14/10/2023
Dear HSE,
This is an open letter addressing your failings that have put me in danger and harmed my health and wellbeing.
As I write this, I remain alienated from HSE services and I have complex health needs. I live in poverty and currently have to routinely pay 70 Euros to see a private doctor in order to remain on my medications and to monitor some of my health conditions. This is inadequate and I have an HSE Health card and should be receiving necessary medical treatments for free. The various referrals from HSE and private doctors for HSE hospital services have never been honoured, including an emergency cardiac referral, and so you are criminally negligent.
I have had a medical card for 10 months (in theory as I didn't receive it until HSE sent three different medical cards in March/April 2023) and yet I have had to keep paying for private treatment despite living in extreme poverty, and as I have previously said, that is your responsibility for failing me, and you still owe me a reimbursement for the money I've had to spend. In two months my medical card will expire and I won't get a new one and will be left struggling even more with having to pay privately for prescriptions. HSE caused me such alarm and damage and kept writing to my old addresses that in the end I didn't update them with address details when I moved and just told them to stop writing to me.
You've tried to brush me under the carpet, as you do with so many vulnerable people. You cling to the old 'Idiot in the Attic' view of vulnerable adults, or as the late Sinead O'Conner said 'Ireland is still in Magdalene Times, when you let her son leave your hospital and commit suicide, and she's right, what country leaves a vulnerable adult with complex health problems to essentially just go away and die, as you did with me? I didn't go away and die; despite being in poverty I went to a private doctor and preserved my life. And still you are leaving me alienated and misrecorded on your systems and failing to reimburse me for private treatment or provide the help that I need. Even the CEO of HSE ignores my correspondence, so it's time for him to step down and allow someone competent and responsible to take over.
One of the first things that I found with HSE was endemic racism, even though I have Irish blood. I am sure most people of other races and returning Irish who have been born abroad are equally shocked that a professional body, a healthcare body, is endemically racist. Initially it was the assumptions about my race, when I was repeatedly called 'English' when I'm not, and made to feel that I was unwelcome and not supposed to access homeless medical outreach services 'because I was English', which I'm not., I'm a British Citizen, refugee from abuse and violence and integrated in Ireland. Traveller and Jewish ethnically and I object to being called English and treated as if I'm scamming when I accessed homeless medical services while homeless. How low and ignorant can you get, HSE? You're a bad medical service through and through.
Part of the housing and homelessness crisis in Ireland and especially in Dublin is the statutory bodies such as HSE and Welfare not providing adequately for the most vulnerable. Many people would not end up homeless if HSE provided proper medical and social support. At present, as I have found, HSE social workers have a waiting list of 1-2 years and refuse to help those who need housing help. HSE social work services are a token effort.
Back to what I experienced. The racism at the homeless outlets, which allowed other people to jump the queue and left me waiting for 2 and a half hours in cigarette smoke when I'm allergic and standing when I can't stand, with a member of staff being extremely rude and nasty to me when I objected, the effort in there to control clients rigidly gave me flashbacks to the very serious abuse I'd escaped to come to Ireland. The snotty rude racist way I was treated, it was horrifying, but it was and is HSE. HSE insisted at the time on recording the wrong address for me and refusing to correct it, making me out to be staying somewhere I wasn't. They even, paradoxically sent no-reply booster jab emails assuming I was there, when I had corrected them repeatedly and when HSE's archaic system did its best to prevent me getting a booster jab in the first place.
When I tried another homeless clinic, the doctors made so many false promises of referrals, to OT, to ENT and so on and they said I needed a sleep study, and those referrals never came through and years later I still need them - it was confirmed later that the OT referral was never made and it was important, years later as I write this, I still need an OT assessment but HSE have gone on obstructing it. The doctors promised me mask exemption letters and a vaccination certificate, and so on, and those never materialised, and my faith in HSE started to fade. A doctor said that because of my disabilities, I should only be seeing one doctor and I tried to arrange that, was told it was in place, turned up to see the assigned doctor who I knew, and ended up instead seeing a stranger, a hostile rude doctor who, despite me being in relapse, was unpleasant and tried to stop the medication which helps me the most, she was openly hostile, no help at all, and I left without my medication and in tears while in relapse, the incessant errors between the practice and the pharmacy certainly didn't help. Traumatised, I stopped attending the homeless medical services and they refused to resolve the matter or help me when subsequently asked.
The homeless services did one thing for me. HSE was making Covid booster jabs unavailable to overseas nationals and the communication impaired by demanding that those vaccinated overseas phoned a helpline to arrange the booster. This excluded foreign nationals whose English wasn't good enough, and communication impaired people such as myself, HSE breached the Disability Act 2005 by failing to provide an alternative arrangement. After extensive email correspondence with the CEO's office at HSE, a thing that most vulnerable people wouldn't be able to do, the CEO's office offered no solutions and even tried to send me to a place that told me that no, they couldn't give me a booster jab, but the HSE homeless medical services did give me the booster, they simply forgot to send the certificate until many months after the Covid restrictions were lifted and after the formal complaints.
After leaving the homeless services I was without help, but remained as I do now, in need of regular medical support. I developed symptoms, which I still have, which are concerning, and a private doctor referred me to an HSE Emergency Department. I was homeless, and friends paid for me to see the private doctor. The emergency department staff were very good indeed and even got me food as I sat there for 16 hours, as I had no money, but 16 hours was too long and there was no sign of movement forward and I was becoming distressed, so I left, and despite having paid for what private treatment I can, including an ultrasound, the problem originally presented, remains, and I can't afford further private tests.
A doctor at another homeless outreach did my prescriptions and said that I needed tests but he couldn't refer me and so I continued without HSE help, in pain and struggling.
Months later, I finally got my medical card, only it never arrived, it was stolen before I saw it, as I was in a hostel, and the first I knew of it being issued was a letter saying I was registered with a certain doctor, miles away. I couldn't phone that doctor and their clinic had no email, so I set off to see them and to complete the registration. I had trouble even finding the place as there wasn't a sign or a real clinic, it was just a door in a wall, and the nearby pharmacist had to help me as it was entry by intercom only, and I can't use an intercom due to my processing disorder, which also means I can't use a phone. The registration was completed and I was told to come back next week to see the doctor.
Unfortunately when I came back, I was turned away by someone demanding I wore a mask, when I was exempt and had no mask, and I was trying to communicate with them through an intercom, which I can't really do, and got very stressed. How would a communication impaired person access this clinic? Eventually I was let in but was simply stared at by the person on reception, who didn't speak to me, the waiting room was full of migrants for some reason and there was nowhere to sit and no instruction, the silent stare was unnerving and being autistic and not very confident, I left, after writing my concerns about the way I'd been treated on the back of the notes I'd brought for the doctor in case I couldn't verbalise my situation.
I contacted HSE about the situation but little was done. I got a flurry of texts demanding that I phoned the doctor, obviously infuriating for someone who couldn't use a phone, I wrote to the doctor and spoke to head office again, and was sent a new appointment by text. I came to the appointment, struggled with the intercom and this time was spoken to and offered a seat.
The doctor was running late, which is bad for vulnerable patients, they're under stress from waiting and then the doctor is in a rush. It didn't bode well. He didn't have my notes. He also paid very little attention to my medical conditions, preferring instead to try to ram the country I'm 'from' down my throat, basically being racist. He also tried to fat shame me, instead of looking at my medical conditions, which needed treatment, he wasted a lot of the appointment on his prejudices, and despite finding me to be suffering dangerous hypertension, he failed to treat me, despite both of my parents dying of heart and blood pressure related conditions which myself and my siblings inherited.
The doctor seemed to forget most of what he himself said, and failed to treat the hypertension as first suggested, as well as leaving a number of other conditions untreated or not referred as he'd originally said, his manner left me very anxious and distressed, and he sent me out with a blood test referral but no explanation - I gather now after this has happened several times, that HSE doctors get commission on ordering blood tests that are unnecessary.
At reception, she looked at the blood test form and said 'Oh yes, you have to phone this number to get the blood tests', both the receptionist and the doctor knew I couldn't use a phone, this had been mentioned repeatedly. I told her this and she said she'd email me the blood test forms and I could email for an appointment. When looking at the emailed forms I puzzled as to why this doctor was asking for reproductive system tests and queried it, I received a snotty autocratic response that I 'was responsible to get the blood tests done' rather than getting an explanation. I hit the roof, this archaic practice was going too far and I replied no, it wasn't, it was their responsibility to explain what they were testing me for and why, it falls under informed consent, and presumably many vulnerable people are being used by HSE doctors as cash cows. I resigned from their patient list and made a complaint.
In my complaint to HSE I told them all of this and also that I was moving house and would register with the doctor at the new place. and that my medical card had been stolen so nothing should be sent to the address they had for me.
I moved to the new place and put in an application to register with the local doctor there, I didn't want HSE to allocate me to another useless archaic practice miles from home again. Unfortunately despite my application and a covering letter, I was utterly ignored by the HSE Doctor near the new place, the reception there had told me I could fill in the forms, but then I was ignored. I had made it clear I couldn't use a phone when the receptionist said that the practice manager would phone me about my application, and that was stated on my covering letter. But I was simply ignored. The Disability Act is clear that you have to be accessible, and this means communicating with a patient by alternative methods if they have a communication impairment.
In the meantime I had been communicating with your medical card department, asking for the replacement for the card that had been stolen, giving my new address and the proof of address that they asked for. I reminded them many many times that there was no sign of the replacement card and that I couldn't access services such as dentist or optician without it.
Weeks went by, and by now the local Welfare office were urging me to apply for Disability Allowance - which to this day I haven't been able to apply for because of HSE, and also for social housing on the grounds of disability - again because of HSE, I haven't been able to. and as a result of HSE's failures I have been left suffering extreme hardship and degenerating medical conditions. A local training provider was keen to take me on for training but couldn't because HSE's mess meant I didn't have a doctor or medical card and they needed those details and a doctor's certificate. HSE is liable for all of this, but has failed to resolve it, and at present the CEO and his officer are ignoring all correspondence from me.
I can barely write what happened after weeks of asking HSE why my new medical card to replace the one I never received had not arrived at my new address, I remain shocked and traumatised. HSE finally responded by telling me I was registered with a doctor miles away, presumably within the catchment area of my old address, I'd never heard of the doctor, knew nothing about them, and had no idea BECAUSE HSE HAD WRITTEN TO MY OLD ADDRESS, THE HOSTEL WHERE THE ORIGINAL MEDICAL CARD HAD BEEN STOLEN, BREACHING DATA TO THE PEOPLE WHO STOLE MY POST THERE AS WELL AS SENDING ANOTHER MEDICAL CARD THERE TO BE STOLEN, DESPITE MY VERY CLEAR CORRESPONDENCE ABOUT MY CHANGE OF ADDRESS!
As I said, I remain very traumatised by this, it is a rape-like violation and jeer by HSE. I had been waiting for my medical card and my registration with my local doctor after sending HSE proof of address as asked, now I was confronted by this, and as I said to HSE my blood pressure was dangerous with the heart and hypertension issues which are hereditary in my family and now my life was being put in danger from the stress.
Obviously HSE could make no excuses on this earth for deliberately sending data to my old address to be violated by the people who stole the post there, it's a hostel, anything that's not nailed down is stolen, HSE knew my original medical card was stolen there and that I'd moved, but to send sensitive data, medical cards, responses to complaints about HSE there to be viewed by other hostel residents, and registrations with another doctor for some reason, it really is a kind of rape as well as a very serious data breach, which HSE, knowing over and over that I moved house, are criminally responsible for.
HSE responded by sending me two different doctor registrations, one I had never heard of and still have no idea about, and one for the local doctor I'd tried to register with, who had ignored me, and as a result obviously didn't want me as a patient, they also sent three different medical cards.
I am autistic and have numerous other health conditions including severe complex PTSD, HSE's behaviour was profoundly harmful to me. Their ridiculous excuses were an extra trauma and I stopped reading anything from them, they needed to make sure I saw a doctor urgently and they weren't doing so. So I went to the practice of the doctor who had ignored my registration and explained to them that my blood pressure was dangerous and that the Irish Heart Foundation had assessed it and recommended emergency action from a GP with a Holter Monitor initially to ensure that the problem was understood in full before treatment.
The receptionist tried to open the confidential letter I brought for the GP despite the fact it said 'Addressee Only' and said 'I can read this, can't I?' Then the practice manager came and told me that they couldn't help me until next week and would text me, and pretended not to have my details despite my initial registration with them having all my details and HSE having registered me with them.
Anyway, she took my number and said they text me, and they never did, didn't text, didn't write, didn't email, and obviously dangerous hypertension is an emergency, and it's not an emergency that the hospital emergency room can deal with as the Irish Heart Foundation said I needed a holter monitor, and hospitals can't issue those as emergency treatment, so I needed to see GP.
The GP practice ignored me, ignored letters I left for the doctor when no one texted me an appointment, left me for dead with dangerous high blood pressure. I went to a private GP, I paid 210 for a holter monitor and ECG, and the results were alarming, HSE failed to reimburse me or resolve the situation of the GP I was registered with ignoring me.
I was put on several prescriptions which worked and at last I felt safe to exercise, but the private GP's emergency referral of me to HSE"s cardiac services was ignored by HSE, no appointment was ever offered. HSE literally left me for dead, and to this day, this matter remains unresolved and HSE continue to fail to arrange emergency cardiac assessment, which I can't afford to have done privately, they continue to fail me on all fronts and I am without access to medical services.
Of course I would never dream of continuing to fight the doctor who left me for dead for treatment, if someone sees me as of so little worth that they leave me to go away and die, they aren't fit to be practicing, as I've said in my complaints that HSE have failed to resolve.
I have never since then been registered with an HSE GP, and HSE's failures to respond, right up to the CEO, indicate a health service long past the point of disintegration. My health needs haven't gone just because HSE have tried to leave me for dead.
At some point, months after HSE hoped I'd go away and die, while I remained on the medications prescribed by the private doctor, and felt so much better for them, I got a rather weird and unprofessional email from something called 'HSE Inclusion', it was so badly written it sounded ridiculous, some woman, not explaining what the inclusion service was, but demanding my address and repeatedly, every line, using the word 'assist'. It was bizarre. I initially told her not to be ridiculous and I had no reason to give her my address - which I never did, however, my situation was worsening due to HSE's abject failures which had prevented me from getting medical help, housing and disability allowance as well as training, so I asked this woman if her 'inclusion service' helped with housing and welfare, almost as a joke, but she said she'd send some people called 'liaisons' to meet me and they would have some ideas.
The people who were sent appeared to have no idea that I lived in the district I lived in, I'm not sure where they thought I lived, but they also had no clue about housing or welfare and appeared to have come to meet me for no reason. Worse, shockingly, one of them made it his priority to smoke as soon as he arrived - this is an HSE worker?! I'm have allergic asthma and every single day is a miserable battle to avoid cigarette smoke and vape smoke, and this guy thought he was going to sit and smoke while they talked to me, they work for HSE and don't know that smoking is not only a huge cost to HSE, but a killer and also a killer and life ruiner of those who are allergic to it?!?!?
This was absolutely ridiculous, and as I said, these people knew nothing, it's not clear why they came to see me at all. They promised to be in touch the following week when they'd 'investigated things for me', never made contact again and ignored all contact from me, the woman who had sent them ignored all contact from me, particularly galling when I had decided that any hope was hope and had asked her what could be done about medical and dental needs.
She ignored me, right up until I made a formal complaint about her and her 'liaison' workers. Then she was ever so keen to get in contact and of course I ignored her and pressed the formal complaint. These 'Inclusion' people simply added to my stress, and when I was talking to a homeless outreach manager, he said something along the lines of 'They are HSE's little statutory cop-out', a pretence to make it seem like HSE catches the people it fails. There are no statistics for the number of people dying because HSE simply fail to provide necessary medical help to them, but I would say it's quite a high number, mainly voiceless vulnerable people who cannot stand up to HSE. I still haven't been told what 'Inclusion' was supposed to be, or who referred me, the initial email from the woman was ridiculous and nonsensical.
HSE has almost no dentists taking medical card patients, it's a widespread crisis, and after inclusion ignored me, I did my own research and was extremely lucky to find a dentist who said he would be taking new patients in several months time and would add me to the list. I eventually got to see him, but under the medical card he could only do a checkup and two fillings, and my teeth, a legacy from the poverty and violence I grew up in, are in very poor shape and with no money of my own, the HSE checkup barely made any difference to my teeth.
I made one more attempt to get an HSE doctor as, obviously, I needed to stay on the cardiac medication and also get asthma, pain and other medications regularly, someone asked every doctor in the area if they could take me on, as I wasn't willing to be messed about and traumatised by HSE's terrible allocations system again. One doctor said they would see me, all the others in the whole massive area said they were full, and people across Ireland are meeting with this and not able to get medical help until their conditions require hospital treatment - leading to outcry when hospital services are swamped. The one doctor's receptionist said to email them, and when I did, they demanded I phoned them, despite having been told by the person phoning on my behalf, that I couldn't use a phone, hence email. Anyway, they then made me an appointment by email when told again that I couldn't phone.
I went to see the doctor, who was running late and not very helpful, she, like the other HSE doctor, tried to fat shame me and force blood tests, ignored my actual and immediate needs, said 'There couldn't be much wrong with me' if I'd got lost looking for the practice and been walking around for an hour, ridiculous, and basically left me deeply upset again and without the help I needed, no cardiac referral, no asthma check, none of the help I needed.
And to make it worse, there was no intention of signing me up as a patient, it was a scam, they made me sign an 'emergency/out of hours' treatment form even though my visit was neither. Basically with that and the needless blood test attempt, with the doctor jeering that I was just afraid of needles, which I'm not, this HSE doctor scammed me, and then sent a random and silly selection of my prescriptions to the phramacy, failed to respond to the concerns I raised, as HSE themselves did, and left me further traumatised and still without help.
HSE have completely failed to resolve the situation, and have continued to write to old addresses when repeatedly told not to, breaching my data to all and sundry, so I hear, and humiliating me. Again with someone else's help as I can't use a phone, HSE were asked to do an occupational assessment as I have deteriorated to the point that I cannot do the work I would normally do. The occupational assessment team were told very clearly indeed on my behalf that someone was communicating for me because I couldn't use a phone, they were told I would email the referral form to them, and I did, they were asked only to email.
Time went by and I received a letter telling me that they'd been trying and trying to phone me and I was to phone them back on this number....I hit the roof, this is abuse, there's no other word for it. When I'm treated that way, those professionals are not people I would go to for anything, so I told them this in no uncertain terms, and yet, months later they were emailing me and garbling. I told them that I had moved house, they'd better not be sending garble to my old address and that I had no interest in their services.
In the meantime, over the months, where I have been failed so much, not all of the conditions I have are properly assessed, and I was suffering pains that could mean something serious, I tried hard to ask HSE for urgent help but knew I'd be treated badly and turned away and I paid for initial private scans but would have needed further investigation, and I couldn't afford it. I have continued to go to private doctors for monitoring and medication despite being in poverty, and HSE have continued to refuse to resolve the situation.
In the meantime, I'd been getting prescriptions on my medical card but prescribed by the private doctor, and then they ran out before I could afford another private consultation, and the pharmacy didn't tell me, but contacted the HSE doctor who had turned me away with my life in danger instead of the private doctor, the HSE doctor, who should have told them she couldn't be involved, instead refused to update the prescription, neither she not the pharmacy had the right to contact about me, and I made a complaint, another unresolved one, and I went to another private doctor and got the prescriptions restarted with another pharmacy. What happens to vulnerable people who cannot do this? The HSE doctor who failed me should have faced disciplinary action and was no longer my doctor once she'd left me for dead. The private doctor more recently referred me to HSE for a gastroscopy, HSE have yet to fulfil it and HSE doctors made no effort to refer me themselves despite the history of internal bleeding and my dependency on painkillers for any quality of life although even though I am isolated I rely on myself to keep painkiller intake to a minimum. Why is fat shaming, racism and blood tests more important than things like gastroscopy for someone with a history of internal bleeding?
HSE's counselling and psychology services are a joke. They offer only a token service to a few. Many of their counselling services are currently only offered to Ukranians, and their counselling for survivors of childhood abuse left me on the waiting list for longer than stated and didn't get in touch, I was supposedly transferred from one waiting list to another, no one got in touch, and when I tried to update them I was told to contact a service I had no contact details for. and I simply told them to get lost as enough is enough The social worker situation is similar, with a waiting list of one or two years for people in need of help, and a refusal to help people whose main crisis is housing, at this time, a large percentage of the vulnerable population can count housing as part of their crisis.
HSE are quite happy to leave me to suffer and die, and have little fear or the Ombudsman or Legal action, they are insured, and they don't think the voiceless vulnerable have the capability to bring a complaint or be listened to. HSE have failed so many, leading to many deaths, documented and undocumented. Sometimes publicity can make them ashamed. So I am adding what I have suffered to the other published stories of HSE failures.
I am autistic, I have suffered a lifetime of abuse, neglect and violence, I have attachment disorder and psychological damage as a result. I have allergies and asthma which should be steroid controlled but thanks to HSE I don't currently have a prescription and my nose is so blocked by polyps I can barely breathe, I have EDS, which affects my whole body especially my legs, my insides and possibly my heart, HSE are doing nothing to assess or treat this. I have a combination of conditions not clearly separated and defined, which leave me sick and tired - injuries all over, head injuries, spinal injuries a relapsing-remitting illness which needs to be re-defined, and a number of anomalies with bones, joints, ligaments and muscles. I need a new x-ray of my lower spine where it's broken to see if bone slippage is the cause of new symptoms.
Because the damage to my cervical spine is so bad, the relapsing illness may even stem from there as I have core muscle failure - stated by a physiotherapist who said I needed further assessment, episodes of dysphagia and choking (part of what I call relapse), breathing difficulties and other symptoms. HSE are not assessing me, not clarifying the situation and not providing appropriate care, and their negligence is preventing appropriate care from elsewhere.
I am not a doctor, all I can do is look after myself as best I can, as I have done in seeking private help and going hungry to do so and keeping up my medications as best I can while HSE don't care, and monitoring my heart and blood pressure. HSE are guilty of very severe negligence. And had I died due to the dangerous hypertension and the alarming pathology and family history behind it which led to the urgent cardiac referral that HSE didn't fulfil, HSE would have been guilty of manslaughter. If any of these medical conditions, untreated by HSE while they refuse to resolve the situation, results in my death, they will be guilty of manslaughter, and nothing will undo the months of degeneration while they've failed me.
Private doctors have been furious and told me to fight for my right of HSE treatment, but I have, and while HSE won't set my records straight - their records of me cannot possibly resemble reality, and while they won't provide an accessible doctor who will look at my health rather than fat shaming me, leaving me in tears, and trying to get blood tests of my reproductive system, HSE are denying me my right to treatment and are guilty of knowing and criminal negligence.
You know I'm autistic and leaving me damaged by sending things to my old address to be stolen and then issuing three medical cards and two doctor's registrations after that has left me totally unable to trust you, it's your responsibility.
Get your act together, HSE, you've damaged me more than you've helped me, and you've had every opportunity to help, I bring written notes with me to tell you what I can't verbalise and yet you've always prioritised making me feel small, not looking after me.
Regards,
AH
