Dr Polly James explains the background to this innovative service
I am delighted to say that I have been in post now, as the Paediatric Clinical Psychologist for Children’s Allergy Service St Thomas’ Hospital, since February 2016. This is all thanks to Action Against Allergy who have generously funded this significant and worthy new clinical psychology service.
By way of introduction, I grew up in London and enjoyed exploring, asking lots of questions and trying all sorts of sports. My curious and inquisitive nature remained through school and I went on to study philosophy and psychology at Bristol University and completed my doctorate in Clinical Psychology at the Institute of Psychiatry, Kings College London.
I have always been committed to pursuing a career working with children and feel passionate about improving the physical and psychological health of children and young people with physical health problems. I am proud of my dedication to supporting children.
For the past 2 years I have been working at the Evelina London Children’s hospital delivering specialist psychological assessment and treatment to children, young people and their families. My clinical work has included supporting children to manage procedural distress, pain management, promoting young people’s understanding of and adjusting to illness and disability, and providing neuropsychological assessments to aid in the understanding of how physical health difficulties may contribute to the development and/or maintenance of psychological difficulties. I have also had the opportunity to work with children and their families offering support with experiencing panic attacks, anxiety and anger in the context of having multiple allergies.
During my time at the Evelina London I became very interested and passionate about working with children with allergies. It was clear to me how integral psychological services were to children’s allergy – not just for psychological but also health outcomes. A diagnosis of food allergies or eczema can shatter the core of a person’s world. Its arrival is often unexpected, unwelcome and can be life threatening. When accidental ngestion does occur the symptoms may be acute and severe and require emergency treatment.
Alongside this, people need to follow strict diets and rigorous medical treatments. All this can understandably create significant distress, fear, anxiety and a sense of having no control over your own body or that of your child. Food allergy can therefore have a significant impact on psychosocial aspects of quality of life, extending beyond the immediate clinical effects of the allergic condition.
I am enthusiastic and dedicated to carrying out research that is specific to providing improvements for children with allergies and to the quality of services that support children and their families.
However, there appeared to be a gap in services for families living with severe food allergy as there was no dedicated provision and families were struggling to be able to access psychological support. Hospital clinics usually solely focus on the physical aspects of managing this condition – for example, training on how to use the EpiPen.
So when the opportunity to work in the Children’s Allergy Service came up I was extremely excited about applying for the role with the hope of being able to create and develop a new service for such a worthy yet under-resourced population.
My role in Children’s Allergy Service
Since starting the role I have been overwhelmed by the enthusiasm and openness for psychology by the team in the Children’s Allergy Service. I have been touched by the families I have worked with, and impressed by the resilience and strength that they have shown.
I have continued to learn about the impact of allergies on social and family life. In particular, how beliefs, assumptions and values, which children and their families have developed, inform and shape how they make sense of and behave in relation to the allergies and those around them.
Working in South London, and with families from diverse cultural groups, has heightened my awareness of and the importance of respecting the impact of difference and diversity upon their lives. By openly discussing family values, cultural and societal differences can be taken into account, in turn allowing psychological treatment to be individually tailored.
A crisis such as an anaphylaxis or a significant allergic reaction is very distressing and parents and children can be left feeling anxious and traumatised by the allergic reaction, by the memories of it and the fear of it happening again. I believe the experience of allergy should be viewed in the wider family context, with specific consideration given to parental coping and anxiety.
I have 30 patients on my caseload at the moment and there is a variety of ages but the most common themes are definitely around anxiety about being exposed to allergens and having an anaphylactic reaction. The work focuses on psychoeducation about physical symptoms of anxiety, then differentiating what is an allergy reaction and what is an anxiety or panic response using their own lived experiences.
I usually put all this in a ‘hospital book’ which is individualised with patients and use Cognitive Behavioural Therapy and narrative techniques to help change their behaviours and work towards their goals. There is also a large impact on family relationships and managing the challenges associated with severe food allergy.
A lot of the work is with the parents helping them to adjust to living with food allergies, providing them with better coping skills and strategies. I also have a number of cases who have non IgE mediated allergens/possibly medically unexplained symptoms, which has focused more on increasing the mind body connection with emotional literacy and mindfulness techniques.
We are hoping to start a specialist feeding clinic for children with allergies. I have also set up two psychology groups for 8-12 year olds experiencing anxiety in the context of multiple food allergies called ‘Children’s Allergy Workshop: Fighting the Fear.’
Recently I was working with an 11-year-old boy ‘AB’ with multiple food allergies who was experiencing anger, frustration and worry. AB told me that the biggest problem was the worried feeling, which started after he had a severe reaction to a peanut. I was really impressed to hear how he manages the allergies by avoiding the allergens, being careful about what he eats, informing his friends and teachers and carrying around the EpiPen at all times.
However, he also described the scared feeling being around all the time, and that he feels it in his throat, face and heart and it makes him avoid lots foods that he is not allergic to. AB also avoids touching anything that he believes may have been contaminated so he won’t touch his food with his fingers, doesn’t eat or drink at school, he washes his hands constantly, avoids going to restaurants, social events or meeting up with friends outside of school.
AB told me that when he tries new foods he experiences fearful thoughts about ‘having a reaction’, his ‘face swelling’ and that his ‘lips, cutlery and other implements might be contaminated with nuts and cause a reaction.’ The fearful thoughts create in him a sense of feeling anxious, which goes into his throat and face and makes his heart race.
When he feels the anxiety in his body he asks mum for reassurance, he touches his mouth to check for swelling, tries to look in a mirror and avoids sharing cutlery or implements with others, which led him to think he was having a reaction in a vicious cycle.
I used a cognitive behavioural therapy approach in this case. We spoke about the differences and similarities of anxiety symptoms and allergic reactions and helped him to understand that it is no one’s ‘fault’ that it has happened.
Together we identified several strategies that he could do to help break the vicious cycle. We identified a fear hierarchy of various levels of exposure to avoidance behaviours. For example, rubbing a spoon on the sofa would elicit a low fear rating, compared to trying new foods, putting his fingers in his mouth (this would elicit the highest on the fear hierarchy).
I was really impressed by how quickly AB understood the relationship between his thoughts, feelings and behaviours. He acknowledged that being exposed to the fear of contamination gradually would help him to overcome the anxiety.
Following the first appointment he agreed to drop behaviours which led to an increase in the fearful thoughts and increase the use of distraction techniques in order to break the negative cycle.
AB stopped asking for reassurance or checking his face for swelling. He learnt that his anxiety peaked but then dropped and nothing dangerous happened. He also carried out a number of behavioural experiments such as sharing food with his Mum, licking his fingers and rubbing cutlery on the sofa and then eating with it.
He also discovered that letting go of his reassurance seeking behaviours and distracting himself could make him feel less anxious and reduce the frequency of the distressing thoughts.
AB has made fantastic progress and since meeting him I have noticed the huge amounts of changes he has made in his life. He now has a very good understanding of anxiety and the impact of the fearful thoughts on his feelings and how to change his behaviour to stop the anxiety.
He has shown bravery and resilience facing up to some very fearful situations.
I am also working with a young girl ‘XY’ who describes herself as a funny and kind girl but experiences a lot of shyness.
XY told me that since she was young the shyness has got in the way of her being confident in making and keeping new friends. She told me that she has had eczema since she can remember and it is all over her body. XY said that it feels itchy all the time and is worse at bedtime and at home time compared to school time.
She also said that she was allergic to a number of foods including eggs and nuts. She told me that sometimes she feels embarrassed and guilty about the allergies and thinks that her mother is “overprotective” about the things she can and can’t do because of the allergies.
XY described sadness and anger as the emotions that she experiences the most in her life. She told me that the anger feeling is around all the time and is everywhere, that she feels it in her throat, face and hands and it makes her stay in her room, scream, shout, hit people and say rude things.
She explained that when the anger feeling is around it also makes sadness come about, which makes her cry and hide under the covers in her bedroom. She told me that she experiences fearful thoughts about the future, especially about school exams and eczema. The fearful thoughts create in her a sense of feeling anxious, which goes into her throat and tummy.
When she feels the anxiety in her body she keeps it in by bottling it up and not telling anyone. Mum explained that the eczema causes XY a lot of distress and she spends a lot of time in her room crying and shouting.
Together with Mum we discussed implementing some different behavioural techniques, which comprised expressing interest, warmth and approval when XY was displaying appropriate/acceptable behaviours and safely ignoring or extinguishing inappropriate behaviours.
We also discussed increasing the structure and predictability to her day and scheduled more positive play activities into her daily routine.
Mum scheduled in ten minutes positive time with her every day, as well as making positive comments and giving lots of praise during the regular activities to help reinforce good behaviour.
Lots of praise, increased predictability and scheduling more fun activities will help children to feel more in control and increase positive attention and thereby reduce anxiety and bad behaviours. We have agreed to continue regular psychology appointments to help her feel more in control of the anger and positive about herself.
For children suffering and their families suffering such uncertainty in life, I believe it’s crucial to create a context of safety.
I believe that being empathic, open and non-judgemental when working with children and their families enables them to feel understood and responded to meaningfully. I believe that these values create a successful service and culture, as the multiplicity of a person’s experience is seen as central – there is no one way to live with allergies.
I will continue to strive towards supporting psychological services in becoming more acceptable and accessible to all and feel incredibly excited and honoured to be able to develop and deliver a clinical psychology service for children’s allergy at St Thomas’ Hospital.
Useful reading recommended by Dr James
The Incredible Years: A Trouble-shooting Guide for Parents of Children Aged 2-8 Years. Book by Carolyn Webster-Stratton. ISBN 1892222043
Helping the noncompliant child: an empirically validated program for teaching parents to manage noncompliance in 3- to 8-year-olds Book by Rex Forehand, author of Parenting the strong willed child.
Think Good – Feel Good: A Cognitive Behaviour Therapy Workbook for Children and Young People (Psychology) is an exciting and pioneering new practical resource in print and on the internet for undertaking Cognitive Behaviour Therapy with children and young people. Book by Paul Stallard
‘Overcoming’ self-help books
The Royal College of Psychiatrists endorses the Overcoming self-help series. These books and CDs are based on cognitive behavioural therapy (CBT) and cover more than 30 common mental health problems. Titles include “Overcoming Anxiety”, “Overcoming Low Self-Esteem” and “Overcoming Grief”. They are available from bookshops and libraries. Also see above-mentioned authors on Amazon.
This article first appeared in Allergy Newsletter No. 117. Summer 2016.