Tuesday 29th September 2015
Mac Voice, the magazine for Macmillan professionals: Autumn 2015
Claire Hall and her colleagues have taken steps to help people prepare for potential seizures
Seizures are a common and potentially devastating complication for people with primary or secondary brain tumours. In general, around 60% of people with brain tumours will experience at least one, and if they and their families are not adequately prepared for the risk, it can be a very distressing experience.
Can oral drugs help?
In some cases, an anti-epileptic drug may be prescribed to anticipate seizures. When it comes to how effective these drugs are for people with brain tumours, there is a lack of research. There can also be other potential complications, such as a general tendency towards greater drug-resistance, where brain tumour-related seizures are happening. These anticipatory drugs may therefore not always be suitable, and it is often down to individual clinical discretion as to whether they are prescribed.
Where they are prescribed and work well, the effects of anti-epileptic drugs can last a long time in the body. This can allow care teams more time to review and plan further care in a controlled manner.
How we help people manage
As a Macmillan clinical nurse specialist (CNS) working within a hospital palliative care team, I have taken the lead in looking at ways we can help people prepare for seizures.
We have created an information leaflet for patients and carers on managing seizures, and provide them with an individualised management plan. This is a joint venture involving palliative care consultants, pharmacists, epilepsy nurses and my Macmillan CNS colleagues.
The leaflet provides a plan to cope with any seizures that occur and gives basic first aid steps that should be taken.
Most seizures are self-limiting and require only supportive care. For those experiencing more prolonged seizures, the leaflet provides a step-by-step guide on administering Buccolam. This drug can be used when the person has a ‘generalised’ seizure lasting more than five minutes without any sign of them recovering. Buccolam is dispensed in pre-filled syringes to reduce the burden for families that find themselves in this situation.
Allowing families to be proactive
These supportive measures provide families with the tools to be proactive should a seizure arise. They also allow people to have symptom control in their end of life care. This is particularly important given evidence that most people would prefer to be cared for at home.
This practical resource has been extremely valuable in providing all parties with the information they require. Positive feedback from families, expressing the reassurance it provides them with and how it allows them to keep their loved ones in their preferred place of care, only emphasises the impact a simple idea has had.
Macmillan clinical nurse specialist
Nottingham University Hospitals NHS Trust
0115 969 1169
1. The Brain Tumour Charity. Epilepsy (seizures) and brain tumours. Fact sheet. December 2014.
2. Macmillan. Time to choose: Making choice at the end of life a reality. October 2013.