Thana Narashiman is one of 225 people in Newham known to be suffering from long Covid. He argues for action to recognise and treat the condition.

The Covid-19 virus pandemic has left a lasting mark on many of the survivors of the illness – those now recognised as sufferers from Long Covid.

As someone who caught Covid in April 2020 and now suffering from long Covid, diagnosed in October 2020, the impact has been debilitating on my day to day activities. It may now be time for this condition to be classed as a long-term disability.

The NHS has rightly focused on the main Covid pandemic with billions of pounds allocated. But sadly the funding for long-Covid has lagged with sufferers not referred for rapid response diagnostics coupled with treatments. It seems we have been forgotten while clinical pathways are being drafted. In contrast, the USA has classified long-Covid as a long term disability and enacted laws (Americans with Disabilities ADA) to protect sufferers from discrimination.

One of the main symptoms is the severe lethargy, plus short term memory loss (brain fog) and breathing issues that have prevented me from wearing a mask. However, I have counted over 24 symptoms and 200 have been reported in all. I had to curtail many of my usual activities and am mostly housebound at the moment. Even travelling to the local supermarket is challenging.

Dr Kate Corlett, Medical Director Community Health Services, East London NHS Foundation Trust (ELFT) states: “Long-Covid is a significant cause of disability even in people who were not hospitalised with their initial infection and have no detectable abnormality on examination and investigation, for example chest X-ray.”

Now, finally, in July 2021, I have been referred by my GP to specialist cardiologists and neurologists (with long waiting lists) for full diagnostics related to heart palpitations and internal potential nerve muscle pain manifesting in “body tremors and vibrations” but other symptoms remains unresolved pending clarity on budget and clinical pathways.

There is also a stigma around long-Covid as I have encountered medical staff thinking I might transmit the Covid virus – which is untrue. I have had both doses of the vaccine after the diagnosis of long-Covid and the vaccine was not the causal factor for long-Covid or its associated symptoms. I wanted to share this to dispel any myths.

Nationally around 2 million people are impacted by long-Covid, but in Newham around 225 were diagnosed as of July 2021. Many I suspect have not been diagnosed with this “invisible” disease due to lack of public health dissemination. I did approach Public Health Newham but no response was provided.

Councillor Zulfiqar Ali, Cabinet Member for Health and Adult Social Care said: “Long Covid is of significant concern given the huge numbers of people that have been impacted by Covid 19 locally. While our understanding of long Covid is in its early days, we are working closely with our NHS partners to understand both the scale of the impact and ensure there is adequate and proper support for people suffering”.

My MP Stephen Timms has been a strong advocate for me and for others, raising questions with the stakeholders and states: ”The NHS is still trying to get to grips with long Covid…I understand that there are now 89 specialist clinics in England, and, in June, the government announced a £100 million expansion of long Covid care. With so many people affected, it is vital that we have the funding locally for the services we need, and that GPs are trained as soon as possible to support those patients who are affected.”

With around £25 million budget for community services allocated to ELFT, it is very regretful that the Newham NHS commissioners have lagged allocating budget to treat long-Covid. Currently, only online triages hubs exist in Newham and I have not been seen by any long Covid medical specialists despite having reached out for urgent intervention. There should be specialists Covid unit with expertise to treat, and not simply diagnose, this condition.

I urge the local NHS commissioning Board and the Health Minister to rapidly collaborate with an integrated approach to treating this syndrome holistically and engage better with identified sufferers so that they can compile data coupled with multi-disciplinary expertise.

The primary focus on main Covid has masked the heath inequalities for long-Covid sufferers and we need to level-up better outcomes – and it needs to start now.

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