The silent struggle of carers

I’m People and Legal Director at Sanctus but my most important job in life is mum to 9 year old twins Alex and Scarlett who are funny, cheeky and kind and I’m incredibly proud of both of them.  I’m also a registered carer as Scarlett has Down Syndrome.  

When I had Scarlett and her twin Alexander (who is neurotypical), I quickly came to terms with her disability and got stuck into life as a working first time mum to twins.  However what I was totally unprepared for as a carer was the endless battle we have to fight to access educational and medical support and ultimately for inclusion in society. Scarlett has some physical difficulties like wearing hearing aids & hypermobility which means she needs additional NHS support like audiology, speech therapy, occupational therapy and physiotherapy.  She also has a learning difficulty which means she needs an Education and Health Care Plan providing tailored 1:1 learning support to access her mainstream primary school. 

We’ve faced situations where she’s constantly discharged from services which are underesourced and preoccupied with cost management, we’ve had to wait months and in some cases years for access to services like Educational Psychology support, and she’s faced direct discrimination in mainstream education and been unlawfully excluded from the kind of kids clubs neurotypical children go to every day.  One ballet class said she couldn’t join without even meeting her as she wouldn’t be up to the standard they wanted to see (it was an under 4’s Sunday club).  When she was 7, another gymnastics class asked her to move to the under 3’s class or leave because they didn’t want to provide additional support to help her continue to access the class.  She loved that class so much, that was a very tough conversation with her.  

We’ve been to Tribunal twice already to secure her mainstream school place and are currently fighting to get her a place in a special school, and we face an ongoing daily struggle to ensure she’s properly supported in school. Sadly these stories are not at all unusual and they led me to co-found a charity providing information, support and education as I’ve found parents and charities are the best source of support for others in similar situations.

The hardest aspects for me have been the total injustice of this situation for our children and for us as a family, the huge additional workload we face in terms of filling out forms and going through assessment after assessment to access services, and the feeling of being alone as work colleagues or parents with neurotypical children are unaware of or cannot relate to what we face. 

Scarlett brings infinite joy to us as a family and is the most perfect example of humanity at its best in terms of her love for others, kindness and boundless joy at life.  She’s incredibly gentle and has the funniest sense of humour.  She loves her brother and her friends and family so deeply.  I wouldn’t change her for the world. But this battle is incredibly debilitating and has put a strain on my mental health over time.  I’ve also been physically exhausted to the point of needing medical assistance at the struggle of juggling work, parenting and day to day life.  It’s seriously impacted my work as I’ve had to prioritise caring responsibilities at times, despite being lucky enough to have received incredible support from understanding employers. Sometimes it’s just impossible to be available enough on all fronts and it’s very difficult to ask for help as it feels like an admission of failure.  I know that the situation will only get harder as she grows up as she’ll never live unsupported and adult services are even more challenging.  Of course, one of the most difficult things we face as parents to a disabled child is worrying about and planning ahead for what happens after we die from the moment they are born.  I still experience many sleepless nights thinking about that. 

So many people have found the last year impossibly challenging and we haven’t yet started to understand the full and lasting impact on our society or individuals.  But at least for most people an end is in sight.  

That’s not the case however for some disabled people and their carers who are still in limbo due to ongoing medical conditions or the suspension of essential services which mean that they remain trapped in lockdown conditions and unable to resume their normal lives.  In some cases, there is no end in sight at all as there is no vaccination route out of this available.  A shocking 76% have found that vital services have stopped altogether, and the majority (70-80%) report worsening emotional and mental health for both their children and themselves.  

This was our experience as Scarlett became increasingly isolated as her communication skills did not permit her to participate in the activities other kids were doing remotely.  As we watched her deteriorate, we eventually made an incredibly difficult decision to send her back to school despite an increased medical risk from Covid because we were so worried about her mental health.  I don’t think I will ever get over the guilt of that decision.  But at least we are in a position to make it, some parents and children won’t even get that opportunity.  

This is an impossible situation and why we’re supporting the Disabled Childrens’ Partnership #Leftinlockdown campaign.

How to support carers in your workplace – advice from Kelly Harris:

Kelly has put together some advice for how businesses can support the carers within their workforce. 1 in 8 UK adults are carers, so it’s critical that all businesses are actively aware of this.

We’ve included both advice for managers as well as employees. Download the full pack here.