Covid gripped our son so tightly and all that was left was his basic survival, his sleep gone, bed bound, drowning in anxiety and unable to cope with sensory stimulus, losing weight, losing his education and losing hope. A slow deterioration of physical, cognitive and emotional health and a downward spiral which accelerated after each Covid infection. There was no help within the NHS, no understanding and no way out of the decline. He was abandoned in his healthcare at a time of crucial need, and we were overwhelmed and out of our depth as we cared for him alone.
After four years of deteriorating health and loss of education we contacted LongCovidKids.co.uk who recommended Dr Kane Consultant in Respiratory medicine and Dr Khushnood Consultant Paediatric Cardiologist and Heart Transplant specialist. Both doctors are Long Covid Kids Champions, and they have supported the charity from the onset donating their time freely to support children whose health has been significantly impacted by Covid.
From the first appointment we were so impressed with the team’s knowledge and experience. The team were warm, welcoming understanding and most importantly they believed our son and wanted to help. After four covid infections and four years of being gaslit I cannot express to you the gratitude and relief we felt as parents. Much more than being believed we were assured that this presentation was common in their Long Covid Patients and that improvements in health and daily functioning were achievable and that a recovery was possible. They gave us hope and a recovery plan.
The official diagnosis and report helped to inform both school and NHS of his diagnosis and the recognition of his illness gave him protection and rights under the equality and disability acts. With the diagnosis a treatment protocol was slowly introduced and carefully monitored with patient safety and well-being as the team’s core priority. Our son had been so low he was at rock bottom with multiple systems under strain. The team were able to gently and gradually built him up and we all started to see an increase in function and improvement with each slow increment in medication. There were improvements in all aspects of his health and slowly and steadily he is recovering.
With the help of the team’s expert Long Covid Physio Robin McNellis our son is supported with expert knowledge as he increases his activity safely without relapse. Robin has supported us to facilitate our son’s physio and pacing. This was an area we really needed support with to avoid relapse or further injury. Our son has progressed from his previous constant crashes of Post Exertional Malaise and burn out to being functional at home and capable of consistently achieving two hours of home education per day. As he continues to steadily improve, he will aim to regain more function outside the home all with support from Robin.
The team’s specialist nurse Julie Taylor has been an outstanding support for us all from clinical support to educational support. Julie has been instrumental in creating specialist school reports which have fostered an understanding for staff as to the nature of our son’s condition and the difficulties this creates for him. As well as this she has provided school with strategies to support our son and recommended adaptations to allow learning to continue at an appropriate pace as he recovers. Julie was instrumental in our son securing a CSP (coordinated support plan) this is a Scottish version of the English EHCP. Without the Long Covid Clinics support this would not have been possible, and our son would have lost his education. He is through The Long Covid clinics expert care now sitting National 5 Scottish qualifications with home tutors and school staff working together to support his recovery.
If you’ve found this page and you’re reading this were sorry you’re going through this too and we wish you well in your own or your loved one’s recovery. We want you to know how transformative The Long Covid Clinics care has been for our son and our family. Covid doesn’t just have a devastating impact on the health of the individual it also has a dramatic impact on the family and those who support the patient. In this space you will find a level of understanding and an embedded culture of dedication for those impacted and suffering. This is a space where you will be believed and supported every step of the journey. We wish we had known about the service sooner but were here now and have hope for a brighter future, We are forever grateful!