Andy

A Father's Point of View

Of course every case of Anorexia and every individuals reaction to it is different. However there is one over-riding rule I have learned over the years. The importance of the parents remaining strong together. The illness, through the Sufferer, will always try to drive a wedge between you. Exploit differences. Divide and rule. It’s vital that husbands and wives listen carefully to each other. I’ll come back to this later.

First a brief introduction to our family. I am very happily married to Amanda. We have two daughters, Chloe who is 28, has an interesting job, a flat, a boyfriend and a life. And Colette who is 23.

Colette has suffered from Anorexia for 11 years now. Since leaving school with 3 excellent A levels, it has become more acute. She had a place at University but had to drop out due to Obsessive Compulsive Disorder, low weight and panic attacks. She’s been in and out of Eating Disorder Units for the last four years. She is currently at home, seen by a therapist for two sessions a week. She remains dangerously ill, at a frighteningly low weight. She is completely incapable of forming relationships, working, or living on her own. So everything I say is from the point of view of a parent caring for someone with an extreme, chronic form of the illness.

There are two main areas I’d like to explore. The first is how we, at home, can try to alleviate the distress we experience, whilst the sufferer is in our care. I stress as the plural ‘we’ because if two parents are involved, it is vital not to speak with different voices. For instance Colette frequently may attempt to change her meal plan. I might be overseeing her lunch. She will say ‘Me and Mum agreed something different’ – something inevitably with less calories. She will be incredibly persuasive but in truth she never had that discussion with Amanda. How am I to know? It’s so easy to just give in, avoid a row. However we’ve learned to always stick to the agreed meal plan until we can discuss it openly, all of us together. It’s a fundamental rule: Both carers should agree all aspects of care openly with the sufferer. Otherwise Anorexia will exploit the differences. It will divide and rule.

Anorexia is a secret illness that thrives on deception and half truths. As parents you cannot trust anything your daughter says about food and weight. If someone hasn’t witnessed her eating her snack or meal, then she probably hasn’t had it. But remember it is not the sufferer’s fault that she can’t eat any more than it is the fault of someone, who has a broken leg, that they can’t walk.

I have also learned to try not to get into arguments of logic with her. Anorexia defies logic. It’s very essence, the idea that you can exist without food, turns all normal assumptions on their heads. You’ll never persuade the sufferer to eat through logic. I think one gender truism does apply here. Men tend to approach a problem and immediately want to find a solution. When one can’t be found, we often get angry more quickly than women. Think about traffic jams? Well in the case of Anorexia there is no instant solution. We just have to hang on in until the mindset changes.

As well as being a father it’s important to remember you are a husband. It’s vital that as a couple you find time for each other. Care often falls more to the mother. It’s important to give your wife space to go out and enjoy an evening with friends, away from the illness. Anorexia must not be allowed to stop life for the rest of the family; taking holidays, going to university, whatever. However in the meantime we have to try and keep the sufferer alive. We need help for this.

This is the more contentious area I’d like to explore. The carers relationship with the health professionals. Part of the reason this is so difficult is that there is no known cure. At a fund raising evening last year, for Research into Eating Disorders, a specialist consultant admitted in his speech that; ‘we are as far forward in treating anorexia now, as doctors were in the 19th century in treating TB’. In other words we put the patients into isolated wards and hope. Some get better, many don’t.

What can be done given our present scant knowledge? Well quite a lot I think. First of all, as carers, we must demand that our voices are heard. Between us we have a wealth of hands on knowledge of this condition. It should be tapped into and used.

An attitude persists that carers are part of the problem rather than potentially part of the solution. That must change. Statistics show that the earlier the illness is diagnosed and treated the better the chances of recovery. So if as a parent you are worried that your daughter isn’t eating, has lost weight, is lying about meals, go to your GP and ask for a referral to a an Eating Disorders’ specialist. GPs are becoming more informed but frequently their responses are inadequate. Despite Colette’s obvious symptoms we wasted months and months being sent to a Community Mental Health Team, with no expertise in Eating Disorders. We met with a well meaning psychiatrist who played mind games. He discussed whether, because of Colette’s fear of food, we should change her bedroom into the kitchen and the kitchen into her bedroom! We had to wait over a year for a referral to our local EDU!

Remember, if there isn’t an NHS clinic nearby, you have a right to treatment from a private unit. Also demand that you and your wife are seen by the specialist as well and given all relevant information about your daughter’s condition. The NICE, National Institute for Clinical Excellence, guidelines states this should be your right.

This brings us to the vexed question of patient confidentiality. Here we move into crazy Kafkaesque world, sadly not adequately dealt with in the NICE guidelines. They are contradictory, on the one hand saying ‘carers should be given enough information… in order to help them provide care.’ Whilst on the other saying ‘The rights of confidentiality of adolescents and children with Eating Disorders should be respected.’ Ie tell the carers nothing.

We are trying to care for a young person suffering from a mental illness that often causes her to lie about anything to do with that illness. But frequently we encounter health professionals who refuse to tell us our daughter’s weight, her blood test results, or even what her diet plan has been, whilst in their care. This can put the sufferer at risk.

Quite recently Colette was an inpatient at an unnamed unit. We were out of the country for the weekend. They allowed her to come back to our home and spend a night alone against our advice. We thought she would find the experience frightening and be tempted to not eat etc. They thought it would be good for her to take responsibility. They didn’t make sure she took her medication home with her. She is on Prozac. The night was a disaster. She didn’t eat. She was frightened. She drank a lot of alcohol. She burned her mouth with scalding black coffee. By the time her sister found her in the morning she was a gibbering wreck! The team in question had known her for 6 weeks, we’ve lived with the illness for 11 years but our opinion was not listened to.

I am not having a general go at doctors, nurses and therapists who work in eating disorders. They, by and large, do a fantastic job in very difficult circumstances. Colette is only alive today because of the care she has had from professionals. Gradually units are realising that by working with carers, better results are achieved but the culture of exclusion still persists.

As carers we must question the treatment methods on offer. For instance sufferers often benefit from having full time day patient treatment and not being taken into a ward.

There are several reasons for this. Firstly it is traumatic for a young adolescent to be taken from her family. At a day centre she can go back to normal life after treatment. Secondly, and more importantly, anorexics pick up behaviours from each other. Before Colette was admitted as an inpatient for the first time, her illness only took the form of starvation. Since then she has learned; self harm, laxative abuse, water loading and an acute exercise habit. She learned all these habits from other sufferers in inpatient units. Anorexia is a competitive illness. Seeing another sufferer, who looks to us to be hideously thin, only makes an anorexic want to beat her, become even thinner.

I also think it is time we questioned whether specialist wards of anorexics are always a wise plan. I know resources are stretched, and that it is easier to have such specialist expertise all on one site, but the success rates are alarmingly low – thirty percent is frequently quoted. Over the years I have wondered if in some sort of way the wards themselves don’t become infected with the illness.

Let me explain. All anorexics want to talk about, is calories and weight. Much of life in an eating disorders unit focuses on, calories and weight. The endless discussion of calorific values, the practice of weighing patients daily. This becomes part of a vicious circle of anorexic obsession. Because Anorexia dominates these wards, I fear that the thinking almost starts to collude with the illness.

Perhaps a controlled trial of mixed treatment centres should be tried. Treating anorexics along with patients with other illnesses. Thus the hothouse, competitive, atmosphere of anorexia could be diluted. This would mean having more and smaller specialist eating disorder teams. No bad thing as we might be able to cover more areas of the country.

Overall what is needed is more joined up thinking. More comparisons between the methods and results of the various clinics. Each EDU should have a Carers group. A forum where mutual problems can be openly discussed. The Bethlem runs a group like this. It has been a life line to many carers.

The secrecy, the isolation, the guilt of Anorexia must be pushed aside. We must get on with the job of fighting this affliction. We need to work together, professionals and carers. Then hopefully our daughters and sons will be able to make genuine recoveries and go on to live fulfilling lives.

Andy McCulloch

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