FREED is a service for young people (aged 16-25) with short (< 3 years) first episode illness duration. FREED interventions include a rapid screening (with 48 hours of referral), specialised assessment (within 2 weeks of referral), and allocation to evidence-based interventions for patients and carers, tailored to developmental age and stage of illness (within 4 weeks of referral).
Co-Production
From start: No
During process: Yes
In evaluation: Yes
Evaluation
Peer: Yes
Academic: Yes
PP Collaborative: No
Find out more
Dr Amy Brown - Senior Clinical Psychologist, South London and Maudsley NHS Foundation Trust
Eating disorders (ED) are severe mental disorders, with high disability and death. The first 3 years of illness offer a critical window for achieving full recovery. Beyond this, outcomes are much poorer. In psychosis, first episode services are well established, to reduce duration of untreated illness and facilitate optimal early care. Surprisingly, there is no parallel development for EDs. Moreover, for children and adolescents with eating disorders waiting time targets and extra funding have been secured by the government. However, there has been no parity for adults with eating disorders. This creates a compelling argument for the service we designed, called FREED (First Episode Rapid Early Intervention for EDs).
FREED is a service for young people (aged 16-25) with short (< 3 years) first episode illness duration. FREED interventions include a rapid screening (with 48 hours of referral), specialised assessment (within 2 weeks of referral), and allocation to evidence-based interventions for patients and carers, tailored to developmental age and stage of illness (within 4 weeks of referral).
We have demonstrated that FREED reduces waiting time for treatment and the overall duration of untreated ED (DUED). We had a high uptake of treatment and low rate of drop-out rate, demonstrating excellent engagement with service. Satisfaction with FREED was very high, and clinical improvement was rapid.
“The FREED project was brilliant for Issy. There was a rapid response at a time when she was falling into her illness…and gave her the belief and trust in herself to go out, face the world and live her life” – Sarah, mum to a FREED patient
“When I started FREED, which came up really quickly and just at the right time, everything improved. FREED empowered me to do things I never thought I’d be able to do. I am so excited to see this project expanding” – Abi, a FREED patient
Due to the success of the FREED pilot, we won a grant from the Health Foundation to ‘Scale Up’ and implement the FREED model in three other NHS ED outpatient services: The FREED-Up initiative.
Wider Active Support
The partner sites for the FREED-Up project are: Central and North West London NHS Foundation Trust Eating Disorders Service, Leeds and Yorkshire Partnership Foundation NHS Foundation Trust Eating Disorders Service, and North East London Foundation Trust Eating Disorders Service. FREED has now successfully launched in all of these sites. As the lead site, SLaM provides regular implementation supervision and organises learning days for all sites to progress the service we offer.
Beyond our direct partner sites, building relationships with key stakeholders (GPs, commissioners, wider trust, BEAT – national ED charity) is integral to the success of FREED. We have representatives from all stakeholders on our FREED advisory board (which meet bi-annually) and invite all parties to FREED events (e.g., our FREED-Up launch event in Nov 2016 had 100 attendees made up of clinicians, commissioners, patients and carers). Next we are planning focusing on engaging/educating GP, as early detection and referral in primary care is imperative to early intervention.
Co-Production
Service user involvement (both patients and carers) has been crucial to ensure that FREED is acceptable and relevant for the young people that use the service. We involve patients across levels of service development, examples include:
• Representation on our FREED advisory board, shaping the progression of the FREED model
• Providing written and video service experience feedback
• Involvement in developing new FREED clinical resources (e.g., a guide to healthy social media use and psychoeducational leaflet about eating disorders and the brain)
• Giving talks at FREED events about their personal experience of the service.
Looking Back/Challenges Faced
Our biggest challenge has been seeing patients from 7 boroughs with different commissioning arrangements. Some commissioners have been reluctant to make changes to their complex gate keeping arrangements. We dealt with this challenge in two ways. First, we met with all the commissioners individually and jointly. Secondly, we had significant early media coverage, e.g. with feature length articles in the Guardian and the Independent. We sent these articles to our commissioners and several altered local commissioning arrangements, making access for young people to our service easier. If we repeated the project, we would have considered more proactive engaging a wider range of stakeholders (i.e. commissioners, NHS England; GPs) earlier in the process. Indeed, during our more recent ‘scaling up’ phase we have endeavoured to do this though FREED events and our having representation on our advisory board committee.
Sustainability
After the initial set up phase of FREED at SLaM in 2014, we focused on embedding the model within the wider team through a number of processes. Firstly, we hold regular training days for the wider team, focused on both the clinical and process aspects of the FREED model. Secondly, we have developed a ‘FREED toolkit’, which is a ‘how to’ for delivering the FREED service, including clinical adaptations and all administrative processes. Finally, we have a ‘FREED clinical team’, in which members of the wider clinical team rota into for one year at a time,thus, ensuring full ownership of FREED throughout the team. Equivalent plans have been put in place for all our partner sites also.
We are planning to use the FREED-UP partnership as a spring board for applying for further funding (e.g. from NIHR) to generate further evidence and improved models of understanding into other aspects of first episode recent onset ED cases (e.g. improved early detection) and thus to improve quality of care further.
Our longer term goal is to make FREED a national gold-standard service model. We plan to achieve this through widespread dissemination of the FREED model and ultimately at policy level change. For example, FREED was cited in a 2015 NHS England commissioning guide and we are liaising with BEAT (the UK’s foremost patient/carer organisation for eating disorders) on their national drive to increase early intervention in eating disorders.
Evaluation (Peer or Academic)
In order to evaluate outcomes during the pilot phase we compared FREED patients (n=60) with (a) audit data (n=89; i.e. patients matched for age and illness duration seen before FREED) and (b) published data. A paper detailing the service model, feasibility and acceptability has been published in a peer reviewed journey (see link: http://onlinelibrary.wiley.com/doi/10.1111/eip.12382/abstract;jsessionid=5B77B0D5395834DF14769ED7D956EA94.f01t01). A second paper reporting the clinical outcomes from the pilot study is currently under review (please see section below for a summary of findings).
The implementation of the FREED-Up initiative is being evaluated by the Institute of Psychiatry, Psychology and Neuroscience, King’s College London. A mixed methods approach will be taken. For waiting-times and DUED, we will carry out a case-control comparison of FREED participants with patients (matched for age and illness duration) treated in participating units prior to starting FREED. Additionally, we will carry out a 1-year outcome evaluation of a proportion of participants and their carers. Qualitative interviews (patients, carers, clinicians, commissioners) will also be conducted.
Outcomes
Key outcomes from the FREED pilot study:
• FREED reduced DUED by 6 months (previously 19 months for similar patients attending our service) to 13 months. We achieved the DUED of 13 months only for patients from areas where GPs could refer to us directly. FREED patients from areas with complex gatekeeping procedures, had a DUED of 17 months.
• FREED reduces waiting time for treatment by up to 68% (52% for those boroughs with commissioning barriers).
• 100% of FREED patients took up treatment, compared with 87% from published data and treatment dropout was 15% compared to 20-44% from published data.
• Only 7% of FREED patients needed admission vs 17-44% of published data.
• 60% of FREED anorexia nervosa patients back to normal weight at one year vs 17% of young people with a comparable illness duration previously treated by us.
• On average 70% of FREED patients no longer fulfilled criteria for a clinical ED at 12 months.
Sharing
To date we have two papers published in peer reviewed journals and a third under review. We also have had two book chapters published:• Schmidt U, Brown A, McClelland J, Glennon D, Mountford V. Will a comprehensive, person-centred, team-based early intervention approach to first episode illness improve outcomes in eating disorders? International Journal of Eating Disorders. 2016
• Brown A, McClelland J, Boysen E, Mountford V, Glennon D, Schmidt U. The FREED Project (first episode and rapid early intervention in eating disorders): service model, feasibility and acceptability. Early Interv Psychiatry. 2016 Sep 13. doi: 10.1111/eip.12382. [Epub ahead of print].
• McClelland J, Hodsoll J, Brown A, Lang K, Boysen E, Flynn M, Mountford V, Glennon D, Schmidt U. The impact of a novel First Episode and Rapid Early Intervention for Eating Disorders (FREED) service on clinical outcomes in patients and their carers: A pilot evaluation. Submitted for publication.
• Lang K, Glennon D, Mountford V, McClelland J, Brown A & Schmidt U. Early Intervention in Eating Disorders. In: Wade T. (Editor). Encyclopedia of Feeding and Eating Disorders. Springer Science and Business Media. 2016.
• Lang K & Schmidt U. (2017) Eating Disorders. In: Gask L, Lester H, Kendrick T & Peveler R (Eds). Primary Care Mental Health. 2nd edition. Royal College of Psychiatrists.
2. We have shared FREED at a number of national and international conferences as presentations or workshops, including:
• Scottish Eating Disorders Interest Group Conference, Scottish Parliament – Edinburgh, 2016
• Eating Disorders International Conference, London, March 2016
• Eating Disorders Summit: Rapid Early Intervention & Developing a Gold Standard service, London, Feb 2016 & Jan 2017
• British Psychological Society CPD event, 2016
• British Association of Behavioural and Cognitive Psychotherapy Conference, Manchester, Spring 2017
• Association for Child and Adolescent Mental Health, Emanuel Miller Conference, London, March 2017.
• Academy for Eating Disorders International Conference , Prague, June 2017
3. Moreover, FREED has had media coverage since launching in 2014, proving national reach of our key message, examples include:
• An article in the Guardian: https://www.theguardian.com/society/2015/jun/21/eating-disorders-nhs-trial-anorexia-bulemia
• Professor Schmidt (FREED-Up evaluation lead) and Issy (a FREED patient) appear on Women’s hour: http://www.bbc.co.uk/programmes/b0607w1l
• Dr Victoria Mountford appeared on The Sound Doctor, Health Today Radio, 22nd July 2015.
4. Finally, we have created a Twitter account to spread the word on FREED and early intervention in eating disorders (@FREEDfromED). We have a growing number of followers (currently 161) and during our FREED-Up launch event in November #FREEDUplaunch was trending on twitter.
Is there any other information you would like to add?
In addition to providing the best possible care for our patients, we are also committed to raising awareness nationally about the importance of early intervention in eating disorders. Funded via a ‘spreading improvement’ grant awarded by the Health Foundation, we have developed an animation and website focused on early intervention, aiming to reach young people nationally through social media: www.FREEDfromED.com.
