"I think sometimes these conversations are becoming too black-and-white. If you look at other diagnoses, a child deteriorating can have a few causes:
- Inadequate medical / psychiatric care due to unskilled professionals
- Lack of resources (which is the policymakers', not the professionals, fault - most professionals are enormously stressed by being unable to offer what they would like to offer and this is a major cause of burnout)
- Parents being unable or unwilling to follow the treatment plan (rare, but this does occur with all types of illnesses, stigma or no stigma)
- The illness is so severe that despite everyone doing the best they can, the child becomes more sick. I think it is unfair to blame this on either parents of professionals.
It does not sound like this family has boundary-setting issues, it sounds like they have a dreadful and judgmental professional team. But boundary-setting issues can be a problem in the treatment of eating disorders, just as they can be a problem in the treatment of schizophrenia, anxiety, OCD, diabetes, and childhood cancer. I would venture to say that because eating disorders are essentially an anxiety disorder that responds to EXRP, like OCD, there are huge demands for boundary-setting, far and above normal parenting, so families that already had a hard time with this or chose to parent with loose boundaries might benefit from nonjudgmental coaching. Discussing this could easily be part of an effective FBT treatment plan, if a particular family did struggle with it and wanted help with it. Of course some professionals are truly not doing their job, but there are many others who are compassionate and informed and who shouldn't be demonized for trying their best to treat severe illnesses that have a less than 100% full recovery rate at even the very best and most well-funded programs. I think you are completely wonderful and I know that is not really what you are saying - I just think sometimes it can sound like "parents vs professionals" even when the issue is really severity or resources, and it is better to work together . "
This reply came in on Nelly's Blog overnight and it raises an interesting perspective. I suppose I do come across as a shrill harpy complaining about professionals and treatment protocols a lot of the time and feel the need to defend myself, so here goes.
I suspect the person who wrote this may be a professional. If you are, I would love you on my team, please, as long as you explain all this to parents. Knowing that a professional is "on side" and wants to work "with parents" to help a severely ill child is the key. Being prepared to discuss and debate what works for one particular family and try things out, rather than doing tick box "CBT-e for 6 weeks and she should be better. If she is not she is not "engaging"" prescriptions that we see all too often.
What I am kicking back against is the power thing. Irish up put it so well
"I always find it interesting when someone is willing to assume facts not in evidence for the party(ies) who have privilege and power or are otherwise in the stronger position (in this case the CAMHS team), but are FULL of questions and interrogations for the person in the subordinate or marginalized positions. And by "interesting", I mean "makes me suspect they are biased in favor of the dominant discourse".
I am ploughing my way through two other cases involving CAMHS teams at the moment. One here and one in Australia. In both cases, the prejudices and preconceptions of the lead clinician have put a child's life at risk.
In one, the mother is being told that she has "attachment issues" - the child was 7 when this first started and therefore too young to have an eating disorder - and has been denied access to a second opinion from a specialist for TWO YEARS. The lead clinician has called Social Services in, threatened to have all her children "taken into care" and obstructed any kind of treatment for this child by insisting that she stays in full time education, among other conditions. This is an abuse of power. Everyone has the right to a second opinion. I am in awe of this mother's patience and courage as she works through the system trying to ensure that, eventually, her child will receive the proper treatment for her very serious life threatening condition. What physical and mental damage has been done to the patient and to the family is immeasurable and unquantifiable.
The other case involves a mother who was literally screaming for help. Instead, she was again threatened with having her children taken into care. Why? Again, her child was too young to have an eating disorder and she (the mother) was obviously "deliberately starving" her. The child is now in hospital and very very sick. The mother does not have any form of "Munchausen's by proxy". The clinicians have had no reprimand, no rap on the knuckles, no kind of disciplinary hearing at all......Yet.
Sadly, the parents of children with eating disorders are marginalised. Until we can get some kind of balance and we encounter more clinicians who are on our side and want to work together, rather than blame someone with a load of non-proven theories (attachment issues AND Munchausens all in one blog?), we have to carry on fighting.
Having said that, there are some great people out there, fighting with us. I am very proud to not only know them, but also to call them my friends.
Have tried to post coherently or even incoherently on this several times but being thwarted by technologyReplyDelete
I have great sympathy for the poster. As someone who works alongside clinicians (generalists in this case but the frustrations are the same) I know how hard most of them work and how difficult the atmosphere of rationed resources, competing claims of evidence and institutional chaos caused by political whims and "reconfiguration" of services can beReplyDelete
The need to work with families and the frustrations caused by having to do so (whether because any service or professional in the team just hasn't "got with the programme" or because any given family member is a pain in the proverbials) is very real in most areas of medicineReplyDelete
There do seem though to be particular challenges in eating disordersReplyDelete
Whereas I would hope that most clinicians working directly in the field have shed concepts of blame and will be at the very least, agnostic as to cause there are plenty in allied fields who still hold fast to concepts of family as cause. There are plenty of others who really have any limited idea of what these illnesses are let alone how to treat them.ReplyDelete
It will be of limited practical help and potentially of enormous stress and confusion to parents at their most desperate and unhinged if the eating disorder professional tells them to put strong boundaries in place and stop all ED behaviours if the crisis psychiatrist from the same Trust says that eating disorders are about control and parents should stop interfering.ReplyDelete
Likewise if the FBT true to the manual stresses the very real danger of the illness and hypes up the parent's anxiety to stratospheric heights if the A&E consultant then says "calm down dear" it isn't going to helpReplyDelete
I've read all your comments and agree with many of them but I'm not sure that the role of an A&E doctor is to do anything other than ensure that the presenting patient has no acute medical situation.Delete
I've never presented at A&E with anorexia qua anorexia yet have (too much) recent experience of visiting A&E with medical issues, some/all of which arguably are connected with my ED.
As one doctor said as he discharged me last time I went with breathing difficulties, he couldn't do anything because he found no evidence that anything acute was happening. In that instance, I felt upset because it seemed as though he was being dismissive of the symptoms I was experiencing (and probably, given my recent cardiac history, he should have at least done an ECG in addition to listening for asthma symptoms in my chest). But I understand that given the complex web of 24 years of AN, congenital heart issue and recent asthma diagnosis, A&E is there only to treat any acute, emergent problems as they arise and not to assist with unpicking why my health has been so poor recently and making it better. In their eyes, this is chronic.
They have kept me in overnight on occasions when it's been deemed necessary (for example when I collapsed w/ loc for 5 minutes) but otherwise it's down to the various consultants to treat.
I don't know what the instance was when you experienced (or know of someone who experienced) being told to "calm down" but the role of A&E is to reassure patients/parents that nothing awful is going to happen when a situation isn't something that can be dealt with in A&E in the limited timeframe that they are allocated for each patient.
Not sure that this comment has made sense. Essentially I'm sympathetic because I've felt the frustration/distress of believing that I'm being dismissed as some kind of hypochondriac ... but trying to offer the perspective I gained from discussing it with the respiratory consultant who convinced me a) I'm not a hypochondriac; b) the complexity means that there's nothing A&E can do if there's no obvious treatment to offer (such as fluids after a collapse).
I agree. It isn't the place of A&E staff to treat eating disorders except in the rarer cases of physical emergency (collapse, heart arythmias, extreme dehydration) but the problem is a systemic one of an invalidating environment for therapist, A&E consultant, parent and sufferer alike. Most treatment is on an outpatient basis. This often boils down to 50 minutes a fortnight unless the therapist is off sick. Even those services with helplines will generally only man them Monday to Friday 9-5. Where can the parent go on a Saturday evening when the AN is too strong to allow the child to eat? By no current definition is it either an accident or an emergency wjen a 14 year old refuses an evening meal. A&E staff are "right" to turn such cases away (although they can't without at least offering assessment which can involve a long wait with all the other patients who have presented "inappropriately"). But what other resources are there. Who else can the family turn to.Delete
"But what other resources are there? Who else can the family turn to?"Delete
This is key and goes across other mental health conditions as well. The blog of Mental Health Cop illustrates how adults who are acutely ill with MH issues frequently end up in limbo between police cells and A&E because of the 9-5 nature of many community MH teams.
A close friend's daughter was diagnosed with Bipolar disorder at the age of 15. Prior to diagnosis, there had been many acute mental health situations where the mother had nowhere to turn except A&E. The liaison between A&E and CAMHS was non-existent and the situation (involving ambulances, police and once police helicopter if I remember correctly) continued for 5 months before one visit to A&E led to an emergency admission in an inpatient CAMHS unit.
Going back to EDs, the huge gap between inpatient and outpatient services has long been something that I feel is unsatisfactory. While IP, support can be amazing but on discharge to the community, the 24/7 nature of anorexia leaves one feeling quite frightened and alone because, as you say, the fight goes on all day, every day, with the only available help being weekly or bi-weekly appointments (or none at all if you happen to live in the wrong post code).
Personally, I believe that until this huge gap is bridged by someone able to invent/provide a mode of intensive support within one's daily life, the statistics of revolving-door, long-term SEED patients returning for frequent IP admissions will never end.
I just saw a news story about something being offered by an EDS in Berkshire. It seems like a step forward in allowing people to access support through social media when services are shut.Delete
The social media aspect is particularly importance since it may fill the current void that means that people seek "support" (community?) in pro-ana sites.
Yes of course similar things happen in diabetes or asthma. Family counselling can help enormously to resolve some of the issues. However in diabetes or asthma, or even in autism or depression family counselling isn't the maon form of treatment. Families aren't told to go home and work out on their own how much insulin to give. Only the MOST unlucky of parents of an autistic child would have to work out for themselves what to say to the school with no guidelines or helpline or contact from another parentReplyDelete
It wasn't always so with either diabetes or autism and much of the work to improve matters was and still is being done by parents working with professionals and often challenging them tooReplyDelete
That's what Charlotte is doing so well here. Yes we need to work with the good guys in the professional world and even within the imperfect system but you can't expect us tp do it meekly without shouting out when things are plain wrong because that way we'll all remain stuck in the mess we're currently inReplyDelete