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Pushing me when I wasn't ready

Posted By cafewk79

"Pushing me when I wasn't ready"

About: East Glade Centre Long term neurological conditions and allied services / Chronic fatigue syndrome & ME service

(as a service user),

The care I've experienced has not been patient-centered. I have cfs/ME, they didn't seem to want to accept it and were not patient, just banging on about discharging me when I was really ill. 

I felt coerced into family therapy. That was a joke. No screening for domestic abuse was conducted prior to family therapy. 

CFS/ME service liased with East glade and that was all Graded Exercise Therapy, which I consider to be a form of medical gaslighting and it made me bedbound! 

Family therapist said there isn't any reason why I couldn't walk to bathroom (when my Functional Neurological Disorder symptoms were bad - seizures and paralysis) and encouraged my parents not to help me e.g. not to get water for me when paralysed.

They wouldn't wait a few months until I was ready for an intervention, and were pushing to do it when I wasn't ready.

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Responses

Response from Greg Hackney, Head of Service, Acute and Community Services, Sheffield Health and Social Care 2 years ago
Greg Hackney
Head of Service, Acute and Community Services,
Sheffield Health and Social Care

Submitted on 15/11/2021 at 15:03
Published on Care Opinion at 16:18

Hello,

Thank you for your feedback. I am very sorry to hear about your experience of our service. We always aim to work with people at a pace which they are comfortable with but it sounds like you have been left dissatisfied with the recommended timing of interventions and that we could have done more to liaise with other professionals involved in your care. I hope that you are able to re-engage with us at a time that you feel ready and able to access help from us.

Greg Hackney

Head of Service

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by cafewk79 (a service user)

The trust should adapt their treatment to support each individual. I shouldn't be left feeling abandoned if I don't follow how they want me to work. If it's the wrong time for someone to engage in certain work then it won't be useful. If the treatment isn't suitable then I feel it's the trust that needs to adapt and not blame the patient for not engaging. Patients won't engage when they feel coerced into doing something harmful to them.

I did trauma therapy before being stabilised. The psychiatrists didn't seem to understand trauma informed care. I ended up incredibly ill, suicidal half way through therapy, then the therapy was stopped, I was diagnosed with BPD and left for 6 months with nothing.

There is no 1 to 1 treatment for people diagnosed with Borderline Personality Disorder. DBT 1 to 1 is impossible to access on the NHS.

There are no trauma informed psychoeducation groups available. There needs to be support for people with PTSD and dissociative disorders.

If I had been properly cared for with my CFS/ME and not subjected to treatments that I think are wrong, I believe that I wouldn't have ended up housebound for years and bedbound for months. I hope everyone is aware that Graded Exercise Therapy has now been advised against in NICE guidelines. I'm in my mid 20's now and feel like my early 20's have been stolen from me.

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