Skip to main content
  1. Right Decisions
  2. Scottish Palliative Care Guidelines
  3. Back
  4. Palliative emergencies
  5. Seizures
Announcements and latest updates

Right Decision Service newsletter: April 2024

Welcome to the Right Decision Service (RDS) newsletter for April 2024. 

Issues with RDS and Umbraco access

Tactuum has been working hard to address the issues experienced during the last week. They have identified a series of three mitigation measures and put the first of these in place on Friday 3rd May.  If this does not resolve the problems, the second mitigation will be actioned, and then the third if necessary.

Please keep a lookout for any slowing down of the system or getting locked out. Please email myself, mbuchner@tactuum.com and onivarova@tactuum.com if you experience any problems, and also please raise an urgent support ticket via the Support Portal.

Thank you for your patience and understanding while we achieve a full resolution.

Promotion and communication resources

A rotating carousel presenting some of the key RDS tools and capabilities, and an editable slideset, are now available in the Resources for RDS providers section of the Learning and Support toolkit.

Redesign and improvements to RDS

The redesign of RDS Search and Browse is still on-track for delivery by mid-June 2024. We then plan to have a 3-week user acceptance testing phase before release to live. All editors and toolkit owners on this mailing list will be invited to participate in the UAT.

The archiving and version control functionality is also progressing well and we will advise on timescales for user acceptance testing shortly.

Tactuum is also progressing with the deep linking to individual toolkits within the mobile RDS app. There are several unknowns around the time and effort required for this work, which will only become clear as the work progresses. So we need to be careful to protect budget for this purpose.

New feature requests

These have all been compiled and effort estimated. Once the redesign work is complete, these will be prioritised in line with the remaining budget. We expect this to take place around late June.

Evaluation

Many thanks to those of you completed the value and impact survey we distributed in February. Here are some key findings from the 65 responses we received.

Figure 1: Impact of RDS on direct delivery of care

Key figures

  • 93% say that RDS has improved evidence-informed practice (high impact 62%; some impact 31%)
  • 91% report that RDS has improved consistency in practice (high impact 65%, some impact 26%)
  • 85% say that RDS has improved patient safety (high impact 59%, some impact 26%)
  • Although shared decision-making tools are only a recent addition to RDS, and only represent a small proportion of the current toolset, 85% of respondents still said that RDS had delivered impact in this area (53% high impact, 32% some impact.) 92% anticipate that RDS will deliver impact on shared decision-making in future and 85% believe it will improve delivery of personalised care in future.

Figure 2 shows RDS impact to date on delivery of health and care services

 

Key figures

These data show how RDS is already contributing to NHS reform priorities and supporting delivery of more sustainable care.

Saving time and money

  • RDS clearly has a strong impact on saving practitioner time, with 90% of respondents reporting that this is the case. 65% say it has a high impact; 25% say it has some impact on time-saving.
  • It supports devolved decision-making across the multi-professional team (85% of respondents)
  • 76% of respondents confirm that it saves money compared, for example, to investing in commercial apps (54% high impact; 22% some impact.)
  • 72% believe it has impacted already on saving money and reducing waste in the way services are delivered – e.g. reducing costs of referral management, prescribing, admissions.

Quality assurance and governance

  • RDS leads are clear that RDS has improved local governance of guidelines, with 87% confirming that this is the case. (62% high impact; 25% some impact.)

Service innovation and workforce development

  • RDS is a major driver for service innovation and improvement (83% of respondents) and has impacted significantly on workforce knowledge and skills (92% of respondents – 66% high impact; 26% some impact).

New toolkits

A few examples of toolkits published to live in the last month:

Toolkits in development

Some of the toolkits the RDS team is currently working on:

  • SARCS (Sexual Assault Response Coordination Service)
  • Staffing method framework – Care Inspectorate.
  • SIGN 171 - Diabetes in pregnancy
  • SIGN 158 – British Guideline on Management of Asthma. Selected sections will be incorporated into the RDS, and complemented by a new chronic asthma pathway being developed by SIGN, British Thoracic Society and NICE.
  • Clinical pathways from NHS Fife and NHS Lanarkshire

Please contact his.decisionsupport@nhs.scot if you would like to learn more about a toolkit. The RDS team will put you in touch with the relevant toolkit lead.

Quality audit of RDS toolkits

Thanks to all of you who have responded to the retrospective quality audit survey and to the follow up questions.  We still have some following up to do, and to work with owners of a further 23 toolkits to complete responses. An interim report is being presented to the HIS Quality and Performance Committee.

Implementation projects

Eight clinical services and two public library services are undertaking tests of change to implement the Being a partner in my care app. This app aims to support patients and the public to become active participants in Realistic Medicine. It has a strong focus on personalised, person-centred care and a library of shared decision aids, as well as simple explanations and videoclips to help the public to understand the aims of Realistic Medicine.  The tests of change will inform guidance and an implementation model around wider adoption and spread of the app.

With kind regards

Right Decision Service team

Healthcare Improvement Scotland

Seizures

Introduction

Seizures (generalised or partial) occur most often in 10 to 15% of patients with palliative care needs due to primary or secondary brain tumours, cerebrovascular disease, epilepsy or biochemical abnormalities, for example low sodium, hypercalcaemia or uraemia. 70% of patients with brain tumours have seizures during the course of their illness. An advance care plan is particularly important for people at risk of seizures and may help to avoid unnecessary hospital admission.

 

Assessment

  • Eliminate other causes of loss of consciousness or abnormal limb or facial movement, for example vasovagal episode, postural hypotension, arrhythmia, hypoglycaemia, extrapyramidal side effects from dopamine antagonists.
  • Find out if the patient has had previous seizures or is at risk. Exclude history of epilepsy, previous secondary seizure, known cerebral disease and dementia.
  • Ensure there are no problems with usual anti-epileptic drug therapy – check patient is able to take oral medication. Drug interactions are common (for example corticosteroids reduce the effect of carbamazepine and phenytoin). Please check the British National Formulary (BNF).

 

Management

The management advice below is intended for situations where the standard medical protocols are unavailable or not assessed to be in the patient’s best interest.   

  • Choice of anti-epileptic drug is guided by seizure type, potential for drug interactions and co-morbidities. Consider discussion with epilepsy specialist when identifying seizure type and management plan for patient. The adverse effects and interactions profiles of these medications should be key in deciding management of individuals. Levetiracetam is better tolerated in patients aged 60 years and over.
  • Dying patients unable to take oral medication: anti-epileptic drugs have a long half-life, however ongoing management should be considered:
    • †Midazolam 5mg subcutaneously (SC). Buccal midazolam is another option and can be acceptable for patients. 
    • †Midazolam 20mg to 30mg via continuous subcutaneous infusion (CSCI) over 24 hours can be used as maintenance therapy.
    • †Subcutaneous levetiracetam via CSCI over 24 hours is an option to be considered. Conversion of oral to CSCI of levetiracetam is 1:1.

 

 Seizure management in patients unsuitable for standard medical management

Seizures flowchart

 

Tables are best viewed in landscape mode on mobile devices

Drug

Experience of use in syringe pump

Oral to CSCI conversion

Starting dose for seizures (over
24 hours)

Sedating effect

Guide dose titration

Midazolam

Extensive

NA

20mg to 30mg

Often

Increase by 5mg to 10mg every 24 hours

Levetiracetam*

Some

1:1

1g (or equivalent to current oral dose)

No

Increase by 500mg every 2 weeks (max 3g may need 2 syringe pumps)

Sodium Valproate*

Very limited (specialist advice)

1:1

1g

No

Increase by 200mg every 3 days (max 2.5g)

Phenobarbital*

Extensive (under specialist advice only)

Not applicable

200mg to 400mg (stat bolus of 100mg to 200mg IM/IV may also be needed)

Yes

Increase by 200mg every 24 to 48 hours

* Only for use in conjunction with advice from specialist palliative care.

If necessary, a combination of the above medications may be used. Seek advice from specialist palliative care.

 

Practice points

  • Midazolam injection is licensed for intravenous (IV), intramuscular (IM) and rectal use but it can also be given (unlicensed) via SC, CSCI, intranasal and buccal routes. There are newer buccal preparations available and these may be easier and maintain more dignity for the patient than rectal diazepam.
  • Although first seizures are not usually treated, for those with intracranial tumours, anti‑epileptic drugs are normally commenced following first seizure. There is no evidence of benefit of prophylactic anti-epileptic drugs (before any seizure occurs). 30% of patients with primary brain tumours have a seizure in the last week of life.
  • Consider commencement of (or review dose of) corticosteroid in those with intracranial tumour and seizure.
  • Levetiracetam and lamotrigine do not significantly induce enzymes and will have minimal interactions with other medications such as chemotherapy.
  • Monitor effect of medication which can lower seizure threshold such as QThaloperidol or levomepromazine; review need and dose if there is definite exacerbation of seizure activity as a result.
  • In patients with moderate to severe renal impairment defined by a creatinine clearance of less than 30ml/min/1.73m2, consider reducing levetiracetam dose to 250mg twice daily or 500mg/24 hours via syringe pump.
  • Seizures are frightening for patients and their families. Educate and address any concerns such as desired management of further seizures, management of risk of seizure recurrence if stopping anti-epileptic drugs, for example due to swallowing difficulties.
  • If relevant, it is important to remind patients that anti-epileptic drug treatment would be life-long and that there are implications for driving following seizures.
  • Buccolam® (midazolam 5mg/ml) is unlicensed for use in adults. Epistatus® (midazolam 10mg/ml) is unlicensed for use in adults. Check local policy for product choice.

 

References

Scottish Palliative Care Guidelines - Levetiracetam (Subcutaneous Infusion). 2018 [cited 2019 February 08]; Available from https://www.palliativecareguidelines.scot.nhs.uk/guidelines/medicine-information-sheets/levetiracetam-(subcutaneous-infusion).aspx

British National Formulary.2017. Available from https://www.medicinescomplete.com/mc/bnf/current/PHP-bnf-interactions-list.htm

BMJ Best Practice. Focal seizures. 2018 [cited 2018 Oct 04]; Available from: https://bestpractice.bmj.com/topics/en-gb/544.

BMJ Best Practice. Generalised seizures. 2018 [cited 2018 Oct 04]; Available from:https://bestpractice.bmj.com/topics/en-gb/543.

Dickman A, Schneider J. The Syringe Driver. 4th ed: Oxford University Press; 2016.

Freiherr von Hornstein W, editor. Levetiracetam continuous subcutaneous infusion in the management of seizures. First experience. Poster presentation IAPC Education & Research Seminar 2014.

Freiherr von Hornstein W, O'Gorman A, Richardson J, Wilson M, Carroll M, editors. Successful Management of Seizures until the End of Life using Levetiracetam Continuous Subcutaneous Infusion. Poster presentation NCRI Cancer Conference Abstracts; 2014.

Kerrigan S, Grant R. Antiepileptic drugs for treating seizures in adults with brain tumours. 2011 [cited 2018 Oct 04]; Available from: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD008586.pub2/epdf/standard.

Lopez-Saca JM, Vaquero J, Larumbe A, Urdiroz J, Centeno C. Repeated use of subcutaneous levetiracetam in a palliative care patient. J Pain Symptom Manage. 2013;45(5):e7-8.

NICE. Epilepsies: diagnosis and management CG137. 2018 [cited 2018 Oct 04]; Available from: https://www.nice.org.uk/guidance/cg137.

Pruitt AA. Medical management of patients with brain tumors. Continuum (Minneap Minn). 2015;21(2 Neuro-oncology):314-31.

Remi C, Lorenzl S, Vyhnalek B, Rastorfer K, Feddersen B. Continuous subcutaneous use of levetiracetam: a retrospective review of tolerability and clinical effects. J Pain Palliat Care Pharmacother. 2014;28(4):371-7.

Royal Pharmaceutical Society. BNF - Levetiracetam. 2018 [cited 2018 Oct 04]; Available from: https://www.medicinescomplete.com/#/content/bnf/_695768521.

SIGN. Diagnosis and management of epilepsy in adults No143. 2015 [cited 2018 Oct 04]; Available from: https://www.sign.ac.uk/our-guidelines/diagnosis-and-management-of-epilepsy-in-adults/.

Twycross R, Wilcock A, Howard P. Palliative Care Formulary PCF6. 6th ed. England: Pharmaceutical Press; 2017.