Eating Disorder Insights Podcast

As you know, this series of the podcast is taking a look at eating disorder provision in the UK and the last 12 months under the shadow of the COVID pandemic has been a challenge to say the least – both in terms of service provision but also in terms of how families and those with eating disorders have had to adapt to manage their illness.

We’ve seen lots in the media about the impact of COVID on those with eating disorders and how services have had to change the way they deliver services.. and lots of reports use words such as ‘devastating’ and ‘dangerous’ to describe what’s happening.. but are all of the changes in service provision bad or have some services adapted and moved to providing treatment more effectively?

In today’s episode, I’m talking to Emily Elson – who has lived experience of an eating disorder, is the Chair of the Patient Public Involvement and Engagement Committee (PPIE) for the First Steps ED charity and is also a board Trustee.

Today, Emily and I talk about a joint survey that she co-ordinated between Beat, the UK’s national eating disorders charity, FEAST, a global organisation supporting families of those with eating disorders and First Steps ED, A UK based charity who also supports those with eating disorders and their families.

The purpose of the survey is to examine the impact of COVID on those with eating disorders. Emily shares the background of the survey, why it has been commissioned and how you can be part of it. If you'd like to be part of the survey,  be quick.. the last day for completing the survey is 21st MARCH 2021- To access the survey, click the link or copy & paste.. bit.ly/3oAd7Yc

If you'd like more information about the services mentioned, the details are listed below..

Emily Elson - @PeriodsPower

First Steps ED - https://firststepsed.co.uk/

F.E.A.S.T - https://www.feast-ed.org/

BEAT - https://www.beateatingdisorders.org.uk/

 

If you'd like to add your voice to the discussion, contact the Eating Disorder Insights Podcast on:

Email:- [email protected]

Twitter:- @ED_Insights_Pod

Voice Message:- https://www.speakpipe.com/eatingdisorderinsights

Music from https://filmmusic.io

"Modern Jazz Samba" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

"Samba Stings" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

Welcome back to the podcast and today I’m continuing the discussion around eating disorder treatment provision. In the last episode I gave you an update about some of the conversation I’ve had with families and their difficulties in accessing treatment for their child.

Most of the descriptions included struggles in getting access to specialist eating disorder services, not fitting the criteria and for some, the criteria of the services changing resulting in their care coming to an end.

Another distressing theme surrounded access to medical treatment for their children when they became dangerously poorly at the hands of their eating disorder. In discussion with teams and families, it’s clear that in some areas, there are still significant issues when it comes to eating disorder children being medically treated paediatric wards.

To explore this I'm so pleased to welcome Dr Ian Rodd, Consultant General Paediatrician based in Winchester and Dr Emily David, Clinical Psychologist, Hampshire CAMHS specialist eating disorder team. In today’s episode we explore how Ian and Emily overcame the difficulties that can be present when co-ordinating the care of eating disorder patients between paediatrics and specialist CAMHS eating disorder teams.

This is a really interesting conversation.. where both share how they overcame their professional differences to find that vital common ground to meet the needs of children with eating disorders. Its glaringly clear that both Ian and Emily have a passion for the health and wellbeing of children and both focus on placing the family at the centre of care. The story of how they aligned the world of paediatrics and child mental health is something that hopefully will help other teams to do the same.

To contact Dr Ian Rodd  - @ian_rodd

To contact Dr Emily David - @ekd1v07

If you'd like to add your voice to the discussion, contact the Eating Disorder Insights Podcast on:

Email:- [email protected]

Twitter:- @ED_Insights_Pod

Voice Message:- https://www.speakpipe.com/eatingdisorderinsights

Music from https://filmmusic.io

"Modern Jazz Samba" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

"Samba Stings" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

Many of you have been asking what weight for height (WFH) is and how it's used in eating disorder treatment and assessment. Here's a brief explanation..

The full show notes are available here, so click the link or copy and paste it into your browser: https://sway.office.com/ZY1mM9OSMFzSRDIh

If you'd like to add your voice to the discussion, contact the Eating Disorder Insights Podcast on:

Email:- [email protected]

Twitter:- @ED_Insights_Pod

Voice Message:- https://www.speakpipe.com/eatingdisorderinsights

Music from https://filmmusic.io

"Modern Jazz Samba" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

"Samba Stings" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

It's been an interesting  time since the last episode was released where I've spent time talking to lots of families who are very keen to share their stories about their experience treatment within the UK and have agreed to be interviewed on the podcast. Along side this, I placed a note on Becki and Jen's Facebook support group asking if it would be okay to quote some of their posts on the podcast to help with better understanding.. Over 120 families gave me total permission to share their posts with you.. so many families want to support change and want you to hear and understand the current issues around eating disorder provision.

I have also put the same shout out on professional forums.. but the uptake has been somewhat lower and more surprisingly some have asked to remain anonymous, stating concern about what would happen if their identity was known. It's clear that some may have difficult into share, but some are keen to share innovative projects and be part of the discussion to inform change..

In this episode, I give you a small sample of some of the issues that families face.. come listen

If you'd like to add your voice to the discussion, contact the Eating Disorder Insights Podcast on:

Email:- [email protected]

Twitter:- @ED_Insights_Pod

Voice Message:- https://www.speakpipe.com/eatingdisorderinsights

Music from https://filmmusic.io

"Modern Jazz Samba" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

"Samba Stings" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

The last few weeks have been a total eye opener for me.

I'm a clinician in the NHS. I have worked in NHS specialist eating disorder teams in the UK and I'm proud of what my teams have done to help families to understand, take charge and recover from this vile and dangerous illness. Even with the knowledge that we could do more with more resources, we still leave work at the end of the day feeling like we helped to make a change. We get praise and gratitude from the families that we help, we see lives that were stuck in fragmented chaos slowly return to normal and we use research and studies to make sure that we are providing the best treatment that exists for eating disorders. This all adds up to a very safe and satisfying feeling as a professional.

But over the last few weeks I've come to learn that there are hundreds and hundreds of families that don't feel as happy and satisfied as I do about the provision of treatment in the UK. For some there is a distinct difficulty in accessing treatment. I have heard stories about lack of understanding about eating disorders in GPs, A&E departments, Paediatrics, child and adolescent mental health teams (CAMHS) and more surprisingly, in specialist CAMHS eating disorder teams. Some families have had to battle for their concerns for their child to be heard even in the face of very clear and obvious physical signs of ill health. This has left some families scared, anxious and confused about what to do or where to go for advice and support.

So is this the experience of 'a few' families? Sadly, no.. this is the experience of hundreds of families in the UK. Many are turned away from services for reasons such as 'your child doesn't meet the criteria', 'your child needs to be motivated for treatment' , 'your child has another mental health condition that can't be treated by this team' , 'your child's Body Mass Index (BMI) or Weight for Height (WFH) is in the normal range'. These are just a few of the reasons stated by families - there are many more. More worrying, these families all share a common feeling - Their opinion and voice is not important and is often ignored. But the backbone if treatment in the UK is FAMILY BASED INTERVENTION.. How are we as teams missing this and leaving families feeling so isolated and dismissed?

In this episode I talk to Jen Haken and Becki Copely, Both parents of children with an eating disorder, both have many years of experience of navigating their way through the UK health system and both have a detailed knowledge of the plight of families in the UK as a result of the two on line support groups they run. In today's discussion, we open the lid on the issues and difficulties associated with eating disorder treatment in the UK and have a very heartfelt and gritty discussion about the day to day struggles some families face.

As I said, this was an eye opener for me, and I want to know more. If you're a professional you might find this a tough listen.. but let's use this to inform change..

If you want to access the support group, follow the links below:

Parent to Professional-Eating Disorder Support UK www.facebook.com/groups/388803421922063/about

Eating Disorder Parent/Carer Support (UK) - www.facebook.com/groups/430874960395142

Jen Haken can be contacted on Twitter: @jenfer19

Becki can be contacted on Twitter: @Becki_edsuk

If you'd like to add your voice to the discussion,

So far, we have looked at how you can get your child to the GP successfully.. but what happens after that? the expectation is that your child will be assessed, referred for medical treatment if needed then be referred to your local CAMHS specialist eating disorder service. Sounds like a plan right? Yep, this is what should happen.. but.. this is not the case for many families. Some are having huge difficulties in getting their child to treatment and when they do, they feel misunderstood, frustrated anxious and frightened. Having an eating disorder in your family is very distressing and is a daily struggle, so anxiety and fear is definitely part of it, but what's happening to create the roadblocks to treatment that many are describing.?

We're going lift the lid on the issue, hear from families and professionals and start to understand the factors that cause difficulties in accessing treatment. Unless we are able to get a better understanding of what it's like to access treatment, we won't be able to make the changes needed that families need.

We know that NHS services are under immense pressure and 2020's COVID pandemic added serious strain to service delivery. Eating disorder services saw an increase in referrals that stretched resources often beyond their ability to meet the need. This also created an increase in in-patient admissions for treatment. But this doesn't explain all of the struggles that are being reported by families. I'm hearing many families talk about having access difficulties way before the COVID pandemic - so what's happening?

This is a change of direction for the podcast, but lots of families in the UK are having massive struggles to access eating disorder treatment and this is adding greatly to their distress. So we need to hear what they have to say and use their voice to inform change in treatment provision.

Are we only going to hear the voice of the family? no - that's a one sided discussion and won't give a full picture. We also need to hear from those that commission and deliver services - unless the voice of the family is heard by those that can inform change, no change will happen.

In the next episode, I'm talking to Jen Haken and Becki Copely who have set up support groups for families of those with eating disorders. Come an listen to what they have to say. If you're interested in joining their support groups - click the links below:

Parent to Professional-Eating Disorder Support UK www.facebook.com/groups/388803421922063/about

Eating Disorder Parent/Carer Support (UK) - www.facebook.com/groups/430874960395142

If you'd like to add your voice to the discussion, contact me:

Email:- [email protected]

Twitter:- @ED_Insights_Pod

Voice Message:- https://www.speakpipe.com/eatingdisorderinsights

Music from https://filmmusic.io

"Modern Jazz Samba" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

"Samba Stings" by Kevin MacLeod (https://incompetech.com)

License: CC BY (http://creativecommons.org/licenses/by/4.0/)

How do you choose between using an NHS service or seeking out private treatment? In this episode, we will explore the issue of treatment choice and take a look at the options that might be available to you in each treatment setting. As a professional, I see many families who find themselves trying to make such a decision, trying to navigate the wealth of services that offer wide-ranging treatments for eating disorders and the common factor is that they all want the best for their child. In this episode, I'll help you to think about how to make the best choice for you and we'll consider some of the possible benefits and pitfalls that you need to look out for.

There is no hard and fast rule about which is the best option - this is very much an individual choice based on your unique family needs. But it's very important that you make the right choice and to do this, you'll need lots of information... so sit back and listen...

As a helping hand, these are some of the links to the services I discuss in the podcast.

British Association for Counselling and Psychotherapy  - BACP

British Psychological Society  - BPS

National Institute for Health and Care Excellence - NICE Guidelines for the treatment or Eating Disorders

And not forgetting the incredible Eva Musby ..

In this quick episode we'll look at what you can do if you feel that you didn't quite get what you needed from your GP appointment. We'll take a look at your options and  think about how you can get the help you need and get the best start to treatment possible.

This is a short episode, but worth listening to..!

 

Your child might not share your enthusiasm about going to the GP and seeking treatment. In this episode, we're looking at your child's feelings and what is influencing their reluctance. I will help you to understand the eating disorder by viewing it as something separate to your child - a living, breathing entity - a parasite -  that has attached itself to your child and is using them for its own gains. I'll help you to spot it's behaviours, help you to understand how it gains influence over your child and how you can work together as a family to reduce its power.

 

Your child might not share your enthusiasm about going to the GP and seeking treatment. In this episode, we're looking at your child's feelings and what is influencing their reluctance. I will help you to understand the eating disorder by viewing it as something separate to your child - a living, breathing entity - a parasite -  that has attached itself to your child and is using them for its own gains. I'll help you to spot it's behaviours, help you to understand how it gains influence over your child and how you can work together as a family to reduce its power.