If you could see inside my head: Coronavirus pandemic stories from John, who has autism, and his family and carers
To describe the human rights, Equality Act, Care Act and Mental Capacity Act issues affecting the many people that we support across the country I would like to introduce you to these people and their stories (names have been changed).
John’s story: If you could see inside my head
My name is John and I have severe autism. I cannot deal with change. I have constant noise inside my head and the only thing that keeps it quiet is strict routine, things that I recognise and that don’t change.
I love my mum. One of the few words that I can say is mum and I ask for her regularly. We speak on the phone but the best thing is going to stay with mum at the weekend. I always feel better after my visit to my mum.
I lived with mum until I was eight and at that time mum struggled to manage things, so I got support, but I have always visited her on Friday night returning home on Saturday evening after tea.
I have lived here with Sally for fourteen years. I like Sally but she does annoy me at times, especially when she plays her music.
A few months back I woke up one day and all the staff were wearing masks, aprons and gloves. Things that cover peoples’ faces scare me because I cannot tell whether they are happy or angry with me. I was scared and cried a lot, sometimes I hit the staff when they came near me. I couldn’t recognise them.
Last week the staff began talking about something that I didn’t understand. They showed me pictures of sticks and how they wanted to put them up my nose and in my throat. I hit them away. I don’t like people doing things like that to me. I like hugs from my mum but I am not keen on people touching me, particularly if I don’t know them well.
I like to go swimming on a Tuesday, to the cinema on a Wednesday and on Friday I go to my mums. On Tuesday the staff told me that I couldn’t go swimming. I get upset and angry and I shout repeatedly at the staff until at dinner time I fall asleep. On Wednesday I wasn’t allowed to go to the cinema. The noise in my head is loud, the panic in my tummy and chest is jangling. I need to make it stop and I pick up the chairs in the dining room and throw them against the wall.
One nearly hits Sally and she begins to shout at me but eventually ends up crying. The staff take me to my room and sit with me. They put on my lavender steam and my sensory lights and read me my favourite stories.
Friday, I know its Friday because the staff cross of the days in my calendar. This helps to stop me constantly wanting to go home to mum because I can see when the day is coming. Donna came into my room this morning and told me that I couldn’t go to see mum.
I usually get collected in the morning. Lunch is served and I haven’t been collected to see mum. I am frightened. I scream and bang my head against the wall. I bite my hand until it bleeds. The noise won’t stop. I feel sick and can’t get my breath. I sometimes have seizures when I get this upset so the staff give me my PRN medication to calm me down.
I need my mum, has she stopped loving me? I sit looking at my room and I cry. Donna tries lots of things to distract me but I feel sad, lonely and numb.
Donna’s story: If you could see inside my head
I am Donna and I am a care worker. I have worked with John and Sally for the past seven years.
My mother has heart problems and Chronic Obstructive Pulmonary Disorder (COPD). She lives alone and has had to shield for most of the pandemic. I have tried and struggled to get her to use technology to make contact easier and to shop online. My mum can’t work a mobile phone, she lives alone and can’t afford to pay for WIFI if she isn’t going to use it and so she uses a neighbours password, but this adds to her difficulties.
Mother tries to ring me constantly, particularly in the evening when she has had a few drinks. She is drinking more and more at the moment. I listen to her cry regularly, but there is little that I can do.
My Aunty Jean died two weeks ago. Jean had the virus. Mum couldn’t go to the funeral and wasn’t able to see the live stream. The funeral was so lonely. Fifteen people were allowed to attend and they were instructed to social distance. The seats were far apart from each other. I could see my Aunty Sue who is eighty-six. Sue was sobbing and shaking but no one could give her a hug or comfort her.
My grand-daughter is nine months old. I haven’t been able to see her for three months. I worry that we won’t bond like most grandparents and their grandchildren as I haven’t been able to see her for three months. The first two years are so important and I am missing large portions of this.
John’s mum Doreen was on the phone crying again today. Doreen is worried that at her age she might never see her son again. I think that the death of her sister has driven this home hard. Doreen worries about how upset and distressed John is. We had to tell her how he was hurting himself at the weekend. Doreen wanted to know how often he needed his PRN medication. When we told her she sobbed.
If John could tolerate testing perhaps, we could shield less and manage something? Doreen said that he wouldn’t be able to stop himself hugging her. Doreen says she needs that hug too.
As time went on John’s distress escalated and the harm to himself increased. The constant screaming and shouting were affecting Sally and she was shouting back and making the situation worse. I haven’t experienced this before. We usually rub along quite well with only the odd hiccup due to change. Sally started asking to leave and be with her parents. Sally needs nursing care and regular feeds and this would be incredibly difficult for her parents to manage. Sally now rocks in her chair most of the day in an effort to sooth herself.
Sally’s family don’t want John to have contact outside of the home and have said that if he does, they will report his family and our service. The family say that if John goes to visit his mother, they will remove Sally from our care. I try to seek support from the psychologist and the social worker but they are struggling with these matters as much as we are. On the one hand we have law around restrictions and on the other hand law that supports the rights and reasonable adjustments for a person’s disability. Do we break one law or the other?
We assess John as lacking capacity to make a decision about going home. This is the first time I have completed a capacity assessment and I needed support. We made a best interest decision that John should go home to see his mother. The psychologist agrees but the social worker tells us that this would be breaking the law.
But to prevent John from going home also breaks the law. John’s right to private and family life, reasonable adjustments under the Equality Act for John’s disability and the ability to maintain John’s wellbeing, a duty under the Care Act are all affected.
No one can get in here to help us with capacity assessments and best interest decisions which are constantly required with changes occurring weekly if not daily. John and Sally are both Deprived of their Liberty. Neither of the Deprivations of Liberty Safeguards (DoLs) have been authorised as yet. They were requested over a year ago. The additional restrictions and restraints require a review of these DoLs. More capacity assessments and best interest decisions for us to consider.
We won’t get a response from the Local Authority any time soon. We deliberate these matters in endless Zoom meetings and Teams meetings pained by breaking one law or another and concerned that there are less restrictive responses (eg home visits) that would mean a calmer and less restricted life for John and Sally. Sally’s family hear about the consideration of John going home and begin threatening to report this to the police.
Today two staff have had to stay at home as they have been informed that they have had contact with someone who has COVID. The two-relief staff need support to learn how to care for Sally and John. Walking to work I know that this will be a terrible and long day with John and Sally distressed by another change.
I am tired and sad. We went through induction and training with the new staff members adding to the list of things to deal with. One staff member lasted five days and so it begins again.
My shifts are an average of 42 hours a week at the moment as the only stable member of staff. Mum and my grand-daughter are often asleep by the time I get home. They can’t even hear my voice. I am so tired and tomorrow is filled with Zoom sessions to try and work out how we weave our way through this mess to support Sally and John.
Doreen’s story: If you could see inside my head
I am John’s mum and I am eighty-four years old. I am not in good health. The need to shield and my concern for John has made me extremely anxious. The doctor has prescribed me tablets but they don’t seem to be working.
Last week a doctor contacted me talking about putting a Do Not Resuscitate (DNR) order on John’s file. John usually has a good life and I don’t think that this is right. It chokes me to think that they might not save his life. I am not prepared for my son to die before me.
I rang Donna [John’s care worker] for help, she is lovely. Donna talked to me for an hour reassuring me that she would try her best to get something done to help. Donna spent the next three hours on something called Zoom. After three hours Donna said that a complaint had been drafted to go to the Clinical Commissioning Group outlining why we think that the DNACPR (Do Not Attempt Cardio Pulmonary Resuscitation) should not be in place. We are waiting for the outcome.
I don’t care any more. I just want John home here with me, but I know that I couldn’t manage more than one night a week.
My story: If you could see inside my head
I am Deborah Barnett and I am employed as a national consultant for a charity sector organisation. I am a qualified social worker and have post graduate qualifications in matters of equality and diversity. I have strong values in equality and Human Rights.
Every day staff contact me to support them in completing capacity assessments for all sorts of decisions. Whole care home testing has created a huge amount of work to determine whether people can make the decision to be tested and if not whether it is in their best interests to have the test.
Many of our NHS services are being challenged and hospital discharges are more rapid than usual. On some occasions we have struggled to get the right support in place before the person arrives home. On two occasions the staff were not able to provide the usual support to the people in hospital and these people fell resulting in fractures. Safeguarding concerns have not always been addressed before discharge.
Listening to stories about distressed families, distressed people that we support and distressed staff overburdened with work and abandoned in isolation of other services and support, my response is to fight for justice, rights and equality.
We cannot justify stopping someone from seeing their mother if the result is self-injury and extreme distress, particularly if we can prevent the risk to others. The Human Right to family life, to be free from inhumane and degrading treatment, to be the least restrictive in our interventions when depriving a person of their liberty, as well as reasonable adjustments under the Equality Act all dictate proportionate responses.
The Coronavirus Act identifies proportionate responses and yet the legislation imposing restrictions does not consider how this impacts on people who are unable to understand the virus and what is going on. I choose to break this law and side with the human rights of the person concerned considering equality and diversity as key. These are my codes of conduct as a social worker and the very basis of my career.
I am pleased that I took out personal protection from liability because these decisions are required numerous times a day. I try to support people to complete capacity assessments and best interest decisions that are defensible enough but not over burdensome preventing care provision.
Please help us by providing compassionate rights-based guidance for the people who lack capacity to understand this virus, PPE, social distancing, isolation rules, shielding and why they can’t see their loved ones. If we make a decision to facilitate a family visit for John, are we going to be prosecuted or could Doreen end up with the police at her door?
When John returns home do we isolate him for 14 days meaning that he can’t see his mother next week? Do we do this despite the mental and physical harm that this would cause? Is there a change to the Care Act duty to consider the wellbeing (mental and physical) of the person?
What happens if Sally’s family decide to take her home? After a few months the benefits stop. Sally would not be contributing to household bills, should John be made to pay for it all in Sally’s absence? How do we maintain the service and who would pay?
What happens if Sally’s family can no longer cope even with support and she returns to the home she shared with John? Another change for John and how do we reinstate care? A new assessment, a new agreement?
Last week John got to go swimming because we managed to get a nasal swab test that was returned negative. Restrictions this week prevent him from going once more. It is going to be a tough week for Donna, Doreen, Sally and John.
This is one example from one home and we have more than four hundred homes around the country with differing and equally complex decisions to make.
Please do not lock people with disabilities away and forget that these very real issues exist. Help us to protect their human rights.
- Deborah Barnett is the United Response MCA (Mental Capacity Act) DoLS (Deprivation of Liberty Safeguards) lead