"It was the first time I'd ever felt listened to"

About: Community Services (Adult Physical Health) / Doncaster Long Covid

(as the patient),

As a 22 year old most people don't expect young people to be affected badly by viruses like covid, but due to developing long covid my quality of life completely turned upside down :

My experience with long covid mainly involves low immunity (neutropenia) and dysautonomia/pots with post exertional malaise. My whole way of living is different now, I struggle to recover from the simplest of colds and my previous athletic history (12 years of cardiac fitness) has seemed to vanish as I've gained palpitations, a tachycardic resting heart rate and difficulty doing any of my daily tasks, even climbing stairs was too strenuous for me at first

As a new graduate I was only just beginning in my career and my health massively impeded my ability to make any progress towards my professional goals and personal life. I went to see immunology, haematology, cardiology you name it and none of them could help me since my symptoms didn't manifest into a form that was treatable within their categories of service. I was discharged with no answers or solutions

It was only when I was referred to the Long Covid Service and had an appointment ready in 2 weeks that I had any hope of getting better! It was the first time I'd ever felt listened to, or that my symptoms were truly understood as dysautonomia often gets dismissed as anxiety. The staff were fantastic, asking me questions about my symptoms, intently thinking about my answers and effectively assigning me to a member of their team specialised to help me

My treatment has consisted of an active stand test and walk test to assess my initial cardiac baseline, monitoring my oxygen, pulse and blood pressure stats every week and working with my cardiac PT to follow an exercise plan on site and at home to manage my symptoms by gradually improving my fitness again. This has been vital to me as the regular monitoring and on site medical care has allowed me to A) obtain a proper diagnosis to understand my condition and B) make progress where regular non medical gyms were extremely hesitant to let me train on site due to my risky symptoms. In addition to that, the kindness and care that my cardiac PT displays at every single visit is an invaluable glimmer of positivity in what would otherwise be a very debilitating situation

Even though the pandemic began 4 years ago patients with long covid still exist! I'm still very much dealing with my symptoms from the virus and without the help from the Long Covid team I would be really struggling, they're invaluable! Please please please keep their services open and available for people like me who are still unwell and need care! A lot of GPs aren't aware of the long covid clinic so referrals aren't being sent, it's paramount that their services are brought to the attention of others who needed/need help like I did so we don't have to feel so alone in trying to get our lives back. It's the only support we have left in the medical system

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Responses

Response from Karen South, Therapy Team Leader, Long Covid Service, Rotherham Doncaster and Humber NHS Foundation Trust (RDASH) 4 days ago
Karen South
Therapy Team Leader, Long Covid Service,
Rotherham Doncaster and Humber NHS Foundation Trust (RDASH)

Clinical and Team Lead

Submitted on 13/11/2024 at 12:01
Published on Care Opinion at 12:01


picture of Karen South

Thank you for your positive feedback about our service.

We value all feedback from our patients as this helps us to understand the needs of people living with Long Covid and helps us to improve the service we deliver.

You have written such a detailed story of how Long Covid affects you and we know that other people living with this condition will relate to this.

I am so pleased that the service and the exercise pathway has been helpful in your recovery so far.

Best Wishes,

Karen

Clinical and Team Lead for Long Covid

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