Photo credit: Rob Martin.
This year, Mental Health Awareness Week is from 18 - 24 May.
We became aware of an upsetting story recently from a friend of Result CIC which moved us deeply. During this period of Mental Health (MH) Awareness, it made us want to highlight how mental health and disability can unintentionally be ignored when physical health is the focus.
"On Thursday 26th March, my brother Joe was taken to hospital by ambulance. I am also Joe’s primary carer.
Joe has an acquired brain injury and epilepsy and was presenting symptoms of Covid 19, for which he was tested with positive results.
Upon arrival at hospital Joe and I were separated. He was taken to a Covid ward and given antibiotics and put on oxygen. From this point forward there was to be no further contact between Joe and I. I was sent home, unable to say goodbye or explain what was happening in a way that would reassure Joe or that Joe would understand.
Joe had only the clothes he had arrived in. His home in supported accommodation was in lock down and therefore inaccessible, so I arranged to have some clothes sent to him but, with no laundry facility on his community ward, these were not of much use. Plus, by this time, I had also contracted Covid 19.
From this point forward Joe remained in hospital and then later in a community ward until April 20th when he returned home to his flat. Communication between Joe, me and the rest of the family was not permitted during all but one day of his stay.
During Joe’s time in isolation family members phoned the ward daily, but there was little information given. Only that he was “making steady progress and had had a good night”. Because you're not able to take any belongings on to the Covid ward, Joe didn't have any acess to his mobile phone. He was completely cut off from the people who knew most about his needs.
He didn’t understand why he was surrounded by people in masks. He saw TV news items which suggested he was going to die. As someone unable to make informed choices, such as what meal to have, the choices were often made for him by people unaware of his overall needs.
Whilst on the Community Ward Joe was given physiotherapy to improve mobility. The Occupational Therapist contacted us to say that Joe was now walking with a frame, “a marked improvement”. However, we informed the OT that Joe was employed and, up to acquiring the virus, had been independently mobile. This information came as a surprise to the OT who had just assumed that Joe was an old man living a care home with limited mobility.
Sunday 12th April (Easter Sunday) was the only occasion that I was able to speak to Joe when I was asked if I’d like a video call with him. He was visibly upset and in tears during the call. He had little understanding of what was happening and was clearly anxious being away from his family. He seemed unaware that his family had called to check on him daily.
Joe returned to his flat on April 20th, clearly traumatised by the experience. In the days following his return he made regular phone calls to members of the family and required constant reassurance that we were available. When asked about his symptoms, he snapped that he was OK, clearly not wanting to return to hospital. He also tried to cover support needs from care staff and his family to avoid any possibility of gong back in to hospital.
Joe is old enough to remember when people with disabilities where sent away from their families. He has also seen many friends go into full time care upon the death of a parent. The family believe this is what Joe understood to be happening to him.
Once home, lockdown meant that we still could not visit. However, he now had access to his mobile phone. Meals and additional support had been organised prior to his return but this meant that he also had to deal with a completely new routine to his day.
The family then became concerned by issues of memory loss, confusion and general lack of cognitive process. We feared that the brain injury and epilepsy had somehow caused deterioration following the virus.
Tuesday 12th May. The OT department contacted me to check for signs of Post Viral Fatigue. These included: Memory Loss, Confusion and Diminished Cognitive Process. Joe had been experiencing all of these symptoms and, unchecked, they can lead to ongoing, life-long fatigue issues. So, whilst we welcomed this explanation, this was three weeks after Joe had returned home. We felt we should have known about this from the start of Joe’s return so that we cold have highlighted the symptoms earlier.
It is fair to say that the treatment Joe received for Covid 19 was life-saving. However, the lack of understanding regarding his additional needs and communication preferences has left him suffering trauma and poor mental health as a result.
Another question to be asked is how informed consent to any treatment was achieved at any point during Joe’s stay in hospital. There are also more questions relating to Joe’s capacity to understand the consequences of any decisions made.
Grateful as I am for Joe's treatment to get him over Covid 19, as Joe’s brother and his primary carer, it’s upsetting to see that his treatment took a single issue approach rather than looking at the person as a whole."
This account highlights how easy it is for a well-meaning system to miss a vital aspect to do with the mental health of patients, especially those who are living with increased risks, due to the conditions that they live with.
Our hope though is that following a traumatic experience like this the essential MH support is present and is used by those who need it. It’s a question of awareness all round but also training of specialist staff to have MH awareness.
There are numerous resources available online for people seeking mental health support. Below are links to a small selection.
Salford CCG (link to newsletter ) - decision-makers about health spending in Salford.
42nd Street - specialising in support for younger people.
Self Help - a user-led mental health charity.
Six Degrees - helping people with depression and anxiety.
Rehab Recovery - inclusive and diverse addiction treatment.