Developing a Pathway of Community Care Supports for People with Epilepsy in Ireland
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From: Department of Health
- Published on: 8 February 2021
- Last updated on: 8 February 2021
Epilepsy Ireland are supporting people with epilepsy in the self-management of their condition, thereby reducing demand on the acute care system.
This innovative project which is being funded through the Sláintecare Integration Fund offers an in-depth education session to patients shortly after they are diagnosed with Epilepsy.
Patients with a new diagnosis of Epilepsy are being referred to the intervention shortly after their first clinical appointment. They attend an online joint education session with an Epilepsy Nurse Specialist (ENS) or Advanced Nurse Practitioner (ANP) and an Epilepsy Ireland Community Resource Officer. They are provided with an in-depth education session which covers a range of topics covering diagnosis, medication, seizure triggers, lifestyle, employment/education, memory, cognition and wellbeing.
“The opportunity for people to have a dedicated education session is invaluable. It can be difficult for many people on receiving a diagnosis to retain all the information given to them at a time when they can still be reeling from the news of their diagnosis. These general epilepsy education sessions allow more time for the Epilepsy Nurse Specialist to go through in detail the information that a person needs to properly manage their condition”.
This session equips the patient with the information and knowledge that can assist them in beginning the self-management of their condition. Their immediate fears and worries are dealt with by the Community Resource Officer who can guide, support and reassure them through their journey. Reduction in the stress experienced after a diagnosis is a key benefit as stress and anxiety are known triggers for seizures.
“The Epilepsy Nurse Specialist holds the medical knowledge and the Community Resource Officers employed by Epilepsy Ireland are so knowledgeable in the areas that affect a person’s daily life including entitlements, lifestyle and triggers among others. This joint approach is the best of both worlds and participants can receive follow up support from the CRO after the session to ensure that any questions they may have are fully answered”.
Where there is an urgent need for an intervention through a referral from a clinician, Epilepsy Ireland has committed that the person will be provided with a one-to-one session within 5 days of receiving the referral.
By offering an in-depth education session to patients shortly after diagnosis, patients are provided with the full range of information that they require to assist in the self-management of their condition. This reduces the need for patients to re-engage with clinical staff on the non-medical issues and questions that can be dealt with by the Community Resource Officer. This means a holistic epilepsy service is offered to the patient through the collaboration and joint efforts of the clinical teams and the Epilepsy Ireland staff member.
“Patients and family members being better equipped to deal with active seizures is essential. An ambulance call-out is not always necessary but having the knowledge and confidence to be able to handle a seizure is key to this”.
Those who have attended the education sessions have reported through the evaluations that they have benefited from the intervention. The referrals to the Community Resource Officer has been a benefit to the patients who are provided with key person to link with and who can commit to providing a one-to-one appointment within five days if the clinician feels the next education session is too far away.
88% of participants reported an increase in their knowledge about their condition and were more aware of the things that can trigger seizures and how to prevent these.
81% reported that they were better equipped with the information needed to manage their medication and stated they were more confident about their knowledge of risks and safety regarding their epilepsy.
“Patients are more confident in dealing with their epilepsy and present with less stress. Stress is a known trigger for seizures for some, so a reduction in stress is a huge benefit to them”.
This innovative Sláintecare funded project will demonstrate how a joint approach between staff based in hospital, primary care and the community can work together, complement each other’s work, minimise duplication, make best use of scare resources thereby maximising value for money while improving the level and depth of contact with People with Epilepsy.
“It’s all about team work and how both the nurses and CROs work collaboratively together to give the patient the information they need at a time that suits them in their own homes. Both can tailor the sessions to the individual as well as providing general education sessions. Patients gain confidence to self-manage from consistent, clear, simple advice”.
Quotes from - Sinead Murphy, RANP, Beaumont Hospital.