Skip to main content
  1. Right Decisions
  2. Scottish Palliative Care Guidelines
  3. Back
  4. Palliative emergencies
  5. Seizures
Important: please update your RDS app to version 4.7.3

Welcome to the March 2025 update from the RDS team

1.     RDS issues - resolutions

1.1 Stability issues - Tactuum implemented a fix on 24th March which we believe has finally addressed the stability issues experienced over recent weeks.  The issue seems to have been related to the new “Tool export” function making repeated calls for content when new toolkit nodes were opened in Umbraco. No outages have been reported since then, and no performance issues in the logs, so fingers crossed this is now resolved.

1.2 Toolkit URL redirects failing– these were restored manually for the antimicrobial calculators on the 13th March when the issue occurred, and by 15th March for the remainder. The root cause was traced to adding a new hostname for an app migrated from another health board and made live that day. This led to the content management system automatically creating internal duplicate redirects, reaching the maximum number of permitted redirects and most redirects therefore ceasing to function.

This issue should not happen again because:

  • All old apps are now fully migrated to RDS. The large number of migrations has contributed to the high number of automated redirects.
  • If there is any need to change hostnames in future, Tactuum will immediately check for duplicates.

1.3 Gentamicin calculators – Incidents have been reported incidents of people accessing the wrong gentamicin calculator for their health board.  This occurs when clinicians are searching for the gentamicin calculator via an online search engine - e.g. Google - rather than via the health board directed policy route. When accessed via an external search engine, the calculator results are not listed by health board, and the start page for the calculator does not make it clearly visible which health board calculator has been selected.

The Scottish Antimicrobial Prescribing Group has asked health boards to provide targeted communication and education to ensure that clinicians know how to access their health board antimicrobial calculators via the RDS, local Intranet or other local policy route. In terms of RDS amendments, it is not currently possible to change the internet search output, so the following changes are now in progress:

  • The health board name will now be displayed within the calculator and it will be made clear which boards are using the ‘Hartford’ (7mg/kg) higher dose calculator
  • Warning text will be added to the calculator to advise that more than one calculator is in use in NHS Scotland and that clinicians should ensure they access the correct one for their health board. A link to the Right Decision Service list of health board antimicrobial prescribing toolkits will be included with the warning text. Users can then access the correct calculator for their Board via the appropriate toolkit.

We would encourage all editors and users to use the Help and Support standard operating procedure and the Editors’ Teams channel to highlight issues, even if you think they may be temporary or already noted. This helps the RDS team to get a full picture of concerns and issues across the service.

 

2.     New RDS presentation – RDS supporting the patient journey

A new presentation illustrating how RDS supports all partners in the patient journey – multiple disciplines across secondary, primary, community and social care settings – as well as patients and carers through self-management and shared decision-making tools – is now available. You will find it in the Promotion and presentation resources for editors section of the Learning and support toolkit.

3.     User guides

A new user guide is now available in the Guidance and tips section of Resources for providers within the Learning and Support area, explaining how to embed content from Google Calendar, Google Maps, Daily Motion, Twitter feeds, Microsoft Stream and Jotforms into RDS pages. A webinar for editors on using this new functionality is scheduled for 1 May 3-4 pm (booking information below.)

A new checklist to support editors in making all the checks required before making a new toolkit live is now available at the foot of the “Request a new toolkit” standard operating procedure. Completing this checklist is not a mandatory part of the governance process, but we would encourage you to use it to make sure all the critical issues are covered at point of launch – including organisational tags, use of Alias URLs and editorial information.

4.Training sessions for RDS editors

Introductory webinars for RDS editors will take place on:

  • Tuesday 29th April 4-5 pm
  • Thursday 1st May 4-5 pm

Special webinar for RDS editors – 1 May 3-4 pm

This webinar will cover:

  1. a) Use of the new left hand navigation option for RDS toolkits.
  2. b) Integration into RDS pages of content from external sources, including Google Calendar, Google Maps and simple Jotforms calculators.

Running usage statistics reports using Google analytics

  • Wednesday 23rd April 2pm-3pm
  • Thursday 22nd May 2pm-3pm

To book a place on any of these webinars, please contact Olivia.graham@nhs.scot providing your name, role, organisation, title and date of the webinar you wish to attend.

5.New RDS toolkits

The following toolkits were launched during March 2025:

SIGN guideline - Prevention and remission of type 2 diabetes

Valproate – easy read version for people with learning disabilities (Scottish Government Medicines Division)

Obstetrics and gynaecology induction toolkit (NHS Lothian) – password-protected, in pilot stage.

Oral care for care home and care at home services (Public Health Scotland)

Postural care in care homes (NHS Lothian)

Quit Your Way Pregnancy Service (NHS GGC)

 

6.New RDS developments

Release of the redesign of RDS search and browse, archiving and version control functionality, and editing capability for shared content, is now provisionally scheduled for early June.

The Scottish Government Realistic Medicine Policy team is leading development of a national approach to implementation of Patient-Reported Outcome Measures (PROMs) as a key objective within the Value Based Health and Care Action Plan. The Right Decision Service has been commissioned to deliver an initial version of a platform for issuing PROMs questionnaires to patients, making the PROMs reports available from patient record systems, and providing an analytics dashboard to compare outcomes across services.  This work is now underway and we will keep you updated on progress.

The RDS team has supported Scottish Government Effective Prescribing and Therapeutics Division, in partnership with Northern Ireland and Republic of Ireland, in a successful bid for EU funding to test develop, implement and assess new integrated care pathways for polypharmacy, including pharmacogenomics. As part of this project, the RDS will be working with NHS Tayside to test extending the current polypharmacy RDS decision support in the Vision primary care electronic health record system to include pharmacogenomics decision support.

7. Implementation projects

We have just completed a series of three workshops consulting on proposed improvements to the Being a partner in my care: Realistic Medicine together app, following piloting on 10 sites in late 2024. This app has been commissioned by Scottish Government Realistic Medicine to support patients and citizens to become active partners in shared decision-making and encouraging personalised care based on outcomes that matter to the person. We are keen to gather more feedback on this app. Please forward any feedback to ann.wales3@nhs.scot

 

 

Seizures

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.

 

  • 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).

 

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.

 

  • 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.

 

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.