Shared care digital platform

Headscape Focus is a shared care digital platform, developed with and for, children and young people with Attention Deficit Hyperactivity Disorder (ADHD) by Oxleas NHS Foundation Trust

Headscape Focus brings together children and young people with ADHD and their families, the ADHD care team, schools and other professionals into a secure online environment. It provides self-management resources and allows the sharing of information with care teams and communication via instant messaging.

Children and their parents use the digital service by logging in to a website that can be accessed via their phone or tablet that links to the trust, where clinicians can review, support and monitor. It has not completely replaced face-face reviews but does allow clinicians to help resolve problems as they arise by offering support and advice online. 

The platform enables parents and children to record goals and track progress. For example, they could use it to track sleep patterns and get a weekly summary. There’s a problem tracker to help focus on something they want to work on.

In an ‘all about me’ section of the platform, users can record information based on questions used in the child’s initial assessment, helping to track changes in condition. The information also feeds in to the face-to-face reviews, saving patients time before the appointments and helping to make sure that they don’t have to rely on remembering events from several months previously.

A chat function enables clinicians to provide advice to patients and messages can be sent to or by families.

To support self-management, the team at Oxleas is developing videos for the platform on common problems. Importantly, parents can also record their feelings, for example when they are finding it hard to cope.

An important addition has been to link schools into Headscape Focus. Schools can log in and see information that helps them support children at the school and they can also report relevant information back to clinicians.

Dr Nicola Reynolds, principal clinical psychologist and clinical lead for Oxleas’s integrated neurodevelopmental team - autistic spectrum disorder (ASD) and ADHD, says the great advantage for clinicians is having the ability to intervene earlier than they could with the traditional model of care: “It creates a more continuous model of service delivery”.

How was it developed?

Headscape Focus built upon Healthlocker, a secure platform developed by the South London and Maudsley NHS Foundation Trust that promotes supported self-management and opportunities to improve communication between service users, carers and clinicians.

The driver for the development was, says Dr Nicola Reynolds, the need to look at different ways to deliver a high-quality service following a significant increase in demand for services without an increase in resources.

Dr Reynolds says Headscape Focus was developed in an iterative way; collecting data, consulting parents, getting feedback, testing and responding to what families said, including through focus groups. The team also considered people’s capability to use digital products, which led to tailoring the platform to work in similar ways to platforms such as Facebook that people are familiar with.

Who is using it?

Headscape Focus is used by clinicians and parents and carers of children referred to the service and schools.

Outcomes

The platform launched in August 2017. At the time of writing (June 2019) the trust says about 90 parents were using it, but work continues to support people in the cultural change of moving from a predominantly face-to-face model of care to a digital model. It hasn’t reduced the number of face-to-face appointments, yet but the team is exploring how the platform can be used to undertake remote monitoring so that face to face appointments can be better targeted to those young people who really need to be seen rather than offering routine face to face appointments. The platform does enable regular monitoring which can avert the need for crisis care.

One parent said in a letter to clinicians: “I use the sleep tracker as my son has problems with sleeping, by doing this the clinic are able to monitor his progress or if things are getting any better…I use [the diary] when things are getting on top of me. I am able to express how I feel…the clinic always responds to me…I would recommend any parent who has a child with ADHD to use this platform.”