Mad Covid Voices, with Rowan

20th April 2020

My trauma therapy ended suddenly 18 months ago, as funding was cut. I see my GP every 6 weeks and see a neurologist. I am waiting for a place for neuropsychology therapy to help with sensory issues.  I have OCD, but there are no services in my area to help with this. I have an eating disorder but as my BMI is above 16 I am not able to access secondary care until it falls to 16 or below.

How has your care changed since Covid19?

Since secondary care funding was cut, I  have been seeing my regular GP face to face once every 6 weeks. I find telephone conversations very difficult, as I cannot process the information. I also find new or unfamiliar people (locum GPS etc) very difficult as it is very hard to process a new voice and unfamiliar situation even face to face.

Since the Covid outbreak, a email from my surgery told me  all face to face GP appointments have been stopped and the only way to contact a GP is by phone and speak to a locum. I have emailed the practice manager to ask if I can either email the practice (to get repeat medication) or speak to my regular GP (who has some awareness of my problems) using a phone. My practice manager has said that I cannot do this. She has offered no explanation or alternative arrangement for me. My issues around telephones and new people / situations are clearly documented in my medical records, yet no steps have been taken to acknowledge this, let alone offer a solution. As I have only been able to contact the practice manager I have no idea if medical staff are even aware that I am struggling. I am being ‘triaged’ by someone who is not medically qualified. This is very concerning.

I now have no access to my regular GP sessions, no repeat medication, no way of contacting a GP for support for my health, no way of telling if my health issues are being documented on my medical records. I do not know when this situation will change.

I received a letter from secondary MH team to say that all therapy sessions, support groups or face to face sessions have stopped (though I am not currently receiving any due to funding cuts). The letter also said that phone access to the crisis team was now limited (it barely existed anyway!). It did not define what limited meant nor did give any details of any alternative support. The letter did not say when this would be reviewed, when services users my be updated with further information.

I have heard nothing from neurology at all. 

I live alone and have no friends or family. I did have a social worker but this was stopped at the beginning of 2020. I am on a very low income cannot afford take outs or expensive food boxes. If I needed to self isolate I would find it very difficult to access essentials as I have slipped through the net.

How have those changes affected your mental health? 

My repeat medication is running out, antidepressants, diazepam and anxiety meds and I have had to start taking them less frequently to make them last.

I am struggling to manage my anxiety, cPTSD, OCD and sensory problems, (seeing flashing lights hearing loud buzzing sounds) but cannot access any support from my GP who is my sole MH support at the moment. I am struggling to eat and my eating disorder symptoms are getting worse. I am having constant intrusive thoughts (around contamination, fear of abuse by NHS staff, fear that my benefit will stop) and increased flashbacks. I am strugging to sleep I am struggling to keep a regular pattern to my days. I live alone and see no one. I am exercising too much. 

Have you been told how to get help in a crisis since covid19?

No. The only thing I have been told is that I must phone and speak to a GP locum (which I cannot do). I have been told nothing by secondary MH services or neurology.  I have had no contact with social services. I have received a general email from my council. It refers to elderly and people identified as vulnerable but as I have no social worker and cannot access my GP I am concerned I have been left behind.

How is the experience of self isolating/social distancing in the community? (how are you finding living alone/with others, are you able to access support, food, meds, things to do etc).

I live alone and I am socially isolated even under normal circumstances. I am able to access food and things to do but not medication or support.  If I had to self isolate I would not be able to access food. 

Have decisions been made about your care (discharge, referral etc) that you believe wouldn’t have happened if it wasn’t for covid19? 

Yes. Shortly before lockdown, the GP phoned me to arrange an appointment for a review. I thought it was a bit odd as this had never been done before. It turned out that the GP wanted to tell me that as the surgery expected to be very busy in future, they couldn’t have ‘people like me coming in every week.’ He didn’t explain what people like me meant nor did he say what to do if I needed a GP. To be honest I think the surgery has wanted to off load my care for a long time (signposting me to voluntary support clubs, coffee clubs, chair based yoga!) I think they are now using the Covid crisis as an excuse. I am not hopeful that I will ever receive support for my MH post Covid.

The fact that I have been trying to get a repeat prescription but cannot do so seems to support this idea. The NHS is free at the point of access and I am entitled to a GP service. I cannot access this now. I have no access to primary care suitable to my well documented needs and no access to secondary care. 

Is there anything else you would like to tell us? 

In the past I have been abused physically and mentally by NHS staff. I am struggling with the hero worship thing which is going on at the moment. I feel that when the Covid crisis is over there will be no way to objectively access or comment on NHS staff or the NHS process. 

On a positive note I have looked at my MH treatment during this Covid crisis. For the first time I have has the space to be objective myself. 

The issues listed are fact, they happened and they have no subjective interpretation whatsoever. So often the narrative of MH treatment is based on feelings. Therapy ( if you can get it) uses a subjective language, feelings, thoughts etc.  MH diagnosis often focus on ‘experiencing things which are not real’ or ‘perceived abandonment’. But there is nothing subjective about what has happened to me during this time. I refuse to see it through any subjective filter because it just diminishes my experience. 

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