"Unwavering support"

Our daughter was given an emergency referral to CAMHS ED team in August 2021 following significant weight loss over the previous 4 months and significant restriction of calories and food group.  We were incredibly fortunate to obtain support at such an early stage and will always be truly grateful for that.

Caring for a child with an ED and all the associated anxiety, self-loathing and despair is the hardest thing we have ever done. The CAMHS team provided the necessary support to allow us as parents to make the right decisions and to stay strong in the face of a manipulative disease. 

For a year, we lost our daughter. It was the ED speaking to us rather than her. We had to stay strong and calm to ensure that we could re-feed her.  The ED is devious and all the usual tricks were played but the CAMHS team took us through every hurdle and setback that we faced and supported us until we could overcome them. 

This was never going to be a linear journey and we were never promised that it would be, but the CAMHS team as well as being firm with us when they had to be were good at pointing out progress when it had been made and asking us to hold onto that.  To have weekly checks on not just weight but all the vital signs, together with a safe space for our daughter to pour out all her emotions was invaluable. 

Our daughter was in treatment for 3 years.  She made good progress after the 1st year but was still in significant danger of relapse.  CAMHS never gave up on her and when the time was right moved her onto CBT.  The time was right when her brain was no longer malnourished and she had gained sufficient weight to allow her to fight back herself against the ED thoughts.  I have learned the hard way that this takes time and re-feeding is crucial. 

As a parent we don't want to have to constantly battle with our children.  We learnt quickly that we had to view it as battling against the ED.  It is disease that could have torn our family apart, had we not been united in wanting to battle against it to allow our daughter to be free of it. 

CAMHS referred me to carer support and training courses run by BEAT.  I found the Developing Dolphins course very helpful for 2 main reasons.  It educated me on what language to use around my daughter re food, weigh & body image and secondly it took away some of the isolation and loneliness that we had been feeling as parents of an ED sufferer.  To hear others stories, while harrowing , gave me hope.

EDs are brutal on family life.  Our experience was that we were having to treat our teenage daughter like a toddler again.  We couldn't trust the ED not to convince her to hide food, lie about having food, exercise.  Every movement had to be watched for 18 months. Our world became smaller as socialising became very difficult and we only had energy to look after our daughter and maintain our jobs.

All that is now in the past .  Our daughter has now gone off to university, where she appears to be thriving.  This move was fully supported by the CAMHS team and they provided therapy on coping strategies as she was moving away from home.  We continue to be vigilant and I think we will always be aware of the possibility of relapse but life is being lived to the full.

I have a few thoughts on being a carer of a person with an eating disorder:

1.  Stay as calm as you possible can, even when every sinew in your body screaming at you to shout or cry.  Your child will react to your reaction every time.  I did cry on occasion (there were a couple of crisis point where I just couldn't help myself) but because I had maintained calm prior to that those tears really hit home with my daughter

2.  Always remember, it is the ED doing this, not your child. Try and separate the 2.

3.  Attend all your CAMHS appointments.  You don't need to agree with everything they say, you can have discussion with them and put your viewpoint across, but they are the experts on EDs.  You are the expert on your child - work together, it makes things a lot easier.

4. Go on a BEAT course if you feel able (not everyone wants to talk about it).

I firmly believe that without early intervention and unwavering support from CAMHS, our daughter would not be away at Uni and doing well, and to be honest, may well have died.

Thank you to the whole team.   We owe you more than we can ever repay.