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August 07, 2019

Clear Diagnosis, Messy Support

Amber

Trigger warning: mentions suicide, self-harm, eating disorder

Body Dysmorphia, Eating Disorder, Depression, Suicidal Thoughts and Social Anxiety have been my 5-a-side team for the past few years. They have guided me, protected me, but also manipulated and very nearly killed me.

I first visited my GP to talk about my mental health just prior my 20th birthday, around February time 2018.

Despite battling anxiety and depression on and off since the age of 15, my doctor’s record had been almost clear, but on this occasion after 10 minutes of being in the doctors surgery, the diagnosis had been explicit, anorexia.

On the day of the appointment, I was told due to my still ‘healthy’ BMI, that I would be unable to access treatment.

Clear diagnosis, messy support.

My GP, however,  persisted, and I did manage to get a referral to a mental health clinic in York, but unfortunately due to lack of resources, (both in human terms and financial) months had passed and nothing had seemed to change.

Everytime it seemed like there had been a breakthrough, I was let down. Passed from person to person and service to service. I remember having to tell at least 5 professionals what my situation had been and what support I needed, but still, nothing changed.

Each day, my life was more at risk. I was consuming less, exercising more, and hurting my internal organs. My life was slowly been taken by my illness. I had no time for friends or relationships – I had already broken up with my boyfriend and hadn’t seen family in months. Life at home was filled with tension and anger. I was suffering and no one could help me.

Eventually, I was referred to a private eating disorders clinic in Leeds by my GP. This is a service I had to pay for and travel to myself in order to begin my recovery journey.

I am grateful for campaigns such as ‘Our Minds Our Future’ – a campaign that recognises that the issues I have faced should not have been created in the first place, that these issues breach my human rights and that these issues cause a barrier to meeting my needs as an individual.

Having spent 7 months as an outpatient, visiting for two hours, twice a week, I spent over 100 hours of time with my assigned psychologist and dietician. Travelled almost 3,000 miles (2721.6) and spent over £4,500. (£4,620), not to mention the cost of absence from work and petrol money.

What’s worse? This service actually worked. It worked but again due to lack of human resource, just as I was making a breakthrough, my dietician went on maternity leave and psychologist moved to another city. I was still battling anorexia, and was left with no support, no referral, no notes for my GP, nothing to say I had been a patient at all.

So, I was back to square one – clear diagnosis, messy support – and found myself again, sat in the doctors surgery.

Without notes from my psychologist due to confidentiality, my GP was unable to make a clear referral, so at this point, I was signposted to the local Mental Health Hub in York where I was assessed generally. But even this handover had taken months, and due to my responses not fitting any specific category of the assessment I was told that I would not need any further support and was discharged.

A month or so later, I was back in the same assessment room, after taking an overdose of antidepressants with intent to end my life. A clear diagnosis and messy support had left me feeling hopeless.

The second assessment had been more thorough and as a result, I was put on the waiting list for the NHS’ funded ‘Managing Emotions’ 5 week course and a free 12 week ‘Self-Esteem’ Programme.

Although I had three notes under the section ‘Danger and Risk’ in my assessment, (self-harm, overdose and eating disorder) I was made to wait months before been offered support again. This frustrated me and my family at the time but made me think just how high the thresholds must be in the UK to be granted support from statutory services.

Almost 6 months later, I still have not accessed the Self-Esteem Programme, and have been discharged from the Mental Health Hub.

Now, I have no access to medication and live without professional support.

I have learnt some coping methods, and have been open with family and friends. I still have my dieticians mobile number, I have leaflets for a drop-in centre for people at risk of ending their lives and I do know that I can visit my GP again if necessary. But the journey to get to this point, of living independently, has been exhausting.

It has been degrading and it has been frustrating.

I have witnessed issues with;

  • Consistency of staff
  • Ethics in making me repeat my story multiple times rather than having a system in place that captures and retains my mental health medical history
  • The availability of services
  • The cost of services
  • The location of services

And for this reason, I am grateful for campaigns such as ‘Our Minds Our Future’ – a Campaign that recognises that the issues I have faced should not have been created in the first place, that these issues breach my human rights and that these issues cause a barrier to meeting my needs as an individual.

Perhaps if I had known this then, my journey to recovery would have been quicker and smoother.

As a Young Steering Group member for the Make Our Rights Reality ‘Our Minds Our Future’ campaign, I recognise now that:

  • I should not have had to travel miles away for support
  • I should not have had to repeat my painful experiences multiple times –  reliving trauma
  • I should not have been given a diagnosis only to be denied access to treatment
  • I should not have had to spend months without professional support causing risk to my life – due to high thresholds and lack of financial and human resource. 

And although I cannot go back in time, I hope that this message gets out there and that the Campaign will support young people just like me, battling the mental health system today.

Amber is a member of our newly recruited Our Minds Our Future Steering Group.

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