I survived a Traumatic Brain Injury 43 years ago at the age of 20. This affected my mental health, but community mental health teams have no experience or knowledge of the challenges and complications faced following an Acquired Brain Injury and any assessment carried out was inadequate due to the lack of experience or knowledge. 

I requested a referral to Neuropsychiatry but this was declined due to the fact that I was “too far post injury”. The consequences of my traumatic brain injury are for life. I am not going to wake up one day and be recovered and living a normal life like you see in the movies!  

I decided to pay for a private assessment and diagnosis by a Consultant Neuropsychiatrist. Strangely I had to be referred by my GP after providing them with the name of the Consultant that I wished to see.  

I paid £450 for the Consultation which would be carried out in Bristol as there were no Consultant Neuropsychiatrists in Wales other than the one that had declined the referral from the Community Mental Health Team.  

The Diagnosis was Complex PTSD (Post Traumatic Stress Disorder), Organic Depression and Personality Disorder. Over 10 years ago I questioned why I was not able to access treatment for the Complex PTSD under [my local] Mental Health Teams and I was told that it was because I lived in a different Health Board at the time of the initial diagnosis.  

It was, in fact, diagnosed [in the same health board area] by a leading expert in PTSD – and at the time Health Board boundaries were different and I actually received all Hospital Medical treatment [in the same area]. 

The Complex PTSD has now been recognised by [my local mental health teams] but not treated. The diagnosis of Personality Disorder has not been recognised or treated.  

When I questioned why this diagnosis had not been addressed I was told that it was very similar to any other mental health condition so wouldn’t be individually assessed or treated. I feel like it is being ignored and I am being pushed into a ‘dead end’ because I am complicated, too costly and too old (63).  

I recently spent 4 weeks in [a] mental health unit and there were no staff with experience or knowledge of the affects of a brain injury. I was amazed to discover that on each ward that I was admitted to more than 22% of patients had suffered an Acquired Brain Injury in the past. None were receiving adequate or appropriate assessments, treatment or care. I am in limbo and becoming tired of working hard to continue to live with the range of daily challenges that I face.  

These issues actually effect anyone living with a Neurological Condition. (See the Back The 1in6 Campaign by the Neurological Alliances of the UK.) 

Speak your truth: your own experiences can help create change

If you want to share your experiences around this diagnosis you can take part in Platfform’s Truth Project.

Platfform are campaigning for a review of the use of the diagnosis of PD. Add your voice to our call for change by sharing your story. We will share these with Welsh Government and use them to strengthen our campaign.

For more information, and to access the survey, click here.

If you are in a mental health crisis, please read this paragraph

If you have been affected by anything in this story and would like to talk to someone you can call Samaritans on 116 123. You can also call the national mental health support line for advice on 111 (press 2.)