In recognition of National Epilepsy Week, #nationalepilepsyweek , we thought we would pull together some great information from The Foundations nursing team. Read all about how we look after epilepsy and read some of our frequently asked questions on epilepsy.
Epilepsy In The Percy Hedley Foundation
Within the Percy Hedley Foundation our team of highly skilled nurses, education, care and residential staff are qualified to administer emergency medication to the children and people in their care following NHS seizure plan.
Every child, young person or adult in The Foundation with Epilepsy has their own personalised seizure plan which contains information on their seizures (triggers, what seizures look like) and how and these are controlled.
The Foundation also operates a `yellow bag procedure`. This yellow bag is provided to everyone who may require emergency medication and contains their medication and any care plan information.
These bags are locked and then always kept on the person at all times, in a convenient place. This ensures, not only that we keep all medication confidential but also that the medication is always quickly on hand should it be required.
Frequently Asked Questions About Epilepsy.
What is Epilepsy?
Epilepsy is a neurological condition that affects the brain and causes recurring seizures or fits. Due to an uncontrolled increase of excess electrical activity in the brain interfering with the normal functions, this causes a short interruption to the relay of messages in the brain.
What causes Epilepsy?
Epilepsy can be caused by various conditions that affect a person’s brain. Some of the known causes include:
• Brain tumour.
• Brain infection from parasites (malaria, neurocysticercosis), viruses (influenza, dengue, Zika), and bacteria.
• Traumatic brain injury or head injury.
• Loss of oxygen to the brain (for example, during birth).
• Some genetic disorders (eg. Down syndrome).
• Other neurologic diseases (eg. Alzheimer’s disease).
For 2 in 3 people, the cause of epilepsy is unknown. This type of epilepsy is called cryptogenic or idiopathic.
How many people have Epilepsy?
Approximately 600,000 people in the United Kingdom are diagnosed with epilepsy, affecting people of all ages, from newborns to the elderly.
This is the equivalent of 1 in every 103 people.
Every day 87 people are diagnosed with epilepsy.
What is a seizure?
An epileptic seizure results from a sudden electrical discharge in the brain that causes changes in sensation, behaviour or consciousness.
Seizures can take many forms because the brain is responsible for such a wide range of functions. Seizure symptoms depend on where in the brain this abnormal burst of electrical activity happens.
How long do seizures last?
As a result of the electrical activity, there are many different types of seizures – most usually last from a few seconds to a few minutes and usually stop without any treatment.
Are all seizures the same?
There are 40 different types of seizures and people may have one of several different types. Approximately 60% of people have tonic clonic seizures, 20% complex partial, 12% mixed tonic clonic and partial, 3% simple partial and less than 5% absence seizures, myoclonic seizures and other types.
Are Epilepsy seizures caused by light?
Approximately 3% of people diagnosed with epilepsy are photosensitive, which means their seizures are brought on by flashing lights.
What to do if someone has an epileptic seizure?
If you see someone having a seizure or fit, there are some simple things you can do to help. You should call 999 for an ambulance if you know it’s their first seizure or it’s lasting longer than 5 minutes.
It might be scary to witness, but do not panic.
If you’re with someone having a seizure:
- only move them if they’re in danger, such as near a busy road or hot cooker
- cushion their head if they’re on the ground
- loosen any tight clothing around their neck, such as a collar or tie, to aid breathing
- turn them on to their side after their convulsions stop – read more about the recovery position
- stay with them and talk to them calmly until they recover
- note the time the seizure starts and finishes
If the person is in a wheelchair, put the brakes on and leave any seatbelt or harness on. Support them gently and cushion their head, but do not try to move them.
Do not put anything in their mouth, including your fingers. They should not have any food or drink until they have fully recovered.
When to call an ambulance
Call 999 and ask for an ambulance if:
- it’s the first time someone has had a seizure
- the seizure lasts more than 5 minutes
- the person does not regain full consciousness, or has several seizures without regaining consciousness
- the person is seriously injured during the seizure
People with epilepsy do not always need to go to hospital every time they have a seizure.
Some people with epilepsy wear a special bracelet or carry a card to let medical professionals and anyone witnessing a seizure know they have epilepsy.
Check out more stories about The Percy Hedley Foundation here.
There are many diverse and interesting roles at The Percy Hedley Foundation. So, with this in mind, we would like to share some “Day in the life of….” features on our blog over the coming weeks.
First up! Our Physiotherapist Fiona Jenkins has kindly shared an insight into her role as a Physiotherapist.
Why and how did you become a college physiotherapist?
After A-levels, I attended Northumbria University for six years and took two degrees back to back — biomedical science and physiotherapy. I qualified as a physio in 2008, and then worked in the NHS until 2015 specialising in neurology. But that year I also came back off maternity leave and needed a better work-life balance because my NHS job involved working weekends, being on call through the night, and on shift over Christmas and Easter. A job came up at the college and I got it!
How challenging was the transition from NHS to college?
I moved from my NHS specialism, neurology, and working with patients with MS or who had suffered stroke and brain injuries – to supporting young people aged 18-25 with learning disabilities, so it was about getting my head around communicating with people unable to talk or with profound disabilities and come up with new strategies – eg trying to treat students and have a really good rehab session. I had to adapt and work closely with other staff in college such as speech and language therapists. You have to look at how to get the best out of a particular student by working with the whole team around you and getting them to focus on how you want to proceed to achieve their target.
What’s your main role?
I started in 2015 as a senior physio when student numbers had doubled in one year. In early 2020 I became the college therapy team lead so I now operationally manage occupational therapists, speech and language therapists, and physios. Most of my week is spent working clinically as a physio offering various forms of hands-on physiotherapy. I have regular contact with staff, students and parents, make referrals to different specialists, and undertake colleagues’ performance reviews, and look at how we can improve quality and develop our services.
What’s a typical day?
I start at 8.30am with a staff meeting to discuss current issues or something coming up during the term. Teaching sessions run from around 9.30am to 3.30pm; we will either go into a session and integrate our therapy into that class or pull a student out of class and do, say, hydrotherapy or rebound therapy (on the trampoline). It could be a one- to-one session depending on a student’s needs. Twice weekly we have in-service training after work where we might teach staff new techniques or complete training.
Approximately six students are in any one group (they may have cerebral palsy, autism or a range of other disorders and disabilities); not all students in any one group will have the same physical disabilities. We might, for instance, support a student in a maths session to use a standing frame or complete physio during the session so they are not just sitting in their wheelchair. Unlike NHS physios who would complete an initial assessment, set up a programme and then come back to review it six weeks later, we stay with the students, tweak their programmes as needed, and are really flexible in meeting their needs. We can therefore give very clear advice to the SSAs and tutors.
After daily sessions finish, we write up our notes, and are regularly completing reports for local authorities – even though we are not part of the NHS, we still have to follow Chartered Society of Physiotherapy guidelines and the health standards of our regulatory body, the Health and Care Professions Council.
Any significant tasks you have done recently?
We have been restructuring our adult services within the Percy Hedley Foundation, which incidentally also includes College. We are recruiting heavily and I am supervising a new team of therapists, meaning I have been doing less clinical work in order to sort out a structure for the Hedleys Horizons service.
How are you coping with Covid-19?
It’s really challenging. Lots of students with respiratory problems would have been shielding; many have not returned to college this term even now. We’ve had to adapt, offering ‘out-patient’ clinics, home visits and remote online therapy sessions using the Microsoft Teams platform during which we monitor how students are coping with their exercise programmes and liaise with parents.
We don’t do A-levels. All students have their own Education Health and Care plans – some have mild physical disabilities but are cognitively very able while others have profound and multiple learning disabilities. We have a large autistic cohort, including many students with behavioural, rather than physical difficulties, who require occupational therapy. Everyone’s needs are so variable and that makes it really interesting. It’s quite a special time to work with this age group as you are setting them up for adulthood.
What’s the most challenging aspect of your role?
Funding! Not all students automatically get their therapy funded so we have to assess them and recommend the therapy they need to the local authority for a decision. The problem comes when someone up to now has had therapy sessions every week, then at 18 they move to adult services and sometimes lose funding streams and deteriorate as a result. We have to fight for it through appeals and evidence and its getting harder and harder.
An achievement you are really proud of?
Guest lecturing at Sunderland University. We clinically supervise physiotherapy students who do placements with us and the university asked us to run sessions on learning disabilities. We talked about not assuming things about people based on how they present themselves, and get great feedback. It’s rewarding as we get to open new physiotherapists eyes to a less popular speciality within physiotherapy practice.
Personal qualities and skills needed in your job?
Good communications skills, the ability to see much more than speech as the way forward with people, and patient listening skills to understand that individual’s needs and thus get the best out of them. Plus being really flexible as every day can quickly change, particularly during the pandemic.
You need a BA in physiotherapy, or you can opt to do a masters. You need experience in all the other areas related to physiotherapy -working in the NHS means you rotate around all the core subjects/services and then you can start deciding which areas of physiotherapy you want to specialise in. I quickly went into neurology as that was what I really enjoyed and now it’s begun to play a substantial role in the learning side of disability. But without my general NHS experience of orthopaedics, musculoskeletal, respiratory issues and other areas I’d not have the confidence to do my current job.
What do you really enjoy doing at college?
Seeing students who are very physically disabled on land and need support in everything enter a hydropool and swim by themselves, completely independently. It’s particularly good to give many students that sort of freedom to stop them deteriorating when they come to us because of often scant adult funding.
Examples of students who have achieved something special?
We have a couple of students who are ambassadors for disability with Newcastle United FC – they are so proud of this achievement and raise the profile of equality in sport. Also, one year ago we held a big sponsored fundraiser for Sport Relief and raised £1,200 – every student did some form of movement for a set period – whether it was swimming, jumping, walking, treadmilling – even though they might normally not have been able to do it.
What spurs you on to work each day?
Watching a student grow in confidence, especially those with physical disabilities. They may have spent a long time restricted by school rules and then realise they can, say, call teachers by their first names. This allows the nature of relationships to change and independence to blossom. We all support each other and work together as one big unit.
Regular blogger Abbie is affected by Cerebral Palsy, Pierre Robin Syndrome, a hearing impairment and speech and language difficulties. From a very young age she had to learn different ways to communicate because of this. In her latest blog, Abbie talks about how she adapted her communication methods and the vital support she received from the Foundation’s Speech and Language therapists.
I have always had a hearing impairment. I think I was about 3 when I started wearing hearing aids. I used to wear a hearing aid battery box – which was separate to my hearing aids (hearing aid technology has come a long way since then!)
When I was at school, maybe 6 or 7, I start driving my power wheelchair. When I first started driving my powerchair, I felt scared, because it was new, but with practise I’m alright!
I don’t remember exactly when I got my first VOCA (Voice Output Communication Aid), it was a long time ago. I was maybe about 5 years old. At first, I just played with it, pressing buttons to see what they did, this is one way I learned to communicate with it. I wasn’t sure how I was doing at first but with experience realised that I could talk to people. I met a Speech and Language Therapist on my first day of school and as well as my own hard work, they also helped me to learn how to use my VOCA.
I also use BSL (British Sign Language) to communicate. I have always known a little bit of Sign Language but, when I went to Percy Hedley College I learnt more. My friend is a very fast signer, I can understand her when she signs slowly but sometimes need to tell her to slow down! I have also helped other people to learn some Sign Language, I know it helps us to work better together. My mum and sister went to learn BSL at Newcastle College so we can now Sign together.
I know I have learned a lot from when I was young and have come a long way in my communication. People I work with now say I am a really good communicator and that I teach them how to communicate better!
To read more blogs click here.
Abbie’s Story: Talking with my nieces
Abbie is a young lady affected by Cerebral Palsy, Pierre Robin Syndrome, a hearing impairment and speech and language difficulties. In her latest blog, she talks about communicating with her young nieces.
I have two beautiful nieces, Ava is 6 years old and Rose is 4 years old. I used to babysit every Monday and some Fridays. I just played with them with their toys and games and on some Fridays they come over for sleep overs.
Rose loves the film ‘Frozen’, she keeps singing “Let it go”! Ava loves ‘How to Train your Dragon’ and her favourite film is ‘Toothless’. I love my nieces but they are cheeky monkeys!
They ask me to put music on my phone of ‘Little Mix’. Ava started Beavers every Monday but Rose goes to my brother-in-law’s Mum’s house.
Ava stands in front of me all the time. She knows I am deaf and she understands why it helps. I use British Sign Language [BSL]. Ava can also Sign a little and Rose knows some Sign. My sister Kelly, their Mum, tried to teach Ava the Sign for ‘Happy Birthday’ but she didn’t want to learn it. But Rose Signed it to me with her Mum!
My Mum is teaching Ava to Sign the alphabet in BSL.
Ava asks Rose to stand in front of me so I can see her face and lips. Rose didn’t understand why I need this, so Kelly explained. Rose now understands what’s going on with me. She sits next to me for lunch and I can read her lips, but I don’t understand if she talks fast. She sits on my left so I don’t catch her if my right arm moves by mistake. Sometimes I ask her to stand where I can see her face and lips. They know to wait and listen when I am speaking with my Voice Output Communication Aid [VOCA].
Our latest service user blog is by Laura, who uses a book to aid communication and has speech and language therapy at Hedleys Able 2. She explains how important both have been to her. Laura’s story featured in the Royal College of Speech and Language Therapists bulletin recently.
Laura’s Story: “Speech and language therapy has had such an impact on my life”
“My name is Laura and I was born and raised in Durham. I am a member of Newcastle United Disabled Supporters Association (NUDSA). I love being part of NUDSA because I attend committee meetings to share ideas for fundraising and raising disability awareness.
I have visual impairment and cerebral palsy involving my whole body, and resulting in dysphagia and dysarthria. I am funded for speech and language therapy at Hedleys Able2, who regularly assess my eating and drinking. My support team are provided mealtime management plans and dysphagia training to ensure I can enjoy food and drink as safely as possible. Mealtimes have recently improved as my support staff now have a better understanding of my positioning and the speed at which I like to eat.
My funding also covers communication and a speech and language therapy assistant visits me at home every week so we can develop my low-tech commination book (known as auditory scanning book). We look at ways of making it user friendly for my communication partners, so I can communicate with as many people as possible. I also like the categories and words to be relevant; for example, having the words that I need to make sentences related to my life. My mum has played a big part in the success of my communication book. She is really supportive, an excellent communication partner and she shares all of the good news that I tell her about.
I communicate by answering yes or no non-verbally to categories that are read out aloud in order. These are also sub-categories, so I am familiar with where all of my words are and can construct sentences by choosing the words that I need.
I recently used my book in a session to communicate my wish to buy a bench in memory of my late uncle who was a massive Newcastle United fan. I used my places category to find ‘Saltwell Park’ to share that he grew up playing around the park and selected the action category so I could say ‘paint’ and the colours ‘black’ and ‘white’ to request that the bench be painted in these colours. Without the book and speech and language therapy I would have been unable to develop my communication skills, which in return would have reduced the amount of control I had over my own life.
Having limited communication makes me feel isolated and frustrated, so being able to make choices and being socially included has reduced these emotions. Speech and language therapy has had such an impact on my life and the bench is just one example of when my book has had a positive outcome. The bench is almost finished now and I can’t wait to surprise my aunty when it is ready.”
The support Ashley has received from therapists at Hedleys Able 2 has helped her get the most out of her Dynavox and enabled her to communicate with people more easily. Ashley was able to conduct interviews for her 24-hour carers using this vital technology.
The range of activities on offer through Hedleys Able 2 means Ashley can enjoy doing the things she likes in a social environment, which is very important to her.
This is what she had to say about how she communicates, in her own words.
“My name is Ashley and I have CP and I use a Dynavox because I can’t talk. I use a picture programme and words and letters when I can’t find the word. I use my Dynavox with direct access. I press the screen with my right fist to say what I want to say. I use my Dynavox for talking to people. I feel happy when people talk to me.
At the beginning I had a bliss symbol book. Somebody used to hold it and I pointed to the symbols. When I was about 7 years old I used a Liberator (Voice Output Communication Aid). I used a switch with my hand and my elbow. I had a pathfinder before I got my Dynavox. I am now 30 years old.
I had a Speech Therapist at school, Portland College and at Hedleys Able 2 and it helps with my life because I would not be able to learn how to use my Dynavox.
For the last 11 years I have lived in my own flat with 24 hour care. I did my (staff) interviews with my Dynavox and it was great because the staff could see how I talk. I didn’t want people who were quiet; I wanted someone to talk to me. I wanted someone jolly and outstanding. It is important. They might not be right for the job.
I use my Dynavox with the OT and case worker, and sometimes mum. I used it with my OT to explain about problem. Without the Dynavox my carer would tell them. But I can do it myself.
I attend Hedleys Able 2 Monday to Thursday. I do sports, art and ceramics. If I did not come I would be sitting at home and not going out. I would be depressed.
People don’t understand that people in wheelchairs can understand. Sometimes people talk to people in wheelchair like a baby. I have a mind.”
Abbie is a young lady affected by Cerebral Palsy, Pierre Robin Syndrome, a hearing impairment and speech and language difficulties.
To communicate, Abbie – like many of the children, young people and adults we support – uses a mixture of British Sign Language and a speech generating device called a Dynavox. This is absolutely crucial to Abbie as it enables her to be independent and to be heard.
To raise awareness of Augmentative and Alternative Communication (AAC) Month, Abbie wanted to share her story.
This is what she had to say about how she communicates, in her own words.
Hello, my name is Abbie. I am 25 year old. I live in Newcastle. I have 3 pets. I have a dog called Poppie and 2 guinea pigs called Rosie and Roxy.
To communicate I use my Dynavox Maestro and I use BSL. Not everyone can understand me when I use BSL. I use my left hand with my Dynavox to touch the screen. I have a problem with my right side. I have over 100 symbols or words on each page. When I can’t find the word I need I type it out.
When I was young I had a different Dynavox and a communication book. I was 10 when I started communication with a Dynavox. I am 25 year old now. If I have problems with Dynavox I use my communication book. I ask staff for the book by pointing and point to the symbol.
When I use a phone I communicate with my Dynavox. I put phrases or words on my Dynavox.
I go to Hedleys Able 2 four days a week. I use Dynavox all the time I use communication at home and at Able 2. When I go out I take my Dynavox.
I can use my Dynavox on video for Facebook. I can also listen to music from my Dynavox. I already have my own blog on Facebook about my Dynavox. I make videos about my day and activities I have taken part in and post them on Facebook for my friends to watch and listen to. I hope people learn and enjoy my posts.
I have messages in my Dynavox which help to say how to talk to me including “I speak using a computer so please give me time to type”, “please can you be quieter so I can concentrate” and “please stand in front of me so I can lip-read”. When using my Dynavox give me time to type. I can’t do fast because I need time to think. I will be frustrated if people keep asking questions before I have finished. If a room is loud I ask please talk a little louder and please say that again.
Speech therapists help me learn more about Dynavox. My Dynavox help me talk to people and be heard. It give me independence, I can ask questions and answer people’s questions. It is important to me so I can explain anything that’s going on very clearly. I can talk to staff and my friends and family. In fact anyone at all.
I am happy using my Dynavox.