This month I am very happy to post this guest blog post by Thana, who has been affected by Long Covid. He details the interactions he has had on a local level to try to get more help. It is a perspective which most therapists will be very familiar with: the time is takes to get anything done and the lack of understanding and which is still out there are particular problems. If you have any stories to tell, or any advice to give, then I would love you to contact me. The more information we can exchange the quicker we will get things moving.
Impact of long-Covid 19 as an invisible disability
Thana Narashiman
The Covid-19 virus pandemic has left some with the legacy of enduring multiple on-going symptoms referred to as long-Covid or Post-Covid syndrome. As someone who caught Covid in April 2020 and now suffering from long Covid – as diagnosed in Oct 2020, the impact has been debilitating on my day to day activities and in my view should be classed as a long-term disability. The NHS has rightly focused on the main Covid pandemic with billions of funding allocated but sadly the funding for long-Covid has lagged with sufferers not been referred for rapid response diagnostics coupled with treatments. It seems like we have been forgotten while clinical pathways are being drafted. In contract, 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, short term memory loss ( brain fog) and breathing issues, which has prevented me from wearing the mask but I have counted over 24 symptoms (although some 200 symptoms have been linked to long-Covid). Overall, I had to curtail many of my usual activities and am mostly housebound at the moment. Even travelling to the local supermarket is challenging having to rest along the way and feeling generally very uneasy. 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 eg chest X-ray.”
Now finally in July 2021, having asserted for treatment, I have been referred by my GP to specialist cardiologist and neurologists (with long waiting lists) for full diagnostics related to heart palpitations and internal potential nerve muscle pain manifesting in “body tremors / 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 being worried 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 are impacted by long-Covid but in Newham around 225 were diagnosed as of July 202. Many I suspect have not been diagnosed with this “invisible” diseasedue to lack of public health dissemination. I did approach Public Health Newham but no response was provided.
Cllr Zulfiqar Ali, Cabinet Member for Health & 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 local Member of Parliament (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 of their patients who are affected.”
With around £25 million budget for community services allocated to ELFT (provider of services), 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 me having reached out for urgent interventionfollowing this diagnosis in Oct 2020. I feel it is being shifted from pillar to post in absence of any pathways which is unacceptable. 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 can compile data coupled with multi-disciplinary expertise. It is much more that simple breathing issues. As John Ashworth, shadow secretary states, “The need for specialist, targeted support is therefore clear ….long-Covid care cannot become a hard-to-access Cinderella service. For those who are experiencing it’s impact, we must ensure there are the services to support them for the long term too.”
We can do better that this nationally and locally and I am collaborating with my MP, Mr Timms to nudge for oversight as impact on health and social care costs will escalate drastically if left untreated. It is commendable that Dr Kate Collett has rightly asserted the condition to be “significant disability.” 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.
Quotes / References
East London NHS Foundation
What is your role at ELFT and in Newhamand how does it relate to Covid-19 and LTC?
– I am ELFT Medical Director Community Services this includes the community services in Newham and Tower Hamlets. We run the ‘Long Covid triage Hub’ for Newham and Tower Hamlets. The Hub provides an online therapy led MDT assessment for people who have had continuing symptoms after Covid infection beyond 12wks and do not have ‘red flags’ or other symptoms/signs which would require secondary care referral.
What is the correct medical term : “long-term Covid 19” or “long Covid” conditions? – two terms are used in national documentation ‘Long-Covid’ and ‘Post-Covid syndrome’
What is your professional view of LTC and the multi-faceted symptoms being presented?
– 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 e.g. normal chest XR
What is your annual Budget for Community Health Services and what % is assigned to dealing with LTC and the LTC hub? – Newham Community services has a budget of approx. £25 million. Currently there is no allocated budget for long-Covid as we and the CCG have not yet finalised a specification and budget.
As of today, how many referrals have been made to your LTC Hub (Note : I have emailed Public Health for other data) – 452 – this is from TH & Newham GPs – about 17 per week. 225 of these have a Newham postcode.
The media calls it “Long Covid”, and it essentially means certain symptoms of Covid lingering long after the infection has resolved.
Brain fog, headaches, fatigue, coughing, shortness of breath, anxiety, and dizziness on standing are all possible symptoms of Long Covid according to Health and Human Services guidelines.
Calls for national screening programme as symptoms revealed range from brain fog to tinnitus
https://www.theguardian.com/society/2021/jul/15/long-covid-has-more-than-200-symptoms-study-finds