‘Listening to Parent Carers’ – Jane Jones, Allsorts’ Charity Chief Executive writes on our blog

Jane Jones, Allsorts Chief Executive

Like so many others in this country, I watched the ITV documentary, Mr Bates versus the Post Office, with anger and sadness that so many people’s lives were unnecessarily ruined by the Post Office and their new software system.

The sub postmasters weren’t listened to, were wrongly blamed for what was not their fault, they were bullied, they lost their financial well-being and were drawn into legal battles which they had little chance of winning. It was a case of people using their power and privilege to silence the “skint little people”, to quote the drama.

Many people felt shocked that this could happen in modern day Britain, but whilst feeling angry and sad, I was not shocked at all because we hear stories of parents of disabled children having similar experiences to the sub postmasters.

It takes enormous courage to approach a person of power, be it a G.P., a teacher, a social worker, to talk about concerns you might have about the health and development of your child. Many parents talk about waiting for too long because they hope ‘the system’ will pick up what appears obvious to them. Many parents do have positive experiences and the child and family are listened to, supported and provided for, but this seems increasingly rare. So many parents are, instead, wrongly judged and blamed and their concerns are ignored or belittled. They are told that it is their parenting that is to blame, that they are trying to get special treatment for their child, that they have mental health difficulties, that they are fabricating illness. Their courage is deflated as they understand that in order to get the necessary care, adjustments and support their child requires, from broken systems, is a lengthy, brutal process.

At Allsorts, we hear every day outrageous stories of abuse of power. We have known an autistic child become so dehydrated at school on a hot day that they have needed to be taken to A&E. The reason? The child wouldn’t drink water and the school tipped out the squash in their drinking bottle, not listening to the parent.

Another child being educated in a corridor of a mainstream school, another parent blamed for seeking a break from their child’s intensive support needs, another parent having to give up work whilst waiting for the right school provision after being offered just 6 hours of education a week.

Those parents that can afford it often turn to legal help to ensure that their child receives the support they need, particularly in getting the right school provision for their child. It is with relief that I can tell you that parents do have the law mostly on their side, unlike the sub postmasters. However, if parents weren’t “skint little people” before this fight, they so often will be after a lengthy legal battle, especially as so many children aren’t in school during this time and the family lose a wage because of it.

Parents who didn’t experience mental health difficulties before fighting for provision for their child, often gain them along the way, causing yet more in need patients for the NHS. It can often take 2 years to get the assessment and education processes in place and that is often because parents are not listened to, or blamed, and in some cases bullied by the people in power.

I can only urge the people in power to listen and believe. Quick negative judgements are a societal failure born through lack of money for the everyday person. The parent who is seeking help has not come to you simply because they are demanding, they have come to you because they have true concerns about their child and they have found the courage to do so. They might require the smallest of adjustments for their child that you can easily make, which can make all the difference.

Like the sub postmasters, parents gain power when they come together and as a parent carer myself this is what made the battles easier for me when my disabled child was younger. Knowing that you are not alone and talking through your experiences with others is comforting and reassuring and you feel less isolated. At Allsorts, we believe that getting parents together is one of the most helpful things we can do, whilst offering fun healthy opportunities to their children.

Jane Jones has been the Chief Executive at Allsorts since 2020

Jane trained and qualified as an Occupational therapist and soon developed an interest in working with families who had children with additional needs, providing equipment and adaptations.

Jane is the proud mother of four sons, one of whom has many challenges in life and it was he who first brought Jane into contact with Allsorts when her family moved up from Cornwall to be closer to both family and the Bristol hospitals.

Jane has two basset hounds and her son, Jacob, has a shitzu cross and they enjoy walking them and generally spending time with them. Jane has been involved with Allsorts since 2018.