Would you be surprised to learn that in 5 years, a GP has less than 2 hours of training on eating disorders and 1 in 5 medical schools in the UK don't cover the subject at all?
It is absolutely appalling and not the fault of the GP, I am not berating them at all. What hope can any sufferer or parent, carer, friend etc have in finding out how best to help their loved one when visiting their GP which is usually the first port of call, when they have next to nothing training on the subject? It must be frustrating for all concerned.
Since this year for EDAW Beat want us to share our experience with GP appointments for Anorexia, I am going to share our story/stories and how we got on.
Our First GP Appointment
The first time I took Cole to the GP Cole had already been suffering from Anorexia for a long time, she wouldn't ever go to the GP, I tried and tried but she refused. When I finally got her there he told me Cole was Anorexic (no sh*t Sherlock) and referred her to CAMHS (child and adolescent mental health service) I thought this was the answer to all my prayers, I thought that CAMHS would be a wonderful department who knew all about eating disorders and would cure my daughter, I thought I finally had light at the end of a very long and dark tunnel.
How wrong I was, CAMHS was a complete waste of time, they didn't have specialist eating disorder experience, and Cole saw around 3 different people, all of who were only concerned with what she ate, or rather didn't eat. One lady actually told us to get Cole a pet, we had a dog but she said to get something small that she could sit and pet after meals to take her mind off food and eating so we got 2 house rabbits. To cut a very long story short, our rabbits lived 11 years and Cole is 31 in July and still Anorexic, great advice wasn't it? But as parents, myself and Simon (Coles dad) would have done anything if we thought it would make her better.
Fast forward a couple more years, Cole had been through CAMHS without success and also been an outpatient at a young person's psychiatric hospital in Manchester, this was also a waste of time, this was a unit where they had both inpatient and outpatients and all were children aged from around 8 to 17 who suffered from serious mental health issues, it wasn't the right place for Cole at all, all they did was show her rooms and say "if you don't eat you'll end up in one of these away from your mum and dad and your sister" helpful, not!! They also accused her of all sorts of stereotypical anorexic behaviour which for triggering purposes I won't go into, and they strip-searched her numerous times without my knowledge. Cole hadn't done any of the things she was accused of, Cole has Aspergers Syndrome and can't lie, I repeatedly told them this but they didn't listen. After a huge formal complaint, Cole didn't go back there.
I took Cole back to the GP, she was around 16 at this point, it was a waste of time, the GP ( a different one from the 1st one) told us that Cole was now classed as an adult in the eyes of the NHS and that there wasn't (and still isn't) any NHS help for eating disorders in our area, and not just our area, the whole of the North West of England. And that was that she just dismissed us like rubbish, I cried and said what was I supposed to do and she shrugged her shoulders!
When we got home I began googling how to get help and private health care, we couldn't take out private health care for Cole because she already had the diagnosis of Anorexia a pre-existing condition. So I googled some more and then found that if I got an appointment with a private EDU (eating disorders unit) I could apply for funding from the PCT, I spoke to someone at the private EDU and said we were looking into remortgaging our house to pay for Coles care, we had an appointment a week later. They advised me against doing that and told me to push for the funding, they said if we remortgaged and paid for the care, the NHS would see it as us "going in the back door" and we wouldn't get NHS help if any were to become available.
So once again, I took Cole to the GP, she was new and had only been at the practice a number of weeks, my mum came with us for moral support, I explained that we needed a referral to the private EDU so we could apply for funding for treatment. And I nearly fell off my chair when she said "that's fine, who do I refer her to?" I explained and that was that the ball was rolling, finally after over 3 years.
So now we had the referral, we applied for funding, we were rejected over and over until the last time we applied. I rang the department for what felt like the millionth time and I spoke to a lady and basically pleaded with her to help us, she had a very young daughter and I asked how would she feel if in years to come she was me and her daughter's life was in someone else's hands? Not long later, we found out we had the funding.
Cole did go through private care for her Anorexia but sadly it didn't help at all, the treatment is always about upping calories, putting weight on, weekly weigh-ins, blood tests, mixing with other girls and boys with eating disorders and learned behaviour. After over a year of treatment, Cole was told she was being sectioned under the mental health act and she was given a month to live, she was 17 years old, Simon and I were absolutely terrified, I can't put into words how horrific it was. Because of Coles Aspergers the Dr at the private EDU decided being an inpatient would do her more harm than good, and sectioning her wasn't right, he thought she would pick up too much learned behaviour from the other patients, so he decided she should do "inpatient at home" she had to stay in the house 24/7 and could only go out for 20 minutes to the supermarket to choose foods once a week if driven there and back. She was unable to go to school, she was in the lower sixth form at school and studying for her A-levels, and had only been there a month. I bought books and used her textbooks and taught her myself, I hadn't ever done any homeschooling and had no experience at all.
Cole hated being at home all the time and she missed out on so much, I was glad she wasn't an inpatient but it was extremely hard too. Cole did do well and eventually, when she was around 19 she was at a healthy weight, if still very underweight for her height. Sadly I soon recognised the behaviour in Cole to suggest she was struggling again, and unfortunately, it wasn't long before she was back at square one.
Once Cole turned 18, I could no longer take her to the GP, or ask for referrals, as an adult, it is up to her to ask, it wasn't and still isn't up to me. Since then she hasn't had any treatment for her Anorexia, she doesn't want to get better, it kills me every day, people often say "can't she see what it does to you?" of course she can, but the eating disorder is much stronger than she is, I have spoken about the Anorexic voice previously and it is just too strong.
One other thing about GP appointments which does happen to lots of people and not just people with eating disorders, every single thing Cole has a GP appointment for, they blame her Anorexia, every single thing, it is infuriating and doesn't help Cole have any faith at all in the GP's. We did have one GP for a few months who was incredible, her mum had suffered from Anorexia for all of the doctor's life and she knew so much about it but she left after a short few months, it was such a shame as she was brilliant and understood.
So as you can see, our GP experiences haven't been great but with less than 2 hours of training, I'm not really surprised. I think more training is definitely needed, training on the anorexic voice for one would be useful, knowing that a person's weight doesn't define an eating disorder, you don't have to be emaciated to be Anorexic. BMI needs scrapping, the need to know that there isn't always a reason for an eating disorder, some people are predisposed to mental health issues, especially if their family members have mental health issues, I was told Cole was always going to be Anorexic, she was predisposed to it, there isn't always a reason, sometimes it is control, but not always. I wish I could write what I think would help for GP's in training but I'm pretty sure nobody would listen to me.
If you would like to sign the open letter from Beat to campaign for more training for GPs, you can sign that HERE.
This post is already super long and is about the GP training and our experiences of GP appointments with Anorexia so I don't want to divulge too much about other things, but I feel like I have so much more to say so I think it's best if I write another post about how I realised Cole was Anorexic, signs to look for, myths, the voice and Henry, how to get help for an eating disorder and other things, that may help someone.
I will post that post in the next couple of days.
Below are several websites and helpline numbers for those who may need them.
I hope this post has helped Beat with the theme for this year's EDAW and I hope it's helped you understand some of our story of how we are living with our child having an eating disorder.
See you next time, thank you for reading
Zoë x
If you or anyone you know may need to contact someone about eating disorders, you can use any of these:
Anorexia and Bulimia Care (ABC)
Advice and support for anyone affected by eating problems.
Association for Family Therapy and Systemic Practice (AFT)
Information about family therapy, including a directory of therapists.
Beat
Offers information and advice on eating disorders, and runs a supportive online community.
Also provides a directory of support services at HelpFinder. British Association for Behavioural and Cognitive Psychotherapies (BABCP)
Information about cognitive behavioural therapy and related treatments,
including details of accredited therapists.
British Association for Counselling and Psychotherapy (BACP)
Professional body for talking therapy and counselling.
Provides information and a list of accredited therapists.
National Institute for Health and Care Excellence (NICE)
Produces guidelines on best practice in healthcare.
Overeaters Anonymous Great Britain
Local support groups for people with eating problems.
Papyrus HOPELINEUK
Confidential support for under-35s at risk of suicide and others who are concerned about them.
Open daily from 9am–midnight.
Samaritans
Freepost SAMARITANS LETTERS
Samaritans are open 24/7 for anyone who needs to talk.
Samaritans also have a Welsh Language Line on 0808 164 0123 (7pm–11pm every day). Student Minds
Mental health charity that supports students.
Tommy's
Information and support for people affected by stillbirth, miscarriage and premature birth.
YoungMinds
85258 (Crisis Messenger for young people – text the letters YM) Committed to improving the mental health of babies, children and young people, including support
for parents and carers.
