The Eczema Education Programme

An update from Karina Jackson, Nurse Consultant and EEP service lead.

The Eczema Education Programme which is generously sponsored by Action Against Allergy continues to run weekly sessions for families of children with eczema at Guy’s and St. Thomas’ Hospital. There is a steady flow of referrals received from a range of clinicians working in allergy, dermatology and paediatrics. Approximately 300 families of children with eczema have been referred over the last 6 months, equating to approximately 12 new families per week accessing high quality specialist education and support to manage their child’s eczema and associated problems.

Springboard for others

The reputation of the programme and professional interest grows amongst healthcare professionals outside our Trust and we have many enquiries from GPs, health visitors, paediatric nurses and students on how we have developed and deliver this unique educational intervention. We frequently accommodate visiting healthcare professionals in the sessions so that they can see first-hand what our programme offers to families, and how we structure the intervention with parents or carers. This is an additional value of the programme, as our concept and design is being used as a springboard for others to develop their own knowledge and skills and potentially generate new ideas for the delivery of similar services in their respective localities.

New trainers  

We have recently recruited two new members of EEP trainers to our team. This enables us to provide a continuous service all year round, in addition to offering the popular Saturday session for working parents. Our two new trainers, Frances and Ann, join Kathy who has been doing a sterling job holding things together for a few months single handed.

Frances has been working within the dermatology setting since qualifying as a registered general nurse in 1995. More recently whilst raising a family she has been working part-time as a skin cancer nurse specialist. She was keen to increase her clinical role and the Eczema Education Programme trainer role has rovided an opportunity for her to revisit working with people with inflammatory and allergic skin disease and given her the opportunity to broaden her horizons, working with families.

Our second new trainer, Ann, is a school nurse working part-time in a very diverse community in South East London. She has personal experience of eczema in her family and also works with many families in the school setting who have eczema and allergies.  She wanted to broaden her knowledge and understanding of eczema to better support the families and help them manage their conditions.

She is finding her role in EEP extremely rewarding, gaining the skills and experiences to develop the role. Parents have provided positive feedback on the benefits the course provides and the role it has to play with in their child’s care.

Group sessions for teens

The increase in personnel also allows us to run a tailored session for teenagers periodically during school holidays. This requires two trainers working together as the teens have a session running parallel to the parents’ session and then the group comes together at the end of the day. Teenagers will often not have met other teens with eczema before, so the EEP provides a safe and friendly environment to explore and understand their condition and share experiences and concerns with their peer group who have insight and commonality. The day follows a similar structure to the regular EEP sessions in terms of explaining the disease, allergies and treatments but it also involves an important session on building confidence and dealing with difficult questions or comments from people.

To avoid embarrassment, the teens are also able to write anonymous questions and post in a box during the day and then the trainer will discuss these questions with the group later in the day.

Eleanor

A typical case referred to our EEP service recently is Eleanor (not her real name). She is nine years old and has had eczema most of her life. She was referred to a dermatologist two years ago as the GP felt they had exhausted all treatment options. Eleanor’s eczema is extensive and she suffers terribly with itch, which disturbs her sleep throughout the night. This has a knock-on effect to her daytime energy levels and ability to concentrate at school. Because her eczema is so itchy she scratches a lot, often without realising and this frequently leads to infections in the skin.

Eleanor is allergic to grass and house dust mite and these can worsen her eczema. Her mother was keen to discuss options for reducing exposure to these allergens and also learn how to maximise the use of the prescribed treatments they had been given. Her mother found attendance at the Eczema Education Programme really useful. She particularly found talking to other parents in the same situation helpful and during the sessions they swapped tips on how to managing a topical treatment regime maximally.

Leading the way

The Eczema Education Programme continues to be well received and appreciated. The EEP team and Guy’s and St. Thomas’s NHS Foundation Trust are incredibly grateful to Action Against Allergy for their kind sponsorship that supports the continuation of this service provision which is benefitting so many and leading the way to future developments in educational support initiatives in other geographical areas.

Feedback

We ask parents and carers to complete a feedback questionnaire at the end of the EEP sessions. Here is a sample of the free text comments we received last month:

‘I attended the workshop on 29th September.  I found it really helpful and we have changed our practices with our 5 year old, in line with the advice given.  Many thanks’.

‘I have really enjoyed this programme.  It has given me a lot of confidence in dealing with eczema’

‘This programme was excellent, very informative, good tips given, great treatment strategies’

‘I feel very satisfied.  I wish I had found out about the programme years ago’

It was very educational and I learnt so much.  Thank you so much’

‘Very informative day.  Enough information for parents to take away’
 

 

This article first appeared in Allergy Newsletter No. 118. Winter 2016.

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