Care Coordination / Care Programme Approach Learning Disability PGN Management of Epilepsy in Learning Disability (LD) Planned and Urgent Care V03

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1 Care Coordination / Care Programme Approach Learning Disability PGN Management of Epilepsy in Learning Disability (LD) Planned and Urgent Care V03 V03 issued Issue 1 Dec 14 Planned review December 2017 CC-CPA-PGN-06.1 Part of NTW(C)20 CC/CPA policy Learning Disabilities Author/Designation Responsible Officer / Designation Julie Kelly Epilepsy Specialist Nurse, LD Julie Bates. Community Clinical Manager Planned Care Contents Section Description Page No 1 Introduction 1 2 Diagnosis of Epilepsy 1 3 Rescue Medication 2 4 Sudden Unexpected Death in Epilepsy Patients (SUDEP) 3 5 Management of Epilepsy in Adults who have a Learning Disability 6 Management of Epilepsy in Children 5 7 Staff Training 5 8 Role of Learning Disability/Epilepsy Specialist Nurse 6 9 Management of Epilepsy in Inpatient Areas 6 10 Management of Epilepsy for Community Teams 7 11 Audit 8 Appendix 1 Epilepsy Checklist Appendix listed separate to PGN 3 Details of Learning Disability/Specialist Epilepsy Nurse currently in post: o Julie Kelly o Mobile: o o Tel: Northumberland, Tyne and Wear NHS Foundation Trust

2 1 INTRODUCTION 1.1 In line with current NICE 2012 guidelines, suggests epilepsy is: People with epilepsy have recurrent bursts of abnormal electrical activity in the brain. This change in the brain activity leads to an epileptic seizure. An epileptic seizure can take a number of different forms; it can cause changes in a person s body movements, awareness, behaviour, emotions or senses. Usually a seizure lasts for only a few seconds or minutes and then the brain activity returns to normal. Epilepsy is not a single condition. In the NICE guideline the term the epilepsies is used to show that not just one but many brain conditions can result in recurrent epileptic seizures. Some epilepsies start in childhood, some start in young people or in adults, while others start in older people. Some last for only a short time and others last for a lifetime. Some have little impact on a person s life and others can have a major effect on a person s ability to function and live their daily life. 1.2 This Practice Guidance Note (PGN) is intended for all staff working in the Learning Disability - Planned and Urgent Care of Northumberland, Tyne and Wear NHS Foundation Trust (the Trust/NTW). 1.3 The Practice Guidance Note aims to ensure safe clinical practice with regard to management of epilepsy for children and adults who have a learning disability and are using services provided by the Trust. 1.4 The guidance given in this PGN is based on National Institute for Care and Excellence (NICE) Clinical Guideline. The epilepsies, the diagnosis and management of the epilepsies in primary and secondary care. 1.5 The guidance is based on the underpinning principle that people with epilepsy who have a learning disability should receive the same support and care for their epilepsy as the general population and in addition, should receive support from specialist learning disability services. 2 Diagnosis of Epilepsy 2.1 All individuals with a recent onset suspected seizure should have been seen by a specialist. This is to ensure precise and early diagnosis and initiation of treatment as appropriate to their needs. 2.2 For adults a specialist is defined as a Medical Practitioner with training and expertise in epilepsy. For children a specialist is defined as a Paediatrician with training and expertise in epilepsy. 2.3 A detailed history should be taken from the individual and an eye witness account where possible. This will help to determine whether or not an epileptic seizure is likely to have occurred. Other investigations which may be carried out in order to determine this may be physical examination, cardiac, neurological and mental status. The decision as to whether an epileptic seizure has occurred will be based on the combination of the description of the attack and different symptoms found through investigation. Northumberland, Tyne and Wear NHS Foundation Trust 1

3 2.4 Essential information on how to recognize a seizure, First Aid, and the importance of reporting further attacks should be provided to a person who has experienced a possible first seizure and their family / carers. This information should be provided whilst the individual is awaiting diagnosis. 3 Rescue Medication: Prolonged or repeated seizures and convulsive status Epilepticus NICE 2012 First line treatment for children, young people and adults with prolonged or repeated generalised, convulsive (tonic-clonic, tonic or clonic) seizures in the community. 3.1 Only prescribe Buccal Midazolam or rectal Diazepam for the use in the community for children, young people and adults who have had a previous episode of prolonged or serial convulsive seizures. 3.2 Give immediate emergency care and treatment to children, young people and adults who have prolonged (lasting 5 minutes or more) or repeated (three or more in an hour) convulsive seizures in the community. 3.3 Administer rectal Diazepam if preferred or if Buccal Midazolam is not available. 3.4 Depending on response to treatment, the person s situation and any personalised care plan, call an ambulance, particularly if the seizure is continuing 5 minutes after the emergency medication has been administered, if the person has a history of frequent episodes of serial seizures or has convulsive status epilepticus, or this is the first episode requiring emergency treatment or there are concerns or difficulties monitoring the person s airway, breathing, circulation or other vital signs. 3.5 It has been agreed that no PGN will be written for the use of rectal Diazepam, due to many individuals being prescribed Midazolam now. It still stands that the Epilepsy Specialist Nurse will offer advice or care planning for the use of rectal Diazepam, or training if required. See contact details on front cover of PGN. 3.6 All individuals who have prolonged convulsive seizures or serial seizures, should receive urgent care and treatment. 3.7 For many individuals, Buccal Midazolam is a more acceptable rescue medication and is easier to administer than rectal Diazepam. 3.8 Buccal Midazolam must only be administered in accordance with Practice Guidance Note within the Trust s policy NTW(C)38- Pharmacological Therapy, PPT-PGN-12 Buccal administration of Midazolam 3.9 Queries in relation to the administration of any rescue medication can be directed to the Learning Disability Specialist Epilepsy Nurse. Northumberland, Tyne and Wear NHS Foundation Trust 2

4 4 Sudden Unexpected Death in Epilepsy Patients (SUDEP) 4.1 SUDEP is the sudden unexpected, witnessed or unwitnessed, non traumatic and non drowning death in patients with epilepsy, with or without evidence of a seizure and excluding documented status epilepticus in which post mortem examination does not reveal a toxicological or anatomic cause of epilepsy. 4.2 The risk of SUDEP can be minimized by optimizing seizure control and being aware of the potential consequences of nocturnal seizures. 4.3 There should be tailored information and discussion about each individual s relative risk of SUDEP. People who have epilepsy and learning disabilities have a higher risk of unexpected death (SUDEP). Health care professionals should discuss these risks with them and their advocates, family or carers. Potential safety problems should be assessed. 4.4 Where families/carers have been affected by SUDEP, they should have the opportunity to discuss the death of their relative and be given the opportunity to be referred to bereavement counseling and / or SUDEP Support Group. 4.5 Information with regard to bereavement counseling and SUDEP Support Groups is included in the Epilepsy Resource Pack provided by the Epilepsy Workstream Group. 4.6 Contact details for Epilepsy Bereaved: Epilepsy Bereaved PO Box 112 Wantage OXFORDSHIRE OX12 8XT Tel: Web address: 5 Management of Epilepsy in Adults who have a Learning Disability NICE Epilepsy can be difficult to diagnose in a person with learning disabilities. When assessing a person with learning disabilities, the specialist should make sure that they take a full history. They should also ask any witness what happened during the person s seizure, and if possible get other information about the seizure such as video recordings, to help them with the diagnosis. When necessary, health care professionals should provide information and advice to help people to describe clearly and accurately what they see happening when a person is having a seizure. 5.2 For children and young people with a learning disability, investigations should be carried out to try and find out the cause of epilepsy. Northumberland, Tyne and Wear NHS Foundation Trust 3

5 5.3 The management and treatment of epilepsy for a person who has a learning disability should be undertaken by a specialist working within a multi-disciplinary team (MDT). This could be: General Practitioner Neurologist Psychiatrist Specialist Nurse 5.4 All adults with epilepsy should have a comprehensive Care Plan that is agreed between the individual, their family/carers and all members of the MDT. The Care Plan should include recommendations on how to support the individual s epilepsy and agreed care plan and a risk management plan and should include lifestyle issues as well as medical issues, taking full account of race, cultural and specific needs. 5.5 Anti-epileptic drug treatment (AED) should be individualized according to type of epilepsy, seizure type, co-medication and co-morbidity. 5.6 All individuals who have epilepsy and a learning disability should have a Risk Assessment including: Bathing and Showering Preparing Food Using Electrical Equipment Managing Prolonged or Serial Seizures The Impact of Epilepsy in Social Settings SUDEP The Suitability of Independent Living 5.7 People who have epilepsy and a learning disability should be provided with information about their epilepsy, care and treatment in a format which is accessible. 5.8 All individuals who have epilepsy should have a regular structured review. For adults this should be carried out at least yearly, depending on how well the epilepsy is controlled and/or presence of specific lifestyle issues. 5.9 If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, individuals should be referred to a Neurologist/Epilepsy Specialist for further assessment. Examples of this are: If the epilepsy is not controlled with medication within two years Northumberland, Tyne and Wear NHS Foundation Trust 4

6 Management is unsuccessful after two AED medications There is diagnostic doubt as to the nature of the seizure There is psychological and/or psychiatric co morbidity Person is at risk of unacceptable side effects from medication 6 Management of Epilepsy in Children 6.1 Most children diagnosed with epilepsy will see a Paediatrician and remain within hospital based paediatric services until they reach adulthood. 6.2 The diagnosis of epilepsy in children should be made by a Paediatric Neurologist or a Paediatrician with expertise in childhood epilepsy. 6.3 As epilepsy has a significant impact on a child s ability to learn and participate fully in educational activities, it is vital that good links are forged with educational services. 6.4 Each child who has epilepsy should have own individual management plan agreed with the family and members of the MDT. 6.5 Each child who has epilepsy should have a regular structured review. This should be at least yearly depending on how well the epilepsy is controlled and/or presence of specific lifestyle issues. 6.6 The transition from paediatric to adult care is a difficult time and should be planned for carefully and in advance of the transition being made. 7 Staff Training 7.1 The Epilepsy Workstream Group will arrange a rolling programme of Epilepsy and SUDEP Awareness training. This will be included in the Trust s Training Prospectus and can be accessed through the normal channels. 7.2 The Epilepsy Workstream Group will arrange a rolling programme of Buccal Midazolam Administration training. This will be included in the Trust s Training Prospectus and can be accessed through the normal channels. 7.3 The Epilepsy Workstream Group a team of trainers, have the required skills and knowledge to deliver the above training programmes. 7.4 The Epilepsy Workstream Group will review all training programmes at least yearly but more often if required. 7.5 All direct care staff working in in-patient, community, working in the Learning Disability Planned and Urgent Care will have regular Epilepsy/SUDEP Awareness training. It is the responsibility of the Team Leader/Manager to ensure all staff receives this training. 7.6 Qualified nursing staff in in-patient areas will ensure they feel competent to administer Buccal Midazolam and attend training if required Northumberland, Tyne and Wear NHS Foundation Trust 5

7 7.7 All staff working with any person who is prescribed Rectal Diazepam as a rescue medication should seek advice with regard to training from the Learning Disability/Specialist Epilepsy Nurse. 7.8 Availability and opportunities for more in-depth training around epilepsy can be provided by the epilepsy work stream to other areas across the Trust on request. 8 Role of Learning Disability/Specialist Epilepsy Nurse 8.1 The Learning Disability/Specialist Epilepsy Nurse will sit in the Planned Care Stream of Learning Disabilities. 8.2 Any queries or concerns with regard to the management or treatment of epilepsy for a person with a learning disability can be directed to Learning Disability/ Specialist Epilepsy Nurse. 8.3 A key role of the Learning Disability/Specialist Epilepsy Nurse is to develop a care pathway with regard to the management of epilepsy for people with a learning Disability and incorporating the role of mainstream and specialist learning disability services. 8.4 A key role of the Learning Disability/Specialist Epilepsy Nurse is also to provide advice and support with regard to access to community and multi-agency services. 9. Management of Epilepsy in Inpatient Areas 9.1 As part of the admission procedure, staff will complete a FACE (LD) Risk Profile. Where this indicates no evidence of a seizure (currently or previously) no further action is required in relation to the management of epilepsy other than to observe for signs of previously undetected epilepsy. 9.2 Where the FACE (LD) indicates that the person being admitted has had seizures (currently or previously) the Epilepsy Check List/Risk Assessment (Appendix 1) will be completed. 9.3 A part of the admission procedure, a member of the Pharmacy Team will complete Medicine Reconciliation, checking that medicines are accurate using a variety of sources including a medication summary which is faxed from the patient s GP. 9.4 The patient s named nurse will ensure comprehensive care/risk Management Plans are discussed with the patient and carer where appropriate and put in place. The nurse will ensure that the patient receives information about their epilepsy and treatment in a format which is accessible. 9.5 The care/risk Management Plan will be reviewed by the MDT at the Care Coordination Review meeting, which is called within seven days of the admission. 9.6 Further reviews of the individual s Epilepsy care/risk Management Plan will be agreed by MDT depending on the stability of the epilepsy but must be at least yearly. The Treatment Plan/Risk Management Plan will clearly state how often Northumberland, Tyne and Wear NHS Foundation Trust 6

8 AED medication will be reviewed including the need for blood levels to be checked. 9.7 Upon discharge from the inpatient area, the patient s named nurse will ensure an appropriate Health Care Professional has been identified and notified of the current Epilepsy care/risk Management Plan and responsibility for the monitoring and review of this has been passed on accordingly. This will be documented at the Discharge Meeting. 9.8 All direct care staff working in inpatient areas can access yearly awareness training and all qualified nursing staff can request Buccal training if required training. 9.9 If a patient is admitted who is prescribed Rectal Diazepam or a rescue medication, staff should contact the Learning Disability/Epilepsy Specialist Nurse, to arrange appropriate training All staff teams will have an identified Epilepsy Link Nurse whose role is to ensure all staff are aware of the contents of this PGN and the work of the Epilepsy Workstream Group The Epilepsy Link Nurse will be responsible for the maintenance of an Epilepsy Resource Pack, which will be provided to each staff team by the Epilepsy Workstream Group. 10 Management of Epilepsy in Community Teams 10.1 All people referred to Learning Disability Services will have their needs assessed, including an assessment using the FACE (LD) Risk Profile Where the FACE (LD) Risk Profile indicates no evidence of seizures (currently or previously) no further action is required in relation to the management of epilepsy other than to observe for signs of previously undetected epilepsy Where the FACE (LD) Risk Profile indicates that the person being referred has had seizures (currently or previously) the Epilepsy Check List / Risk Assessment (Appendix 1) will be completed. If it is a Health Care Professional other than a nurse who is completed the FACE (LD) Risk Profile, then they will refer to the nursing team for the Epilepsy Checklist/Risk Assessment to be completed. Where necessary the nurse will liaise with the person s GP in order to establish if a diagnosis of epilepsy has been made Where seizures have been indicated on the FACE (LD) Risk Profile but no diagnosis of epilepsy can be found, the nurse will discuss with the individual and their GP, the need to refer to a Neurologist so that a diagnosis can be established. The GP will determine the need for further investigations and refer to Neurologist as appropriate. Northumberland, Tyne and Wear NHS Foundation Trust 7

9 10.5 On completion of the Epilepsy Checklist/Risk Assessment the nurse will ensure a comprehensive Care Plan is in place with documents for the support / treatment and risk management of the individual s epilepsy The nurse will ensure the person receives information about their epilepsy and treatment in a format which is accessible The nurse will ensure a Health Care Professional has been identified to take responsibility for the review of the Care Plan and that plans are in place for this to happen at least yearly depending on the stability of the epilepsy. The Care Plan should clearly state how often AED medication will be reviewed including the need for blood levels to be checked. Review of the Care Plan should include MDT professionals involved in the individuals care and family/carers All direct care staff working in Learning Disability Services will receive bi-yearly epilepsy/sudep awareness training All staff teams will have an identified Epilepsy Link Nurse whose role is to ensure all staff are aware of the contents of this PGN and the work of the Epilepsy Workstream Group The Epilepsy Link Nurse will be responsible for the maintenance of an Epilepsy Resource Pack which will be provided to each staff team by the Epilepsy Workstream Group. 11 Audit 11.1 An audit of service compliance with this PGN will be carried out two yearly by the Epilepsy Workstream Group Results of the Audit will be fed through the Epilepsy Workstream Group to the Quality and Performance Group The Epilepsy Workstream Group will analyse results from the audit and identify appropriate actions in order to improve compliance with the PGN and the safe management of epilepsy for people using the services of Northumberland Tyne and Wear NHS Foundation Trust. Northumberland, Tyne and Wear NHS Foundation Trust 8

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