From January to August 2020 during lockdown I was becoming more and more malnourished and so were my two cats, my only companions after 14 years with severe ME/CFS. The isolation in this illness is imposed not sought. After they died in my arms from starvation and in my own increasingly amaciated state I had to summon the strength to bury them in the garden. By August I was suicidal, I wanted to end my suffering. It was only after I would not go quietly into that good night and raged, raged at the dying of light, that anybody noticed. By that time, I no longer cared about living. Police were called and carried out welfare checks several times, then came the social workers for the same reason.
I was hospitalised twice for malnutrition and sent home with a six pack of ensures each time. They were busy though dealing with the pandemic, after all, people were dying. Through no fault of their own.
After more raging by playing loud music and destroying my own property, I was put in a place of safety, twice where they literally nothing then returned home. I was continuing to starve and I'd resolved by that point I would rage until I could finally rage no more. I was scooped up by the police in the middle of the night and taken to hospital for a pscyhe assesesstment. I was left in a room with a bright light on for what seemed like hours until the psychiatrist arrived in a pair.
Eventually I was arrested and charged, for disturbing the community. As I was deemed a danger to myself and to others in my increasingly malnourished state I was placed on remand in a womens' prison, who have absolutely no idea nor care about ME/CFS. A more noisy unsuitable environment for a severe ME/CFS patient does not exist. On being forced to walk from one cell block across a courtyard to another carrying my own bedding wash kit, towels etc after being refused a wheelchair - I collapsed. I kept trying to end my life and so I was sectioned after refusing to take sertraline until I was told by a medical professional what it was for. As I was walked through the prison corridor to the van to take me to goodness knows where as I had not been told I had been sectioned, one of the guards behind me said to another, she's faking it. I hit out with my walking stick and was placed in head down restraint and bundled into the back of the van.
After, what I later learned was a journey of 125miles I was deposited at a secure mental health unit. By that point I could barely lift my head and was slurring my speech. Meals and weight were monitored and I was medicated. When I refused to take the medication until I was told what the side effects were and what I had been diagnosed with, I was placed in face down restraint by 4 attendants, my pyjamas (which I had been arrested in) were pulled down and injected with it. That happened twice, before I eventually gave up trying to assert my rights as citizen and more importantly as a human being.
I didn't even know why everyone was wearing masks, insisting on spacing or kept talking about something called Covid. I truly thought I had finally lost my mind because when I asked what it all about, people looked at me as aghast and would not explain.
I gained weight, was compliant and was discharged back to prison where I ended up with a criminal record. All gains, but what had been taken from me was any sense that I was a human being. At one point during the various multi-disciplinary safeguarding meetings, my special assigned specialist mental health GP, my social worker and the police could not find me in the system. I had been lost.
On finally returning home to what had once been a place of happy memories I was met by the Probation Service manager with a new set of keys (my door had been broken down (twice), we met at the doorstep by one of my jackets on top of a large box of food. The Police officers who had to keep arresting me when I couldnt get to the Crown Court hearings 8 miles away, had prepared for my return by going into my kitchen, and noticing not a scrap of food was in the house. They bought me basic provisions and left them outside that morning with my coat in case I had to wait outside for the probation office manager.
Both my specialist GP and the Probation service Manager told me that their view was I should never have been sent 'down the criminal route'. Cold comfort after what I had been through as I was, by then, a very severe ME/CFS patient.
At every single stage, my physical condition due to severe ME/CFS was either completely ignored or dismissed. I was discharged from the secure unit to the local mental health service who wrote confirming that my diagnosis was Anorexia Nervosa due to self neglect and responsible for the death of my cats due to neglect., and paranoia. When I telephoned them on the probation supplied telephone to challenge the anorexia nervosa diagnosis and the self neglect they confirmed they would amend the record. I asked them to write to me confirming it. They never did. Apparently, I have an unreasonable fear that the state will harm me.
Why was I without food? The DWP had stopped my benefits as I had failed to respond to review process in time. My care company had returned to contract to social services as they no longer had the staff to fulfil it. They gave me 24hrs notice. By the time of the review, I was too unwell to respond and was alone. The DWP failed in it's duty of care as did Social Services.
Apparently, whatever the circumstances, in the UK people with ME/CFS always do it to themselves, are always unreliable witnesses to their own experience, and never have a voice! And the reason I'm a severe ME/CFS patient? I was referred to the Bath Clinic by my GP under the 2007 NICE Guideline and the Department of Health publication
https://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_full_guideline.pdf 2006 while I was simultaneously attempting a phased return to work, being managed by my employers Occupational Health Department, with assistance from Access to Work who had already organised for help with getting to work, moving my desk to the ground floor and other adaptations. I was never able to make use of it because after a six week course, I walked unaided and came out needing a wheelchair and that course did not include GET.
I tell my experience with this illness and level of broken trust which exists for one reason only. Maeve did not fall through any gap in service provision, THIS IS the service provision in the UK and always has been!
This patient experience is demonstrated on my medical file as a CFS diagnosis, Secondary Polycythaemia of unknown underlying cause, Anorexia Nervosa due to self neglect and Paranoia and finally a referral for suspected peripheral neuropathy, where no action was taken after one Consultant appointment. I dread to think what else it contains.
I am, in the eyes of the healthcare profession, a typical ME/CFS patient; with no right of complaint if I were a child or the parents of one.
I knew my legal rights, and it made not a jot of difference. Titration of medications and the impact of side effects is now in the 2021 NICE Guideline which is being ignored wholesale.
When I returned to my home in February 2021, Maeve was already on her final pathway through what passes for the right to healthcare of anyone of any age in the UK with ME/CFS.
I was 62 years old when this happened to me.
Now I have been officially diagnosed with paranoia expressed in an unreasonable fear that the state will harm me.
The Final Delivery Plan confirms that this fear is not unreasonable.
