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Not waiting until this is all over - Paediatric remote consultations

Patient Voice - Remote Consultations

My name is Alexa and I am a mum of two boisterous boys, a wife and a part-time support worker within older mental health. Before my first son was born I had a very clear vision of the type of parent I wanted to be, I would spend hours watching him sleep, thinking about how life with this tiny human would develop. I imagined a perfectly behaved little boy who would eat his greens and, already sure I wanted more than one child, have a loving and gentle relationship with any sibling that came along. My parenting reality was quite different.

From an early age my husband and I noticed differences in our eldest’s behaviour; by the time he was ten months old I already felt unwelcome at baby groups and had started avoiding places because I was too embarrassed to return. Among other things, he was a biter. My friends reassured me it was “just a phase” and were very tolerant and accepting of us considering all their children had been on the receiving end of his antisocial habit. I raised concerns with the health visitor at his one year check but was told it was nothing to worry about and that he would “grow out of it.” He did not.

We spent the following two years in varying states of exhaustion and distress trying to find the answer, trying to find the right support for him and us. Last year, the health visitor finally admitted defeat and agreed that we had tried everything to manage his behaviours and we needed a referral.

We went through the motions of asking the GP to refer him and waited. I’d heard horror stories of parents waiting months, if not years, to get their child into the system and was preparing myself for a long and exasperating battle.

The process was by no means instantaneous; our original referral went missing and the GP had to resend it. It was resent without any of the supporting evidence so could have easily been rejected, leaving us back at the starting blocks, but it wasn’t. I received a call from the business manager at Solent Community Paediatrics in February of this year to explain that all referrals are triaged and cases are accepted (or rejected) based on the information that is received.

She told me that our referral was unlikely to meet the criteria for acceptance because of the lack of evidence. The triage meeting was taking place the following day and it would have been far simpler for my son’s referral to be thrown out, but I was able to email the missing information across and she made sure it was seen by the team. The following day I was desperate to know the outcome and when I finally learned that the referral had been accepted I was overcome with emotion. I finally felt believed. I finally felt that perhaps my boy’s reactions were not just a result of poor parenting. Perhaps I wasn’t failing after all.

An appointment was set for the end of April, much sooner than I had expected, and it felt as though we were finally going to get the answers we needed for our little boy.

However, Covid-19 had other ideas. The Coronavirus pandemic hit the country and the appointment that I longed for seemed as it would never happen, leaving me completely deflated.

February passed, March began and before we knew it the country was in lockdown. While I understood how necessary it was to cancel non-urgent medical appointments and keep patients and staff safe, it was a blow. Hearing words like “suspended indefinitely” and “until further notice” filled me with dread. We love our boy more than words can express, my heart wants to burst whenever I hold him, but we’ve been hovering at breaking point for so long now that family life has become a series of struggles that don’t resemble anything close to the parenting dream we once held.

Because my interactions with Community Paediatrics had been so positive and friendly earlier in the year, I decided to get in touch to see if the appointment could be done remotely. I didn’t expect it to be possible so when I got an email confirming our telephone consultation I was over the moon. April 27th arrived and I sat nervously awaiting the call. A million and one scenarios played out in my head. What if they don’t believe me? What if they think I’m overreacting? What if they don’t have the time to really listen? What if they tell me there’s nothing to worry about and we are left to deal with all of this on our own?

I needn’t have worried. The phone call couldn’t have been more helpful and I can’t praise the team at Solent Paediatrics highly enough. The consultant was friendly, attentive and informative. We spent over an hour talking about our concerns and apart from a few small problems with the telephone reception I really wouldn’t have wished for anything different. The consultant allowed me to speak, I never once felt rushed or dismissed and the reassurance that someone else, someone that mattered, someone who knew what they were talking about, supported me in my concerns was a weight lifted. All of this was possible because Solent carried out our consultation remotely and didn’t make us wait until this was all over.

I imagine this moment is bittersweet for every parent. Being told there is likely something “wrong” with your child is never comfortable, but for us being told he is likely on the Autistic spectrum has felt like the light at the end of the tunnel. The confused fog is finally clearing and at last we feel as though we are on the pathway to discovering how to be a happy family unit again.