Walking through the COVID-19 landscape
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16 April 2020
By Lorraine Currie, MCA and DoLS Manager at Shropshire Council and carer
First of all, I know this is a medical crisis, a pandemic, a public health emergency. But it’s also a social crisis and a wellbeing emergency, especially if you support someone with cognitive impairment or mental capacity issues during this time. The pandemic has required me to engage on a personal level with some really challenging decision making – call it best interests, supported decision making or just looking at what’s the wisest thing to do.
I haven’t named it because I’m too busy being immersed in it. No doubt it will feature in my next Health and Welfare Deputy, annual report!
Brain injury – vulnerable group?
One of my issues is that brain injury of any degree or description does not feature either in the Coronavirus Act, list of vulnerable groups or in the Government guidance list for shielding vulnerable groups. In 2010 I sat by a ventilator for six weeks, watching my daughter’s inability to breathe unaided. I then watched her struggle with the CPAP machine which took so much out of her after being ventilated for so long. I then watched the tracheotomy tube being gradually reduced for periods of time and I then watched the oxygen being reduced until that glorious day when she could breathe on her own and the machines were gone. This all took three months.
It’s fair to say I am traumatised by the memory so much so that I can’t watch the news or even hear the word ventilator or CPAP. I never want to go there again. Breathing alone of course was only step one on a very long journey. A journey which is still continuing. So okay my daughter on the whole is fit and well apart from this traumatic brain injury. So maybe I understand why she isn’t medically vulnerable and in need of shielding but I don’t accept that.
To me she is and will remain vulnerable to things in a different way than those medically ill or those who are completely fit and well. I think severe traumatic brain injury should be on the list.
How to shield
Then there is the issue that she lives in her own house with the support of four PAs providing 24 hour support. Each of those PAs works two days and nights but then goes home to their families. I had no peace about this at all. My daughter herself said (in response to TV advice to self-isolate) ‘How can I do that when I’ve got all these people coming and going’. So we had to really weigh up our options. This is where the balance sheet approach really did help. I’m not saying it was a best interests decision, it was a supported decision but the approach still helped.
Gains and losses
Anyone who works with or supports a brain injury survivor will recognise what I am about to describe. It has taken seven years to get to the point where my daughter ‘appears’ fairly independent. This appearance is due to invisible scaffolding. If that scaffolding were to disappear I estimate that in about two weeks she would unlearn what has taken so long to learn. Her impairments are fairly severe, she can’t read for example so all her learning is by doing, repetition and reinforcement.
Once this goes, she would have to start again. So we considered moving her back to live with us, but considered the losses in independence would not be worth it. She has a very structured programme every day. She lives by a planner which tells her what she is doing and when. This ranges from shopping by taxi to phonics lessons to physiotherapy and includes recreation like pub, film night etc. Without this she would most likely play Candy Crush or similar on her IPad all day.
Equally she cannot square the circle so if she does play Candy Crush all day she gets bored but can’t easily equate the boredom to lack of doing something, which in another person without a brain injury would suggest a new activity or a change of scenery. The motivation to do that is missing so the planner acts as this. If it says ‘pub’ on the planner she would go out if it doesn’t she wouldn’t. We were beginning to try and work on spontaneity (albeit initially organised spontaneity!) before the virus but that’s on hold for now. So it’s important in these times that we keep the planner going. It might now say water the garden, zoom physio, art studio, see online art gallery, zoom meeting to play games etc. but the structure is still there. It’s another form of invisible scaffolding. So by setting this out in a kind of balance sheet we looked at safety against the losses in learning and independence.
We are very blessed that one PA offered to move in and support our daughter for the next month. This has taken a lot of our anxiety away. We first went through what I thought was a brilliant piece of supported decision making where we looked at three options:
- Keeping things as they are with four personal assistants
- Moving back to live with us
- Taking up the offer of one PA moving in.
We came to the conclusion that number three was best. We all agreed, the existing PAs, the person who does administration for us, The PA offering to move in, myself and my husband as Welfare Deputies and my daughter. Later she sent me a text saying I had made the right decision as this PA couldn’t do Zoom! Typical brain injury survivor response as not being able to do Zoom means to her that she wouldn’t have to do physio or Uni or phonics as these are all by Zoom! (she was wrong by the way).
But there are still challenges. Because she isn’t in the vulnerable groups list she doesn’t get priority access to shopping. She lives in a relatively quiet village and relies on internet supermarket deliveries. Meal preparation is another task she has spent a long time learning, she follows easy recipe cards to make a set of lunches, this relies on the right ingredients. Without access to the priority shopping she has to either get her live in PA or one of the other PAs to go. This then means they can’t go at the quiet slot for vulnerable customers as she isn’t. So the PA is out in public and mixing with others and then coming back to the house which is what we are trying to avoid.
So I feel that some of the connections arising from the medically vulnerable list don’t easily sit with socially vulnerable needs.
I don’t like the word vulnerable. In social care we try not to use it. Its disempowering isn’t it and makes the vulnerable person seem weak and powerless and waiting on someone else to save them. This is not a description of my daughter and it’s not what those with chronic medical conditions are. However during this period of time some people are less able to solve the problems Coronavirus is generating. So they are vulnerable to being affected more by lock down, vulnerable to being affected more by not going out or keeping routines and structure going.
Then there are those who may not be more susceptible to the virus but are more who are likely to have lost much when this is all over. Ultimately that is what I felt I had to balance, making a short term change to minimise the risk of catching the virus which would have potentially long lasting detrimental impact or increase the risk of catching the virus to maintain the gains in independence and general functioning.
Not easy and I hope we’ve made the right call.