When knowledge is not enough – a mother’s frustration

When knowledge is not enough – a mother’s frustration

This story is about a mother who has been alert to the early signs of ‘Ed’ but has been unable to get to first base in getting her daughter back. When anorexia develops in a child, recovery gets a head start when parents:
a) recognise the symptoms
b) know that early intervention is vital
c) know that the Maudsley Approach is the best  evidence-based ‘first stop’ treatment
d) know where to access this treatment.

The mother, “H”, emailed this afternoon. She can tick all the boxes, except one.  She recognised the symptoms, knew early intervention would give best hope of prompt recovery, and that the Maudsley Approach would be the best first stop treatment. But two months have passed and she has been unable to access the treatment for her daughter.

It riles me that some 30 years after the Maudsley Approach was found to be a successful family-based treatment for early intervention of anorexia in children and adolescents, that access to this treatment remains out of reach for many families. Yes, I am beating my advocacy drum.  “H” writes from Gippsland, in Victoria, Australia – the same region in which I developed anorexia 50 years ago. My mother didn’t have a clue how to help me, in 1962. Today’s mother does have a clue – she is very well informed – but without service delivery, her anguished helplessness matches that of my mother, five decades earlier. This is not good enough. I suffered 44 years. Today’s Gippsland girl, with early intervention with FBT, would have every chance of  being free to resume her life within 44 weeks. But TWO precious months already have been lost – allowing the illness time to embed itself. “H” writes:

‘My dear friend, “C”, gave me your book (My Kid is Back) last November when I first noticed the signs of anorexia in my daughter. Having had a sister with anorexia 30 years ago I was aware of it quickly.

HOWEVER (and this is unbelievable) I have not been able to get help even with my early detection. I live in Gippsland and there is NOTHING in the country. So, I immediately (1^st week of November) saw our local GP. She agreed with me that my daughter was in trouble and booked us into the specialist ED clinic at Monash Hospital, a two-hour drive away in the Melbourne suburb of Clayton (we were told the Royal Children’s Hospital, which offers the Maudsley Approach in Melbourne, is unable to take us due to being outside their geographical area). 

The first available appointment was February 16^th – more than 2 months ahead. Of course we booked it immediately. It is now only 10 days away.

Despite our stumbling efforts, “N” has lost more weight. We have not been very good at it as we have only just realised it is not her but the AN we have been negotiating with. Her medical signs remain on the borderline for admission to hospital but I have read your book! I understand that this will not solve the problem and, to be honest, have tried to avoid that.

My daughter (age 17 by the way) sees a psychologist on her own who has been great in handling her anxiety issues in general. She is also a qualified Family Therapist with ED experience but I’m unsure if she is familiar with Maudsley.

My questions are:-

• Do you think we should pursue FBT with ‘D’s current psychologist (‘D’ was mortified  when I suggested it) or a separate one?
• ‘D’ has been so distressed when we make her eat something that she doesn’t want to that she has actually asked us to book her into hospital as she says at least she wouldn’t have to stress all day about food – that it would be forced upon her and she would avoid the conflict with us. Do you think it would be a good mental break for her or is it likely to make matters worse? 
• Finally, in re-feeding, do you think it is ok to provide the list of  planned meals for the week ahead to “N” (she wants me to) or will that just cause more anxiety and hence more stressful “negotiation” attempts?

I’ve been on a parents’ support website and it gives me internal strength but practically I don’t know how to cope with the stress at meal times which starts escalating 2 hours before dinner every night.’

I’m sure every parent who has been, or is on a recovery journey with their child, is feeling for “H”. Dr Michael Kohn, of the Children’s Hospital at Westmead, Sydney, suggests following up with local and state services, and a call has been put out. Meanwhile, Jane Cawley, of Maudsley Parents, writes: 

‘I’m so sorry to hear this family is having such a hard time. I agree with Dr Kohn that starting with the current provider and working from there is a good start. If the mother wants to do FBT she should feel free to ask the therapist (either the current one or the one they’ll see in 10 days or both) about that and discuss how to proceed. There’s some basic info for therapists who want to learn about FBT here. The manual is a good resource and the therapist might want to seek supervision from someone more experienced. The training institute offers consultations, but the therapist probably can find someone closer. Or she may be able to refer to someone else.

From what the mother is describing, it seems like firm, consistent expectations around eating have been a sticking point (understandably enough, since they haven’t yet gotten professional advice on managing the illness at home). I do understand how heartbreaking it can be to see a beloved child so distraught. In the midst of things it can be tough for a parent to remember that it’s the anorexia itself that’s causing the suffering. It’s not going to walk out the door on its own–it needs to be pushed out. It’s normal and expected that eating will be very anxiety-provoking in the early stage. That’s one of the things that makes anorexia so diffcult to treat. Having the right professional support can make all the difference.
Parents can easily feel like they are “making things worse” when meals and snacks are so miserable and anxiety is dialed way up.  An experienced therapist can explain the usual course of treatment and let parents and patient know that there’s a light at the end of the tunnel. In many ways, treating anorexia is similar to treating anxiety disorders, phobias, or OCD–fears are confronted, rather than avoided. It’s very difficult initially, but chances are very good that these awful thoughts will improve dramatically with behavioral change and weight gain. They’ll want to focus on that first since it’s a crucial to both psychological and physical recovery.

It can be helpful for parents to be clear and authoritative at this stage. Parents are used to talking reasonably with their kids about decisions that involve them, but that’s not such a great idea with anorexia. The daughter is ill and terrified of eating. It’s really too much to expect her to sensibly make decisions on therapists, hospitalization and meal planning. (The daughter seems to hint that this is too overwhelming when she says she’d prefer to be “forced” to eat in hospital. It can be a relief when someone–maybe a parent–takes over responsibility.) First and foremost, whether or not to hospitalize is a medical decision and she should rely her GP for advice there. It’s worth remembering that patients don’t come home “all better” so the ball will be back in her court again. I wish I had more to offer but finding a therapist to help them work out day-to-day strategies is really the first step so the parents can find is find things they can agree on and implement consistently.’