populations. now on bbc news, it's time for spotlight: living with long covid. tonight on spotlight, we hearfrom people suffering with long covid. stories of resilience but also desperation, pain. and we ask, 18 months into the pandemic, why are they still waiting for the stormont executive to provide long covid services to help them? my name is zoe mcnulty, i am 27 years old, i am from derry and i caught covid at the very end of march. 31st march 2020. my symptoms with long covid are, chronic fatigue, asthma, brain fog, memory problems, intolerance to heat, dizziness, heart pains, palpitations, high blood pressure, high pulse, aches and pains, headaches, nausea. be hard to count. the zoe mcnulty before i had covid, i was very adventurous. i lived in italy for nine months. i was a nanny with this family. i had graduated from my masters in december 2019 and i was hoping to travel and teach in different countries. use the last of my 20s to just be free. i think for certain that i caught covid when i worked in a pharmacy. after covid, my body still didn't feel right. it felt like covid took my perfectly healthy body and brain and gave me a new body thatjust didn't work and a brain thatjust couldn't function. like, ijust couldn't explain it, like, i would try and put some socks away in a cupboard and i would just be lying on my floor and i would be, like, i don't know how, like, how am i supposed to get back up off the floor? like, i'm so exhausted. ijust remember that summer thinking, i don't think i'm ever going to get better, like, my immune system it's just got so destroyed by covid. the doctors weren't saying, well, you have long covid my boyfriend, he was from italy, we were together for almost three years and he just couldn't understand that because i wasn't hospitalised from covid, how could i be so bad? so, the relationship had to end because i couldn't have anyone around me who didn't understand what i was going through. when i kind of got to the year mark and so many things had happened before that, too, you know, during that year, it can be really tough, mentally, it can be very draining, sorry. it's just so hard sometimes, sorry. yeah, it can be very sad, you kind of grieve the person that you were before and, yeah, mentally, you can only go on for so long before itjust becomes a bit too much and a bit overwhelming. zoe mcnulty is one of around 20,000 people in northern ireland, thought to have some form of long covid. but what is this illness? scientists are still trying to establish a clinical definition. but for now, the uk guidelines define it as a condition that develops during or after the initial infection, continues for more than 12 weeks, and its symptoms can't be explained by an alternative diagnosis. so far, the illness has had more than 200 potential symptoms linked to it. professor sir terence stephenson is carrying out research into long covid. he hopes the number of recognised symptoms can be narrowed down, but so much about the illness is still unknown. if we think of other viruses that are well recognised to cause persistent problems, like glandularfever, like hepatitis, they affect relatively small numbers of people. it's the size of the problem that's different this time. a recent uk survey found more than one in ten people were self—reporting with long covid symptoms, 12 weeks after first being infected with covid. and one in four of this group said they were still experiencing symptoms at least a year later. two—thirds reported the condition was impacting on their ability to carry out day—to—day activities. there is still no answer to what causes the condition. many who've developed long covid didn't have a serious form of coronavirus and weren't hospitalised. my name is ashleigh bachelor, i'm 3a years old. i'm originally from ballygowan and now i live in edinburgh with my husband, graham, and my daughter, mila. life before covid, i was pretty active. sport and physical activity was always a big part of my life. i played national league hockey week in, week out. i represented ulster whenever i was at school. i was manager of the scottish women's over 35 team. climbed kilimanjaro. i like cycling. yeah, just love being active, love playing sport. put a ball in front of me and i would've chased it. so today is sunday, i look and feel like rubbish, i'm tired, i've got a stonking headache, like a real tension headache right up here. i haven't been sleeping well at all. i got covid in march 2020. i went on to develop long covid, and my symptoms have included chronic fatigue, chronic pain, tinnitus, pins and needles, peripheral neuropathy, brain fog, dizziness, light—headedness, memory problems, pretty much every system of the body has been affected in some way, shape or form. it's notjust tiredness, it is debilitating fatigue. the chronic pain for me is a big one, it's like something screaming in your head, just all—over body pain when you're awake. a lot of my hair fell out at the beginning, that was a really common one for a lot of people. so 35, a0 different symptoms, yeah. going from where i was and playing hockey every week to now being in a wheelchair was a hard pill to swallow. my husband and my daughter were going out at the weekend and going to parks, etc, and i wasn't able to join them because i would be too breathless or be too dizzy. so i now use a wheelchair from time to time. i use it for going places that i wouldn't otherwise be able to. there's good days and you feel like you're on the up and you start to have a positive mindset, and then all of a sudden you crash and you relapse. my daughter was due to turn one at the end of november and then obviously it would be christmas. i at that point didn't know if i would be alive for my daughter's first birthday. my body felt like it had been absolutely riddled with, i don't know what, something was just going for everything. so i had bought and wrapped all birthday and christmas presents by the beginning of october, through fear that i might not be there and at least there would be something there for her from me. um...sorry. putting so much strain and so many obligations onto my husband. we both worked in pretty well—paid jobs and all of a sudden i was then receiving stat sick pay. just feeling like a massive burden to everyone around you. my husband, he's been great. he has really stepped up. he has been emotionally supportive. mila has been a tonic throughout all of this for me. you know, she's kept me going. as well as that, we've relied on my mum coming over from northern ireland frequently. so maybe two, three, four weeks at a time she will come and stay with us. i am going to get soppy. my mum has been my rock. my mum has always been my rock. to see the change from how active ashley was is just, oh, unbelievable. itjust saddens me so much, and i have cried. i've cried, not in front of her, obviously. i've cried at home. you just feel her pains, and you feel the lowness in her heart and in her voice. without a shadow of a doubt, long covid has been far worse than covid. with long covid, it'sjust a living hell with no real end date to aim for. no light at the end of the tunnel. i think i need to have hope for my own mental health. if this is it, how can i best live my life, how can i still be me? even though it might not be bouncing up a mountain or kayaking down a river, you know. there's got to be other things out there that can help me or make me happy. one of the striking things about long covid is how ill people can be, while outwardly looking well. however, spend some time with sufferers you start to notice the signs — like the crippling tiredness and a vacant stare that appears in some peoples' eyes, even after only very small amounts of exertion. it's not known how long this condition may last for some. i think that's impossible to answer at the moment. what proportion gradually get better and what proportion are left with er, an ongoing residual illness that goes on and on and on. it's just too early, you can't read the end of the book yet, we need to let the pages turn. it's not only adults that are suffering. as a paediatrician at great 0rmond street institute of child health in london, sir terence stephenson is leading the largest study in the world to date into long covid in children. it will continue for two years, but the first findings have just been published. somewhere between probably one in seven and er, and one in 1a young people who've had the covid virus might be left with persistent symptoms. they could be as many 30,000 in england. it is not a trivial number, some of those will be very severely affected. my name is imogen. i am 13 and i am from county down. i got covid around the end of march 2020, you know, as schools were about to shut. and at first, whenever i went to get that checked they weren't doing covid testing on kids so they wouldn't do a pcr test, they wouldn't do a covid test on me so i was just told to treat it like the flu, but the flu ended up not going away. the fatigue started pretty early on, it was so hard to do daily tasks, getting dressed in the morning. i would sometimes get dressed in tears i could barely see, barely move. school was probably the hardest thing for me. my grades were dropping and usually i get good grades in school. and i was really angry and upset. i remember there was one german test i did, just a vocab test that we do, and i got every single answer wrong, what i wrote didn't make sense. i was almost asleep, i couldn't see straight when i was doing it. overtime, my headaches became worse. my first serious blackout was whenever i was with my granny and granddad. my parents were out and it was just us three. and i think i was standing up to show them where the bins where and then i collapsed. and it was really scary. but as i went to a paediatric consultant and she started doing specific blood tests it started to come back that i had low iron, low folic, bad blood pressure. i had extremely low blood pressure, my heart was beating irregularly. i had to go to a private consultant to be able to get an antibody test because they weren't doing them on the nhs for children. i feel as if, if i hadn't went private, um, i would still— i would be worse now. my mum and dad have supported me through everything. they were the ones that battled to get me to the private doctors. they've fought the same battle with me. i'm very happy i got my vaccine. the only reason i was able to get that was because i had a diagnosis, they knew what was wrong with me. and i'm over the moon about the fact that 12 to 15 year olds can get the vaccine now. and it's just an amazing thing. and you know, get it, if you can. if you want to, you know. if you're scared of needles, that's fine, so am i? before covid i took part in a lot of sports like golf and cricket. things aren't back fully the way they were. and i think it's going to take me a long time to get back to where i was. but i think that i am getting better. while imogen is recovering, other people who got the coronavirus back at the very start of the pandemic are still going through their own, often unseen, daily battles with long covid 18 months later. including one man who fought to save his life, when he got the virus back in march 2020. i'm mark mcclurg from newtownards, i'm the pastor of ards elim, i'm happily married to claire and we have three lovely children; lilliana, josiah, and judah. i've been suffering from covid for 18 months, i was actually in church preaching, i couldn't move. i was just stuck to the pulpit. i had chest pain, back pain and i knew i was in trouble. i probably was one of the first people in northern ireland to contract covid 19, as i was one of the first ones in the ulster in the icu with covid 19. and i made a video, just to try and help people, to explain to people what i'd gone through, cos i didn't want anybody going through what i'd gone through, because that covid made me feel like i was drowning, i was in pain, i was struggling to breathe. this covid virus is deadly and dangerous. this coronavirus wants to kill you and wants to take all the life out of your lungs. i realised that i would have long covid when the follow—up interview with the consultant was explaining that the symptoms that i have could last over a year. there's three of them that are really hard on me — chronic fatigue, breathlessness, and like a brain fog. you just have pains just for no reason. long covid's had such a major impact on all my body. so on a sunday morning we were singing, and i used to wear a face mask. since i've had covid, i've been just constantly backward and forward with hospital appointments or gp appointments. in february, i was noticing heart palpitations. i was getting more pains back in my chest and back. i ended up with a pulmonary embolism or clots in the lungs. i've been asked by many people do i think that the clots were to do with the covid or long covid, i'm not sure, but i've had this since i've had covid. right here, mummy�*s going to count this time, go and hide quick. this has had an effect on claire but she's so loving, she's so understanding. i have two young boys at 3, you just wanna go out and play football and run after them and play out with them but i can't do that, just find myself just constantly getting out of breath and i have to sit down, and that's something that was so special to me, just being a daddy. i think the boys erm, don't understand it but lillieanna will say, "daddy, is that the bug making you unwell today? " so, it's just so lovely, when she says that, she'll come and give me a hug and snuggle into me. she just wants to help me. there's a lot of duckies in there. being 42 and suffering with this is soul—destroying, it's discouraging. my faith is what's carried me through from that moment in icu right to this moment in time and... the amount of people who have continually prayed for me, that's just so humbling for me. i'm just hoping that one day i will get better. there is now growing pressure for the nhs here to provide specialised services for those battling the after effects of the virus. across england, there have been long covid clinics open since late last year. with the focus on the enormous effort to tackle the pandemic through lockdowns and the vaccination programme, many sufferers of long covid in northern ireland have been left frustrated by how long it's taking to provide support for them. so just what is the stormont executive going to do to help? i think it has been a difficult process for me to get help i fully understand that, you know, how stressful like the past year or so, the absolute strain that the nhs and gps have been under, but i definitely feel angry. you see people over in england, who are like, going to long covid clinics and they're doing really well, and you think, i think, seriously, like, no, no offence to the northern ireland government but they've been happy to leave me sitting here for the past 16 months. if i had had a long covid clinic months ago, could i have been better by now? like i'm essentiallyjust left in the dark, like, figure it out on your own. thankfully there are facebook groups set out there, and there was, there is one specifically for people in northern ireland so we all kind. we understand the frustration and anger that all have. with no specific nhs services in place, for over a year now northern ireland chest heart and stroke has been running support programmes for sufferers. as far as we could see there was nothing else happening in the community. we had the expertise through our respiratory team and we wanted to step up and do something. we as a charity understand the pressures that our statutory colleagues are under. but it's been very frustrating for us as well because last year we told our statutory colleagues that we were offering this service, we wanted to be part of the solution around those discussions of what long covid support was going to look like. and here we are, you know, on the cusp of october and there's still nothing firmly in place. the department of health told spotlight it anticipates new long covid services will be established by the end of october. it indicated a number of long covid clinics will open — but it couldn't say exactly where these will be. and it said the services will be designed for adults only. the need for support for children will be kept under review. it's estimated around £2.5 million a year will be needed for long covid support, but stormont hasn't yet agreed a health budget to ensure the funding beyond march next year. and the department of health has admitted to spotlight that it also hasn't yet collected the data required to assess what services are actually needed. even though we're now 18 months into the pandemic. chest heart and stroke questions how anyone can know what services are needed and where, and how much they will cost, if the data hasn't been collected. i suppose it's part ofjust a very complex picture within our health and social care system and the problems that were already here before long covid happened. but i think data collection is something that we are, 18 months into the pandemic now, there, you know, surely should be some sort of a coordinated approach there and how can the department even know that the money that they've ring—fenced is going to be enough? the department said there are difficulties collecting data on long covid, because of a changing picture where some people recover but others become ill. it added, data is now being gathered but it will be a number of months before there is enough to analyse. it expects the collection of data will improve once services are fully up and running. zoe and dad, david are trying to stay positive. even if the pandemic was gone and even if everything was back to normal, you're still not back to normal. i'm not back to normal. yeah. but, just, you may as well be positive, like, there's no... you can't get any worse. i'm in my 20s, your 20s are just for really loving life, having fun, and ijust miss out on these opportunities, that other people can have, because i caught covid. how many more years do i have to wait for research to come out and, and would they be telling me, for what's, what exactly is wrong with me, what did happen to my body? there is the fear that this could be forever. it worries me that this could be my life. if last week could be described as warm, but wet, it's looking cool and dry for the majority of the country this wekk with some of the wettest conditions across the highlands of ireland and even cooler when the sunshine is out, you will feel pleasant at times. there will be sunshine at times dominating the weather charts and we will see the weather fronts creep around like we saw through the night and into monday bringing increased amounts of cloud and patchy rain or drizzle by the time we hit dawn, but partly clear skies in the west and widely a cooler night than we have been used to and temperatures still above where we would see them at this stage in october, but a fresh start to monday morning. a lot of sunshine around to begin with and varying amounts of cloud, mist and fog clearing on a wet start in the highlands and islands of scotland and the rain is fairly relentless on the day and arrange out of the south and east, some spots to southern scotland on the far north of england and mainly dry sunny spells and although not as windy as we saw in the north, a gentle breeze in the south when the sun is out will still feel very pleasant with temperatures peaking around the mid teens for the vast majority. going into monday evening and overnight it still feeding in rain across parts of north—west scotland but starting to creep in a bit further south into eastern parts of england again and that will bring increasing amounts of cloud, keeping temperatures up relative to sunday into monday and tuesday morning is the chilliest is the chilliest across the south with a high—pressure holding on. here is the weather front and there won't be much on it. it's in amongst a high—pressure and become stuck, so through the heart of scotland into eastern england we see increasing cloud and the chance of light rain or drizzle at times and either side, some sunshine, the best of which is around south—west england and south west wales where temperatures could get up to 17 or 18 but the weather front also limits the warm air to colder air and that will be the case as we go into the start of wednesday but the weather front pushes back out as we develop more of a westerly breeze so temperatures lifting along the eastern coast relative to what we saw on tuesday and the best of the sunny spells in the west with one or two showers dotted around. a lot of dry weather to come through the week but an incursion of cold air and rain, thursday and friday and then more general rain in the west of scotland this weekend. tonight — warnings that factories could soon be shut down as high energy costs bite. steelmakers are among those urging the government to act. today, one minister agreed the situation for them, and others, is critical. high gas prices, they've quadrupled this year are making an impact. and that's why i am speaking to people, listening, and trying to work out a way forward. but after the business secretary said he was working with the chancellor on this, the treasury said there were no specific talks on supporting industry. also tonight: the danger of catching covid and flu at the same time. it could double the risk of death. inside the world of kim jong—un — a former top north korean spy tells his story.

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