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Monday 19 August 2013
Guest Blog from Jen
Do you have someone in your family who has mental health issues? Oh, I'm sorry, don't you like that label, 'mental health'? Why not? It's nothing to be ashamed of. It's an illness - a biological, neurological illness. It cannot be helped and it's not a choice.
None of us particularly like labels, but:
· if you're in a wheelchair, you're immediately labeled as 'disabled'
· if you're out of work and on benefits, you're labeled 'unemployed'
· if your ethnic origin is African, you're labeled 'black'
· or if you're mixed race then you're labeled 'Mixed Ethnic Background'
· once you hit 65 you're labeled a 'pensioner'
· if you have clinical depression, your label will be that you have a 'mental health condition'
· and if you have anorexia nervosa, you're also labelled as having a 'mental health illness' - but this is the deadliest of all mental health issues
Just because you have a label, doesn't mean you can't look after yourself, does it? Can you still make your own decisions? Well yes, of course you can. If you're disabled, a pensioner, black or white, most of us are quite capable of making reasoned, intelligent decisions.
But not necessarily if you have a mental health issue, and even less so if it's an eating disorder. They are probably one of the most difficult conditions to manage, because they're also the most devious.
They can't help it, but people with EDs lie, cheat and manipulate. They truly can't help it though - it's all part of the wiring in the brain that's 'gone wrong' and is controlling them. It usually manifests itself as a controlling voice that shouts at them that they're fat, lazy and worthless. It shouts that they don't deserve that good food, or that pretty dress. The voice tells them that they don't deserve good friends - who'd want to be friends with a loser like you? But of course the voice is lying. It's all part of the illness, brought on by extreme low body weight. And the desire to lose weight in the first place would most likely (but not necessarily) have been triggered by some event or situation within the sufferer's life that they couldn't deal with.
The voice is scary, controlling. The lower the body weight goes, the louder it shouts and screams. The only way to keep it quiet is to let it have its own way, which means starving yourself (which can be lethal), and doing everything it says - including lying to your loved ones, carers and medical teams.
The only way to get rid of that voice, get into recovery, is by putting on weight. Period. That's it, nothing more (well, therapy helps for some, but not until body weight is restored. The mind/brain can't take it until the brain has been nourished back to working properly again). But putting weight on someone who's that ill is like trying to put out a roaring inferno with a garden sprinkler to the untrained. It's almost impossible to feed him or her as they've turned into a stranger who cries, shouts, swears and can even get violent. It is the most scary time in the world, dealing with a loved child who refuses to eat.
Parents need the help of professionals. And professionals need to keep up with new developments.
So when a young person who may have had an eating disorder since around the age of 13 or 14 suddenly hits 18 (or even 16 in some areas), apparently the law reckons they can look after themselves and make their own decisions. Absolute rubbish! Of COURSE they can't! The individuals who have these diabolically disturbing illnesses can't even be honest to themselves, let alone their loved ones or carers.
What these community care teams need to learn - damn fast - is that adults with eating disorders still need their family to help them on the road to recovery. Because only the parents totally understand their children. And that remains true even when the sufferer has chosen to live away from home. The parents should still be included, however far away they live.
What community mental health teams and specialist eating disorder teams need to remember (or more accurately, learn! Certainly the East Sussex area that my daughter comes under don't seem to know this), is that when someone has an eating disorder, their emotional and intellectual capacity to mature in the 'normal' sense as one ages is stunted by this neurological illness. Whether the patient may have not wanted to 'grow up' or not, the sheer fact is that when you develop an eating disorder, you also experience arrested development.
Many (not all) people with eating disorders, by the time they reach young adulthood, only have the maturity of a teenager. Even more reason to make sure that the parents are involved in their care! Because the best help comes from the family, supported by professionals who understand the illness.
My daughter is 21. She has Anorexia Nervosa and Depression. The AN was diagnosed in April 2007 but had been around for a couple of years before then, we know now. The depression came first, but I never noticed that. Shame on me.
She almost died last November because she was able to manipulate her care team and me. She was helped to almost kill herself by the ridiculous laws we have with regard to adult care here in the UK. Even though she had moved back in with me and my partner the previous Christmas after a period in hospital.
Going back to when she turned 18, I was only allowed limited say in her care, like every other parent in the land. We were living in Eastbourne at the time and were under the care of the Eastbourne Mental Health Team, transferred from the CAMHS team. She'd been in and out of hospital since she was 15 but by the time she was 18 she had got the illness under a certain amount of control, albeit at a low weight/BMI. It was still controlling her big time, but within its demonic grasp she was somehow managing to fight it enough to claw herself an existence, a semblance of a life. Therefore the Eastbourne team deemed she was 'safe' to live on her own with their support, as I had to move in with my partner in Oxfordshire. I was virtually homeless then with no job after years of caring for my daughter and, because she had turned 18, all the benefits I received for her stopped – it was a complicated situation. I applied for jobs in and around the area, but other than a couple of interviews where apparently I was always 'just pipped at the post', no offers until I moved to Oxfordshire where there were more jobs for my skill set – I got a job within two months of moving. My daughter could have come too, but sadly for me she chose not to.
So other than talking on the phone every day and visiting as often as I could, my daughter's care was in the hands of the Eastbourne mental health team, under the guidance of the specialist eating disorder team SEDCAS (Severe Eating Disorders Consultation and Assessment Service) who my daughter was referred to. I felt tentatively optimistic, but that optimism quickly waned when they never fully involved me in her care. However much I tried, I got little or no response from SEDCAS. Worse still, a year after she'd been living on her own, I'd been invited to attend a meeting where they then told me to stop talking to my daughter about food...
What?! But she NEEDS food! Food is her medicine, and for reasons that are completely beyond me they just don't seem to 'get' that.
Of course, as a parent, you want your child to be happy and healthy. So there's no way that on our precious weekend visits I would go on about food all the time as it's important to try to have fun, do nice things. But it is necessary to discuss meals, timings, what we're eating, etc etc. It's ludicrous to think you can't. Of course, I knew that my daughter only told them the 'bad' stuff because that's what the voice was making her do. It was making me out to be the baddy. She would never intentionally do that though. I know that ... and so should they, the supposed specialists!
That was a couple of years ago, and she moved back in with me, as mentioned above, after a couple of months in hospital when she'd gone badly downhill. But she hated living with us, out in the sticks, and missed living in Eastbourne. Unknown to me she had asked her father to help her move back – just when her health was deteriorating badly again and our GP and I were worried. But because of the patient confidentiality laws and the deviousness of the illness, she managed to move and not tell the teams. I had to do that, and then I had to ensure the Eastbourne team were seeing her. They weren't, and she nearly died. It was only through persistence that I finally got the Mental Health Team to meet me at her flat a few weeks later where we found her slumped, about to slip into a coma.
The wonderful doctors and nurses at Eastbourne District General Hospital intensive care saved her life. After a few weeks there where I wouldn't leave her side, she was finally transferred to a specialist ED hospital in London. Eventually she was discharged officially back in July, and is now back in her flat in Eastbourne managing relatively well, but again at a very low weight/BMI. She is back under the care of the same teams, including SEDCAS.
So I was particularly horrified the other day when my daughter told me that the woman heading the SEDCAS team asked her in conversation: "How can we stop your mother from interfering?"
My daughter was upset and angry. She didn't know what to say. Who does that, in this day and age? We're long passed the days of Hilde Bruch and her extremely outdated treatment plans. But it seems this woman, who I'll refer to as 'A', is still working in the dark ages. We talked about this at length, and I've spoken to other parents who have actually been blamed for their child's eating disorder by this woman, and another young woman who says she was helping her to remain at an unhealthily low weight.
Speaking to her CPN (Community Psychiatric Nurse), she suggested we added this subject to the meeting that was due to take place on Friday, the day before our holiday. I agreed, albeit reluctantly as I was concerned about any ramifications my daughter may experience. The CPN said she'd get back to me as a time still hadn't been confirmed, despite this meeting being requested, by the team, a few weeks previously. I never heard from them. I rang around everyone on the Thursday, left messages everywhere, but no-one got back to me. Then that evening on the phone to my daughter, she told me she'd been handed a letter earlier that day, written by A, saying that she felt the meeting wasn't necessary.
What?! Of COURSE it was necessary! We were going on holiday the next day – there were a few things that needed saying. Instead, the letter was basically telling my daughter to tell me not to talk about food, exercise or have any ED talk during the holiday! I know, I've seen it. I have a copy of it. I'm incensed that this woman cannot be bothered to turn up to an important meeting and discuss, face to face, my daughter's care. Her approach currently smacks of trying to create a rift between us.
I have to start really shouting loud now. I need this so-called 'specialist' team to get up to date with their care regime. Strong letters will be written, I can assure you. But my daughter and I are currently on holiday in Norfolk, and we intend on having a lovely relaxed time – as relaxed as it can be with the demon third unwelcome visitor of Anorexia Nervosa looming over us. We're trying to fight him too.
She told me this morning that she thinks I have more ED and AN knowledge than the specialist team … but I'm no nurse or therapist! I'm only a mum. That, to me, is very, very scary.
We need to act now!
· Firstly, contact your MP about getting the laws changed to protect your loved ones with eating disorders, especially if they're over 16. There is a group of people on the Facebook forum for FEAST – Family's Empowered and Supporting Treatment – who are actively doing this now, but everyone can help
· Please, if you are at all concerned about your community care team's approach, speak up! Ask them what recent research they've read. If necessary, write to PALS and your local MP. That's what I'm doing next week.