I first wrote about my despair regarding the treatment of Long Covid on 1st November 21 following the NI government's announcement regarding services. I was hoping that by this stage, things would be different. Sadly, however not unexpectantly, they are not!
I have yet to be acknowledged by any sort of Long Covid service that the Health Minister made the announcement about. I asked the Medical Consultant that I have been seeing to refer me to the services as he has seen me more than my GP so was in a better position to refer me. He wasn't sure how to refer me so contacted the SE Trust Medical Directorate Manager who said there was 'no formal Long Covid clinic in the Trust'. This was on 9th November 2021...8 days after the Department of Health publicly announced that Long Covid services in NI were in place! I then contacted my GP asking to be referred to the services because I had heard from other sufferers in NI that they had been referred successfully by their GP. I did so on 12th November 2021 & haven't heard anything. Others who were referred around the same time as me have had contact via a telephone call & some have been offered Zoom sessions run by physios & OTs.
Since the so called services were announced, very little has been mentioned by our Health Minister, Health & Social Care Board or Department of Health regarding Long Covid...it feels like they think they've done their job. They allocated £1 million & publicly announced services so perhaps in their eyes, they have it sorted. How wrong they are!
Personally my life, due to Long Covid (LC), is unrecognisable. I exist day in day out in a body that no longer functions effectively or reliably. I am a spectator on life. I don't live it, I endure it. As I've said before, my husband, daughters & family are the only thing that keep me going otherwise I would struggle to continue existing in this way. I have been suffering for 21 months & the light at the end of the tunnel is getting dimmer as each day passes.
But yet it feels that I, along with millions of others ( ONS most recent figures state 1.2 million self report living with LC in UK) are continually being ignored. How can over a million people not be allocated appropriate research, medical help & public recognition from a condition that is so debilitating? And that many suffering worked in the health service but yet still are dismissed as being anxious or that it's 'all in our heads'! There is physical evidence proving that LC is a vessel disease (See Dr Resia Pretorius's papers on persistent clotting protein pathology in LC), that there is a physiological cause for sufferers to be so unwell yet services that are being offered are for exercise, breathing techniques & self management.
To be honest, most first wave long haulers have researched many tips to relieve symptoms themselves so aren't gaining anything from these services that have been offered. Plus, for many LC sufferers, exercise is not appropriate due to Post Exertional Malaise (PEM) so zoom sessions that encourage exercise are totally inappropriate & potentially dangerous. How can individuals be properly assessed for underlying health conditions, PEM or POTS if they are not seen face to face? There is a greater risk of causing more harm than good from these services because they aren't treating the actual condition but rather doing what they think is the right without listening to the patient experience or reading the evidence that has been published. eg/ World Physio briefing paper on Safe Rehabilitation of Long Covid patients.
I have had LC sufferers in NI contact me for advice after attending a few of the LC clinic sessions on Zoom. The general problem being that Graded Exercise Therapy (GET) has been recommended during the sessions & it has caused the individuals to 'crash'. I have advised them to only do what they feel is right for them & to not push through to 'please' or 'save face' on the sessions. I've also advised them to feedback to the session leader & to query their rationale in doing exercise without proper assessment for PEM. In fact, I know of a few people who after doing the Trust led LC sessions have gone on to do the program provided by NI Chest, Heart & Stroke because they didn't receive adequate information or care from the funded service!
This is not acceptable. Why offer a service if it's not fit for purpose? Is it to shut LC sufferers up & hope that we'll go away? Why is money not being allocated for research in NI? I volunteered to take part in a research study run by the University of Ulster. I attended the appointment on 16 March 2021 which took a massive amount of energy to get too but I was keen to take part in research. In the initial research plan it stated that I would need to be available at subsequent dates over a period of time, the first one following the initial date was to be at 4 weeks.....I have yet to be contacted. This is extremely disappointing & makes me wonder at the authenticity of research in NI with regards to LC.
Why is NI not recording LC data? I get that the health service is under extreme pressure but LC is a massive problem & will ultimately add to the pressures on the NHS in the long term if it is not properly dealt with now. Evidence is emerging that the longer someone LC is left untreated, the less chance they have of any sort of recovery. Grim news for first wave long haulers like myself. Are we being ignored because we are too sick to fight or shout loud enough?
It doesn't help that LC is rarely, if ever, mentioned in official government statements. During the last number of weeks I don't think I've heard any government figure warn the public against the risk of developing LC following infection from the Omicron variant...why? We know that approximately 10% of people go on to develop LC following initial Covid infection which means the potential figures following the latest Omicron wave will be extreme but it still isn't highlighted publicly. This leads the general public to not really believe that it exists in my opinion. If the Health Minister included the risk of LC in their public health announcements, I think more people would be empathetic including employers & health providers. Instead it is being swept under the carpet like a dirty secret that will hopefully not come to anything. Not to mention LC in children which is rarely mentioned publicly but a very real, heart breaking problem that has no allocated service or real acknowledgment.
I have been in tears reading LC sufferers stories in NI that contact me for help & advice. I am very unwell myself so am limited in what I can do for them. People who have worked every day of their adult life are at risk of losing their homes because they are unable to work, have been disbelieved by their GP & other consultants, & are being refused benefits...the list goes on. Some have borrowed money to go privately for help or to travel abroad to receive treatment...how is this ok in this day & age?
What can LC sufferers do to get the help that we deserve? I have offered on many occasions to meet with the Health Minister & HSCB to help plan services. When I did meet with the HSCB I didn't feel listened too-they had already decided the services that they thought were appropriate but as far as I am aware did not speak to a group of patients suffering from LC so how they knew the services were appropriate are beyond me! I, along with others, have shared our lived experiences of living with LC in the media however this has often resulted in trolling & negative responses. I have been referred to on Twitter as having 'lazy bastarditis' along with other horrible things on Facebook following a media article. We are not trying to take away from other conditions or make ours seem worse, we simply want appropriate services & acknowledgement of a very real & debilitating condition, which to date has not really been done in NI or UK. When LC is dismissed or played down, it makes me mad. Why would I choose the life I have now over the one I had before? Why would I just decide to not bother going to work when previously I had 2 jobs? Why would I just decide to not go out with my friends when I used to be the party animal & love going out most weekends? Why would I just decide not to exercise when I ran my own fitness business & absolutely loved teaching classes 6 days a week? Why would I decide to need a wheelchair that my daughters & husband have to push when before I used to run rings round them & never sat down?
People with LC are desperate to have their old lives back & are grieving deeply for them.
LC is a pandemic within the pandemic. We can't continue to be ignored.....