I’m removing my mask as due to my health conditions, I find it difficult to speak for prolonged periods with my mask on.

Honourable members of the Joint Committee on Health,

My name is Sarah O’Connell, I am the co-founder of Long Covid Advocacy Ireland and the Irish representative for Long Covid Kids.

Joining me are Julia Corey and Imelda O’Donovan and here remotely is Pamela Morrison, Thank you for inviting us today.

As you all know, Long Covid is defined as the continuation or development of new persistent symptoms following a COVID infection.

While we’d all like to talk about the pandemic in the past tense, the reality is that it’s ongoing and Long Covid is the outstanding crisis which we haven’t dealt with. There are people in Ireland who developed Long Covid following 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 because they were “young, fit and healthy”, they’ve been told Covid “is just a cold”, and they can “vax and relax”.

In preparing for this hearing, our inbox was flooded with e-mails from previously healthy people of all ages whose busy professional and family lives have been utterly devastated 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 importantly) medical supports and being met with misunderstanding, minimisation and often dismissal and disbelief.

This committee has shown considerable understanding about Long Covid before, so I’d like to update you on what we’re currently facing. We’re 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aspects of Long Covid management with a particular focus on the services provided to both adults and children under the outdated interim model of care, education about the condition from both a medical and public awareness perspective, how we support sufferers and how we can reduce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 the comprehensive standardised data collection and analysis.

In October 2022, this committee held a session on Long Covid, during which those tasked with providing healthcare services told you that knowledge around Long Covid was still emerging and evolving and that services would develop and improve accordingly.

For the most part, that hasn’t happened.

• The interim model of care is now 31 months old. It hasn’t been updated. There remains no PPI, no patient involvement in the clinics.
• Clinics remain understaffed, under-resourced and not fully operational.
• The clinic as a centre of excellence, a one-stop shop as envisaged and described to this committee hasn’t materialised.
• Thousands of research papers (including some internationally acclaimed Irish research) have now been published on Long Covid and new understanding is rapidly emerging. Yet this doesn’t 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 on 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 effects of the lockdown 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 multisystem, 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 deputies 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 others stop attending if they view the limited services offered by the clinics as unhelpful. Some have been discharged, still unwell but told there’s 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 haven’t been so fortunate.

The lack of universal recognition and understanding directly harms patients. I’ve permission to share the following.

Ann had Covid in early 22 and was hospitalized for 6 months. After infection, symptoms persisted. 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 in Long Covid.

She had multiple episodes of dizziness, visual disturbances, and loss of consciousness per day. POTS experts are emphatic POTS isn’t deconditioning. However, Ann’s doctor believed she was deconditioned and prescribed regular movement.

Ann was using a commode. To get her to mobilize, the staff removed access despite the risk of injury. For 5 days, Ann had 47 POTS episodes, whilst 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 bringing it resulted in frequent bedwetting and soiling.

A physio prescribed bed exercise. Ann told them that afterwards, she would feel worse, but the team seemed to know nothing of Post Exertional Malaise (one of the most common Long Covid symptoms) and ignored this.

The Dr insisted she mobilize daily, and she deteriorated until she couldn’t even use a wheelchair.

She lost 32 pounds in the hospital and left there MORE unwell.

During those 6 months, no clinician suggested the possibility of Long Covid, despite obvious signs.

In 2020, NICE stated exercise was NOT a treatment for Long Covid. The exercises were clearly making Ann worse, yet they persisted.

Today Ann is no better. She can’t move without triggering her POTS. She’s confined to bed, with no quality of life. Medical appointments are almost impossible.

Two weeks ago, Ann was finally diagnosed, after 2 years of illness. How would Ann be today had her team diagnosed her Long Covid and managed it appropriately?

Those like Ann who suffer from severe forms of Long Covid are often invisible. Too sick to attend clinics, too sick to be heard, they simply disappear. In one tragic case in the southwest 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

‘’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 affected. On October 22 you were told by the HSE that children recovered faster than adults and that existing pathways could manage paediatric Long Covid, therefore there was no need for specialised services. Parents of children who have been sick for years would disagree.

Kate got COVID at 14 in 2022, she was previously healthy but developed Long Covid symptoms and for five months was bedbound.

She spends 50% of her daytime hours in bed and has missed 80% of school.

EEGs confirmed that COVID has impacted Kate neurologically, triggering subclinical seizures. She experiences profound fatigue, migraine, dizziness, loss of vision and joint pain.

Kate missed her junior cert and it’s unlikely she will sit her leaving. For almost a full year, Kate received no medical care.

Pain from migraines woke her 6/7 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 2 years when Kate became ill, yet none of her Drs recognised the obvious signs.

Kate has missed every major milestone of young adulthood. Her life has been obliterated. She’s surviving, not living.

Her story is not unique. Many parents have been given recommendations that contradict best practices such as maintaining previous routines, exercising and pushing through symptoms.

We’re aware of the HSE’s plan for a paediatric clinic for fatigue-based illnesses. Whilst we welcome services, the term Long Covid is not being used, and as far as we are aware there was again no PPI in its development.

When it comes to financial support for those with Long Covid, we are also failing.

The SLWP financial support scheme for healthcare workers who contracted Covid on the frontline, pre vaccine and without adequate PPE was initially stopped on the 31st of March. Yesterday it was extended by three months. While this is welcome, a longer-term plan is desperately needed. Our ex-taoiseach recently claimed that ‘these workers likely contracted COVID at home’ despite the country being in lockdown. A frontline worker who may lose her home as a result, described it as “a middle finger from government”. From clapping our heroes for going to work while we stayed at home to making them homeless.

Why would any frontline worker risk their health again knowing this is how they will be treated?

Ireland and Greece remain the only two countries in Europe which don’t recognise Long Covid as an occupational illness and Long Covid is not recognised as a disability, hindering access to reasonable accommodations and making 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’re now in a phase of ‘personal risk assessment’ which is impossible when the risk of Long Covid hasn’t been communicated. Long Covid patients frequently report deterioration of their health following reinfection. 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. Vaccines, as with all medications carry risks of adverse reaction and while the vast majority of Long Covid occurs post-infection, those who’ve developed Long Covid-like symptoms as a result of vaccination have yet to be formally acknowledged by government, thus subjecting them to disbelief and derision.

We’d 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 re-infection aren’t benign. Mitigations 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 both from a population health and an economic perspective.

Long Covid is a vast issue, and it’s difficult to talk to all the areas where improvement is needed in a short space of time. We’d be delighted to answer any questions you have or expand on any of the points we’ve raised.

Thank you.