Category: Uncategorised

Ongoing Anorexia Nervosa? – from the beginning

13 years ago my son (who then identified as a girl) began self harming. He started doing this privately, it was a reaction to the loss of one of his close friends. We were obviously very worried – he self harmed by hair pulling and cutting, never deeply at this stage, but it felt very shocking to me – I didn’t know how this could help him. We talked about his feelings of loss – which I felt was also a reaction to his dad leaving and not seeing him for some years when he was very young. I blamed myself of course. We all do as parents. I was way out of my depth with this, at that time while self harm was around, it was not as prevalent as it is today, it seems as if it has become ‘normal’ in our world to cope with difficult feelings by taking it out on ourselves.

This was said by my 80 year old dad recently ‘we didn’t have all this depression or problems in my day, we just got on with it’….’em yes you did’ was my hushand’s response – it was just not talked about, now its all out in the open. I think that yes difficulties with mental health and adjustment to change (such as in adolescence, wartimes, family estrangement, death) have always been there and I do not think that people historically have ‘coped better’ – there was probably even more hidden distress, but of course we took it out on each other, family abuse was common, not in all families, but it was legal for a husband to beat his wife with a stick (so long as it was not thicker than his thumb) until just over 100 years ago, this attitude of hierarchy and physical punishment would have taken at least one generation to begin to move away from, The old joke saying ‘he hits the wife, the wife hits the children, the children hit the dog‘ is not that far back. And in schools, it was not until the 1980’s that corporal punishment was abolished in schools. What we now see as abuse was normalised in our culture until quite recently. So where do we put all of this anger and distress? It seems like a lot of people take it out on themselves, some still take it out on other people – (think gang culture, family abuse, twitterstorms and facebook).

Why though do we not have the inbuilt skills to manage distress and turmoil, confusion and loss? How do we learn these skills in the first place? Is this the old nurture/nature debate or is it also something we lack as a society and in our communities. For example, some people can’t share their feelings, indeed going back again to the ‘old days’ no one was encouraged to do this, it was all locked away in some Harry Potter cupboard under the stairs and not talked about. But families stuck together then, or did they? I can see that families were more ‘closed’, and had to rely on themselves, if you come from a dysfunctional one, (who doesn’t) bad luck, no one else is going to help. The welfare state took over voluntary  organisations in the 1940’s, so  maybe there was some help, but as I know all too well, it depends on who you get to work with – we all know people take themselves to work with them, and social work/psychiatry/nursing has changed over the years. Caring people who want to make a difference is a thing of the past as far as I can see, a lot of these services are maintained on a skeletal staff who probably started off wanting to help but after a year or so are so burnt out that its all they can do to get out of bed and to work in the morning. Jaded, tired and lacking motivation. And management, don’t get me started.

So, where do we go now? don’t we need something different? and therein lies the problem, services complain about not having any money or staff, but isn’t the problem having the right people to run the services in the first place? and where does that start, oh – government, and we all can see the mess that’s in (I’m writing this with the whole Brexit debate STILL going on). It no wonder no one knows what they’re doing with providing services, the countries leaders are at a loss as to who is running their show.  Money has always been an issue for these service providers, always, I don’t think we can blame failure to provide services on that alone. After all, families have to cope with no money, you don’t see people who are so called ‘not protecting their children’ or whatever saying, ‘well we didn’t have enough money so we thought we’d lock little jimmy in his room until he stopped crying’, families still have to make it work without much cash, its about will, care and love. I know I am simplifying it, but honestly? how can a service blame lack of resources for failing to meet needs when they would still say a parent is abusive because they don’t have the resources to cope? Its an odd argument, but resources aren’t just about money – its ability, and from what I have experienced, in the case of my son, skills and having the right people linked with him are the only times when he has any chance of success. And those times have been sadly lacking.

So self harm is linked to Anorexia Nervosa, I learned this when my son was in his first eating disorder unit at 15. This was an adult unit. And this is also a long story but it consists of our local CAMHS failing to recognise that he was developing an Eating Disorder, despite all of the signals being apparent (as was evidenced by the Government Ombudsman later on). And no, I don’t think that this story is unusual, the country is littered with individuals who are struggling because a ‘specialist’ worker did not think of asking the right questions, or think about joining those dots up, or even if it is apparent, has just been lazy and hasn’t put in place what that person in front of them needs. Often this is due to ‘a lack of engagement from a service user‘. So now, with your fear and your illness that you have to try to find ways to cope with every day, you are blamed because you ‘aren’t engaging’. What about the idea of ‘engaging people’? whose role is it to engage people in services anyway? Easier though to place blame on the individual rather than actually take responsibility as a service for failing them. I am angry with these services for not recognising that my son needed and still needs the right help, and that they cannot provide it. And I do think this is down to laziness at times, and sometimes its due to not having the right staff to really ‘link’ with that person, and sometimes it is simply that they really do not know what to do. But I would have a lot more respect for services than I do if I had been told that in the first place.  Because they talk in riddles, did you know that ‘Recovery’ is not actually ‘recovery’ in the sense that you or I would think it meant. Recovery in NHS ED units actually means weight restoration, and then the service has been successful. So don’t rely on their statistics, ask how many people have managed to maintain their weight outside of the unit and for how long? That will give you a different picture, )but they might not have those answers, and if they did they wouldn’t tell you!)

So our story is one of bitter ‘misfortune’ with services, high risk, severe and enduring eating disorders and severe and ongoing mental health I am certain often is. And I am the ‘soft’ version of this story, the person who has experienced this directly? well this might cause your hair to curl and your computer to start smoking if he wrote it down, although it is tinged with a sadness and lack of hope that would make you want to cry.

The first admission was partially successful, in fact, it was stated in the service records as a success, my son had reached weight restoration. So then he was discharged, with support, oh wait, no sorry I meant without support. He was 16 by this time and had been in a unit for 8 months. He told them that he did not want to leave at that point because he had not managed to eat a meal outside of the unit. The unit manager was something of a bitch, she walked and looked like she was a cowboy, but wore high heels so was the strangest sight when she appeared following the ‘clip clop’ noise that warned everyone that she was on her way. There were the most amazing women and men who formed the patient group when my son was at this particular place; who created their own culture of hilarity – sadness and pain bonds like no other.  It was a different world entirely, of clever conversationalists and the odd meltdown from patients, all stick thin and waif like, big eyes staring out from lost souls. Staff were of two groups, the ones that wanted to make a difference and the ones who were there for their own reasons. Some were questionably odd which I found hard to swallow. There was a magazine that was lying on the table, it showed pictures amongst shocking exclamation marks of minor and major celebrities ‘before’ and ‘after’ weight loss. ‘Anorexia’ it cried out. Me to staff member: ‘just thought I’d let you know I found this lying on the table, I thought you’d want to know as it doesn’t seem appropriate here‘; staff: ‘its fine, its normal life‘. ?? Oh ok, really? but I thought we were trying to establish that this type of thing actually isn’t normal life and this is why these patients are here?! Like I said, some staff weren’t there for the right reasons…. But then this was the place where I was told I couldn’t have a cup of herbal tea because they considered it an ‘anorexic behaviour’, me: ‘ but I’m a visitor and not anorexic?’ I have never had any such conversation anywhere else, it would never cross my mind that drinking herbal tea is considered as anorexic.

So that was the first experience we had of an ED unit. This was a private and NHS unit (like most of them are). The discharge was as messy and disorganised as the stay, like I said, with no support for my son, which we struggled with getting him from the GP and the GP in turn struggled with finding my son support given that the CMHT gave him an ultimatum which he had one hour to decide by (via a phone call), and if not they would discharge him, their condition was ‘you have to be seen and dealt with by a linked Eating Disorder service – which represented this rather haphazardly dressed woman with unbrushed hair who exclaimed that she ‘loved working with people with eating disorders‘  whilst literally rubbing her hands together (OMG she was frightening),  So that way of dealing with my son did not work, I told them that it wouldn’t but they wouldn’t listen.

So straight away his weight reduced until he got so ill, whilst I and the GP was struggling throughout this point to get some help, the CMHT made an apology because’ they hadn’t thought it through’, and realised after all, that they should not have pressured my son in the way they did. Following this they were great. They even gave my son regular meetings and in the end the best care coordinator he had ever had (sadly it wasn’t to last). But the difference was that this woman was not scared of her managers, she did not always tow the line, I could see that (I believe that she has since been promoted). She worked for her patients and always had the care and mental health of her patients at the forefront of her work. My son trusted her and even cried when he said goodbye to her; but we moved our of her area and sadly we lost her as a result. And the new team? utter shite, I kid you not.

You see how important having the right people linked with someone who has severe mental health problems is. It took me a while but I realised this after we had to leave Chris (the good care coordinator as opposed to the ones who are on the wrong side). While we all want to have the answer for our children – even when they grow up – and especially when they are suffering with something such as an Eating Disorder, I have learned that we are not always the people that can help, in fact we can’t do it for them. With the right help they may be able to learn to live with it (especially at the stage my son is at in his illness), but only with the right players in the field…

Introduction

This is a personal blog which aims to reach people who have experienced or are experiencing an ongoing and severe eating disorder in their families – or with friends. This is an insidious illness. It takes everyone within reach with it. I have seen my son suffer over the years with little or no support or real understanding from services – not their fault, but no one seems to know how to treat this illness.

In the UK weight restoration is seen as important by Eating Disorder Units, alongside Cognitive Behavioural Therapy, group therapy, maybe some one to one, but looking at it 10 years in, my experience from seeing it, is that this approach does not seem to work for most sufferers.
People who succumb from this disorder seem to be high on the IQ side, really very bright individuals. It is sometimes thought that this is a pre requisite to being good at manipulation, but what does this mean really? It simply means to me that they will not be fooled by systems such as CBT which is designed to ‘trick’ the brain into a different behaviour, that these people usually understand their motivations and disordered behaviour better than anyone else including professionals who work with them. This leaves them stuck in rather than manipulating. It may be that there is a therapeutic process – some therapies might work for one person and have no impact on another which is firstly directly in conflict with the NHS treatment system that will treat with practice which is thought to be the most effective from research. Secondly, a therapeutic process can take years to find something that works for an individual and may also depend on opportunities rather than ‘readiness to change’ and other, more complex reasons such as social situation.

Amongst other things services look at ‘recovery’  on weight gain (which is the way Eating Disorder Services measure their statistics and justify their success to government bodies). In short, this is not recovery – it is what it is – weight gain which is very uncomfortable for most sufferers.

This system is what we have found within services we have asked for help from for our son. After 10 years, we feel it is time the powers that be recognise that this does not work for everyone, from what I have seen, it barely works for anyone who has this horrible disorder.  Unless services get in at a very early stage, and I mean early, this generic approach has little chance of success in my experience of watching many people who suffer from this illness trust and be failed by this way of working.

More often, long term, or SEED sufferers need to be supported to try to find a way of living with their eating disorder, and this is where we have got to. As sad and painful as it is for us as a family to accept that our son may never be ‘well’. We need to be realistic. And he wants some quality of life, which to him means not bingeing and purging to stave off hunger, and trying to eat at least something to sustain some weight. But are there services prepared to try this way of working?