CNTW(C)20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

Epilepsy Checklist

And

Risk Assessment

Julie Kelly Epilepsy Specialist Nurse

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

2

Epilepsy Checklist.

Patient Name

Date of Birth NHS ID

STAFF NAME completing checklist:

Information obtained from:

CLINICIAN involved in Epilepsy monitoring (GP, Psychiatrist, Neurologist)

DATE - Checklist completed

Epilepsy Specialist Nurse involved

The Epilepsy Checklist and Risk Assessment should be completed following

identification of epilepsy on the FACE Risk Assessment or on diagnosis of epilepsy.

Once completed the information obtained should be used to complete the individuals

care plan. All clinical staff working in direct care, inpatient, and community services

should complete the checklist/risk assessment. The checklist helps the clinical team

gain awareness of the individual’s knowledge and what support may be required

around their epilepsy.

All individuals with epilepsy should have a regular structured review; this review

should be carried out at least yearly but may be reviewed more frequently depending

on how well the epilepsy is controlled and/or the presence of specific lifestyle issues.

Review timescales should be agreed with the individual and staff team caring for the

person with epilepsy.

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

3

Epilepsy Checklist

This checklist aims to assist GP’s, other doctors and inpatient/community teams in meeting the information needs of epilepsy patients and their carers.

Code (P = patient, C = Carer)

If possible please indicate why the patient/carer has made no comment (if applicable)

Please tick relevant box

Yes No

P C P C

The Diagnosis. Does the patient/carer understand: That the diagnosis is epilepsy .Ensure /confirm epilepsy diagnosis, if diagnosis is not clear, or dissociative seizures / non-epileptic attack, refer and care plan accordingly.

(please record)

What Epilepsy is? (please record)

What their seizures are like/can they describe their seizures? (please record)

What their own seizures are called/type?

(please record)

If ‘YES’ please document in care plans If ‘NO’ please confirm diagnosis and document in care plans

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

4

Please tick relevant box

Yes No

P C P C

Epilepsy Medication. Does the patient/carer know: The purpose of the medication?

(please record)

The importance of compliance? (please record)

About possible side effects? (please record)

What to do if a dose is missed (please record)

What to do if vomiting occurs (please record)

Are you prescribed any rescue medication? (please record)

If ‘YES’ please document in care plans If ‘NO’ please request medication review/give relevant information. If prescribed rescue medication – ensure CNTW Buccal Midazolam care plan is in place, risk assessment completed and staff trained in epilepsy, SUDEP and administration of Buccal Midazolam

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

5

Please tick relevant box

Yes No

P C P C

Basic information. Has the patient/carer had: Epilepsy .org.uk. Has information on Risk/SUDEP. Sudden Unexpected Death in Epilepsy (SUDEP) /

Information on seizure type, risk management and risk factors?

A basic epilepsy information booklet? (please record)

A chance to see an epilepsy video? (please record)

First aid instruction/demonstration? (please record)

Information on legal restrictions for driving and certain jobs etc.? (please record)

If ‘YES’ please document in care plans

If ‘NO’ please obtain information and discuss, review awareness and document in care plans.

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

6

Please tick relevant box

Yes No

P C P C

Lifestyle. Has guidance been given on: Leading a full and active life?

(please record)

Adopting a moderate approach to alcohol? (please record)

Having regular and sufficient sleep? (please record)

Safety in the home? (Consider for each individual, fires/radiators) (please record)

Bathing/showering, stairs, pillows, cookers, locked doors etc (please record)

Safety risk and recreation? (please record)

Implications of epilepsy? (e.g. for relationships and parenthood (please record)

Please check if the individual is taking Valproate. Valproate medicines must no longer be used in women or girls of childbearing potential unless a pregnancy prevention programme is in place. The requirement for a pregnancy prevention programme is applicable to all Premenopausal female patients unless the prescriber considers that there are Compelling reasons to indicate that there is no risk of pregnancy.

If ‘YES’ please document in care plans. If ‘NO’ please obtain information and discuss individual risk, document in care plan.

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

7

Please tick relevant box

Yes No

P C P C

Ongoing Dialogue. Has the patient/carer been encouraged to: Return with questions?

(please record)

Keep a record of seizures? (please record)

Report changes in seizure pattern and general health to GP/clinician involved? (please record)

If ‘YES’ please document in care plans

If ‘NO’ please obtain information and discuss, document in care plans.

Further Help: Is the patient/carer aware of: That additional support and information on the above topics can be obtained from either various epilepsy associations/Epilepsy Action or Epilepsy Specialist Nurses.

. (please record)

Access to mainstream services (please record)

Current physical health (smoking-BMI) (please record)

Person Centred Planning (please record)

Carers assessment (please record)

If ‘YES’ please document in care plans

If ‘NO’ please obtain information and discuss, document in care plans.

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

8

Please indicate the main findings of the Epilepsy Checklist

What actions are required to address the identified issues/risks/concerns?

Name of person responsible

When by

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

9

Risk Assessment Please tick relevant box

Yes No

P C P C

Medication

Have there been any recent medication changes in the general regime? (please state)

Have there been any recent changes in AED medication? (please state)

Currently what anti-epileptic medication are they taking? (please state)

Do they take more than one anti epileptic medication (AED)? (please state)

Are they compliant with their medication regime? (please state)

General Health Do they suffer from depression? (please state)

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

10

Please tick relevant box

Yes No

P C P C

General Health (Continued)

Is there a history of cardiovascular disease? (please state)

Are they alcohol or drug dependent? (please state)

Frequent fall or fractures from seizures (please state)

Head injuries (please state)

Awareness of risks involved with Daily Living Activities Epilepsy.org.uk. Has information on safety advice for people with epilepsy. Swimming (please record)

Cooking/cookers (please state)

Showers/bathing (please state)

Stairs (please state)

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

11

Please tick relevant box

Yes No

P C P C

Awareness of risks involved with Daily Living Activities

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

12

Please tick relevant box

Yes No

P C P C

Awareness of risks involved with Daily Living Activities (Continued)

Employment safety (please state)

Travel (please state)

Live alone (please state)

Sleep alone (please state)

Epilepsy Risks High seizure frequency (please state)

History of status epilepticus (please state)

History of prolonged seizures (please state)

Nocturnal seizures (please state)

Unobserved seizures (please state)

Please complete individual care plans for all identified seizure types Please complete a risk management plan to minimise the risk for each positive risk

identified.

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

13

INFORMATION FOR ADULTS WITH EPILEPSY AND THEIR FAMILY AND/OR CARERS National Institute for Health and Clinical Excellence (NICE) Guidance 2012.

Everyone providing care or treatment should be able to provide essential information.

Provide information in formats, languages and ways that are suited to the individual’s requirements.

Consider developmental age, gender, culture and stage of life.

Provide information before the person makes important decisions.

Set aside adequate time in the consultation to provide information.

Use checklists to remind both individuals and healthcare professionals about information that should be discussed during consultations.

Repeat the information at later consultations.

Ensure the person with epilepsy and/or their family or carers know how to contact a named member of the healthcare team to get the information they need.

Refer the person with epilepsy and/or their family or carers to sources of high-quality information (using the Internet, if appropriate: see, for example, the website of the Joint Epilepsy Council of the UK and Ireland, www.jointepilepsycouncil.org.uk). Epilepsy Action.

Discuss the possibility of having seizures, and provide information on epilepsy, before seizures occur for people at high risk of developing seizures (such as after severe brain injury), people with a learning disability, or people who have a strong family history of epilepsy

Information to provide

General information about epilepsy

o What epilepsy is? o Diagnosis o Reasons for tests and

what the results mean o Seizure type and

syndrome o Prognosis o Sudden unexpected

death in epilepsy (SUDEP – see below)

o Psychological issues o Managing risk o Self care

Seizures

o Type(s) o Triggers o Control

Treatment options

o AEDs, including indications, side effects, and licence status

o Action to be taken after a missed dose or after a gastrointestinal upset

o Reasons for referral (e.g. for surgery)

Lifestyle

o Employment o Independent living o Insurance issues o Disclosing epilepsy at work

(refer to voluntary organisations for further information)

o Child care o Driving o Alcohol o Recreational drugs o Sexual activity o Sleep deprivation o Family planning

Safety

o First aid o Safety in the home and at

work o Status epilepticus o Road safety

Support

o Support organisations (including contact details)

o Claiming benefits o Support from social services

Issues for women

o Contraception o Pregnancy o Breastfeeding o Menopause

CNTW(C) 20

Appendix 6

Cumbria Northumberland, Tyne and Wear NHS Foundation Trust Appendix 7 Epilepsy checklist and risk assessment– V06.3- Jan 2020 Part of CNTW(C)20 – CPA

14

Special groups People with learning disabilities

People with epilepsy who have learning disabilities should receive the same support and care as the general population of people with epilepsy. They also need the care of the learning disabilities team. GPP The management and treatment of epilepsy in a person who has learning disabilities should be undertaken by a specialist, working within a multidisciplinary team. Diagnosis and investigation

Confusion may arise between seizure activity and stereotypical or other behaviours.

Obtain eye-witness accounts plus corroborative evidence (e.g. a video account), where possible

Witnesses may need education to describe observations accurately. PP

Particular care and attention may be needed to help the person tolerate investigations. PP

Facilities should be available for imaging under anaesthesia, if necessary

Consider neuropsychological assessment in people with epilepsy in whom learning disabilities and cognitive dysfunction should be evaluated, particularly in regard to language and memory

Management

In developing the care plan, consider the possibility of adverse cognitive and behavioural effects of AED therapy. D

Explore every therapeutic option. B

There is a higher mortality risk for people with epilepsy and learning disabilities – discuss this with the individual, their family and/or carers GPP

Arrange a risk assessment, which includes:

bathing and showering

preparing food

using electrical equipment

SUDEP

managing prolonged or serial seizures

The impact of epilepsy in social settings

Independent living

SUDEP

There should be tailored information and discussion about the individual’s relative risk of SUDEP information should be part of the counselling checklist for adults with epilepsy and their families and/or carers.

The risk of SUDEP can be minimised by optimising seizure control and being aware of the potential consequences of nocturnal seizures.

Where families and/or carers have been affected by SUDEP, healthcare professionals should contact them to offer their condolences, invite them to discuss the death, and offer referral to bereavement counselling and a SUDEP support group.

Healthcare professionals have a responsibility to educate others about epilepsy so as to reduce the stigma associated with it. They should provide information about epilepsy to all people who come into contact with people with epilepsy, including school staff, social care professionals and others. Further information can be obtained from the epilepsy specialist nurse.