NHS Yoga Therapy and Non Epileptic Attack Disorder
Over my time as Yoga Therapist in the Neuropsychology Department at Salford Royal Hospital I've done almost 1000 individual appointments with NEAD patients (Non-Epileptic Attack Disorder). In this article I will share some of my experiences.
This period will stand out for me as a cornerstone in the development of my own therapy practice and for the ground-breaking step of the NHS hiring a Yoga Therapist to work within a psychology service. (Big shout-out here to the individuals in the department who championed this approach and dared to look beyond the conventional methods).
What is Non Epileptic Attack Disorder? (NEAD)
Often referred to as NEAD, dissociative seizures or functional seizures in the UK or PNES (psychogenic non epileptic seizures) in the USA. NEAD happens when a person goes into the Freeze survival response.
Unlike epilepsy, NEAD is not caused by electrical activity in the brain and does not harm a person in the short term (although people may get injured from falls). Repeatedly going into the Freeze response does have an impact over time, regardless of whether NEAD is part of that or not. (I’ve got other articles on the Freeze response). When you see someone having a NEAD episode they might stare blankly, lose awareness or ability to speak, drop to the ground, the body might shake and jerk, in other words it looks very much like an epileptic attack even though it has little else in common. Only a specialist should make a diagnosis.
NEAD is a response to overwhelm which can be from an emotional or physical (ie pain) source. It is common not to feel this overwhelm before the episode happens which is part of the reason it has developed. Life events can cause a person to disconnect from their emotions and their body so they feel less and less. This often happens when they have had to cut off from overwhelming vulnerability – usually early in life – and become emotionally disconnected. In the majority of cases this is from hard to describe developmental trauma – having a parent who was emotionally unavailable, too busy or too stressed to be consistently available to the developing infant. There is no blame to be put on parents here, this pattern is all too common in our society, look at the average hours that parents now have to work, the amount of time spent in childcare where one adult has responsibility for multiple infants and so on. This is only about understanding. Sometimes there are also more obvious ‘Traumatic events’ but these are almost always layered on top of developmental trauma.
This disconnection from themself often means a person can push through experiences which would cause others to ask for help, take time off, give up, try something else or rest. It can feel so normal to a person that they often don’t realise they are living in a highly stressed state or a numbed state. If you’ve never experienced anything else, how could you compare it? They are not aware of how hard they are pushing themselves and usually put everyone else before themselves, often carrying beliefs that it is selfish to take care of your own needs. Constantly living beyond their capacity takes its toll until a protective shutdown response develops (NEAD or dissociation - the freeze response). Chronic Fatigue, autoimmune diseases, digestive problems and Fibromyalgia are other possible responses. Over time this response gets triggered by smaller and smaller things (because, in a sense, it’s working – it’s keeping you alive and forcing you to rest) so that you can do even less than other people before you have a NEAD episode.
NEAD is reversible. Recovery requires a huge, life-changing shift in re-defining values, relationships and identity. Often NEAD patients have the role of being the one everyone comes to, the person who never says no, the strong person who everyone else leans on. To lose this is to let go of our socially-constructed identity and have the opportunity to discover the true Self. Yoga Therapy is well placed to step in here.
How did this Yoga Therapy job happen?
One of the department’s Consultant Neuropsychologists came on my 2-day body-oriented training course (More Than Words) for therapists. This course introduced talk therapists to integrating the body into their work for mental health and trauma. This approach was then taken back to the department and was having a positive impact on patients so when a vacancy opened up, I was invited to apply. Of course, there was no job role for a Yoga Therapist, it was in fact for a Clinical Psychologist or Cognitive Behavioural Therapist (CBT). I applied, interviewed and was offered the job with a newly created title of Yoga Therapist.
How was it received?
My NEAD team were very receptive to the approach and now half of them have attended my More Than Words course. The department (of around 30-40 Clinical Psychologists and Neuropsychologists) were so welcoming, interested and supportive. Within the first few months I was invited to do a CPD (continued professional development) session for the whole department. Despite it being a very hot summer’s day and everyone being packed into a small room (pre-covid, obviously!) everyone took part in the practical exercises and had good discussions afterwards. During the annual away day, I led the whole department, including our fantastic admin team and managers, through a mindful movement session which people still mentioned to me 6 months later.
Something I often got asked was how patients were responding to their Yoga Therapy sessions. Did they think it was strange being asked to focus on their body, breath or to move? I too wondered if this would be the case. The truth is that not a single patient expressed any sign of thinking it was odd. I think that we can forget just how instinctive this approach is. We already ‘know’ it deep down, so it feels quite natural to work with the body as a way to process emotion or to help us feel better so we can talk more easily. Patients did on the other hand, often comment to me that they’d had talk therapies before and were asked to fill out lots of diaries, charts or forms and that they didn’t see the point. My takeaway from this is not to assume that whatever form of therapy you offer – however conventional or common it seems to the therapist, needs discussion and collaboration so that the patient or client feels they have ownership of it. I would spend plenty of time on psychoeducation – teaching the person about how their physiology works and interacts with how they think, feel and behave as well as how we develop these patterns over our lifetime (and how we can change them!). When they understand how it works, they can become really skilled in shaping and shifting their physiology. Once you have that kind of empowering experience, other possibilities open up.
What does Yoga Therapy in a psychology service look like?
The first two appointments were assessments to explore what brought someone to the service, help them understand and come to terms with their diagnosis and make a treatment plan. This also involved assessing risk to self and others and linking up with other services for support where needed. These assessments were done through talking as well as observation of breathing patterns, posture, movement and visible indications of autonomic nervous system regulation (eg whether someone was in fight/flight mode, rest/relate or freeze/shutdown).
Following the assessments I would then either refer people to our Yoga Therapy based NEAD group to learn strategies for managing NEAD or take them on for individual therapy. Those who attended the 4 group sessions would then be offered a review and individual therapy. For those needing individual therapy I would see them fortnightly for around 10-20 sessions.
Yoga Therapy for Non Epileptic Attack Disorder (NEAD)
All the patients I saw had received a diagnosis of Non-Epileptic Attack Disorder and had usually been referred from Neurology. Some also had a diagnosis of epilepsy. Many had other Functional Neurological Disorders, Chronic Fatigue Syndrome and Chronic Pain. Around 90% of patients in the service would also meet the criteria for ‘personality disorders.’ Although I personally don’t use this term, I could see that most (all) patients had Traumatic experiences, often very early in life, that led to the development of thinking, feeling and behaving in ways that made it difficult to have healthy, emotionally balanced, satisfying relationships.
Yoga has its own language (Sanskrit). For the purpose of accessibility and clarity I am using plain English to explore these concepts. But let’s remember the history and origin of Yoga as a philosophy and spiritual practice that comes from India. As a white woman practising in the West I recognise I am in a privileged position to be able to bring yoga into healthcare and share it with people who wouldn’t usually turn up to a yoga class. I have my own daily yoga practice and am committed to questioning my role in delivering a yoga-based approach as a white woman.
What happens during the Yoga Therapy sessions?
A personal plan is created in collaboration with the patient. This may include:
- Understanding patterns in relationships, habits and emotional reactions
- Identifying how daily life impacts them - how to make changes or develop acceptance
- Increasing their ability to tolerate feeling subtle changes in the body without shutting down
- Releasing blocked emotions that can build up if left unaddressed
- Reprocessing memories or difficult life events that were too overwhelming for the brain to effectively process at the time
- Learning techniques to release physical and emotional tension
- Working with the nervous system to reset an easily triggered or chronically activated stress response. Or to move from exhaustion / shutdown / blankness to a responsive state which primes us for good long-term health, enjoyment and human connection.
How does it work?
Body-based experiences send new information to the brain, into areas that do not process words and cannot respond to rational thinking.
Whatever is learnt during these experiences updates our internal map of the world including:
· how fearful we feel
· whether we see harmless things as a threat
· our boundaries (what is acceptable and unacceptable to us)
· how we relate to others
· connection to self and others
· the drive to take care of ourselves
· emotional reactivity (numbness or over reaction)
· sense of direction and purpose in life.
Along with the individual therapy sessions, I've loved helping to shape the group therapy offer, design and record the online NEAD course and provide psychology support for hospital staff on the covid wards. It's been a steep learning curve (that I've relished). I also worked with many interpreters throughout my time there – something I’d never done in therapy before.
I have very mixed feelings - so sad to be leaving my team as well as the patients I've been working with, some of them for a long time. I'm also incredibly grateful for everything I've learnt and how I've grown in confidence as a therapist. It was such a hard decision not to stay on but I know it's the right one as I look ahead to this year with my new clinic opening in February and a new programme of professional training courses to deliver.
Thanks to all my colleagues and for you, my online community, who have sent messages of excitement and support at various stages of my work there.