of the respondents spent at least some of their clinical time managing epilepsy, with the peak frequency in the 1–10% bracket. A similar significant peak in the 1–10% bracket was found with regards to Continuous Professional Development (CPD) time used for epilepsy by the respondents. Only 15% of respondents spent more than a quarter of their professional job time managing people with epilepsy. Asked about their services, 58% of respondents managed epilepsy in people with ID who had been referred to them for mental disorder and behavioural problems. Around half (45%) worked in a team which included an epilepsy nurse specialist or another professional with specialist interest in epilepsy but only one in 10 joint worked with neurology or paediatrics (Table 1).
      Around one third (37%) saw people with ID referred solely for epilepsy but nearly 60% saw people with epilepsy and ID referred for psychological concerns. Asked about their awareness of important studies, 45% had heard of SANAD and its findings, 23% had heard of the National Audit of Seizure management in Hospitals (NASH) and its findings. Two third were aware of CR203 and 61% the ILAE new classification (Table 2).Asked about their practice, nearly half of the respondents (49%) monitored for side-effects of AEDs, including routine blood tests, serum AED levels, and where needed specific investigations such as DXA bone scans. A third (36%) routinely considered genetic investigations into the aetiology of the seizure disorder. Overall, 41% felt confident managing epilepsy in people with ID.
      When asked to rate their level of confidence using AEDs, only a fifth (22%) of respondents felt fully confident titrating and withdrawing most AEDs, keeping in mind their licensed approval, safety and side-effect profile, as well as any specific concerns pertaining to special populations. Nearly half (45%) lacked confidence, a third (33%) felt somewhat confident. A quarter of respondents felt they could confidently name the most common side-effects of AEDs, while a quarter (23%) felt they could not. The rest (52%) felt somewhat confident.
      Rating their confidence with history-taking for epilepsy in a person with ID, 40% responded to being fully confident and a half (49%) somewhat confident. In terms of semiology, only a quarter (26%) was fully confident in identifying seizure types while 56% felt somewhat confident, and 18% lacked confidence. Almost the same percentages were reported for confidence at differentiating functional from peri-ictal psychosis. A larger percentage of respondents (42%) were fully confident at differentiating Attention Deficit Disorder (inattentive type) and Autism presentations from absence seizures with 43% being somewhat confident, and 15% lacking confidence. Regarding the treatment of peri-ictal behavioural disturbance, 28% felt fully confident, 43% somewhat confident, 29% lacked confidence. Regarding behavioural disturbance in people with ID and epilepsy, 59% always consider the possibility that this may stem from epilepsy, peri-ictal activity and/or AEDs. A third were not sure if they do and nearly one in ten (8%) do not. A third (36%) had confidence and experience in requesting neuro-imaging and a similar third (36%) answered ‘somewhat agree’. Self-ratings of confidence and experience requesting different types of EEGs were equally distributed. Sixty one percent were aware of non-pharmaceutical treatments for epilepsy in people with ID, of whom 75% gave specific examples including vagal nerve stimulation, ketogenic diet,environmental considerations such as bright lights, aromatherapy, sleep and psychological interventions (Table 3).
      Regarding risk assessments in people with ID and epilepsy, 38% were not confident at carrying any of them out. The remainder 62% identified those that applied to them. A third (37%) they were confident at carrying out all risk assessments. Half of the respondents (52%) were confident at assessing the need for prescribing rescue medication. Forty seven percent felt confident of advising patients and carers on SUDEP risk. A third (35%) routinely discussed SUDEP at least once a year. Around half (49%) followed guidance from NICE, A quarter (25%) from ILAE and a fifth (21%) from SIGN (Table 3).
      A range of training needs were identified (Table 4) with the principal areas being education on psychiatric and behavior interface, non-pharmacological management methods and SUDEP issues. Nearly half (46%) of respondents requested training in seizure recognition (excluding tonic clonic type), 49% in semiology, 51% on prescribing/advising on rescue medication, 55% in understanding and monitoring side-effects of AEDs, 61% on managing AEDs, 61% in risk assessment, 62% on SUDEP and its prevention, 70% on non-pharmacological management of epilepsy, and 70% in identifying peri-ictal behavioural disturbance and psychiatric-like presentations of epileptiform activity.
      The written comments were grouped based on recurrent themes identified. The key themes were an appreciation for creation of a framework proposed in CR203, opinion on place and role of the ID psychiatrist in epilepsy care, training and CPD needs, practical challenges and resources needed for care delivery (Table 5).
      There was no statistically significant regional difference in identifying seizure type, differential diagnosis, AED side-effects knowledge or provision of joint clinics.
      There is significant regional disparity in terms of service provision, other clinician knowledge and skills, with South East & South West England, Wales and the Midlands showing greater involvement in epilepsy than London, Northern England, Scotland and Northern Ireland (Table 6).

      4. Discussion

      This is a cross-sectional study capturing over 40% of the ID psychiatric specialty in the UK. The risk of false positive associations in multiple comparisons could be reduced by lowering the p-value threshold of 0.05, or using the Bonferroni correction, although it is acceptable to present the current findings as a subset of planned comparisons.
      While ID psychiatrists have an interest in epilepsy irrespective of region and grade there is divergence of opinion as to the role of the ID psychiatrist. The proposed CR203 Bronze standards are frequently not met. Risk assessments, especially of SUDEP, are not readily supported. The provision of structured training in epilepsy matters is inadequate.
      The CR203 was developed principally for psychiatrists who work with adults with ID however it was recognised that there were good practices points for all psychiatrists who work with people with ID and epilepsy across the age divide particularly those who work with children and ID and epilepsy as they approach transition to adult services.

      4.1 Implications for training

      Providing Continuous Professional Development (CPD) in epilepsy matters must be a priority for RCPsych, and possibly the ILAE. This must be accompanied by at least a Bronze level achievement during higher training. There is ongoing discussion with the General Medical Council to change the curriculum for accreditation for the completion of specialist training in the speciality of ID Psychiatry. There has been little need for psychiatrists in large cities such as London to develop expertise in the management of epilepsy due to the presence of tertiary centres managing epilepsy which has had a unforeseen impact on training. It is important that trainees in such areas be encouraged to attend specialist neurological centres managing epilepsy, to be exposed to this educational opportunity and achieve appropriate competencies.

      4.2 Implications for clinical practice

      Recent national reports such as the Learning Disability Mortality Review (LeDeR) have highlighted that epilepsy features in the top three conditions associated with premature death in people with ID [

      LeDeR annual report 2016-17. Available http://www.bristol.ac.uk/university/media/press/2018/leder-annual-report-final.pdf (Accessed 15/07/2018).

      ]. The rates of preventable emergency department attendance and admissions are up to five times higher in people with ID than general population principal reason being seizures (40%) [
      • Glover G.
      • Evison F.
      Hospital admissions that should not happen. Improving health and lives: learning Disabilities Observatory.
      2013
      https://www.improvinghealthandlives.org.uk/publications/1169
      ].
      While not all ID psychiatrists may wish to develop a special interest in epilepsy, there is a requirement that all be basically competent due to the significant over representation of epilepsy in people with ID. Epilepsy in people with ID is increasingly considered a neurodevelopmental condition as it presents with other physical and psychiatric co-morbidity. There are deepening links to genetic aberrations and syndromes. Epilepsy and its treatment have a close association with mental illness and challenging behaviour. A lack of basic understanding of this aspect of medicine can predispose to adverse or poor outcomes in the form of over prescribing, lack of treatment response and other forms of harm. In particular concerns exist that over 50% of clinicians were not undertaking basic risk assessments and counselling such as SUDEP which forms the bedrock of safety especially in this vulnerable population which has major over representation in statistics of treatment resistance and premature mortality. There is evidence to suggest that regular risk assessments in high risk populations can mitigate adverse outcomes such as SUDEP [
      • Shankar R.
      • Donner E.J.
      • McLean B.
      • Nashef L.
      • Tomson T.
      Sudden unexpected death in epilepsy (SUDEP): what every neurologist should know.
      Epileptic Disord. 2017; 19: 1-9
      ,
      • Young C.
      • Shankar R.
      • Henley W.
      • Rose A.
      • Cheatle K.
      Sander JW SUDEP and seizure safety communication: assessing if people hear and act.
      Epilepsy Behav. 2018; 86: 200-203
      ]. Thus given the ambiguity of treatment outcomes ensuring safety should be an essential requirement in clinical practice for any clinician involved with a person with ID and epilepsy.

      4.3 Implications for policy

      Whatever the model of service delivery, the patient must be at the centre of service design. There is a strong argument that, given the complexity of epilepsy care in ID, it be ‘everyone’s business’, rather than ‘someone’s business’, among care providers15. This has implications for commissioning in terms of supporting professionals to access training, making time available in job plans, providing suitable clinical spaces and availability of investigations. There needs to be clarity on how a service is set up in a region with clear pathways emerging from primary care and moving towards specialist tertiary care.
      The impact of CR203 when implemented can be assessed by a multifactorial approach which includes views of clinicians and service users. In particular local improvements in satisfaction of people with ID and epilepsy with regard to access to services and possibly reduction of objective measures such as death rates and ED admission could highlight effect.
      There are certain issues which have not been explored in the survey which could have a bearing on the current service delivery and thus the implementation of CR203. Casual observation of the presented data suggests regional disparity appears correlated with population density and proximity of teaching hospitals with large neurology centres. A further issue which would merit future consideration would be the manner in which commissioning of community ID services happen.

      5. Conclusion

      Over the past 10 years the UK has witnessed changes in policy to try and address the health inequalities of people with ID [
      Valuing people now: a new three-year strategy for people with learning disabilities : department of Health - Publications [Internet].
      2009
      ,

      LeDeR annual report 2016-17. Available http://www.bristol.ac.uk/university/media/press/2018/leder-annual-report-final.pdf (Accessed 15/07/2018).

      ,
      • Glover G.
      • Evison F.
      Hospital admissions that should not happen. Improving health and lives: learning Disabilities Observatory.
      2013
      https://www.improvinghealthandlives.org.uk/publications/1169
      ,
      The improving health and lives (IHaL). Learning disabilities observatory for England. National development team for inclusion (NDTi), Public Health England. October.
      2012
      https://www.ndti.org.uk/our-work/our-projects/peoples-health/improving-health-and-lives-ihal
      ,
      Stopping over medication of people with learning disability, autism, or both. NHS England.
      2016
      https://www.england.nhs.uk/wp-content/uploads/2017/07/stomp-gp-prescribing-v17.pdf
      ]. There is a requirement for patient-centred care and reasonable adjustments, and greater vigilance in prescribing for mental health and challenging behaviour in ID. This set of skills certainly sits within the remit of the ID psychiatrist.

      Conflict of interests

      GL, WH and RW: none. RS has received institutional, research support and personal fees from LivaNova, UCB, Eisai, Special Products, Bial and Desitin, outside this work. He is a contributor and author in the development of the SUDEP and Seizure Safety Checklist, working with SUDEP Action and the e-app EpSMon.

      Acknowledgements

      The Royal College of Psychiatrists working committee for Intellectual Disability and epilepsy for developing the College Report (CR) 203 which was fundamental to the project and for reviewing and supporting the survey.
      Mrs Kitti KottaszCommittee Manager Royal College of Psychiatrists for facilitating the dissemination of the survey
      Professor Mike Kerr for proposing the Bronze, Silver and Gold framework of competency which was described in the CR203

      Appendix A. Bronze, Silver, Gold standards from CR203 [
      Management of epilepsy in adults with intellectual disability. Royal College of Psychiatrists college report CR203.
      2017
      ]

      Tabled 1
      Bronze

      All psychiatrists working with people with ID should have a ‘Bronze’ level of skills. We recognise that these psychiatrists may or may not provide direct care for epilepsy, so the NICE quality standards may not all apply. However, they should still be familiar with the content of the guidelines and quality standards, or alternatively follow SIGN recommendations if appropriate.

      At Bronze level, the psychiatrist should have the following competencies:
      • •
        Be able to diagnose, assess and manage medication of epilepsy to a reasonable standard. This includes knowledge of the diagnostic process of epilepsy and non-epileptic attack disorder (NEAD); an understanding of investigations relevant to the condition; psychiatric side-effects of AEDs; and the psychiatric manifestations of epilepsy, including an appreciation of the associations between challenging behaviour, epilepsy and ID.
      • •
        Understand the precipitating, perpetuating, predisposing and protective factors for epilepsy in a person with ID.
      • •
        Know the risks associated with epilepsy and be able to complete and scrutinise risk assessments to ensure that their service delivers on mitigating SUDEP, as well as social and environmental risks.
      • •
        Understand epilepsy and its impact on psychiatric illness and behaviour.
      • •
        Be aware of AEDs and their interactions with other drugs (psychiatric drugs in particular).
      • •
        Ensure that risks are identified and appropriately mitigated, including, for example, that a rescue medication protocol is in place if necessary.
      • •
        Be familiar with local or regional pathway for epilepsy, either in general or specific to ID, including relevant clinicians in neurology or other epilepsy services, and the local area epileptologist.
      • •
        Be able to lead on a management level (although there will be overlap with other clinical staff, particularly nursing) to provide holistic and safe care.
      • •
        Be familiar with the best interests process for treatment of those who lack capacity, and the use of restrictive interventions as part of epilepsy management (helmets, braces, holds) to prevent self-injury.
      • •
        Lead on multidisciplinary team care planning, with epilepsy being part of a wider health plan with input into annual health checks, hospital passport etc.
      Silver

      At Silver level, psychiatrists will be much more familiar with the specific content of the NICE and SIGN guidelines, as they will be managing epilepsy directly with the back-up of a neurology service or other specialist epilepsy service with which they have close links, as well as having access to services such as an epilepsy liaison nurse and appropriate investigations.

      At this level, the psychiatrist should be able to deliver all Bronze level requirements, in addition to the following:
      • •
        Be able to diagnose new epilepsy.
      • •
        Initiate, withdraw and titrate medication.
      • •
        Diagnose, address and treat any associated mental illness or challenging behaviour occurring alongside the epilepsy, by managing both the AEDs and psychiatric treatments.
      • •
        Manage SUDEP discussions with patients and carers, as well as risk mitigation.
      Gold

      At Gold level, psychiatrists are likely to work very closely with, if not alongside, tertiary care specialists. They will have a level of knowledge and skills about epilepsy which goes beyond the NICE or SIGN guidelines and will be able to manage all aspects of epilepsy diagnosis and management. All NICE quality standards will be applicable, and these psychiatrists and their services are likely to be involved in education and standard setting for people with ID and epilepsy at a national level.

      At Gold level, the psychiatrist will practise all Bronze and Silver requirements, as well as the following:
      • •
        Identify and manage specialist conditions, including epileptic encephalopathy.
      • •
        Dedicate a significant part of their clinical work and CPD activity to epilepsy care.
      • •
        Support referral for epilepsy surgery assessment, including being able to refer patients for VNS or other specific epilepsy surgery.
      • •
        Review complex epilepsy in patients with autism and/or specific genetic conditions.

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      Article info

      Publication history

      Published online: November 14, 2018
      Accepted: November 1, 2018
      Received in revised form: October 30, 2018
      Received: September 22, 2018

      Identification

      DOI: https://doi.org/10.1016/j.seizure.2018.11.001

      Copyright

      © 2018 British Epilepsy Association. Published by Elsevier Ltd.

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