Meet the Epilepsy Team
What do we do?
Here at the Children and Young People's Health Partnership (CYPHP), our specialist children's epilepsy nurses work with a children's pharmacist and emotional wellbeing professionals to make sure we are looking after your child and family as best we can. Emotional and behavioural issues are understandably common in children and young people with long-term or chronic conditions – no child or young person wants to be "ill" or "different" in a way they don't choose. At CYPHP we're here to help you and your family with all that concerns you and your child.
We can see you at your home or at a nearby clinic, and we make sure other healthcare professionals, who are involved in your child's care, know what is going on.
We have just started so cannot yet offer our service to children with epilepsy across all of Lambeth and Southwark but please do speak to your hospital doctor about us if you think you and your child could benefit from our service.
What we offer you and the benefits of the service.
A new Community Long Term Conditions service is being launched within Southwark & Lambeth. This service includes Paediatric Nurse Specialists, an Integrated Paediatric Pharmacist and Mental Health clinicians, who will see Children & Young People with a diagnosis of asthma and epilepsy.
Who will we see?
Children and Young People between the ages of 0-18 years old with a diagnosis of Epilepsy, who are treated at Guys and St Thomas’ or Kings College Hospital and who are register to a participating GP practice in Southwark and Lambeth.
All patients will be assessed and offered appropriate services. These may be:
- School training for individual students.
- Parent/Carer/ Patient/Peer support and training.
- Telephone, Email and Text contact on a 9-5 Monday-Friday basis.
- Peer –to- peer support clinics.
- Transition planning –Epilepsy nurses to offer transition package.
- Work with the long term conditions mental health clinicians and Paediatric Integrated Pharmacist
- Home visits/clinic appointments.
- Young people and families support and education around epilepsy and seizure management.
What is Epilepsy?
In order for us to complete daily activities our brain sends messages around the body through impulses along pathways known as nerves to other parts of our body. In epilepsy these impulses are disrupted and therefore cause the message either not to arrive or when it arrives the message is changed and therefore the body does not respond as it should. This can result in a seizure. It is similar to electricity in your home, for example to switch on a lamp electricity passes from the socket through the cable to the bulb in the lamp providing light. Sometimes there is a problem, epilepsy is like having a disrupted electricity supply whereby sometimes the light may switch on or it may flicker as the electricity is disrupted.
This is a very simplistic view of epilepsy and how your brain and impulses work is very complicated and it is important to be aware that not all seizures are a symptom of epilepsy.
Epilepsy can only be diagnosed by a qualified doctor who can tell you what type of seizures you are having.
There are many different types of epileptic seizures, please click this link for further information: Epilepsy Society
Q1. Can I still do sport with epilepsy?
Yes. We encourage all children and young people to take part in all sport in school and social settings.
We often get asked if swimming is ruled out, however we advise swimming in a supervised swimming pool is best and informing a lifeguard before you get in.
For more advice on individual activities, please click here:
Q2. How does epilepsy affect children and families?
Coming to terms with having epilepsy takes time and can be tricky. Often the whole family is involved in the journey of adjustment to the diagnosis of epilepsy for individual children; a range of reactions are common in siblings and parents including frustration, stress, worry, anger and jealousy (particularly for siblings). This is due to the physical symptoms of epilepsy but also to the emotional, social and psychological implication of having a chronic physical health condition as well as some of the behavioural / lifestyle changes related to the management of asthma symptoms.
Some children and young people will find the process of adjustment difficult but will be able to manage with support from family, school, friends and the health care professional involved in the management of asthma symptoms. For other children and young people, things might be more challenging and they might experience low mood, feelings of anxiety or anger and / or changes in behaviour.
Additional help for children. young people and their families is at hand to help with these emotions and behavioural changes - see FAQs below.
Q3. Can you catch epilepsy?
No. Epilepsy in not contagious like a common cold.
Q4. Is epilepsy a disability?
As there are different types of epilepsy that can influence the way people live it is hard to answer yes or no to this question,
Please have a look at this links below for further information:
- What benefits might I apply for?
- People with epilepsy are covered by the Equality Act - find out more here
Q5. Can I drive if I have epilepsy?
Yes and No.
- Yes if you have been seizure free for two years or if you only have seizures during sleep.
- No if you have regular seizures or your seizures are poorly controlled.
Please have a look at this links below for further information:
Q6. What happens if I don’t take my medication and what do I do if I miss a dose?
If you do not take your medication you are more vulnerable to having a seizure.
If you are late taking your medication you must take it as soon as you remember.
You should never stop your medication suddenly and it is important you seek advice from your doctor or nurse even if you feel the medication is giving you side effects.
If you have any questions about your medication or are worried at any time please contact your pharmacists, doctor or nurse. Remember no question is a silly question!
For more information please click here: http://www.epilepsy.com/learn/triggers-seizures/missed-medicines
You can search for more information about your medicines using the Medicines For Children’s Website which is written by doctors and pharmacists for families.
Search here: http://www.medicinesforchildren.org.uk/
Q7. Can I drink alcohol or take drugs when I am older?
Whether to drink alcohol or take recreational drugs is a personal choice, but it is worth knowing the possible effects they could have on your epilepsy. Alcohol or recreational drugs can cause epilepsy in some people.
We never condone any experimentation with drugs. However, there are some useful sites that can give you further information advice and support around taking health impacting risks.
If you are taking epilepsy medication and have further questions around the impact of drugs and alcohol, please do contact pharmacist and or the epilepsy nurses.
Below are some useful links:
Q8. Can I still have children when I am older?
Yes you can. Epilepsy will not affect the reproductive system.
However some medication can have an effect so make sure to ask your doctor, nurse or neurologist before starting any new medication.
Please see here for more information: https://www.epilepsysociety.org.uk/starting-family-preconception
Q9. If I have epilepsy will my children have epilepsy?
Not necessarily – some people can inherit epilepsy from their families but this is certainly not everyone.
Please see here for more information: https://www.epilepsy.org.uk/info/inheriting-epilepsy
Q10. Will epilepsy affect my school exam results and me achieving in life?
No. You may require extra time in your exams (Your school teacher will be able to give you advice on this).
Epilepsy should not stop you from reaching your goals.
There are many famous people who have a diagnosis of epilepsy such as American singer Prince, Lil Wayne, Elton John, Danny Glover and for you history buffs Napoleon Bonaparte and Theodore Roosevelt.
Please see here for more information: https://www.epilepsy.org.uk/info/education/learning-and-behaviour
Q11. What should I do if I am worried about the impact of the diagnosis of epilespy on my child's / teenagers' emotional wellbeing and / or behaviour?
Having a diagnosis of epilepsy and receiving treatment can bring additional emotional distress. Children / young people might feel angry, sad, worried, confused, frightened, lonely or embarrassed. These are very normal feelings but can be difficult to deal with. Epilepsy can at times be unpredictable and can impact lifestyle, peer and family relationships.
Epilepsy might also have a negative impact on school attendance and may result in getting behind on school work.
Epilepsy is unpredictable and so can impact lifestyle, peer and family relationships. Epilepsy might impact shool attendance if you are unwell and therefore you might get behind on school work. It might be difficult to think ahead and look forward to the future because of a long term physical health condition.
This website is helpful in identifying changes in a child's / young person behaviour at home and school which might indicate depression or anxiety. About Kids' Health - Epilepsy and Emotions
It can be hard for parents to start a conversation with their children / young people about how they are feeling. Parents might be worried about making whatever is bothering them worse by asking them about it - it won't - the most important thing is to start talking with your child / young person so that they can get the help they need.
Getting teenagers to talk openly about what is bothering them can be particularly difficult. Try using some of the tips contrained her to start the conversation: NHS Live Well - Talking to Teens. Or go to the Young Minds parents' helpline for advice: Young Minds Parents' Helpline
Trying once is often not enough to get to the bottom of things so if you've tried several times and your child / teenager still isn't opening up, try talking to their teachers or close family members to see if they can shed any light.
You might be specifically concerned about the impact of the diagnosis of epilepsy on your child's emotions, behaviour and general wellbeing. This is a relatively common situation as children / young people with chronic health conditions can be more prone to developing emotional / mental health issues for a number of reasons. This may include depression, anxiety but also a range of behavioural issues.
Depression can make children feel worthless, empty, tired or restless. They may have trouble sleeping, lose their appetite, feel confused and have no energy.
Anxiety can make children worry excessively about things, or worry that something will happen to them or someone in the family. They may think about or talk more frequently about death.
It is important in the first instance to discuss your concerns about your child's / teenager's emotional wellbeing and / or behaviour with the health professional/s looking after your child, in order to determine whether additional help would be needed.
Q12. How do I know if my child / teenager needs more help with their emotional wellbeing, mental health and / or behaviour?
It can be difficult to talk to health care professionals about your concerns. Think about:
- Being as open and honest as you possibly can. This might be difficult the first time around, especially if you don't know your health care professional very well, but say what you can. This video from the charity MInd has some useful tips on how to prepare:
- Don't worry if you don't really know what the problem is or that it might not seem important enough - your health care professional is there to help you with the emotional wellbeing of your child / teenager every bit as much as they are there to help you with their physical symptoms.
It can be helpful to get a baseline and track symptoms which can inform the conversation you have with a health care professional.
One way of tracking difficulties with sleeping is to do a sleep diary.
Here are some web links to help create a sleep diary which can then be shared with health care professionals: https://www.mind.org.uk/information-support/types-of-mental-health-problems/sleep-problems/?o=6835#.WYmI59Ff02w and http://slidellmemorial.org/Images/Interior/services/teendiary.pdf
A useful way of tacking changes with mood is a mood diary. This can help you keep track of any changes in your child's mood, and you might find that there are more good days than you think. It can also help you notice if any activities, places or people make your child feel better or worse.
Go to this web link to create your own mood diary: https://www.getselfhelp.co.uk/docs/MoodDiary2.pdf
Check with your child's school if they have any concerns, noting any changes in their behaviour or academic achievement and see if this corresponds with what your child says and what you have noticed as a parent.
For situations where symptoms do not require specialist intervention but a little extra help would be useful, see the following:
- You might want to see if you are doing all that you can to ensure you get a good night's sleep by checking out these websites: http://youth.anxietybc.com/faq/trouble-sleeping and http://www.moodjuice.scot.nhs.uk/sleepproblems.asp
- Here is a web link for you to access an app which helps with anxiety: Mindshift app
- Here are videos of young people coping with anxiety: Teen Truths
- Here is a web link which has information and exercises to help with depression: http://www.moodjuice.scot.nhs.uk/depression.asp
If you are not sure and would like to find out more about mental health difficulties, how they might present and what help is available, these websites are helpful to access:
Here is some good information on how parents can support their child if they are struggling with their behaviour or mood: Helping Your Child
Q13. Is light going to affect me and can I go to the cinema and watch TV?
Seizures that are triggered by light are also known as photosensitive epilepsy. Photosensitive epilepsy is not common but it may be diagnosed when you have an EEG test. Flashing or patterned effects can make people with or without epilepsy feel disorientated, uncomfortable or unwell. This does not necessarily mean they have photosensitive epilepsy.
If a child is not affected by light then they can watch television and go to the cinema as much as any other child. Please see the link below for further information on photosensitive epilepsy:
Q14. Can I believe all information on the internet?
Some of the advice found on the internet can be very scary and not give a full and true picture. That is why we advise to speak with the people listed below and/or have a look at trusted websites e.g. Epilepsy action, young epilepsy, Epilepsy Society.
Q15. If I have a question about epilepsy who do I ask?
We advised that no question is a silly question. Your options for support and further advise are
- Epilepsy nurse
- General practitioner (GP)
- Trusted websites e.g. Epilepsy action, young epilepsy, epilepsy society.
Q16. As a parent, young person or child how do I tell my friends/ family members?
We do advise the friends and family you are close to are aware that you have epilepsy so that they can know what to do and not panic if you have a seizure.
We know it can be hard and there is support out there to help you have these conversations.
Epilepsy is a long term condition in much the same way as asthma or diabetes and is nothing to be ashamed or embarrassed of.
However, we do understand that people have some very different ideas about epilepsy and what it means. It is therefore very important that you understand what epilepsy and seizure are so that you can help them to understand. We are here to help you have these conversations.
Q17. Should I compare symptoms and treatments with other children with epilepsy?
It may be tempting to do this, everyone who has a diagnosis of epilepsy will have a treatment plan best suited to them.
We are all different and there is not one treatment plan that works for everybody.
However, we do encourage friendly support from others with epilepsy and parents often find it helpful to talk to each other too.
If you ever have any questions please do contact us as we are here to help.
Q18. Should my child be treated/disciplined differently from their siblings?
You will find that because your child has a diagnosis of epilepsy the temptation is to be more lenient towards them.
This, however, may not be helpful in the long run and can lead to behavioural difficulties.
We do advice that as much as possible your child is treated the same way as other children both at home and school. This will help your child to normalise his/her condition and lead as fulfilling a life as possible. There are some safety issues that may need consideration but you and your child will get use to these pretty quickly.
Please see this link for safety advice in the home: http://www.youngepilepsy.org.uk/for-parents-and-carers/epilepsy-and-your-child/epilepsy-and-child-safety.html
Q19. How can I help my child stay safe at home and in the external environment?
Independence is something we all want to achieve. There are a few slight changes we would recommend to make sure your child is safe:
- When your child is in the bathroom, make sure the door is not locked so you can help your child as required.
- If your child is having a bath, make sure a responsible person is keeping an eye on them. If your child is a teenager then respect their privacy, but it is advised to have showers rather than baths and not to lock the door.
- Swimming: If your child has well controlled seizures, swimming is encouraged for good exercise, but make sure the lifeguard and swimming instructor is aware the child has epilepsy. It is also good to have an allocated adult to watch the child.
- Avoid climbing anything higher than the child's height unless the child has a harness to support them.
- Driving - yes and no. Yes if you have been seizure free for two years or if you only have seizures during sleep. No if you have regular seizures or your seizures are poorly controlled. Please have a look at these links for further information: https://www.epilepsy.org.uk/campaigns/epilepsy-week/2013/driving and https://www.gov.uk/epilepsy-and-driving
- Riding a bike or horse: if your seizures are well controlled then this is another great activity for exercise and staying healthy. But make sure you wear a helmet and that a responsible adult is aware. Try to also avoid busy roads.
- You can wear medical identification bands so that if anything were to happen then someone can understand your condition and help you.
- School trips - we advise that a child with epilepsy should attend school trips. It is advised that a risk assessment is completed prior to the trip to make it as safe as possible. Make sure there is an up to date care plan in place and emergency medication if taken (if prescribed by your doctor). Finally, staff at school should be trained to help your child should a seizure occur.
- Medication - if you have been prescribed medication then make sure to take it as the doctor has told you to. There are lots of different ways to remind you and your child to take it e.g. sticker charts, setting phone alarms, medication apps for phones and medication boxes.
- Skiing - please have a look at this link: http://www.youngepilepsy.org.uk/news-and-events/news/winter-sports-skiing-and-epilepsy.html
- For more information on safety, please have a look at the following link: http://www.youngepilepsy.org.uk/for-parents-and-carers/epilepsy-and-your-child/epilepsy-and-child-safety.html
Q20. How can I help my child stay safe when travelling?
- There are a few things to be mindful of when travelling:
- Make sure you have enough medication to last the holiday and take and extra week's supply just in case you get delayed. Keep medication in your hand luggage as well as your main bag.
- Take your last clinic letter with you explaining your diagnosis and what medication you are taking.
- Avoid becoming over tired or dehydrated - encourage lots of water if you are in a hot country and be mindful of late nights and also flight times.
- Have a look and see if your holiday insurance covers your child's condition and the area you are travelling to.
- Finally, have a look to see where the nearest hospital is just in case you need to seek treatment or advice.
- Take the contact number of your allocated medical professional in case clarity is required by a medical professional.