"Excellent, holistic healthcare for my disabled son"

My son had an appointment recently at the Royal Hospital for Sick Children in Edinburgh. He was seen by the Paediatric Dental Out-Patient Service. I want to highlight the excellent and holistic care practices of Dr Wright, Dental Nurse Amanda, and Learning Disability Liaison Nurse Blair. 

My teenage son is profoundly autistic and severely learning disabled, non-verbal. He cognitively has difficulties understanding what is happening or expected at healthcare appointments. Since CV19 and its lockdowns he has also become quite hospital phobic, becoming significantly psychologically and physically distressed by seeing the NHS Lothian logos and/or staff in their uniforms. Appointments are usually exceptionally tricky to manage for my son (and others around him sometimes) and him accessing healthcare successfully is a considerable concern of mine, especially as he ages going forward. 

These three practitioners I have named above went above and beyond their roles and duties to make a truly holistic healthcare appointment go so well for everyone, not just my son, but for myself and the carer that comes to also support him. They showed such empathy, kindness and expertise in big and small ways that made all the difference.

We were met outside and taken to the clinic. My son struggles to wait out situations. They had already set up the room so it was not only safe and accessible for him personally, they had removed known triggers and adjusted their uniforms so my son would get distressed by NHS logos in front on him. They - most vitally (and sadly on the rarer side) - spoke to him (and not just me, his verbal Mum). They gave him the space and respect to communicate as he can to have a genuine exchange/ communication.

My son was part of the process as opposed to being worked on, they took the time to patiently wait and work with him. I cannot express enough what that meant, at different levels, to my son and myself. It is the professionalism and respect I hope he is always met with, and for various reasons, often isn’t.

They also made extra time allowances, responded to his communications and non-verbal gestures with real understanding and a sense of fun and nurture, putting my son at more ease. It meant that whilst my son was calm and, for want of a better word biddable, to the situation, I could have a meaningful discussion with them about his next healthcare steps without having to (usually) manage his significantly distressed behaviours whilst trying to concentrate and listen simultaneously. We were also helped back to our vehicle after the appointment. It was a truly seamless service. 

I cannot praise these three healthcare workers enough. NHS Lothian should be proud of what excellent ambassadors they were for what one hopes NHS Lothian aims to achieve with young disabled people in our communities. It was an example of exemplary healthcare practices that I’m delighted my son was on receiving end of. I also have to caveat, I rarely enter into reviews / online review processes but I feel so strongly that their efforts deserve praise and I relish the opportunity to formally - in print - thank them. 

Thank you Graham, Amanda and Blair. You ensured that my son’s healthcare, not only mattered as much as anyone else’s (even when he might not be the easiest patient to deliver to). You provided care of an excellent standard which also hopefully has the legacy of meaning that next time he needs to visit a hospital or NHS venue he will remember that last time it was not distressing, scary or hard. It was not just okay. It was actually fun, safe, respectful, personalised holistic care that achieved so much. I sincerely hope every healthcare worker who works with young people like my son develops the skill sets we experienced last week by Graham, Amanda and Blair. Thank you so very much.