management of epilepsy · diagnosis and investigation of epilepsy it is important for people who...

1 Epilepsy Policy Issued: Jan 2013 Review Date: October 2015

Management of Epilepsy

1. Definitions

Epilepsy is defined as:- Epilepsy is a neurological disorder characterised by unprovoked recurring seizures (NICE 2012). An Epileptic seizure is defined as:- ‘A sudden stereotyped episode with changes in motor activity, sensation, behaviour, emotion, memory or consciousness due to an abnormal electrochemical discharge in the brain’ (NICE 2012). or ‘A rapid abnormal discharge of electrical activity within the brain’ (Anon).

2. Care Management and Treatment of Epilepsy

There are particular challenges in providing information and support for people with epilepsy as there may be occasions where people with learning disabilities and epilepsy cannot make their own decisions due to lack of mental capacity. It is important that decisions are made with appropriate advocacy for the individual (NICE 2012) and in line with the Mental Capacity Act (2005).

Aim

To enhance quality of life by stopping all seizures without side effects.

Or to minimise the number of seizures and minimise adverse effects of

treatment.

3. Diagnosis and Investigation of Epilepsy

It is important for people who may have a long term neurological condition to have a specialist assessment in line with national guidelines. This can help prevent wrong or delayed diagnosis in conditions such as epilepsy, which has been shown to be misdiagnosed in around one in 25% of all cases (NICE 2012).


A range of investigations chiefly EEG and brain imaging are available to assist Clinicians to make a multi-axial classification (classification of seizures and epilepsy syndromes) of epilepsy in individuals suspected as having epilepsy on the basis of information obtained from the individual and/or witness histories and physical examination. Great caution is required in performing investigations such as EEG when the clinics history offers limited support for a diagnosis of epilepsy as the risk of a false positive result may lead to misdiagnosis (NICE 2012). But the most likely cause of the seizures may be found by:- Collecting information for investigations.

Talking to the person and to people who might have seen the seizures

about what happened.

Confusion may arise between seizure activity and stereotypical or other behaviours. Obtain eyewitness accounts plus corroborative evidence (e.g. video) where possible.

Any service user with a recent onset suspected seizure will see their GP immediately with a view to being referred to a Consultant Neurologist. The Team Manager will ensure the service user visits their GP A record of this referral will be included in the service user’s personal records. This is based on the following NICE recommendation.

NB: All adults with a recent onset suspected seizure should be

seen urgently by a Specialist. This is to ensure precise and

early diagnosis and initiation of therapy as appropriate to

their needs (NICE 2012). Early accurate diagnosis for people experiencing their first seizure is important so that an appropriate pathway of care, including drug therapy, can be put in place effectively. A 12 lead ECG should be performed in adults with suspected epilepsy and in cases of diagnostic uncertainty, a referral to a Cardiologist should be considered (NICE 2012). More than one seizure needs to be considered for an accurate diagnosis. Particular care and attention may be needed to help the person tolerate investigations. The Support Team will identify and any support needs the service user has and the Team Manager and the Operational Network Manager will liaise with the Learning Disability Liaison Nurse at the hospital (where available) to agree a plan of support for the service user undertaking investigation. Agreements should form part of an Enhanced Health Action Plan. (See Health Action Planning Procedure) A referral for neuropsychological assessment (where available) if cognitive dysfunction needs to be assessed, particularly in regard to language and memory (NICE 2012) should be considered.


All service users with epilepsy should be monitored for cognitive and behavioural changes. Any changes or concerns must be recorded in the service user’s care notes. If there are any concerns a referral will be made to local support services, i.e. Community LD Team, Psychologist etc. by the Home Manager. If there are concerns regarding a service user with an existing condition of epilepsy or if a service user does not have a confirmed diagnosis, the Team Manager will ensure the service user visits their GP with a view to being referred to an adult Consultant Neurologist. A record of this referral will be included in the service user’s care notes. The service user should continue to be monitored by their General Practitioner (NICE 2012). See Appendix G for information regarding types of seizures.

4. Assessment and Care Planning Process

Mental Capacity Act (2005) Considerations

The Act requires that all service users are presumed to have the capacity to consent to make decisions regarding all aspects of their life, unless proved otherwise.

Where there is reason to question an individuals capacity to make a

decision, an assessment of capacity must be undertaken (refer to Mental Capacity Act).

Where a person is assessed as lacking capacity the Multi Disciplinary Team should carry out a best interest consultation with regards to the assessment and care planning regarding the individuals epilepsy.

Assessment All service users diagnosed with epilepsy will have an Epilepsy Assessment (Individual Assessment and Care Plan for the Management of Epilepsy (Appendix A) completed by an appropriately trained person. This could be the Team Manager, Operational Network Manager or member of the Multi Disciplinary Team (refer to section 10 regarding staff training). In developing the care plan, consider the possibility of adverse cognitive and behavioural effects of anti Epileptic Drugs Therapy (NICE 2012).

This plan must be completed in language which will assist the service user and all staff in understanding individual needs.

The Operational Network Manager is responsible for ensuring that assessments are completed and updated in accordance with Section 4.4.

New service users with a diagnosis or having treatment for epilepsy must have an Individual Assessment and Care Plan for the Management of Epilepsy completed within 1 week of moving in.


Health Action Planning Epilepsy management must be included as part of a Standard Health Action Plan. Action plans must be linked to Epilepsy Care and Risk Management Plans and will be reviewed in line with individual plans. NB: Where epilepsy management is complex, there are significant

health risks/needs or where a service user’s epilepsy is unstable or deteriorating an Enhanced Health Action Plan must be considered. Drawing a Health Action Plan together must wherever possible involve other Multi Disciplinary Team players from Acute or Primary Care Trusts, i.e. Learning Disability or Epilepsy Nurses (see the Department of Health Guidance on Health Action Planning).

For further information see Health Action Planning Policy.

Emergency Management

Following completion of assessment all service users with epilepsy will have an individual Epilepsy Support Plan for Emergency Management completed, this forms part of the Individual Assessment and Care Plan for the Management of Epilepsy (Appendix A). The plan will be completed in conjunction with the service users (where possible) medical staff, support staff and relevant others where appropriate.

NB: All service users with epilepsy or a past history of epilepsy

must have individual emergency management care plan (whether prescribed emergency medication or not).

Reviews All the individual assessment and care plans will be completed by the Team Manager in conjunction with the service users (where possible) medical and support staff and any relevant others. Reviews will be at least once every 6 months or following change of health needs.

Reviews must consider and discuss the following:-

Review of seizures (number, type, frequency in the past 12 months).

Current medication.

Investigations since last review/Consultant reviews.

Current safety equipment i.e. protection helmet, anti-suffocation pillow,

bed rails, epilepsy alarm (ensuring it remains appropriate, is being used as per manufacturer’s instructions and is in working order. Any new safety equipment must first be discussed with the doctor or


Epilepsy Specialist Nurse. Check any anti-suffocation pillows still return to the original shape after being used).

Service user and support staff concerns (consider understanding/nature of epilepsy, first aid, seizure management, hazards, risks, medication, side effects, compliance and daily life/behaviour).

A record of reviews will be documented on the Epilepsy Care Plan.

If there are causes for concern regarding the service users epilepsy during completion of the individual assessment and Epilepsy Care Plan, the following additional assessment tools may need to be completed:-

Epilepsy Outcome Scale (Appendix B): Where any concerns are highlighted the Epilepsy Outcome Scale must be completed.

Anti Epileptic Drug (AED) Side Effect Assessment (Appendix C): Where concerns are highlighted regarding the individuals epilepsy medication and/or side effects to their medication the Anti Epileptic Drug (AED) Side Effect Assessment must also be completed.

Seizure Severity Scale (Appendix D): Where concerns are highlighted regarding seizure management, hazards and risks, daily life, behaviour or continence issues the Seizure Severity Scale must also be completed.

These assessment tools should also be considered if there is a change of need regarding the service user’s epilepsy.

The Team Manager will discuss the results of the assessment(s) with the service users GP or Consultant Neurologist or Epilepsy Nurse Specialist, whichever appropriate.

5. Risk Assessment

All service users with epilepsy and regardless of ability must have bathing/showering included in their risk assessment including the support required during bathing following Intimate Care including Bathing and Showers Procedure and Risk Assessment and Support Procedure.

Privacy and Dignity

When undertaking risk assessment and developing a support plan the risk management/mitigation measures must always take into account privacy and dignity issues. Further activities/issues to be included in the risk assessments (following Risk Management Procedure) will include (where appropriate):-

Activities in the kitchen, including preparing food.

Using electrical equipment.


The impact of epilepsy in a social setting, for example, at the Day

Centre/College, swimming.

The suitability of independent living, where the rights of the individual are balanced with the role of the support staff.

Managing prolonged or serial seizures.

SUDEP (refer to section 6 and Appendix H to assess the individuals risk of SUDEP). This is not an exhaustive list

NB: “Choice versus Health and Safety” - just because someone has

epilepsy does not mean that they cannot engage or do something i.e. take bath, go swimming, live in a home that has two levels, cook using boiling water, use knives etc. Where there are identified risk with something that is important to a person the onus is on the Support Team to work through with the service users how to support them to get what’s important whilst keep them and others safe. Where the risks cannot be mitigated against and there are issues of heath and safety to service user and/or others then the Support Team has a responsibility to let the service user know the reasons why they are unable to have/engage in what’s important to them.

All risk assessments must be cross referenced to the Individual

Assessment and Epilepsy Care Plan for the Management of Epilepsy (see Appendix A).

6. Sudden Unexpected Death in Epilepsy (SUDEP)

SUDEP is the sudden, unexpected, witnessed or un-witnessed, non-traumatic and non-drowning death in service users with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death (NICE 2012).

In other words, SUDEP is when a person with epilepsy dies suddenly and no cause of death is revealed.

There should be information and discussion with the Support Team, with consideration for including the service user and their family when considering the risk of SUDEP, this discussion will be documented within the service users care notes and any identified risks documented within a risk assessment.

The risk of SUDEP can be minimised by optimising seizure control and being aware of the consequences of nocturnal seizures, this information will be included within: staff training and the service user’s Individual Assessment, Epilepsy Care Plans and Risk Assessments.


(Risks of and Prevention of SUDEP information appended – Appendix H).

7. Treatment

Medication will be reviewed with the GP in line with Medication Policy. Consultant Neurologist/Epilepsy Specialist Service

Where a service user is not under the care of a Neurologist and when an assessment identifies areas of concern or where there are issues in relation to the deterioration in epilepsy management, the Team Manager must ensure a discussion takes place with the GP regarding the need to refer the service user to an adult Consultant Neurologist. A record of this discussion and decision will be coded (EP) and entered in the service user’s Personal Record.

A request should be made to the GP for referral to a Specialist Epilepsy Service if there is behavioural or developmental regression or if the epilepsy syndrome cannot be identified.

It is recommended that the above referral should be made soon (within 4 weeks) if one or more of the following are present:-

AEDs do not control seizures within 2 years.

Two AEDs have been tried unsuccessfully.

There are or there is a risk of unacceptable side effects of medication.

There is psychological and/or psychiatric co-morbidity.

There is a diagnostic doubt and seizure type and/or syndrome.

8. Record Keeping

It is important that all information regarding epilepsy is fully documented. It is the responsibility of the person observing the seizure to complete all the relevant records Records to be completed following a seizure:-

a) All seizures, treatment and details will be coded (EP) with full

supporting details in the Service Users Personal Record. Details must include full amount of the seizure time, description of seizure onset, duration and recovery, where observed (see guidance notes at Appendix E).

b) Epilepsy Summary Record Sheet (either monthly or annual)


c) 24 Hour Report Book.

d) Incident Report if injury occurs.

e) Individual Seizure Charts as requested and agreed by the Support Team/Commissioner requirements.

It is the responsibility of the Team Manager to ensure that records are completed and kept up to date. This would form part of their weekly triangulation checks.

Epilepsy Summary Record Sheets (Appendix F and J)

Seizures will be recorded on the appropriate Epilepsy Summary Record Sheet as soon as possible following a seizure using the key descriptions from the seizure type column.

Where a service user has numbers of seizures each month, they will be recorded on a Monthly Epilepsy Summary Record (Appendix J). This form also makes a record of any medication changes, as required medication administration, menstruation, mood and/or behaviour changes.

Where a service user’s epilepsy is well controlled, and they only have a few seizures each year, they will be recorded on an annual Epilepsy Summary Record (Appendix F).

Monthly Totals

At the end of each month the Team Manager, or nominated other, will ensure that the number and types of seizures and the numbers of times rescue medication has been administered is totalled in the columns provided on the Epilepsy Summary Record Sheet.

9. Staff Training Service Induction All staff will complete an Epilepsy Awareness Package as part of their Service Induction

Emergency Management and Assessment of Epilepsy Staff who are required to complete the epilepsy assessment and care plan will receive the appropriate training to enable them to do so competently. All staff that support people who have epilepsy will be required to undertake either an Epilepsy Awareness Workshop. Thereafter staff will be required to undertake refresher training at least once every 2 years. The Team Manager is responsible for ensuring compliance with the training requirement. Where there are problems in meeting the requirements it will be brought to the attention of the Operational Network Manager or Chief Operating Officer.


It is the responsibility of the Team Manager to discuss and identify staff training requirements of the home and maintain training records at house level. Rescue Medication Training Where service users are prescribed rescue medication, staff will be required to undertake training. Thereafter staff will be required to undertake a refresher training at least once every 2 years.

NB: Staff can not undertake rescue medication training until they

have attended an Epilepsy Awareness course.

All training for administration of rectal diazepam will follow the standards given in the Joint Epilepsy Council Department – “A Guideline on Training Standards for the Administration of Rectal Diazepam”. All training for administration of buccal midazolam will follow the standards given in the Joint Epilepsy Council Department – “A Guideline on Training Standards for the Administration of Buccal Midazolam”. Staff that attend rescue medication training must pass a written test in order to be accredited to administer that medication. If they pass, a certificate will be issued by the facilitator of the training, stating they are accredited. This certificate must be stored in the house with the person’s medication accreditation certificate.

It is the Team Managers responsibility to ensure that named individuals are adequately trained and up to date in the administration of rescue medication. A list of all staff accredited to administer rescue medication to a service user will be stored with their Individual Assessment and Care Plan for the Management of Epilepsy (see Appendix I).

10. Information for Adults with Epilepsy and their

Family/Carers

Everyone providing care or treatment should be able to provide essential information (NICE 2004).

Information will be provided in formats, languages and ways that are suited to the individuals requirements. There are booklets available in accessible format – “About Epilepsy” from The Epilepsy Society. They are designed with and for people with mild to moderate learning disabilities.


The booklets contain leaflets about different aspects of the condition, epilepsy, safety, medication, EEG, MRI, blood tests, going to see your Doctor, living with epilepsy. The resources use words, symbols and photos. Information can also be accessed from the following websites:-

www.epilepsy.org.uk www.epilepsynse.org.uk

11. Medical Devices Team Managers are responsible for ensuring that any devices hired or owned by Future Directions CIC or the Service User are maintained/managed in accordance with the Service User Mobility Policy

12. Systems Audit

This procedure and its operations are subject to systems audit by Operational Network and Senior Managers and audits as determined and agreed with the Future Directions CIC Board of Directors.

http://www.epilepsy.org.uk/

http://www.epilepsynse.org.uk/


Epilepsy Policy Appendix A Please write clearly, in black ink, initial amendment and do not use tippex

INDIVIDUAL ASSESSMENT AND CARE PLAN FOR THE MANAGEMENT OF EPILEPSY

(Including Epilepsy Care Plan for Individual Emergency Management)

Service User Name: ____________________________________________ Address: ___________________________________________ Completed by: ____________________________ Date: __________


CONTENTS

SECTION

1 GUIDANCE NOTES

2 INFORMATION SOURCES

3 MOST RECENT INVESTIGATIONS

4 PREVIOUS EPILEPSY MEDICATION

5 CURRENT MEDICATION

6 CURRENT SAFETY EQUIPMENT

7 SERVICE USER/CARE CONCERNS REGARDING EPILEPSY

8 OBSERVER SEIZURE DESCRIPTION

9 EPILEPSY CARE PLAN FOR INDIVIDUAL EMERGENCY MANAGEMENT


1. GUIDANCE NOTES

OUTLINE EPILEPSY HISTORY – To include diagnosis, seizure classification and

age when first seizure was recorded if available. Identify syndrome, seizure

types, concerns, injuries etc. Also state if non epileptic attaches (NEA) have been

identified.

Obtain as much information as possible from family, carers, service user and

previous Hospitals and GP records.

2. INFORMATION SOURCES (i.e. service user, family, carers, Medical Records, GP)


3. MOST RECENT INVESTIGATIONS

Where When Outcome

Blood Anti Epileptic Drug Levels

EEG

MRI Scan

CAT Scan

Video Telemetry

Angiogram

X-Ray

In-patient Assessment (i.e. David Lewis)

4. PREVIOUS EPILEPSY MEDICATION

Medication Dose and Schedule

Date Discontinued

Reason for Discontinuation

5. CURRENT MEDICATION (see Medicine Chart)

Medication (Brand Name) Dose and Schedule

6. CURRENT SAFETY EQUIPMENT ()

() MDR () MDR


Protection Helmet Shower Unit

Anti Suffocation Pillow Others please specify

Seizure Alarm

Bedrails

Bedrail covers

MDR = Medical Devices Register: if the equipment has been added to the house Medical Devices Register.

Guidance Notes

Consider all potential concerns and complete relevant sections only

If concerns are expressed epilepsy outcome scale should be completed. The Anti

Epileptic Drug (AED) Side Effect Scale and the Seizure Severity Scale may also

need to be completed (refer to procedure C24.5 section 4.4)

7. CONCERNS REGARDING EPILEPSY

Service User Concerns regarding Epilepsy

Carer Concerns regarding Epilepsy

Understanding nature/cause of epilepsy

First Aid

Seizure Management

Hazards and Risks

Medication Regime

Compliance


Side Effects

Daily Life, Behavioural

Continence Issues

Risk Assessments (Refer to Section 5 of the procedure)

RISK ASSESSMENT COMPLETED

Yes (Enter Date)

No (tick)

If No, reason

Bathing/Showering

Kitchen Activities

Use of Electrical Equipment

Special Activities (detail) 1) 2) 3) 4)

Independent Living

SUDEP (refer to Appendix H)


8. OBSERVER SEIZURE DESCRIPTION (complete one record for each seizure type)

Seizure Number

Typical triggers and/or pattern

Warnings (Aura) Typical duration – does this usually precede a generalised seizure

Observation immediately before seizure onset (e.g. head drops, calls out, appears quiet/agitated)

Seizure description/activity (e.g. body movements, usual duration)

Action to take during the seizure

Seizure recovery period and action to be taken following the seizure (e.g. sleeps for 1 hour)

Usual frequency


9. EPILEPSY CARE PLAN FOR INDIVIDUAL EMERGENCY MANAGEMENT (Agreed with the GP/Consultant)

a) Summarise what a seizure looks like from start to finish

b) When should emergency medication be given (after a certain length of time or number of seizures)

c) Medication

Dose Route

d) Initial Dose (note recommended milligrams for this person)

e) What is the Usual Reaction(s) to this medication?

f) Can a second dose be Administered? YES/NO


g) After how long can a second dose be given (state the time to have elapsed before

administration takes place)

h) How much is given as a second dose (state number of milligrams)

i) When should the person’s usual Doctor be consulted?

j) Directions for On Call To attend in all cases YES/NO

k) When should 999 be dialled for emergency help?

l) Any other Care Plan instructions or information

.


m) People who have contributed to this

care plan (print name) n) The service user lacks

capacity to sign this plan (if applies tick and date the box)

()

SERVICE USER’S SIGNATURE

(Print Name)

DATE:

TEAM MANAGER

(Print Name)

TEAM MANAGER

(Signature)

DATE:

OPERATIONAL NETWORK MANAGER

(Print Name)

OPERATIONAL NETWORK MANAGER

(Signature)

CARE MANAGER/SOCIAL WORKER

(Print Name))

DATE:

CARE MANAGER/SOCIAL WORKER

(Signature)

PRESCRIBING DOCTOR

(Signature)

DATE

DATE:

O) Date reviewed at Planning or other meeting, where no significant changes to this plan.

Date Reviewed

TM Initials Date Reviewed TM Initials Date Reviewed TM Initials

Date

ONWM Initials Date ONWM Initials Date ONWM Initials

Date Reviewed

TM Initials Date Reviewed TM Initials Date Reviewed TM Initials

Date

ONWM Initials Date ONWM Initials Date ONWM Initials


Please write clearly, in black ink, initial amendment and do not use tippex

EPILEPSY OUTCOME SCALE (Epsie et al 1998)

Service User Name: _______________________________ Date Completed: ___________

0 1 2 3 4 Not a Concern Rarely a Concern Fairly a Concern Often a Concern Major Concern

CONCERNS ABOUT SEIZURES Having one seizure after another 0 1 2 3 4

Having more seizures than usual 0 1 2 3 4

Not seen it happen, not being there 0 1 2 3 4

Other people not knowing what is happening 0 1 2 3 4

Other people not knowing what to do 0 1 2 3 4

Trying to keep a proper record of the seizures 0 1 2 3 4

Having lots of seizures 0 1 2 3 4

Having seizures during the night 0 1 2 3 4

Being incontinent 0 1 2 3 4

Taking a while to recover from seizure 0 1 2 3 4

CONCERNS ABOUT MEDICATION FOR EPILEPSY

Getting too much medication 0 1 2 3 4

Being sluggish or drowsy 0 1 2 3 4

Never being free from medication 0 1 2 3 4

Medication causing other health problems 0 1 2 3 4

Having no clear guidelines about medication 0 1 2 3 4

Having to give medication rectally 0 1 2 3 4

Getting the balance right to control seizures 0 1 2 3 4

Becoming dependant on medication 0 1 2 3 4

Changing moods due to medication 0 1 2 3 4

Having seizures despite medication 0 1 2 3 4

Trying to cut down or stop medication 0 1 2 3 4

Doctors changing medication around 0 1 2 3 4

Not being asked what I think of medication 0 1 2 3 4

CONCERNS ABOUT INJURY

Someone else getting hurt 0 1 2 3 4

Falling over 0 1 2 3 4

Sudden death during a seizure 0 1 2 3 4

Being unable to breathe 0 1 2 3 4

Seizures causing damage to the brain 0 1 2 3 4

Having a fatal accident 0 1 2 3 4

Breaking bones/getting cuts that need treatment 0 1 2 3 4

CONCERNS ABOUT DAILY LIFE

Being left alone 0 1 2 3 4

Travelling in the car 0 1 2 3 4

Bathing or showering alone 0 1 2 3 4

Being out of doors 0 1 2 3 4

Not being accepted in public 0 1 2 3 4

Not getting the chance to work 0 1 2 3 4

Carers having interrupted sleep 0 1 2 3 4

Lack of privacy 0 1 2 3 4

Not being able to go to the toilet alone 0 1 2 3 4

Loss of confidence 0 1 2 3 4


Type of Concern

HIGH Concern

MEDIUM Concern

LOW Concern

4s 3s 2s 1s

Concerns about Seizures

Concerns about Medication for Epilepsy

Concerns about Injury

Concerns about Daily Life

TOTAL SCORE

COMPLETED BY: __________________________________________________

DESIGNATION: __________________________________________________ DATE: __________________________________________________ Copy to: ______________________________________________________

______________________________________________________


Epilepsy Policy Appendix B Please write clearly, in black ink, initial amendment and do not use tippex

ANTI EPILEPTIC DRUG SIDE EFFECT ASSESSMENT

Service User Name: _________________________________ Date Completed: _________ Address: __________________________________________________________________

0 Has not been observed

1 Has been observed/reported prior to commencement of medication or unknown

2 Observed/reported less than once a week

3 Observed/reported more than once a week

4 Observed/reported continuously

N/A Not applicable

Circle the relevant score

SIDE EFFECT SCORE

Dose Related Side Effects

Complains of nausea 0 1 2 3 4 N/A

Vomiting 0 1 2 3 4 N/A

Complaining of blurred vision 0 1 2 3 4 N/A

Complaining of headache 0 1 2 3 4 N/A

Complaining of tinnitus 0 1 2 3 4 N/A

Unsteady/poor balance 0 1 2 3 4 N/A

Tremor and twitching of a limb or limbs 0 1 2 3 4 N/A

Complaining of tiredness/lethargy 0 1 2 3 4 N/A

Restlessness and agitation/hyperactivity 0 1 2 3 4 N/A

Altered gait 0 1 2 3 4 N/A

Complaining of difficulty in concentration/cognition 0 1 2 3 4 N/A

Confusion/disorientation 0 1 2 3 4 N/A

Flushing of complexion 0 1 2 3 4 N/A

Increased thirst 0 1 2 3 4 N/A

Abdominal pain/discomfort 0 1 2 3 4 N/A

Decreased libido/impotence 0 1 2 3 4 N/A

Oedema 0 1 2 3 4 N/A

Paralysis of face or limbs 0 1 2 3 4 N/A

Increased alertness 0 1 2 3 4 N/A

Increase in seizure frequency 0 1 2 3 4 N/A

Idiosyncratic Side Effects

A rash/dry/itchy skin 0 1 2 3 4 N/A

Vomiting 0 1 2 3 4 N/A

Abdominal pain/discomfort 0 1 2 3 4 N/A

Increased seizure frequency 0 1 2 3 4 N/A

Weight loss 0 1 2 3 4 N/A

Behaviour difficulties exacerbated/irritability 0 1 2 3 4 N/A

Insomnia 0 1 2 3 4 N/A

Palpitations 0 1 2 3 4 N/A

Feelings or symptoms of depression/psychosis 0 1 2 3 4 N/A

Confusion 0 1 2 3 4 N/A


Chronic Side Effects

Hair loss 0 1 2 3 4 N/A

Unusual hair growth 0 1 2 3 4 N/A

Weight gain 0 1 2 3 4 N/A

Weight loss 0 1 2 3 4 N/A

Swelling/bleeding of the gums 0 1 2 3 4 N/A

Oedema 0 1 2 3 4 N/A

Nightmares 0 1 2 3 4 N/A

Acne 0 1 2 3 4 N/A

Pain/discomfort in the abdomen or back 0 1 2 3 4 N/A

Coarsening of facial features 0 1 2 3 4 N/A

Joint pain/discomfort 0 1 2 3 4 N/A

Visual impairment 0 1 2 3 4 N/A

Affects on menstruation 0 1 2 3 4 N/A

Miscellaneous Side Effects

0 1 2 3 4 N/A

0 1 2 3 4 N/A

0 1 2 3 4 N/A

0 1 2 3 4 N/A

Current Medication (please include all medication including over the counter preparations)

Name Dose

Date first prescribed

Name Dose


Name Dose


Name Dose


Name Dose



Type of Side Effect

HIGH Concern

MEDIUM Concern

LOW Concern

4s 3s 2s 1s

Dose related side effects

Idiosyncratic side effects

Chronic side effects

Miscellaneous side effects

TOTAL SCORE

COMPLETED BY: __________________________________________________


______________________________________________________


Epilepsy Policy Appendix C Please write clearly, in black ink, initial amendment and do not use tippex

SEIZURE SEVERITY SCALE (Donoghue et al 1996) Service User Name: ______________________________ Date Completed: ____________

Wheelchair User ()

Seizure TYPE 1

Seizure TYPE 2

Seizure TYPE 3

Name

Date

Does the service user have generalised convulsions during this type of seizure?

Yes 4 4 4

No 0 0 0

How often has the service user fallen to the ground in this type of seizure?

Nearly always/always 4 4 4

Often 3 3 3

Occasionally 2 2 2

Never 0 0 0

Has this type of seizure caused any of the following?

Burns, scalds, cuts, fractures 4 4 4

Bitten tongue, headaches 3 3 3

Minor injuries, headaches 2 2 2

No injuries 0 0 0

How often is the service user incontinent of urine in this type of seizure?


Often 3 3 3

Occasionally 2 2 2

Never 0 0 0

If seizure causes loss of consciousness is there a warning?

Never 2 2 2

Sometimes 1 1 1


How long is it until the service user recovers?

Less than 1 minute 0 0 0

1-10 minutes 1 1 1

10 minutes – 1 hour 2 2 2

1 hour – 3 hours 3 3 3

3 hours plus 4 4 4

Do the following events occur in this type of seizure?

Disruptive automatisms 4 4 4

Mild automatisms/jerks 2 2 2

None 0 0 0 Add 1 point to each column 1 1 1


SCORE /33 /33 /33

COMPLETED BY: __________________________________________________


______________________________________________________


Epilepsy Policy Appendix D Please write clearly, in black ink, initial amendment and do not use tippex

Entry in Service User’s Personal Records should include

Seizure Description Guidelines

What happened before the seizure?

Could you tell it was going to

happen? Was there anything that could

have triggered it off? What happened during the

seizure? Where did it happen? How long did it last? What happened after the seizure? Were there any injuries? How long before full recovery? Was seizure self reported? Was there any indication that the

seizure was not of an epileptic nature (i.e. Non Epileptic Attack Disorder NEAD)

Pre Seizure Aura Stress Related Behaviour Change Mood Change Sleep Pattern Change Lethargy Constipation Associated with Menstruation Illness Automatisms Vocalisation Scream/Cry/Laughing During Seizure Loses Consciousness Remains Conscious Cyanosis Face Pale Face Flushed Staring on Onset Eye Movements/Deviations Do they Fall Atonic Tonic Rhythmic Jerking Brief Spasms Incontinence Automatisms Behaviour Problems After Seizure Confusion Sleepy Aggression Automatisms Headache Amnesia Paralysis Mood Alteration


Epilepsy Policy Appendix E Please write clearly, in black ink, initial amendment and do not use tippex NAME: Mr/Mrs/Miss/Ms (delete) EPILEPSY SUMMARY RECORD SHEET Private and Confidential ADDRESS: YEAR: Entries on this form must be cross referenced with

the service user Personal Records

Jan Feb March April May June July August Sept Oct Nov Dec Seizure Type (Key) 1 A 2 3

4

5

6

7 8 B 9

10

11

12

13 C 14 15

16

17

18

19 D 20 21

22

23

24

25 E 26 27

28

29

30

31

SEIZURE TYPE AND TOTAL FOR EACH MONTH A R = Administration of Rectal Diazepam

M = Administration of Midazolam

O = Administration of oral “as

required” medication

B

C

D

E

R

Operational Network Manager initial and date in the box 6 monthly


Epilepsy Policy Appendix E

WHAT TYPE(S) OF SEIZURE

NICE 2012 recommend that the seizure type(s) and epilepsy syndrome, aetiology and co-morbidity should be determined. Until there is a confirmed diagnosis by a Consultant Neurologist the RMO/Consultant Psychiatrist and/or General Practitioner will make a differential diagnosis based upon symptoms presented. Epilepsy is not a uniform condition, but comprises of many different seizure types and epilepsy syndromes. Seizures can be broadly categorised into 2 types, partial and generalised. Seizures are described using the International Classification of Seizures.

Partial

The neuronal discharge begins in or is restricted to a localised part of the brain.

Simple Partial

Consciousness not impaired.

Complex Partial

Impairment of consciousness.

NB: Partial seizures may evolve into secondary generalised seizures.

Generalised

No focal onset, more diffuse neuronal discharges involving both hemispheres of

the brain.

Absence

Myoclonic

Clonic

Tonic

Tonic-clonic

Atonic, infantile spasms

Unclassified

Epileptic seizures, usually used when an adequate description is not available.


Epilepsy Policy Appendix F

INFORMATION LEAFLET

Sudden Unexpected Death in Epilepsy (SUDEP)

“SUDEP is the sudden, unexpected, witnessed or unwitnessed, nontraumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death” (NICE 2012). Epilepsy, meaning a tendency to have recurrent seizures is the most common serious neurological condition. At any one time between 1 in 140 and 1 in 200 people in the UK (at least 300,000 people) are being treated for epilepsy. Each year, in a community of 250,000 people between 125 and 200 will develop epilepsy. People with epilepsy have a risk of premature death that is 2-3 times higher than in the general population. Most premature deaths among people with epilepsy are directly related to the epilepsy itself. Every year in the UK about 1000 people die because of epilepsy, and most of these deaths are associated with seizures. Epilepsy related causes of death in this population account for 40% of the deaths and include the following:- Death due to the underlying disease in symptomatic epilepsy. Sudden unexpected death in epilepsy (SUDEP). Accidents during epileptic attack (i.e. trauma, drowning, burning, choking). Status epilepticus. Suicide. Treatment related death. Sudden unexpected death in epilepsy or SUDEP is the principal cause of seizure related death in people with chronic epilepsy and has been estimated to account for about 500 deaths each year. Young adults are most at risk of SUDEP, and most deaths occur at home. Although it is not entirely clear what causes SUDEP, the most important risk factor is the occurrence of seizures – the more frequent the seizures, the higher the risk. In an attempt to standardise the definition of this phenomenon, the US Food and Drug Administration (FDA) and Burroughs-Wellcome developed the following criteria for SUDEP in 1993. These criteria are now used in most SUDEP studies:- The service user has epilepsy, which is defined as recurrent unprovoked

seizures. The service user died unexpectedly while in a reasonable state of health. The death occurred suddenly (i.e. within minutes).


The death occurred during normal and benign circumstances. An obvious medical cause of death could not be determined at autopsy. The death was not the direct result of a seizure or status epilepticus. Notably, evidence of a recent seizure does not exclude the diagnosis of SUDEP as long as death did not occur during the seizure. To further categorise the cases, they also defined the following:-

Definite SUDEP

Cases meet all criteria and have sufficient descriptions of the circumstances of

the death and a post-mortem report.

Probable SUDEP

Cases meet all criteria but lack post-mortem data.

Possible SUDEP

SUDEP cannot be ruled out but evidence is insufficient regarding the

circumstances of death and no post-mortem report is available.

Not SUDEP

Other causes of death are established clearly or the circumstances make the

diagnosis of SUDEP highly improbable.

Risk Factors Although SUDEP is rare for many types of epilepsy, risks need to be assessed individually. The NICE guideline recommends that individuals with epilepsy and their families or carers should be given information about SUDEP and ways to reduce the risk at diagnosis. SUDEP is less likely to happen if seizures are being controlled effectively and you and your family or carers are alert to the risks of potential night time seizures. There may be factors that increase the risk of SUDEP, such as poor control of seizures, having convulsive seizures, having seizures during sleep, having a learning disability, being a young adult male, not taking medication as prescribed or having abrupt or frequent changes to medication. SUDEP has been shown to be associated with the following risk factors. The average age is estimated to be 28-35 years. SUDEP is very rare in children. Developmental delay, defined as intelligence quotient score (IQ) less than 70 or delay so severe that formal mental status examination was not possible, is significantly more common in the SUDEP group than in patients with epilepsy who do not experience SUDEP. Most patients who die of SUDEP had poorly controlled seizure disorder, i.e. a higher than average number of seizures per year. Levels of anti-epileptic medications have been shown to sub-therapeutic in most SDEP cases. This might be an indicator of poor compliance with medications. Patients on multiple anti-epileptic drugs had a significantly higher rate of SUDEP than service users with epilepsy who were not on multiple anti-epileptic drugs. Also, a


questionable role has been attributed to recent sudden changes in medication regimen of service users.

Variable High Risk

Patient Related Risk Factors

Age 28-35 years

Sex Male

Race African American

Health Developmental Delay

Seizure Related Risk Factors

Seizure Etiology Symptomatic

Seizure Type Generalised Tonic-Clonic

Age of Seizure Onset Younger

Duration of Seizure Disorder Longer than 10 years

Severity of Seizure Increased Number of Attacks

Treatment Related Risk Factors

Anti-epileptic Medication Serum Levels Sub therapeutic

Number of Anti-epileptic Medications Greater

Anti-epileptic Medication Regimen Recently changed

Other Treatment Surgery

Prevention Research, to date, into SUDEP has given us some ideas on how to reduce the risks, though there is still not enough information to prevent SUDEP completely. Further studies are urgently needed. In the meantime, it is possible to use the information available to try to reduce the risks of SUDEP. Service users education plays a significant role in preventing sudden death.

Sufficient information is now available to reassure most service users, identify high risk service users, and suggest means to reduce risk of SUDEP. The issue of SUDEP needs to be discussed specifically with service users and care givers.

People whose seizures are not well controlled would benefit from regular

assessment by an epilepsy specialist, in order to ensure the best possible seizure control.

For people whose epilepsy is well controlled, it would be advisable to be monitored

by a Medical Professional and to take the medication regularly as prescribed. If anti-epileptic drug (AED) treatment has proved unsuccessful, treatments such as

surgery or vagus nerve stimulation could be explored. Medication should never be abruptly withdrawn, as this could cause seizures to

occur. This may also increase the risk of death. Optimal seizure management with effective monotherapy seems to be the goal for

decreasing the risk of SUDEP. Compliance with medication and avoiding periods of decreased coverage during changes in medication regimens are essential. The importance of avoiding alcohol, drugs, seizure provoking situations, and high risk situations (e.g. swimming) needs to be emphasised.


Care givers need to be trained in acute management of tonic-clonic seizures, including positioning the service user during and after the attack and delivering cardiopulmonary resuscitation. Respiration needs to be monitored during the postictal period (period immediately after a seizure). Stimulating the service users postictally also is believed to reduce the chances of apnoea. SUDEP is far more common in an outpatient setting than in a group home setting where the staff had received vigorous training in the first aid treatment of tonic-clonic seizures.

For anyone considering the possible risks of SUDEP, as in every other area of life, a balance has to be struck between living a full and active life and taking precautions to reduce risks. People with epilepsy are individuals and as such have the right to choose how they lead their lives.


Epilepsy Policy Appendix G

RESCUE MEDICATION ACCREDITATIONS

The following staff are accredited to administer _______________to _____________________ (medication) (service user[s])

Name Date of Accreditation

Staff Signature Signature of Home Manager

Date Re-Accreditation

Due

To be stored with Individual Assessment and Care Plan for the Management of Epilepsy


Epilepsy Policy Appendix H Please write clearly, in black ink, initial amendment and do not use tippex

NAME: Mr/Mrs/Miss/Ms (delete)

MONTHLY EPILEPSY SUMMARY RECORD SHEET Private and Confidential

ADDRESS: MONTH: Entries on this form must be cross referenced with the service user Personal Records

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16

18 19 20 21 22 23 24 25 26 27 28 29 30 31 Seizure Type (Key)

A

B C D E

Medication Changes R = Administration of Rectal Diazepam M = Administration of Midazolam O = Administration of Oral “As Required” Medication

PRN Medication

Menstruation

Mood Change


Behaviour Change

Total Number of

Seizures

Operational Network Manager initial and date in the box 6 monthly


INSTRUCTIONS ON USE

1. When an individual has a seizure, enter the appropriate letter to describe the seizure type and the time (in 24 hour clock) next to the date. 2. If the person has further seizures in that day, follow Step 1 again. 3. For any medication changes, indicate an increase with ↑ or a decrease with ↓ on the appropriate date. 4. When PRN medication is administered insert the time of administration in the appropriate date. 5. Indicate dates of menstruation with a tick in the appropriate box. 6. Indicate any mood or behaviour changes with a time in the appropriate box

management of epilepsy · diagnosis and investigation of epilepsy it is important for people who...

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