Listen: the voice of the nurse in eating disorder care

Listen: the voice of the nurse in eating disorder care

We learn what an eating disorder is like by listening to sufferers and families. But the picture is incomplete: to improve eating disorder care, the voices of nurses and clinicians must be heard too.

Gill Todd was clinical nurse leader for eating disorders at the UK’s South London and Maudsley NHS Foundation Trust when she retired in 2011. She had worked at the Maudsley for more than 17 years. I spoke with Gill during research for an upcoming book, The Diary Healer. This is Gill’s story:

Learning From Mistakes

Pilots are allowed to admit they have made a mistake, so their entire profession can learn from that experience. Listening to the experiences of others can save lives. We need this same philosophy and opportunity in the field of eating disorders. Let’s start getting the nurses’ and clinicians’ thoughts and feelings, as well as the patients’ and carers’ thoughts and feelings, where everyone is anonymous. To facilitate learning, let’s allow nurses and clinicians to describe what things they have done that they are unhappy with in the course of their work.

Suppressing what we have learnt helps nobody. Nursing staff and clinicians need the opportunity to say, ‘yeah, that didn’t work, and on reflection, I wish I had done this or that’.

Presenting both sides – the views of the clinician and nurse, together with that of patients and carers – will be a much better teaching tool than just telling people what to do.

Treating eating disorders is about making relationships work, in a non-perfect world. There is loads of textbook advice for clinicians, but this is not the same as real-time learning. When the advice goes wrong, or doesn’t quite go the way it should do, what do you do then?

Start With Trust

It gets back to the trust factor and how to build it up.

Whether or not the treatment is evidence-based, if you don’t have a trusting relationship between patient and therapist that’s equal, not one up and one down, you will get nowhere.

There has been a whole shift in the clinical paradigm, in trying to be equal with the other person and helping the other person see their worth in this relationship, helping them see that they are bringing something to the recovery process.

The relationship of parents or carers is a bit different to that of clinicians and nurses, because the patient is their child, but in the same way that multi-family therapy enables families to see there are other ways of doing things, and that they are not the only ones having a struggle, clinicians need the opportunity to see there are other ways of doing things, too.

Clinicians need to be able to see they are not the only ones feeling exasperated or worried about their patient; they are not the only ones this happens to. To present and share options for solutions experienced by others, which have worked, and which they might like to think about trying, is worthwhile.

Like, to discuss ‘this is what the research says, what do you think about that?’

To have a moderated blog would be helpful, to allow anonymous type feedback, so clinicians and nurses can write and share, like a) when something out of the textbook had not worked, and b) something new was learnt in trying a different approach.

Dining Room Punishment

The dynamics of being supervising the inpatient dining room, depending on how many patients you have got, 14 or sometimes nearly 20, is really, really difficult, because the patients are being made to do something they really don’t want to do.

The nursing staff are really sweet, more than me, in terms of being too sympathetic rather than empathetic; they feel sorry for the patient.

I’ve even seen tears, when the staff start crying, because not enough food of one sort has been sent up to the dining room, and the nurses know the kids will be upset. There is anxiety risk with every little thing, like how much water or how much juice you give the patient; every single course of every meal has its problems.

You are working with a group of people who really, at their core, feel like you are trying to harm them.

Every Meal, Every Mouthful

Being a nurse in this environment is a terribly difficult job and you need to cope with that six times a day. With every meal, every mouthful, the patient does not want it.

It is relentless.

So when the patient has finished a meal, your inclination is to just go away, and sit in the office, and have a bit of ‘me’ or ‘down’ time. You feel exhausted, and when the patients cry, or attack you, by just the remarks that they make, you feel completely de-skilled.

The other day, a patient was asking me for pepper. I tried to talk to her like an adult, and said, ‘do you remember our rules about pepper?’ Her response was ‘staff should know what they are talking about’ and this was a real put-down.

So that patient is likely to go away and say ‘the staff is crackers, they don’t know what they are talking about’.

‘The Worst Job a Nurse Can Have’

Working in an inpatient eating disorder unit is the worst job a nurse can have.

The patients want you to be perfect, to know everything.

The medical model holds sway in an inpatient unit. It is about the doctor being in charge; even if you have a lead nurse, the doctor takes the clinical responsibility. If the patient is not eating meals, or is not behaving in an acceptable way, the nurses are blamed for this.

I don’t think the medical model is particularly the best one to have in an eating disorder unit. It does not sit with the recovery model and needs to be really looked at.

Culture of Perfection

Of course, it is hard to change a culture. (But) Even talking about it is a start.

You cannot make life perfect for patients and, in fact, if you give the patient the impression that things will be perfect, that there is a way to be where everything is okay, you are really doing them a disservice. It is a lie.

The Truth: Life is Not Fair

When you can get your mind around the fact that life is not fair, it can take a great load off you – you are no longer expecting everything to be perfect, fair and just and equal. But it takes work to be able to achieve this frame of mind.

We say to patients ‘eat, you will feel better’. But in fact they feel worse when they eat. It doesn’t seem fair to them or to me.

The issue for me is helping them to understand that, beyond the meals they need to eat, relationships are tricky.

Even people who you love will let you down, betray you, abuse you, and say something you don’t like. That’s what patients with eating disorders have to get used to. Life is not perfect or fair.

Now I am retired, I am able to think about this more.

Step in that Person’s Shoes

Recovering the sense of self from an eating disorder is very difficult. The first stage is doing like what (Professor) Janet Treasure is doing with the New Maudsley Approach, trying to help people understand the psychopathology of the eating disorder, so that they understand what it is like to be in that person’s shoes.  But the next stage is to say to the patient:

‘Well, you have this kind of personality and genetic make up and therefore the world, and making relationships, is not going to be easy for you’.

And ask how we can talk about this, and explore the types of discussions that people with eating disorders often have in their heads. This discussion needs to be had, then and there.

Treating the Patient like a Person

Treating the patient like a person is vital, but difficult when the nurse somehow has to get them to eat. She has a list of distractions to try in outsmarting the eating disorder. Eating disorder patients are the same as everybody else in as much as they are all thinking about people’s motives. So: ‘Why are you trying to make me eat? You must have an ulterior motive. You want me to get fat, right?’

People who have an eating disorder are very passionate about their eating disorder. The nurse’s challenge is to help them find a way to share their passion and turn and channel that energy and focus into other more positive things. Whether patients like it or not, they have to learn there is no perfect relationship, not even with their eating disorder.

What’s Good about an Eating Disorder

When I teach carers, we have a session that discusses ‘What is good about having an eating disorder?’ Answers include: ‘It’s a guardian’, ‘It makes me feel special’, ‘It is a friend’, ‘It gives me attention’ and so on – nothing wrong with that, everyone wants that – but people with an eating disorder have lost the ability or the knowledge that people get these things in a repertoire of different behaviors. Life is not an either-or, black or white, situation. If you try something and it does not work, you try something else.

So we need to help the patient to develop a repertoire, and the dining room is a perfect place to start. But it is hard, because that is when the staff have the least time to consider how to develop the repertoire. For instance: if something does not work, try distraction. If talking about emotions is too much, then talk about the news headlines. That sort of thing.

Recovery is about having an ongoing relationship with people.

Introduction to Mental Health

I got involved with eating disorders via a complete fluke, really.

I did a degree as a mature student and there was a nun on the course and she said: ‘Well why don’t you try psychiatry?’ So I went for an interview at two institutions and chose the Maudsley and just happened to get a placement with Professor Russell, in 1984.

I had not been inside a psychiatric hospital before. We were sent off to different areas. I was 31 and was shocked to find that life certainly was not fair for people with mental health problems.  It is a hard area to work in and you need to move around, to get experience and so on.

As a nurse, we had to do all the feeding, the hard bit. The doctors would waltz in and out doing all the nice bits, the therapy and all that.

‘Why Can’t Parents Do What We Are Doing?’

Maybe I helped sow the seed for the family based therapy model. I was at the Maudsley when (Professor) Daniel Le Grange was doing his PhD. One day I said to (Professor) Ivan Eisler, in a naïve sort of way: ‘Why can’t parents do what we are doing (feeding the patients in the wards) in their home?’ The researchers were doing the family therapy studies at that time. The multi-family therapy was developed from that.

Helping Families

At the same time, when Janet (Treasure) and I took over the Maudsley eating disorder unit in 1993, when Prof. Russell retired, it became apparent we weren’t going to have family therapy on the ward, although we did take 14-year-olds. But we still needed to speak to families, so we developed our own version of the multi family therapy days. So for me, family-based therapy is a program that uses the psychological understanding of the relationship that has classically come from feeding people on the ward. The family therapists had the belief that parents were not confident to lay down rules and set boundaries. In the ward you had to do that.

We began altering the culture of shutting out parents to encouraging them to be part of the treatment team.

You don’t set up a family home to be nasty, but you have to appear that way when helping a child recover from an eating disorder. This comes as a terrible shock to some parents, plus of course, accepting that this person, their child, is unwell; their child is not just being difficult.

Recovery Happens

Recovery entails coming to terms with your personality issues and how you see the world, and how best to adapt.

We have seen people recover after 20 years, get married and have children.

Using Janet’s carer model,  in our carer workshops, when someone said ‘Once you have Anorexia, you always have it’, we would ask ‘Well, which animal are you?’ And the answer would be ‘A bit like a jellyfish’, because you are just giving your child this hopeless message. Even if the parents don’t express their thoughts directly to their child it would be sublimely coming over to them.

They would pick it up. So these are skills that parents need help to learn.

Therapist-Patient Relationship

Recovery has something to do with believing in yourself, and this is where relationships matter. The patient needs at least one person to believe in them.

The one thing that will make a difference is the quality of the relationship between them and another person.

It’s not a good idea for the patient to set their therapist up, however, as a perfect person. If the therapist never puts a foot wrong, the patient won’t learn anything. The growth in the therapist-patient relationship is the important thing. If the therapist realizes they have made a mistake, such as agreeing with the patient that they have gained enough weight, and ignoring the mother who firmly believes several more pounds will make all the difference, and then the patient relapses, the important thing is for the therapist to acknowledge to both parent and patient ‘I made a mistake’.

The realness in the relationship is all-important.

Learning On The Job

It is very easy on the ward, to make mistakes and get frustrated.

Nurses don’t have specific eating disorder training before coming on the ward. They learn on the job, really. I think it would be helpful to have an experienced nurse, like a trainer, with you all the time, when you join the ward for the first time. Someone to help you become engaged with the patient and establish a dialogue.

When I arrived in the eating disorder unit I was told to ‘just get on with it’, and I discovered that I found the patients delightful. They became my inspiration.

They want to chat and share, if you are open to listening to them, because you spend a lot of time with them, like every single meal time. I would tell the patient:

• Inside you, is your own therapist.
• That little girl, she is waiting for you to take her by the hand.
• I’m sorry, this illness should not have happened to you.
• I’m going to be by your side, and we are going to embark on this journey.  We together are going to look at ways to get your life back. Because this is what we all have to do.
• We have to forgive ourselves, and all the rest of it.

* Gill Todd remains involved in the field she loves, as a trainer in motivational interviewing.

Resources:
*  Anorexia Nervosa: A Recovery Guide for Sufferers, Families and Friends. Co-author Janet Treasure. 2^nd edition: Routledge 2013.

* My Kid is Back – Empowering Parents to Beat Anorexia Nervosa. Co-author Prof. Daniel Le Grange. Routledge. 2010.

* The Succeed Foundation. How to Care for Someone with an Eating Disorder. DVD. Run Time 120 minutes. London: The Succeed Foundation; 2013. 7.

* Skills-based learning for caring for a loved one with an eating disorder: The new Maudsley method. Treasure J, Smith G, Crane A. London and New York: Psychology Press; 2007. 8.