I am going to remove my mask as it is difficult to speak with it on. Honourable members of the Joint Committee on Health, I am a co-founder of Long Covid Advocacy Ireland and the Irish representative for Long Covid Kids. The Cathaoirleach has introduced my colleagues. As members all know, long Covid is defined as the continuation or development of new persistent symptoms following a Covid infection. While we would all like to talk about the pandemic in the past tense, the reality is that it is ongoing and long Covid is the outstanding crisis that we have not dealt with. There are people in Ireland who developed long Covid following an infection during the first wave who have had no recovery. Some continue to worsen. While vaccination has mitigated the effects of acute Covid, due to the high reinfection rate, people continue to join our ranks, shocked that long Covid could happen to them. As they were young, fit and healthy, they were told Covid was just a cold and they could vaccinate and relax.
In preparing for this hearing, our inbox was flooded with emails from previously healthy people of all ages whose busy professional and family lives have been utterly devastated, and not just from the direct effects of the illness which destroyed their health almost overnight but also from the trauma of trying to access social, financial and, most important, medical supports and being met with misunderstanding, minimisation and often dismissal and disbelief.
This committee showed considerable understanding of long Covid before, so I would like to update members on what we are currently facing. We are asking for a comprehensive review of all aspects of long Covid management, with a particular focus on the services provided to both adults and children under the outdated interim model of care, education about the condition from both a medical and public awareness perspective, how we support sufferers and how we can reduce impact from this point onwards. Patient involvement is absolutely essential at every point, supported by comprehensive, standardised data collection.
In October 2022 this committee held a session on long Covid during which those tasked with providing healthcare services told members that knowledge around long Covid was still emerging and evolving and that the services would develop and improve accordingly. For the most part, that has not happened. The interim model of care is now 31 months old and it has not been updated. There remains no PPI and no patient involvement in the clinics. Clinics remain understaffed, under resourced and are not fully operational. The clinic, as a centre of excellence, a one-stop shop as envisaged and described to this committee, has not materialised. Thousands of research papers, including some internationally acclaimed Irish research, have now been published on long Covid and a new understanding is rapidly emerging yet this not seem to translate to knowledgeable, informed care on the ground.
Clinical guidelines, as promised in this room, in 2022 and then recommended by HIQA in 2023 have yet to materialise. To the best of our knowledge, the only long Covid education given by the HSE to GPs consisted of instructions of how to refer to clinics. In late 2023, four years into the pandemic, education from the ICGP to their members consisted of a two-page article advising GPs seeing long Covid patients to assess mental health impact of lockdowns and refer patients to living well programmes and online CBT while reiterating that there are no evidence-based treatments for long Covid. This entire approach is unacceptable and insulting. Patients expect and deserve much more.
Long Covid is a multi-system, neuroimmune, inflammatory disease yet many are still being refused medications that will not cure their long Covid but could help manage their symptoms and improve quality of life. At the same meeting, the members were confidently told that most people recover over time. However, as there appears to be very limited data collected by the clinics, recovery trajectory is difficult to substantiate. Of course some recover, but anecdotally we know that others stop attending if they view the limited services offered by the clinics as unhelpful. Some have been discharged still unwell but told there is nothing else the clinic can offer. Others improve but remain well below their previous quality of life and some relapse spontaneously or post reinfection.
The fact that some recover over time should not in any way be used to justify failure to provide adequate treatments and support to those who have not been so fortunate. The lack of universal recognition and understanding directly harms patients. I have permission to share the following: Anne had Covid in early 2022 and was hospitalised for six months. After infection symptoms persisted and she was diagnosed with severe POTS, a condition involving a large increase in heart rate upon sitting or standing triggering debilitating symptoms. This is common with long Covid. She had multiple episodes of dizziness, visual disturbances and loss of consciousness per day. POTS experts are emphatic POTS is not deconditioning. However, Anne's doctor believed she was deconditioned and prescribed regular movement. Anne was using a commode and to get her to mobilise staff removed access despite the risk of injury. For five days Anne had 47 POTS episodes while trying to get to the toilet and was covered in bruises. After pleading she was given back the commode at night but long staff delays in bringing it resulted in frequent bed wetting and soiling. A physiotherapist prescribed bed exercises. Anne told us that afterwards she would feel worse but the team seemed to know nothing of post-exertion malaise, PEM, one of the most common long Covid symptoms and ignored this. The doctor insisted she mobilise daily and she deteriorated until she could not even use a wheelchair. She lost 32 pounds in the hospital and left there more unwell. During those six months no clinician suggested the possibility of long Covid despite obvious signs.
In 2022, NICE stated exercise was not a treatment for long Covid. The exercises were clearly making Anne worse yet they persisted. Today Anne is no better. She cannot move without triggering her POTS, she is confined to bed with no quality of life and medical appointments are almost impossible. Two weeks ago Anne was finally diagnosed after two years of illness. How would she be today diagnosed her long Covid and managed it appropriately?
Those like Anne who suffer from of long Covid are often invisible. Too sick to attend clinics and too sick to be heard, they simply disappear. In one tragic case in the south west, gaslighting of a woman's severe symptoms despite her considerable attempts at self-advocacy, led to severe depression and ultimately suicide.
Long Covid like many autoimmune diseases disproportionately affects women. We all know Ireland's dismal track record in women's health. Medical gender bias is well-established with women’s symptoms often dismissed as hysteria or anxiety. One lady described her first appointment at a long Covid clinic. She said: "He did not want me to speak. He was visibly frustrated throughout, sighing when I spoke and cutting me off. He kept repeating, 'I can clearly see you have psychological issues'. My mother tried to speak up for me but he kept speaking over her."
Unfortunately children are also infected. In October 2022, the committee was told by the HSE that children recover faster than adults and that existing pathways could manage pediatric long Covid and, therefore there was no need for specialised services. Parents of children who have been sick for years would disagree. Kate got Covid at 14 years of age in 2022.
She was previously healthy but developed long Covid symptoms and was bed-bound for five months. She spends 50% of her daytime hours in bed and has missed 80% of school. EEGs confirm that Covid has impacted Kate neurologically, triggering subclinical seizures. She experiences profound fatigue, migraine, dizziness, loss of vision and joint pain. She has missed her junior certificate and is unlikely to sit her leaving. For almost a full year, Kate received no medical care. Pain from migraines woke her six or seven times a night. She was told by her GP to take paracetamol, eat fermented foods and not to worry. She saw a public consultant, who asked her if there was something she was anxious about but offered no help. Long Covid had been officially recognised for two years when Kate became ill, yet none of her doctors recognised the obvious signs. She has missed every major milestone of young adulthood. Her life has been obliterated. She is surviving, not living. Kate's story is not unique. Many parents have been given recommendations, such as maintaining previous routines, exercising and pushing through symptoms that contradict best practices. We are aware of the HSE plan for a paediatric clinic for fatigue-based illnesses. While we welcome services, the term "long Covid" is not being used. As far as we are aware, again, there was no PPI in its development.
When it comes to financial support for those with long Covid, we are also failing. The special leave with pay, SLWP, financial support scheme for healthcare workers who contracted Covid on the front line, pre-vaccine, without adequate personal protective equipment, PPE, was initially stopped on 31 March. Yesterday, it was extended by three months. While this is welcome, a longer term plan is desperately needed. Our former Taoiseach recently claimed that these workers likely contracted Covid at home, despite the country being in lockdown. A front-line worker, who may lose her home as a result, described it as a middle finger from the Government. We have gone from clapping our heroes for going to work while we stayed at home to making them homeless. Why would any front-line workers risk their health again knowing this is how they will be treated? Ireland and Greece remain the only two countries in Europe that do not recognise long Covid as an occupational illness. Long Covid is not recognised as a disability, hindering access to reasonable accommodations and making a return to work in any sector difficult if not impossible.
In the words of HIQA, the best way to prevent long Covid is to prevent Covid. Unfortunately, we are now in a phase of personal risk assessment, which is impossible when the risk of long Covid has not been communicated. Long Covid patients frequently report a deterioration in their health following reinfection. The removal of mask mandates in hospitals removed one layer of protection and made healthcare less accessible as a result. Access to vaccination, particularly non-mRNA vaccination, has become convoluted. As with all medications, vaccines carry risks of adverse reaction. While the vast majority of long Covid occurs post infection, those who developed long Covid-like symptoms as a result of vaccination have yet to be formally acknowledged by the Government, thus subjecting them to disbelief and derision. We also question the advice to stop antigen testing. Without a positive test, diagnosis of long Covid becomes much harder, the prevalence of long Covid becomes more elusive to measure and, most importantly, patients are unable to access advice and support that can stabilise their condition and aid recovery.
Covid infection and reinfection are not benign. Mitigation, such as clean air in hospitals, schools and other public places, could drastically reduce transmission. After healthcare workers, teachers have the second highest rate of long Covid. Should long Covid prevalence continue to rise, a recent report estimated that by 2030, the annual cost to the UK economy could be £4 billion. Clean air is an investment in our future from both a population health and economic perspective.
Long Covid is a vast issue. In a short space of time, it is difficult to talk to all the areas where improvement is needed. We would be delighted to answer any questions members have or expand on any of the points raised.
