What Keeps You Awake at Night?

Relections on the huge impact Covid-19 has had on our charity

A smiling man with a man eating

“What keeps you awake at night?” This is a question that is often asked of CEOs. Coronavirus has turned this question on its head.  The world has reshaped itself faster than we can reshape ourselves: since Covid-19, no-one can predict the world with any certainty now. 

As a social care charity, Sense has been in the thick of the fight against Covid-19, reaching 13,000 people every year, supporting children and adults with the most complex disabilities, including those who are deafblind, and their families.

Children and adults who are deafblind and those with complex disabilities thrive on routine, structure and predictability in order to make sense of the world around them.  The present time is full of uncertainty and restriction which can leave them feeling distressed, anxious and out of control.   

How can we support children and adults to understand why their life has changed, why their favourite activities are no longer available, why their support worker can’t take them out on Saturday morning for a trip to the park, or to the supermarket, shopping or swimming?

Families and children

Many families were already currently struggling to have their children at home.  During the current Covid-19 crisis there are fewer people for families to interact with, communicate and engage with – many of their children have complex health conditions which mean they have to shield them from infection. 

A young man eating food from a cup with an orange shirt

Parents have had to literally batten down the hatches in their homes and can no longer welcome Sense workers into their homes. Yet until the onset of this virus families had relied on us to promote their child’s health, well-being and development. This includes support around communication, play and positive interaction, behaviour, physical and emotional health.

We are aware that the risk of Covid-19’s exposure to a deafblind child for example with underlying health needs is potentially fatal.  We share families’ fear that clinicians might make decisions on who to save based in quality of life judgements. We know that disabled children’s lives are as valuable as any others; however, the risk of a child having to be hospitalised with Covid-19 and with no means of communication would be devastating and the stress and fear, unmanageable.

We have also heard examples where local authorities have said that if a parent becomes ill themselves, that they will make their own unilateral ‘best interests’ decision on future care arrangements, with one saying that they would place their 16-year son on a mental health ward.  Parents are rightly fearful that their local authorities would make decisions on care without having their preference shared.

We are determined to continue to offer the specialist support that children with complex disabilities need, in whatever way we are able.  All our support for children is funded by public donations. It doesn’t qualify for government funding. There are also only a few charities that are able to provide this sort of support.  Our experienced children and family workers are advising families on how to stay safe during this isolation period.  We are moved our support online, using technology creatively so that we can continue our 1-1 support so that families can continue to sustain and build relationships with their children. We are using FaceBook Live to continue to connect families together. This has become a crucial lifeline for families who need contact with the outside world.

We are working with families to update their health passports which includes everything about their sons and daughter including their feeds, medication, contacts, communication, likes, dislikes, medical history. We are working with families to record their preferences on future care and support of their sons and daughters if they became ill themselves.

Our adult services

Turning to our adult services, and following government guidance, we have suspended our day opportunities services across the country. Our adult housing services continue to run as normal providing vital support to families.  

Supported activies - Painting
Sense – Exeter – Supported Living

With our homes in lockdown, our teams have spoken to many parents who can’t visit their sons or daughters living in a Sense supported home.  We are trusted by them to provide the right support but we know it is so unsettling for them to be physically distant.  Adults in our homes are also anxious as they don’t understand what is going on, why families can’t visit them and have struggled to retain their current routine and structure in their homes – all exacerbated by restriction of movement in their local communities.

We know that the many of the adults we support need to use their sense of touch in order to communicate and engage with the world around them.  During this crisis, when touch and physical contact is restricted and seen as a risky activity, our staff are continuing to provide this most essential support. Even in these difficult times, we see every day the strength and resilience of our front line staff.  We are keeping high quality support going in such a disorientating world.

More than ever our front line staff need to have the specialist skills and knowledge to support disabled adults with the most complex needs. Our specialist staff are supporting our staff teams to help address challenging behaviour as people become anxious and distressed.  We are doing our best to meet the needs for increasing support at a time when available funding to Sense has been cut.

Social care staff have been at the back of the queue for protective equipment even though we have such close personal contact with the people we support. We need testing for support workers more than ever. At the start, we didn’t struggle as much as other providers in in securing equipment, like face masks and gloves, as part of our contingency plans. We acted as quickly as we could and contacted independent suppliers of equipment to secure what we needed.  However, we are starting to use large quantities of protective equipment and struggling to secure fresh supplies, particularly of face masks.

We have begun to self-isolate individuals in our homes. We face the challenge of controlling infection in a closed environment. We are looking at our palliative care plans when needed.  But, if we can’t control infection, we are painfully aware that we will be sending new cases to hospitals for treatment.  We are extremely worried that if adults we support fall ill, that they may not get equal access to treatment by local NHS services. 

Time for compassion

There are so many more difficult times ahead. There are also wider messages.  The current crisis puts further strain on an already extremely fragile social care system. We are under pressure from the coronavirus outbreak at a time when the sector is struggling with staff shortages and higher costs.  Too many disabled people still feel marginalised in their local communities.  69% of families supporting disabled children receive no support outside the family home.  

We have never needed compassionate support workers more and their value has never been more apparent. Social care can no longer remain an after-thought.  Government must be bold in reframing social care and provide more funding. That means more support for disabled adults on a back of this pernicious virus.

The battle now is to ensure the safety of the children, adults and families we support. We will do everything we can to withstand the next few weeks and months. Sense, like other charities, is the last line of defence against the health service being overwhelmed even further.  We need more support so that social care providers like Sense can work with the NHS rather than against it in controlling the spread of the virus. 

This is now my single purpose and mission.

I, like the families directly affected by this virus, will continue to be awake at night, until we make it through this crisis.

Author: Richard Kramer

Richard Kramer is the Chief Executive Officer of Sense.

2 thoughts on “What Keeps You Awake at Night?”

  1. Hi Richard, You have highlighted key points which have become more pertinent because of Covid-19. From our own experience there was no palatable “plan B” for our son’s transition from children’s into adult services. How is an alternative care plan shaped and sufficiently resourced by parents and carers and how are social care workers adequately supported and given the right equipment to provide this essential support. These questions must be taken forward well after a Covid-19 vaccine is found.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.