An Open Letter to the Secretary of State for Health and Social Care: “Can you not see how stressful that is?”

To the Rt. Hon. Matt Hancock MP

I am a lone parent of two under the age of 11, including one with a disability, living in south-east England.

For 12 weeks now, I have been shielding round the clock on my own without any care or respite whatsoever. The oldest of my two children has quadriplegic cerebral palsy and is a non-verbal wheelchair user. She needs 1 to 1 intervention minimum all day, every day.

Yet her school was forced to close on 20th March 2020, following advice from the Chartered Society of Physiotherapists (CSP). It has no plans to reopen, due to the lack of raw medical data relating to children with cerebral palsy and COVID-19. This is wise, given that the virus attacks the lungs, heart and kidneys – all of which need optimal motor function in order to beat it.

It is no coincidence that many people with cerebral palsy also have compromised immune systems and/or respiratory conditions. Despite this, they are not included in GOV.UK’s revised shielding advice. Unfortunately, they are only one of many vulnerable groups also missing from the list.

This has caused a lot of mixed messages from medical experts, including the NHS. This is not a reflection on the quality of the NHS’s commitment to public duty, by the way; they are beyond reproach in that respect and I am indebted to them for their unwavering integrity and dedication to their jobs. Without them neither of my children nor I, nor indeed many other members of my family, might be alive and well today.

However as a state institution that has suffered from decades of chronic underfunding, they have been backed into a corner, with the family GP contradicting the CSP by telling us not to shield.

It is an appalling state of affairs that in light of this, you should see fit to reduce the Alert Level from 4 to 3 regardless, despite the lack of a sustained decline in daily COVID-19 cases and an ineffective track-and-test programme. On what planet should that be allowed to happen?

Being confined spaces, shops and schools were not designed with a pandemic in mind. Yet you are basically fostering a surge in infection rates by reopening both while alternating between urging extremely vulnerable people to go outside, and stay at home.

This has fermented a climate of high anxiety, insecurity and stress for hundreds of thousands of families with disabled children. We are well aware of the need to practise strict social distancing, yet it is becoming harder to remind others to do the same. To expect us to stay at home at all times in such circumstances makes no sense. We need human interaction as much as anyone else; our children more so, given the long-term benefits for their formative emotional and intellectual development. Our caring roles, and their disabilities, do not negate that.

My daughter has been traumatised by the lockdown. For years at school, she has steadily built up independence through targeted therapies including assistive technology, physiotherapy and occupational therapy, supported by five or six trained medical and educational professionals working together holistically.

Suddenly, she has gone from that to sitting in her buggy most of the day, wondering why she is stuck at home and dependent on one person trying to do the work of six as well as being a mother, cook and housekeeper.

That includes operating hoist transfers several times a day, supporting her in feeding, bathing, dressing, playing, transportation, toileting, communication and physiotherapy round the clock all by myself without a break. Due to sheer exhaustion, I’ve had to abandon all sense of home-schooling for my youngest altogether. Can you not see how stressful that is?

My daughter may be disabled, but she is not stupid. She is fully aware that her liberties have been eroded. Her daily meltdowns are distressing to watch. She screams, cries and bangs her hand on her buggy, and sometimes even her head, so hard she gets bruises on her arm. I can only look on helplessly. She never used to be like this.

To make matters worse – should I fall ill, I do not have a contingency plan. The non-resident father of my children is unable to maintain physical contact with them, due to him and his co-habiting partner being key workers (an erstwhile forensic psychologist, his partner has been called to the NHS frontline). He is also vulnerable to COVID-19.

My daughter’s regular carer, who I paid privately and was non-agency staff, has been forced to shield at home, while most disabled children’s services have closed or are no longer available, thanks to years of ideological austerity. I have not been able to find a replacement carer. Most are shielding their main clients full-time.

Work and parenting commitments prohibit my two siblings from being able to help. Even if they were, they would not know how – having never lived with us. Three out of four carers are not in touch with their families. I am lucky to be corresponding at all with mine.

I was abandoned until last week by my local authority, despite asking for a referral to social care in the beginning. This is truly bizarre. Given my caring role I should by rights be identified as a key worker. The only reason I am not is because I am unpaid. This feels exploitative. What would have become of my children if I had collapsed at any point in the last 12 weeks?

That said, I cannot blame my local authority without identifying their funding source. I have a lot of respect and admiration for my children’s hardworking schools, and I am grateful to social services for finally stepping in – however they are working with inadequate care provisions from central government. Several local authorities already face bankruptcy due to insufficient emergency reserves. It jars that you, as a leading Cabinet minister, do not acknowledge the adverse impact COVID-19 is having on their public duty to protect local vulnerable residents – not to mention the fact that they have also had their funding cut since 2010 by the same central government that you now represent.

I am aware that 4.5 million people have become unpaid carers in a matter of weeks. This could lead to you exacerbating the COVID-19 crisis, not resolving it. The more unpaid carers there are, the more they risk being hospitalised for exhaustion – the more exposed they are to COVID-19, the more chances of infection spreading. It then becomes a Catch-22 situation: how to get people back into work without causing an exponential growth in unpaid carers as well as COVID-19 cases?

The only temporary, sustainable, way out of this is to reinstate full lockdown, return the Alert Level to 4, and delegate more regional emergency funds right across the board without partisan bias – including comprehensive children’s respite care packages, and substantial adult care packages – enabling local authorities to manage outbreaks more effectively.

I can relate to the public’s growing exasperation with the pandemic. My children and I are desperate for physical and social interaction, and to escape the obsession with COVID-19 that currently plagues the media. But we cannot ignore that gross incompetence at the top is behind the protracted crisis.

The only question I have left is: are you, as Secretary of State for Health and Social Care, bringing on the inevitable second wave to avoid scrutiny of your actions?

Sincerely,

Melissa Mostyn

With thanks to Vikki Smith and David Buxton, CEO of Action on Disability, for their advocacy and support

Artist, writer, Deaf parent-carer of two, survivor. Occasionally makes films in BSL.