The transition of young people with epilepsy from paediatric to adult ...

Policy Title:Executive Summary:Supersedes:Description ofAmendment(s):Guidelines for the transition of young people with epilepsyfrom paediatric to adult careThis document outlines the pathway of transition forchildren with epilepsy into the adult setting. The transitionprocess encompasses the planning, education, nurturing,support and organisation required for the young personand their family to move on to adult services at a pacetailored to the individual child. Responsibilities and timingsfor the stages of transition are identified.No previous guidelineNo amendments necessary after the consultation periodThis policy will impact on: The Children’s unit, Multi-disciplinary team servies,Adult services.Financial Implications: Non KnownPolicy Area: Children’s Services DocumentReference:Version Number: 1 Effective Date: March 2010Issued By: Women’s & Review Date: Feb 2013Children’s ServicesAuthors: F. Skinner ImpactAssessment Date:Consultation Phase:Director Women andChildren’sMr VHall…………………..Associate DirectorMrs GHopps……………….Received forinformation:APPROVAL RECORDCommittees / GroupPaediatricians, Children’sNurses, AssociateDirector W&C BU, AdultNeurologist, Adultepilepsy nurse specialistDate28.1.10 – 11.2.10Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Guidelines for thetransition of young peoplewith epilepsy frompaediatric to adult careSafe, Effective and Efficient Specialist Acute HealthcareChairman: Kathy CowellChief Executive: John WilbrahamGuidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

IntroductionThis document outlines the pathway of transition for children with epilepsy into theadult setting. The transition process encompasses the planning, education, nurturing,support and organisation required for the young person and their family to move onto adult services at a pace tailored to the individual child.Definition of TransitionTransition can be defined as ‘a purposeful, planned process that addresses themedical, psychosocial and educational/vocational needs of adolescents and youngadults with chronic physical and medical conditions as they move from child-centredto adult-oriented health care systems (Blum et al, 1993, cited by DH/Child Health andMaternity Services, 2006).ResponsibilitiesChildren with epilepsy in this trust are cared for primarily by a paediatrician with aspecial interest in epilepsy, and an epilepsy nurse. Referrals are made to the visitingpaediatric neurologist from Manchester Children’s Hospital if this is warranted.Many of those with epilepsy have further complications, bringing them under theumbrella of ‘epilepsy plus’. These children with more complex needs may alsowarrant the involvement of, for example, the visiting neurologist, the ChildDevelopment Centre, behavioural nurses, the CAMHs team, physiotherapists,occupational therapists, speech therapists, educational psychologists.Therefore transition services are multidisciplinary. They must be undertaken incollaboration with the young people involved and their families.When transition should beginThe children with ‘straightforward epilepsy’ are transferred to adult services aged 16.Those with learning difficulties are transferred aged 19.There are however two main stages to the transition process. For the child withstraightforward epilepsy these are:The Early Stage (13-14 years)The child and their family should be introduced to the idea of transition to adult care,and the need for the young person to develop their autonomy at the same time beingsupported by the family. The young person should become aware of their own healthneeds and care needs, and the full implications of their epilepsy. An assessment ofthe young person’s level of understanding is as important as providing informationand education about services available in the adult health care system. The conceptof becoming a professional on their own should be gradually introduced in order togive the young person and their family time to adjust to this change. The youngperson should practise their skills, gather information and begin to set goals forparticipating in their own care.Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Final Stage (15-16 years)By now the young person and their family should be feeling confident about leavingthe paediatric system, and the young person should have a considerable degree ofautonomy over their care. They should be aware of their own healthcare needs andhow best to access support, or seek advice and further education if required.For the child with learning difficulties, the process will begin approximately two yearslater, and how much autonomy the child can be expected to have will depend on theseverity of their difficulties.Six key areas have been identified providing the aims and subjects for discussionthroughout the transition period. These are:-Self advocacyIndependent health care behaviourSexual healthPsycho-social supportEducational and vocational planningHealth and lifestyleAuditThe guidelines will be audited in line with the KPI’s identified on an annual basis bythe epilepsy nurse specialist and reported to the clinical governance group andclinical manager and lead. Any action plans developed from this audit will be agreedby the clinical lead consultant for paediatric epilepsy with an annual review ofprogress.Key Performance Indicators1. Young people identified as requiring commencement of the transition process willhave a documented meeting with their key worker.2. Successful transition will be completed by the age of 16/19 years as appropriate tothat individual child.3. Patients will feel fully prepared to move into the adult setting by the end oftransition.ReferencesDH/Child Health and Maternity Services (2006) Transition: getting it right for youngpeople. Improving the transition of young people with long term conditions fromchildren’s to adult health services. Department of Health.BibliographyRoyal College of Nursing (2004) Adolescent Transition Care. Guidance for nursingstaff.Paone, M. Youth Transition Services. British Columbia’s Children’s HospitalGuidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Interdisciplinary transition planning checklist and evidence record for:NAME:DOB:HOSP. NO:ADDRESS:CONSULTANT:NAMED NURSE:G.P:EDUCATION (SCHOOL, TEACHER, SENCO etc):SOCIAL WORKER:OTHER MULTIDISCIPLINARY MEMBERS INVOLVED:Early stage transitionStart date:Final stage transitionStart date:Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

AppendixGuidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Early Stage TransitionSelf-advocacyEducate …………. in describing their health condition.Encourage …………. to ask questions.Encourage parents to participate.Action:Ensure ……….. has information leaflets relevant to condition, and encourage todiscuss and describe their condition verbally.Evidence:…………. was able to give a definition of epilepsy, and describe the type of seizures….. has.Other evidence:Signatures:Date:Independent health care behavioursDiscuss the medications that are required daily.Check that ………….. understand’s issues around compliance.Ensure ………… is able to seek help/ understands the use of Medical AlertID.Action:Provide information leaflets on the specific medication.Arrange a meeting with the pharmacist if ………….. requires this.Evidence:………….. was able to identify their medication and when they take it.………….. understands what may happen if they do not take their medication.………….. is aware of informing those …… is with, about ……. condition if it isappropriate.Other evidence:Signatures:Date:Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Sexual healthDiscuss puberty changes, and how this can sometimes lead to an increase inseizures.Ensure ………… and their parents know where to get information aboutpuberty, sex and sexuality.Action:Provide……………. with leaflets specifically aimed at young adults addressing sexand sexuality.For girls, provide information on the menstrual cycle and how this can sometimesaffect their epilepsy.Evidence:……………. has discussed the above issues.……………. is aware the menstrual cycle may affect her seizure frequency.Other evidence:Signatures:Date:Psychosocial supportProvide parents with the opportunity to discuss their feelings about loss ofcontrol over their child’s condition, concerns about the future and increasingthe adolescents independence.Talk to …………… about social activities, friends and supportive relationshipsthey have.Encourage .................. to join a club at school, or a social group.Action:Hold a frank discussion with …………. and his/her parents addressing these issues.Discuss how epilepsy should not be a barrier to an active social life.Evidence:................... is aware that it is important to have support from those around themthroughout their lives when possible..................... belongs to clubs/ groups.Other evidence:Signatures:Date:Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Educational and vocational planningTalk about what ………………’s responsibilities are at home.Discuss any restrictions, either real or imagined, that affect ……………’seducation and recreational activites.Discuss how the Connexions team can help.Talk about possible career plans and ideas.Action:Discuss the importance of taking responsibility for things, eg. chores within the home.Discuss hobbies …………… has and ensure …………. has the sport and leisurebooklet.Ask what subjects……………. would like to take at school and if they have anythoughts on where this may lead.Discuss with the school nurse if there are any concerns in school.Ensure .................... has linked up with the Connexions team.Evidence:…………….. leads an active role within the family.…………….. and his/her family are happy that they are receiving the support that isrequired at school, and fulfilling his/her aims and goals........................ knows who to speak to regarding career advice and has feasibleideas on their future career.Other evidence:Signatures:Date:Health and LifestyleDiscuss issues around smoking, alcohol and street drugs.Discuss what the impact of the above behaviours can mean for seizurefrequency.Action:Provide information leaflets on the above behaviours.Evidence:…………….. is able to explain what may happen if they indulge in any of the above,and what they can do to keep themselves at minimal risk.Other evidence:Signatures:Date:Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Final Stage TransitionSelf-advocacyExplain all the available adult care options.Provide details of the adult care providers and explain the differencesbetween paediatric and adult care.Assist ……………….. and their family in choosing adult care providers.Make sure …………… knows how to access information about their epilepsy,eg, through support groups, internet, library, epilepsy charity organisations.Action:Ensure referrals are made to the relevant care providers who will take over the care.Provide ………….. with postal addresses, web addresses, and telephone numbers ofthe organisations they can contact if they do not already have them.Evidence:………………. has chosen and is happy with adult care providers.………………. acknowledges the addresses, and numbers provided and understandswhat they are for.Other evidence:Signatures:Date:Independent health care behaviour……………. maintains a seizure diary to keep track of seizures, has healthinformation, can make own appointments, can obtain own medication, awareof health providers (including names and telephone numbers), and knowswhen to get emergency help.……………. meets with adult consultant/GP/ specialist nurse beforediscontinuing paediatric care.Action:Ensure ………………. has been provided with a seizure diaryDiscuss how the appointment system works.Can describe who and where to obtain repeat prescriptions from.Facilitate a meeting between ……………… and adult care givers.Evidence:……………… is visibly keeping a seizure diary.……………… has met with adult care givers......................... has obtained more medication when theirs has run out.Other Evidence:Signatures:Date:Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Sexual HealthDiscuss with ……………… issues surrounding sex, including sexualvulnerability.Discuss with ........................ issues surrounding contraception, effects ofmedication on the unborn baby.Action:Arrange a meeting with ....................... on an individual basis if required.Provide written information on sexual health, and on drug interactions withcontraceptives, and risks during pregnancy.Evidence:…………….. has participated in a conversation on sexual health....................... is able to discuss their medication and its interactions with othermedications/ during pregnancy.Other Evidence:Signatures:Date:Psycho-social supportEncourage ………………… and their parents to set positive goals.Identify if there are any issues with regard to moving away from home.Ensure ………………. is comfortable in dealing with all safety issues arisingfrom the nature of their condition.Action:Discuss with ……………… if he/she is happy with the level of support they have.Ensure ………………. has written information on safety issues.Evidence:………………… has a supportive network of friends and family.Other evidence:Signatures:Date:Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Educational and vocational planningDiscuss employment options- what kind of work does …………….. want todo? Are there any restrictions?Discuss the Disability Discrimination Act and how it affects employers etc.Discuss the implications if ………………….. wishes to go to college.Action:Discuss employment ideas and inform ………………… of any potential problems withthis.Provide written information on the Disability Discrimination Act.Reiterate safety issues with regard to lifestyle at college.Evidence:…………………. is able to apply for jobs, courses that he/she wishes too, knowingthe limitations of his/her condition.Other Evidence:Signatures:Date:Health and LifestyleGive ………………. opportunities to discuss feelings of low mood, feelings ofdepression or suicidal thoughts.Ask ……………… who they would contact for help and advice if they sufferthe above problems.Discuss plans for driving, ensure ............................ understands the rules andconditions.Action:Provide information booklet on rules for driving/ seizures.Provide helpline numbers.Evidence:……………….. can produce name and numbers for those he/she would contact ifneeded........................... is able to explain the rules around driving and obtaining a licence.Other Evidence:Signatures:Date:Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013

Appendix 2 –Equality and Human Rights Policy Screening ToolPolicy Title: Guidelines for the transition of young peoplewith epilepsy from paediatric to adult careDirectorate: Women & Children’sbusiness unitName of person/s auditing / authoring policy: Felicity Skinner – Paediatric Epilepsy SpecialistNursePolicy Content:For each of the following check whether the policy under consideration is sensitive to people of a different age,ethnicity, gender, disability, religion or belief, and sexual orientation?The checklist below will help you to identify any strengths and weaknesses of the policy and to check whether it iscompliant with equality legislation.1. Check for DIRECT discrimination against any minority group of PATIENTS:Question: Does the policy contain any statements whichmay disadvantage people from the following groups?ResponseActionrequiredResourceimplicationYes No Yes No Yes No1.0 Age? X1.1 Gender (Male, Female and Transsexual)? X1.2 Learning Difficulties / Disability or Cognitive Impairment? X1.3 Mental Health Need? X1.4 Sensory Impairment? X1.5 Physical Disability? X1.6 Race or Ethnicity? X1.7 Religious Belief? X1.8 Sexual Orientation? X2. Check for DIRECT discrimination against any minority group relating to EMPLOYEES:Question: Does the policy contain any statements whichmay disadvantage employees or potential employeesfrom any of the following groups?ResponseActionrequiredResourceimplicationYes No Yes No Yes No2.0 Age? X2.1 Gender (Male, Female and Transsexual)? X2.2 Learning Difficulties / Disability or Cognitive Impairment? X2.3 Mental Health Need? X2.4 Sensory Impairment? X2.5 Physical Disability? X2.6 Race or Ethnicity? X2.7 Religious Belief? X2.8 Sexual Orientation? XTOTAL NUMBER OF ITEMS ANSWERED ‘YES’ INDICATING DIRECT DISCRIMINATION = 0Guidelines for the transition of young people with epilepsy from paediatric to adult care.F. Skinner Paediatric epilepsy nurse specialist, East Cheshire NHS TrustMarch 2010, review February 2013