Talking to ECHO about their self-help intervention for carers project

As part of the background research for my new book "When anorexia came to visit, families talk about how an eating disorder invaded their lives" I talked to Rebecca Hibbs of the ECHO (Expert Carers Helping Others) project to discover how this is helping parents and carers across the UK deal with the emotional and practical pressures of looking after an adolescent with an eating disorder. (Thank you, Becky, for talking with me!)


Batty: As I think I told you I am writing a book where I talk to 20+ families about their experiences of helping their child overcome anorexia and all the resources that helped them along the way. I wondered if you could talk to me about the ECHO project?

ECHO: It’s a project that provides a self-help intervention for carers of outpatient under 21's with a primary diagnosis of anorexia or EDNOS with an anorexia sub-type. We’ve got 35 or 40 sites involved in ECHO, many of which have CAMHS units. Any new referrals they get in - who are eligible in terms of age and diagnosis - will be offered the intervention. We then get their contact details and, if they are willing, take them on.

Participants (families and carers) are randomly divided into one of three 'arms' of the study:

1. Arm #1 receives treatment as usual (with follow-up questionnaires)
2. Arm #2 receives the ECHO self-help intervention pack which includes this book by Janet Treasure
3. Arm #3 receives the ECHO pack plus regular support from a dedicated expert carer over the telephone.

Batty: What is the aim of the intervention?

ECHO: The idea is that if we can improve the way carers cope and lessen their distress then this will have a positive knock-on effect on the patient.

Batty: Is it a new thing?

ECHO: No, it’s been running for a while. The idea behind it is the Interpersonal Maintenance Model that Janet Treasure et al came up with in 2006 which recognises that carers’ responses to the illness may perpetuate eating disorder symptoms. The theory behind the intervention is that, if we can teach carers the skills they need to best to deal with those behaviours at home, then this is going to have a positive effect on the patient.

Batty: That sounds great. I am just wondering why I, personally, was never offered this facility by CAMHS?

ECHO: It depends if the services are in the ECHO project; not all sites have got involved in the project. We have only taken on the sites that asked to be involved.

Batty: It sounds like a really fantastic idea and something that I could have used and I know “my” other families [interviewed for my new book "When anorexia came to visit..."] could have used it too, but it seems such a shame that we didn’t have access to it.

ECHO: It’s only been rolled out for about a year now so it might have been that it wasn’t around back then. When I said it’s been "running for a while" what I meant was we have another project running alongside it where we look at carers of adult patients with severe, chronic and enduring anorexia. We are now running this relatively new project to see if we can catch it earlier while sufferers are outpatients and adolescents. If we can, then hopefully the patient's illness will have be less protracted.

Batty: How is ECHO funded?

ECHO:: The Research for Patient Benefit fund.

Batty: Does it finish soon?

ECHO: We’ve ended the recruitment and all the baselines have been done. These are then followed up at six and 12 month points. The intervention usually happens between the baseline and the six month period and then we look at the questionnaires between the parents / carers at 12 months as well as six to see whether it’s had any effect and, if so, which of the three arms was most effective.

Batty: So do you have plans to roll it out across the whole of the UK permanently?

ECHO: That’s the aim but we need to prove it works first. We’ve been in collaboration with the SUCCEED foundation and the 5 DVDs that we’ve got running at the moment are actually quite old now because it’s taken so long to roll it out. SUCCEED have funded a brand new DVD featuring professional actors which has been written with Janet Treasure and a couple of expert carers. This is the DVD that was shown at the FEAST conference in November. We’re hoping that we can pilot that and then run out another project involving that DVD.

Batty: If it’s proven to work and you run it out across the country how will you get all CAMHS sites involved?

ECHO: That’s a really good question and one which we’re going to have to think about and work on, probably alongside SUCCEED’s new DVD. Obviously the Janet Treasure book is readily available on Amazon and we need to sort out what will happen about the telephone coaching.

Meanwhile here is a list of all the sites from whom we recruited participants for the ECHO project. (We advertised ECHO at meetings/conferences etc and these were the sites that chose to take part.)

• Aneurin Bevan Health Board
• Avon and Wiltshire Mental Health Partnership NHS Trust
• Bedfordshire and Luton Mental Health and Social Care NHS Trust
• Birmingham & Solihull Mental Health Foundation Trust
• Black Country Partnership NHS Foundation Trust
• Bradford District Care Trust
• Calderdale and Huddersfield NHS Foundation Trust
• Cambridgeshire & Peterborough NHS Foundation Trust
• Cheshire and Wirral Partnership NHS Foundation Trust
• Central Manchester University Hospital
• Cornwall Partnership NHS Foundation Trust
• Coventry and Warwickshire Partnership NHS Trust
• Derbyshire HealthCare NHS Foundation Trust
• Dorset HealthCare University NHS Foundation Trust
• Dudley & Walsall Mental Health NHS Trust
• Gloucestershire 2gether Trust
• Humber Mental Health Teaching NHS Trust
• Hywel Dda Health Board
• Kent and Medway NHS Trust
• Leeds Partnership NHS Foundation Trust
• Leicestershire Partnership NHS Trust
• Lincolnshire Partnership NHS Foundation Trust
• Norfolk and Waveney Mental Health NHS Foundation Trust
• North Bristol NHS Trust
• North East Lincolnshire PCT NHS Trust
• Northamptonshire Healthcare NHS Foundation Trust
• Nottinghamshire Healthcare NHS Trust
• Oxford Health NHS Trust
• Powys Local Health Board
• Royal Bolton Hospital
• Sandwell Mental Health NHS and Social Care Trust
• Sheffield Children’s NHS Foundation Trust
• Sheffield Health and Social Care NHS Foundation Trust
• Somerset NHS Health Partnership
• South Essex Partnership University NHS Foundation Trust
• South London and Maudsley NHS Foundation Trust
• South Staffordshire and Shropshire HealthCare NHS Foundation Trust
• South West London & St Georges Mental Health NHS Trust
• Suffolk Mental Health Partnership Trust
• Surrey and Borders Partnership NHS trust
• Worcestershire Primary Care Trust
• Worcestershire Mental Health Partnership NHS Foundation Trust