The Sophie Hartwell Trust

Sophie Hartwell Trust,
PO box 94,

We really would be most grateful if you would read the letter below and if you can support Sophie we would be even more grateful.

"Eating disorders are not about food and weight doesn't define the severity. I personally don't think it is helpful to others to have images of myself at a low weight potentially " triggering" fellow sufferers, as it is so competitive".  (Sophie) 

Our daughter Sophie is a caring, intelligent and articulate 23 year old woman who developed anorexia nervosa and depression in 2011 at the age of 18. Sophie also suffers from anxiety , mood swings, self harm , OCD and body dysmorphia.  Sophie's illness was aggressive, she went from a normal healthy weight to an emaciated state and was gravely ill, all this within 5 months. Without medical intervention at that time she would have died, Sophie says she couldn't stop, that she couldn't eat, that it was too strong , she would have continued losing weight if there was no intervention and that would have meant imminent death. 

Sophie remained in hospital for two months and was fed via a naso gastric tube to a more stable weight (still extremely underweight) , before being discharged home due to there being no bed available for her at an eating disorder unit in Exeter.

Three months later Sophie was admitted to the eating disorder unit in Exeter where she stayed for 6 months. The treatment she received there was not successful, it was hurried and was not tailored to her needs, their approach to treatment did not work for Sophie. There was not enough support and she was pushed on to the next stage of treatment before she was ready and this had a detrimental effect on her. As a consequence Sophie's condition worsened and became more complex, instead of the NHS supporting and trying to understand her needs, unbelievably she was asked to leave at a point when she desperately needed their help the most. Her last week there she didn't eat a thing and was exercising over 10 hours a day all whilst being  "in treatment". 

Consequently she was discharged with no support whatsoever in the community. Throughout Sophie's illness there has been long, long periods of waiting for specialist therapy with only weekly appointments with our GP and occasional meetings with a community psychiatric nurse for support. No therapeutic treatment on a regular basis at all.

Although Sophie's weight increased during treatment at that time, Sophie has always said; Eating disorders are not something you have control over, it controls you and the illness is not always visible , I have been at different weights throughout my illness and even at my lowest weight, mentally I was not as bad or as complex as I am now. I want to dispel the myth that you have to be permanently emaciated to have anorexia."

During Sophie’s illness we have been met with a succession of waiting lists for psychiatric help and psychological therapy culminating in no treatment at all due to mistakes being made, clerical errors or a case of Sophie being forgotten about and there has been an admission that many mistakes were made along the way but this does not get back the years she has lost.

When an eating disorder is first diagnosed it is vital that the correct treatment, therapy and support begin swiftly following initial diagnosis, if the patient is to stand the best possible chance of complete recovery.

This did not happen in Sophie’s case and now just over six years down the line her condition has become so complex that there is nowhere in the UK that will fully meet her needs within the NHS or privately according to a consultant psychiatrist who recently assessed Sophie. It has also been concluded by the professionals involved with Sophie that she needs intensive, inpatient treatment but after several attempts to find an appropriate place for her, there has been no success.

Sophie has lost vital years of her education due to anorexia nervosa and her future university and career prospects have had to be put on hold, she desperately wants, needs to be free of this horrible illness so she can get on with her life and live her dreams. Sophie has become extremely knowledgeable about treatment options and has identified the fact that in the UK we are about treating the symptoms rather than the cause, treating the physical rather than the mental side. The general feeling is that weight defines the severity of your eating disorder, when the body is healed the mind is as well which of course it has not, at that stage the sufferer is at their most vulnerable, treatment in the UK is all about learning how to manage the condition rather than curing it.

In the US they believe in full recovery, they include in their therapy vital groups that are a big part of eating disorder recovery. These groups include nutrition, portioning, exercise, body image, outings, three transitional living stages and visits to restaurants and cafes and all with full support. The US therapy model has been proven to work with high success rates for a full recovery and it has been identified as the type of treatment that Sophie needs in order for her to make a full recovery.

During an assessment last year Sophie was told that due to trauma when she was 14 (we had moved away, her Grandfather passed away suddenly, she had started a new school and couldn't settle and her self-employed father had an accident at work and broke his back in two places). Sophie's social development is stunted and she remains at 14 years, she was told also at an assessment with a psychiatrist that 'you are not an adult, you have never experienced life as an adult and you are very child like in some ways'. Socially she has never experienced going out and socialising, celebrating milestone birthdays, independence, going to university and many of the other aspects of growing up. Years of Sophie's life have been wiped out and all because she has been denied the proper professional treatment she should have had. Her life could be so different now.

Sophie has plans and aspirations for her future and these keep her going from day to day, she wants a career, a social life, fun, things we all take for granted.
Please don't assume that because Sophie is 23 she is not a worthy cause, she has lost so many years of her life already and she is not like any other 23 year old.

Her life is quite solitary without friends and her days are spent exercising and carrying out rigid routines at home all of which involve calorie burning, her time is spent mostly with me, her mother. All outings are very difficult for her, she is afraid of becoming contaminated with calories, bacteria, etc therefore avoids any contact with anything or anybody. Sophie struggles/battles through mealtimes restricting and refusing food, constant support is needed and she will only eat from a small list of foods and only if it is prepared and given by me.

Mental illnesses are deadly and anorexia nervosa has the highest mortality rate of any mental illness.

We know we are facing a huge task but if Sophie is to have any quality of life and be rid of the misery that is anorexia nervosa which has so far massively interrupted every aspect of her development as a young person, we have to do something and we need to do it now. To be able to get Sophie in to treatment this year would be life changing for Sophie and for us as a family and we hope and pray we can do this for her sake.

As Sophie's parents we want what all parents want for their children, for them to live a long, healthy and happy life to fulfil their hopes and dreams and enjoy every moment. Sophie's life can be like this, we just need your help to make it happen for her

Thank you on behalf of Sophie, Stephen and Diane for taking the time to read this letter & for your support.

All of your donations would be most gratefully received and will enable Sophie to be a step closer to the treatment she do desperately needs. Thank you.
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Diane and Stephen Hartwell 
Sidford, South West England, United Kingdom

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