Today I decided to start documenting my thoughts around the treatment of Long Covid (LC) sufferers in NI.
I've been suffering with LC for 573 days. I was 39, a fitness instructor & part time nurse in an Emergency Department, working 7 days a week before I contracted Covid 19. I worked around my daughters life so that I had the best of both worlds! I was the fittest & healthiest I'd ever been...life was great! Of
Now I'm 80% housebound unless family or friends can take me out for short periods of time, I rely heavily on my husband & children to do most tasks around the house & use a wheelchair to go out because I struggle to walk due to crippling fatigue, pain & Post Exertional Malaise. Other symptoms that I suffer daily include brain fog, muscle weakness & tremors, headaches, tinnitus, skin irritation, hearing loss, insomnia....the list goes on but these are the main ones. I'm unable to work in the jobs that I love, be the Mum, wife, sister, daughter & friend that I want & used to be. Everyday is a struggle to get through, it's relentless & almost like a form of torture. There has been little to no improvement over the last few months & the uncertainty of what my future will look like is terrifying....add to that the worry about employment, finances & no dedicated services or support for LC.
I contracted Covid 19 on 7 April 2020 after working in Covid ED with inadequate PPE...all staff were in a similar situation in the early days. I wasn't admitted with Covid however did have to attend ED on 2 occasions at Day 14 & Week 5 due to breathlessness. It was at Week 5 that I realised that I wasn't recovering from Covid as I'd been told or the way I thought I would. Weeks turned into months of suffering fatigue, breathlessness, pain & brain fog & the lack of support from my GP was evident. On one occasion I phoned the GP because I felt so unwell only to be told that I was most likely depressed & anxious! I have experienced depression over the years & knew that my symptoms were not due to depression.
Thankfully NI Chest, Heart & Stroke had recognised in July 2020 that quite a large number of people were not recovering from Covid 19 & adapted their Breathing Better service to be able to offer it to LC sufferers. It still blows my mind that a charity recognised the demand & adapted their services to support LC while the Health Service appeared to be ignoring it. I took part in the charity's program & can honestly say that it was the first time that I had felt believed, supported & understood during this hellish journey.
In September 2020 my husband began writing to our local MLAs & the Health Minister requesting help for patients like me. At this point England appeared to be recognising that LC existed & were planning & implementing services....nothing in NI. While our MLAs replied & empathised there was little they could do other than put our questions & concerns to the Health Minister. I invited the Health Minister to meet with myself & fellow LC sufferers but got no response. I began speaking out in the media locally, nationally & internationally to raise awareness & question why services weren't being implemented in NI.
In May 2021 the Health Minister announced that 1 million pounds was being allocated to LC services in NI. While I was pleased he had at last publicly recognised it, I was apprehensive at the amount allocated...how on earth was that even going to cover assessment or treatment for the estimated 20,000 sufferers?!
In July 2021, my husband & I met with directors of the Health & Social Care Board (HSCB) & Public Health members to discuss the planned services for LC services in NI. I expressed my concerns to them about what they proposed...fatigue wasn't really considered in their service provision. Focus was aimed at Pulmonary rehabilitation, dysfunctional breathing & psychology services. While the respiratory system is affected in LC, it is not the main symptom. Fatigue & brain fog are more prevalent. While LC sufferers may have mental health issues because their lives have been turned upside down with the illness, it is NOT the cause of the symptoms. I was told that they aimed to have services in place by October 2021. The services would be multi disciplinary including GPs, physios, occupational therapists & nurses. I expressed my concern about the lack of empathy that GPs were showing to LC sufferers. Since January 2021 I have built up a network of LC sufferers from across NI that I keep in touch with & most had had negative experiences with their GPs & had in fact stopped contacting them. I was assured that GPs would be educated on treating & the treatment available for LC patients. However, my most recent contact with my GP in September would be quite the opposite...they were not aware of any LC services being set up.
So today, the Department of Health announced that referrals to LC services could be made from today. But no date for when these services would be in place or what these services would involve!! Once again the DoH, HSCB or Robin Swann didn't give answers to the media questions....this makes me very suspicious! How are these clinics going to be staffed & what training will the staff have? Lack of education on LC can cause harm to patients...current research confirms that LC is a vessel condition & many have little to no exercise tolerance...we need to be treated individually as LC is a multi system condition that literally affects is from our heads to our toes! Services need to be long term, appropriate & achievable. We have suffered alone for long enough. LC is the aftermath of the pandemic yet it seems in NI it is being dismissed & ignored by the HSCB & DoH.
Tonight's news is sobering....our health service is close to breaking point. Staff are trying their best under extreme conditions....I don't for one second blame them for the lack of services for LC. I'm bewildered & disheartened that our government are so backward about forward planning...it's not recent news that LC exists & that there are thousands suffering in NI. Many are of working age who are unable to work & risk unemployment & financial crisis...is that not cause for concern?! I'm also concerned that the model NI are proposing is already out of date...it's limited in what it is offering & will only be suitable for a small number of LC sufferers...maybe that's part of the plan?! Then you can say there aren't as many of us because we don't "fit" their criteria for services! How much more evidence do they need before they provide a service that is fit for purpose? I've offered to speak to the Health Minister, to express my concerns over the lack of support for LC in NI...how is he to learn if he doesn't speak or listen to patients who are already living with this condition. Apart from ME, I'm unsure of any other condition that the sufferer is left for so long debilitated & ill. You wouldn't let an animal suffer what we have for 19/20 months. Sometimes I think that if I had been diagnosed with a more recognised condition things would be so different & more manageable. I know that it comes with the territory of having a 'new' condition but there is research & new evidence appearing regularly from across the world about treatments & causes of LC which provides me with a glimmer of hope however I fear that that hope will be shattered by the backward thinking attitudes of those in power in NI.