DISTRICT NURSES FAILING TO ATTEND STANDING APPOINTMENT & FAIL TO ATTEND A CATHETER EMERGENCY TO SOMEONE WITH HYDROCEPHALUS
This occurred on 13th March 2024 - about a serious issue that regarding local District Nurses.
BASIC OVERVIEW: (for more of the reality - see also The Details section, at the end).
This Incident in Total pertains to BOTH Myself, and Lolli, but the MAIN Danger and Detrimental Consequences was to Lolli.
We both have 4-weekly Suprapubic Catheter Changes via District Nurses. On This Day (13/03/2024), we were BOTH due to have our 4-weekly Suprapubic Catheter Change.
Before this, on the Saturday preceding (10/03), Lolli started having complications with the catheter itself.
However, she decided to postpone getting it changed to at least Monday, as she didn’t want to call Out Of Hours – they are strangers, and she (nor I) doesn’t like dealing with medical issues with unknown people, least of all her Suprapubic Catheter. When Monday came, it was no better and arguably worse, yet, Lolli decided she would soldier on dealing with the problems until Wednesday, when help would inevitably come, anyway – especially after My Mam called the District Nurses to confirm Wednesday was still booked to come and see the both of us.
She didn’t want to cause more fuss or extra problems by forcing them to come out for an Emergency Catheter Change, when they would be here “in a couple of days”…
However, they Failed To Attend The Appointment. When finally asked the reason they ended up claiming was that it was “in their system” as being on 14th March, not the 13th March ….
So…. This they had changed pretty much quite literally overnight, it would seem – sometime between Monday 12th March when we VERIFIED IT Over The Phone With Them, and Wednesday 13th March when they decided they were going to rearrange it without consent, without notification, without consultation, or communication of ANY Kind. They certainly didn’t tell us they weren’t coming. And they subsequently changed it from 13/03 to 14/03, without any warning or notification whatsoever.
Obviously, if they had, Lolli’s reasoning and decision-making would have been Quite Different.
We had to even call them to even get this information – Mam spoke to their “Boss” (whatever position that technically is called these days), and their excuse was that apparently, they were all “busy with Syringe Drivers” and had no time for us and wouldn’t be coming out.
At that point, we immediately notified them that Lolli Burke’s Catheter was Problematic, at least Partially Blocked; certainly barely draining (200ml in 5 ½ Hours)– and we had originally been expecting to explain this just to the Nursing Staff that should have attended, so they could deal with it promptly.
We also informed them that Lolli was showing symptoms of Uncontrolled Hydrocephalus by this point, with fluid starting to fill her pressure-relieving cranium hole, and had a severely distended abdomen and water retention in her arms and feet – and was getting quite ill and symptomatic from having CSF [fluid] rising in her skull – severe Migraine-like headaches, disassociation and feeling of being “underwater”, difficulty in, or sluggish, thinking (brain-fog of sorts), difficulty speaking (cognitively and physically) confusion, memory loss, sensory sensitivity, unable to keep eyes open, losing lucidity and even losing consciousness [amongst others]. [And by the time of that phone call, we should have been post-change by at least two hours, if they’d come at their normal time of approximately 2pm].
They still insisted that they would not be attending. Eventually, upon needling from my mother, they said to check again on Lolli and call them back. The return phone call was never answered, and all Mam could do was leave a message.
In desperation, I called NHS 111, in case they might be able to do something or send someone, and the call handler immediately put me on a wait list to speak to a nurse about it. When the promised 111 nurse called me after a short wait and I told her the state Lolli was in, she was immensely unnerved to know Lolli had hydrocephalus, was in this state with no one to come out to her – and had also had both Sepsis and Peritonitis in the past. With no knowledge of when anyone might be able to help her, she urged that we attend the local A&E with Immediate Effect, so that they would be able to do the procedure for her instead, because the risk of sepsis was high.
Apparently, a [Nurse] stranger over the phone can work this out, but not the District Nurses that she’s been under for several years.
Just as I got off the phone to them and wondering if we could realistically GET Lolli to the A&E without actually making things a Lot Worse (two previous experiences had absolutely proved it ONLY made things WORSE), Mam got a phone call back from the District Nurses, who had pushed Lolli’s case onto the Evening Staff instead, and letting us know THEY would be seeing Lolli and myself instead.
That call was at around 5:30pm. Nearly Two Hours after first trying to contact them and leaving them a message after the second attempt, Three Hours after this should have been Finished.
— So, if it wasn’t for that phone call right then, we would have had to make our way to an overly packed hospital ED waiting room with Noise & Bright Lights, for a long wait in a bad chair for Lolli, leaving her in agony and probably unconscious, making her EVEN MORE ILL [and that IS what happened the last two times we were in this situation, in December 2022]. We would have NEEDLESSLY been clogging up an already Clogged Up Emergency Department, for what would NOW be Emergency Treatment, for something that truly was ENTIRELY Avoidable. —
Evening District Nurses Came around 7:10pm and left around 7:30pm, everything going like clockwork. Unfortunately, though, for Lolli the Damage Had Already Been Done. FIVE HOURS LATER. And fobbed off onto a different shift. Forcing Lolli to endure the PAIN of the Partially Blocked Catheter, and her Hydrocephalus Symptoms for FIVE HOURS MORE than necessary.
Even AFTER the Catheter change, it was too late to PREVENT Very Serious Symptoms of Uncontrolled Hydrocephalus for Lolli. That evening and night were Very Difficult to manage, and Lolli was quite ill. She had difficulty staying fully conscious yet couldn’t quite be completely sleep. Her “Migraine-like” headache was unbearable. The fluid was still stagnant in her head and her face, difficult to drain. Her face was distended and twisted from the water retention in there, too.
Instead of looking forward to her birthday, she was struggling to simply Exist. She didn’t eat any dinner (she ate virtually nothing throughout the entire day). She simply collapsed onto the bed and remained asleep or zoning in and out with pain and a myriad of other horrible symptoms.
The same went for me – I was struggling to barely exist at all, too. I Blacked Out through most of the Evening and Night – something that I do when overly overwhelmed by Stress, Pain, Distress, or Exhaustion; I had plenty of all of them by this point. Yet – I STILL had to LOOK AFTER Lolli. I still had to make sure her catheter was draining properly; that her leg bag was filling up correctly and being drained before it was too big and backlogged back into her skull again. That air wasn’t clogging it and preventing the urine from draining correctly. I had to manoeuvre her to make sure was put at – and remained – between a 45 and 90° angle to help the fluid keep draining and not backflow or backlog again. I had to try and remain as lucid as possible to help her take her medication, as well as take my own – something that Lolli actually usually did FOR ME, and something I have immense difficulty with managing successfully, at the right time.
For her Birthday, the next day, instead of what we were going to do and had planned, Lolli was asleep in bed and virtually unconscious. She was in a LOT of PAIN. Her Hydrocephalus Headaches mimic Full Migraines.
When there is CFS backlogged in her head, it also causes swelling in her face, causing the side of her face and cheek to bulge out and distort her features, jaw and neck, which can also make it difficult to breathe and swallow. She is difficult to wake up, sluggish, unable to open her eyes, or tolerate noise or light. Unable to stay awake longer than a few short moments, as her brain slowly starts to literally decompress. She feels “ill, out of it, in a LOT of pain”. Struggling to take medication. Not eating.
Instead of recovering from yesterday, I am also struggling to remain conscious myself, my own disabilities and medical conditions flared up and making things very difficult and painful. When I am highly ill, I BlackOut Unconscious for non-specific amounts of time. This made it all the harder to ensure that Lolli’s condition was continued to be stabilised; hoping it wasn’t fighting a losing battle, again.
The Birthday Plans we had were left in tatters, her Birthday Ruined. But her mind and abilities were also severely compromised and ruined, as well.
Patients’ Backgrounds: Lolli has hydrocephalus and a VA Shunt with a valve in her skull, close to a Cranial Hole to help ease pressure of any building CFS. She also has Spina Bifida, “mild” Cerebral Palsy, Diverticular Disease & IBS, and is Learning Disabled. She has also suffered Peritonitis and Sepsis. Lolli currently finds it extremely difficult to mobilise due to extreme chronic neuropathic pain from complications affecting her spinal cord & probably due to Spina Bifida. This has been complicated and compounded by extremely complex issues surrounding her Suprapubic catheter during the first 8 months of its insertion [see below, re: PALS details].
I, myself [Delphine], am an Autistic Person, with Severe & Complex Fibromyalgia that causes extreme neuropathic pain & complications likes Immense Exhaustion, Outright BlackOuts (loss of consciousness) for long periods of time, Zone-Outs, disassociation, trembling hands & weak fingers, and Dysphagia. I am also paralysed and a FT wheelchair user. I am, and have been, in Full & Extreme Autistic Burnout for at least at least 18 months. I have overwhelming anxiety and social phobia, Vestibular Migraine and Hemiplegic Migraine. As well as this, I also have trauma-based anxiety about having my Suprapubic Catheter changed, to the point I am outright terrified of doing it.
It’s extraordinarily difficult for Lolli and Myself to make it downstairs. Currently we are basically just about bedbound, due to Pain, Exhaustion, Dizziness, and actual difficulty moving and mobilising at all (after things that happened from Dec 2022 onwards). Undertaking this, each month, we must adhere to a specific schedule through the morning and afternoon to make it downstairs to get our catheters changed, and it starts at 7am and does not stop until we have returned upstairs.
THE DETAILS REGARDING THIS INCIDENT:
From the last Catheter Change undertaken on 15th February 2024, it was established with the visiting District Nurses Staff that the next change would be on Wednesday, 13th March 2024 (they’re done on a 4-week cycle) because the exact 4-week mark landed on Lolli’s Birthday (14/03/2024), and we didn’t want to have to be going through that on her birthday, spoiling plans and a good day.
On 11th March (Monday), phoned up to re-establish the date of the Catheter Changes would be going ahead on the Wednesday (13/03/24). It was indeed established that the date of the next change remained the SAME – Wednesday 13th March 2024.
Come March 13th afternoon, we all go through our established scheduling and routine in getting ready and going downstairs (this takes several hours to manage this, and it s T
THE DETAILS:
Most of the time, they’re relatively fine. The staff are mainly wonderful. However, there have been some problems with them historically – some quite serious, and this current one has – to all of us – entirely CROSSED THE LINE of “shoving under the carpet for the sake of not having to engage with anyone about it”.
- PALS is hopefully dealing with some of the Fallout with Lolli’s Suprapubic Catheter after it was inserted. **
From the last Catheter Change undertaken on 15th February 2024, it was established with the visiting District Nurses Staff that the next change would be on Wednesday, 13th March 2024 (they’re done on a 4-week cycle) because the exact 4-week mark landed on Lolli’s Birthday and we didn’t want to have to be going through that on her birthday, spoiling plans and a good day.
On 11th March (Monday), phoned up to re-establish the date of the Catheter Changes would be going ahead on the Wednesday (13/03/24). It was indeed established that the date of the next change remained the SAME – Wednesday 13th March 2024.
Come March 13th afternoon, we all go through our established scheduling and routine in getting ready and going downstairs (this takes several hours to manage this, and it starts at 7am). The District Nurses usually attend between 2pm and 3pm, and often call in the morning or early afternoon to establish an approximate time of arrival with us.
When nothing was forthcoming by 3:30pm, we called THEM – only for us to be SHOCKED when bluntly told, “you’re not down for today, you’re down for tomorrow”.
So… Apparently, between Monday Morning (11th March) and Wednesday morning (13th of March) SOMEONE had CHANGED the Date without INFORMING US Or Consent, ASKING if it was OK, CHECKING whether or not it was something we could manage, or ANY KIND OF COMMUNICATION to even say they wouldn’t, be attending on that day, WHATSOEVER(??!).
This was NOT the first time this had happened. But it WAS the first time it was IMPERATIVE that they HAD informed us and checked what alternative date would have been suitable for us!
Not only was it Lolli’s Birthday the next day, which we had discussed with them, and we’d had plans of what we were going to be doing for it, but Lolli was in RETENTION and the Catheter wasn’t draining properly whatsoever and needed to be changed IMMEDIATELY.
Lolli had been experiencing difficulties with it since Saturday (10th March) but she thought that instead of calling Out of Hours, which we didn’t like doing as we did prefer familiar people, she’d wait and see how she was on Monday (12th March). On Monday it was somewhat getting worse, but she then decided to postpone the change again until the Original Planned Appointment on the Wednesday (13th March) – which had been verified that that morning with the District Nurses themselves. I was discomforted a little with it, but Lolli is her own person and that was what she wanted, and I could understand why.
Unfortunately, it had been a poor choice. By the time it was “Catheter Day”, her catheter was “barely hobbling” in its ability to function. I had struggled and fought and pushed myself to try and keep her Hydrocephalus Symptoms at bay, during this time, as well as try and keep the Catheter flowing – but it had been a losing battle.
We were both SO RELIEVED “it was going to be over now”. Only – it wasn’t. NOT by a LONG SHOT.
Lolli’s Catheter was barely draining. There was more air in the draining bags than urine. I had to constantly come up with different ways to get the Catheter to drain into the bags properly. By Tuesday I had to forgo the normal Leg/Day Bag and to help with draining. Instead, I attached Night Bags directly to the Catheter tube itself, which helped a little. Sort Of. Better than the Leg Bags did, anyway.
I constantly had to remove and replace the bags from the catheter to unblock air getting caught (quite normal for when it starts getting like this), otherwise it doesn’t drain. I have to do this countless times when it’s like this. I also have to make sure that Lolli’s Cranium Hole isn’t filling up, or if it is, make sure that she sits up so it can (hopefully) drain away – obviously not possible if the catheter area and d all backed up.
At this point, Lolli’s Cranium Hole was backing up and starting to become filled out quite a lot – a concerning amount. Too often in the prior few days [to 13/03], I’d found her Cranium Hole bulging with CFS, and having to deal with that, often waking up to it in the early hours or morning meds when I can barely open my eyes or think straight – but it still has to be done IMMEDIATELY and with URGENCY, no matter what circumstances I find my own self in.
After all that happening since Saturday, and that it was now backing up again, having come downstairs on Wednesday, as well, Lolli was getting more and more ill. General Symptoms of Uncontrolled Hydrocephalus are things like, deep & intense headaches that mimic full Migraines, extra hyper-sensitivity to lights & sound, difficulty communicating & talking, confusion, disassociation, memory lapses or loss, sleeping constantly and unable to be aroused from sleep. Unable to open eyes or engage in any way. Even agitation & aggravating behaviour.
It's important to remember that when Uncontrolled Hydrocephalus Symptoms appear, it’s because the Cerebral Spinal Fluid in the brain and skull is not being controlled or drained; it is in fact trapped inside the head, with more and more being produced with nowhere for it to go.
This puts pressure on the brain, squashing it and compressing it. If the Cranial Hole is filling up, that means that the CFS isn’t draining, and the brain is getting dangerously compressed.
And this is a very PAINFUL & Distressing Situation to be in.
These facts seem to evade the District Nurses Team at every single turn. Has done from the beginning. It seems to evade the professional Medical Personnel in Hospitals, too, especially in A&E, as well.
On the phone to the District Nurses, My Mam spoke to their highest person (I’m not sure what the official title is). This person said they were “busy with Syringe Drivers” that day and wouldn’t be attending. She also informed Mam of “their system’s dates” – 14th March. But, as specified, only 48hours previously, their system had shown up a different date – 13th March. She claimed to know nothing “about that”… Despite being the overseeing manager/supervisor.
Mam explained to her about Lolli’s situation and how ill she was. Paula still insisted they wouldn’t be coming out. Eventually, she said to Mam to check to see if she really was in retention or blocked and call back. When Mam did call back to confirm it maybe a couple of minutes later, nobody answered and all she could do was leave a voice message. They wouldn’t be calling back for about another two hours, at 5:20pm, when it was too late for the District Nurses to do anything to help Lolli, anyway (and I do honestly suspect this was the very point).
Lolli was becoming more and more in pain, her head pain especially agonising to her. The Cranium Hole was filling up. The Catheter was barely draining – by this time, she had managed to drain 200ml since around 10.30am, when I changed the bag – and it was around 4pm. She was in Retention, her abdomen painfully and overly distended. Every move she made, or every move that touched her abdomen or catheter tubes, caused EXCEPTIONAL AGONY to the point she was crying out or even screaming. She was having severe bladder spasms and was Bypassing A Lot.
IS IN RETENTION AND BARELY DRAINING - she is DISTENDED BADLY, can barely move or walk wouth screaming or crying out.
BOTH of us came downstairs for this -- currently mostly BEDBOUND due to various reasons including pain and exhaustion - we fought HARD to make sure we could come down today to do this. Our days starts at 7am to start Meds regime in a way that means we can do this, and take hours to get ourselves able to manage going downstairs and being downstairs - causes stress, fear, pain, panic attacks, feeling discomforted for the week leading up to it.
Have tried mainlining the catheter till today, though it's been problematic since weekend and GETTING WORSE SINCE... BUT NOW THEY'RE NOT COMING
I felt FORCED to call NHS 111 at 4pm for help because they said call back if in Retention but no one in the office called back to help back
- at this rate SHE WAS GOING TO BE FOBBED OFF ONTO THE NIGHT SERVICE ANYWAY!
A 5PM CALL WITH 1111 NURSE... said go to 9 A&E cos of risk of SEPSIS .... BECAUSE OF HYDROCEPNHALUS!!
.
Leavs me {Leli} with a problem too, because now I have to wait till NEXT WEEK probably FOR- because I won't be able to come down and do it on Friday?~~?~!!!
MAM was SUPPOSED Nto be ISNGED OFF MONTHS AGO - for XMNAS 2023 in casce someothing WENT WRONG with one of onur cathetERS~!! to be able to do this in emergencies like this - SUPPOSED TO HAV!! Asked Paula about that today (13/3/24) and shen just said paperwork hadn't been done yet! LOLLI KEEPS ON SUFFERING AND THEY CAN'T BE BOTHERED TO FILE THE PAPERWORK IT' FOR MAM in Dec 202TO TAKE THIS OFF THEIR HANDS AND HELP!!!
dISTRIC URSES CALLED AT 5:20PM to say that they could "put us down for an Evening Call".... jUST as the 111 Nurse was tekllking us to GO TO A7E IMMEIDATELY bevause of chance of SEPSIS WAS HIGH - Hyudrocephalus and PRIOR SEPSISb in dec 2022.... If they hadn't phoned then we probably would have had to CLOG UP A CLOGGED UP WAITING ROOM IN GLAN CLWYD FOR ABSOLUTELY NO GOOD REASON - SPSIS PREVENTION, YES, BUT WAS 100% AVOIDABLE!!
DISTRESSED LEVELS INSURMOUNTABLE... TO SOMEONE WHO'S BIRTHDAY IS TOMORROW AND TO AN AUTISTIC PERSON ALREADY IN SEVERE AUTISTIC BURNOUT - WHO'S HAVING TO TRY AND SORT EVERYTHING OUT AND KEEP THE CATHETER GOING THE BEST POSSIBLE~!!! I AM DISTRAUGHT, PANICKING, ABOUT TO MELTDOWN.... ITS TRAUMATIC AND UNBEARABLE......
lOLLI POSTPONED HER BIRTHDAY - devastated and angry - and frightened because she didn't want to get sepsis again. She is exhausted and tired.
Hydrocephalus symptoms have ben starting .... Zoned out/spaced out/ disassociated, ooziness, wooziness, difficulty with staying awake or even opening eyes, memory difficulty or memory loss, Feeling Very “ILL”,
Night shift called at 6.40pm to say they were on their way.... and arrived approximately 7.10pm, staying until approximately 7:30pm.
We had to stay DOWNSTAIRS - causing Extra Pain & distress, made taking Meds LATE 1 1/2 Hours LATE.... Because BUSY Dealing With This.... And Down here since bout 2.30pm... and only able to back up to rest at.........
This day had been a NIGHTMARE.
Instead of feeling better after catheter changes, and sorting out Lollies Birthday, tomorrow, we are IN PAIN DPWMSTAORS
-----
She wasn’t able to eat dinner. She did not sleep well through the night, if barely at all.
I struggled to eat and had a BlackOut Episode during what was barely passing as “dinner”. I had a few other BlackOut Episodes later on, as well.
I did not sleep well, was erratic and awake for periods before going to shallow “sleep” again.
***
AFTERMATH:
The Next day, on her Birthday, Lolli was unable to leave her bed. She wasn’t able to wake up properly or eat properly. She wasn’t able to partake in anything we had planned and everything needed to be postponed [indefinitely, at this point].
I myself struggled immensely to function in any way, struggled to try and help and take care of Lolli. There are things that need to be done when her Hydrocephalus is in danger, and being exhausted, in PAIN and struggling to remain conscious myself, ensuring Lolli’s care has been a struggle and caused more Stress & Distress for me. I have already spent every day since Saturday (10/03/24) trying to maintain Lolli’s Catheter and keep her Hydrocephalus stable. Now, I must CONTINUE to do so, EVEN AFTER the Catheter has been changed, because of the ERRONIOUS DELAY in someone coming out to see us.
Instead of celebrating Lolli’s birthday with a nice day, of her having gifts, putting on nice nails and makeup, having pizza & birthday cake & favourite treats, her watching her favourite TV shows, and us watching the Liverpool FC Match in the evening, we were left STRUGGLING to manage to Just Simply EXIST.
I am having to look after her, AGAIN – as in round-the-clock care to keep an eye on her urine output, on how her catheter and leg bag were behaving, checking the cranium hole, and manoeuvring Lolli into elevated positions where the CFS might drain out easier. The PTSD from it severely hampering my ability to cope with managing this, but I push through it, because I Must, for Lolli.
This was what I did those 8 months that we were fighting the District Nurses on more appropriately spaced Catheter Changes, so she didn’t have to constantly had Emergency callouts for them. Where her Hydrocephalus was completely out of control and I had to be with her and aware of her situation minute by minute and 24/7, constantly on the ball, always having to be available to try to do whatever it would take to deal with further issues as they arose to make sure that she didn’t end up back in the Walton Centre Hospital from the damage and immense lack of draining it was doing: Fixing the leg bag or draining it, dealing with air pockets in the leg bag or tube, multiple flushes at a time & Lots Of Times [per day every day, per week, every week, and the same every month for Months], sitting her upright, checking her face and cranium hole, checking her stomach for distention that indicated Retention, and so on, and on. All Day, Every Single Day. For 10 Months.
It was a Brutal, Gruelling, 24/7 Mental & Physical Nightmare to endure, on top of my own health failings, with broken or zero sleep, blackouts, immense pain, pure overly drained exhaustion, psychological damage, and irreversible physical damage – that only truly ended around August or September last year (2023). Neither of us have even been able to start Recovering from it, yet. I ended up with Dysphagia because of it – starting in August 2023, and now my food intake is VASTLY restricted, as is my fluid intake – via a toddler’s sippy cup – and I have to take my meds with chocolate pudding instead of fluids, and my life will never be the same again.
The day after her birthday Friday, 15th March, Lolli was still Very Ill, leaving me still fighting to get her Hydrocephalus BACK under control. She was barely able be lucid or awake virtually the entire day, and I had to constantly monitor her condition, her urine output in her leg bag, to make sure that everything was flowing properly and so could continue to drain away the overfill of CFS inside her skull – a slow progress when there is more than a certain amount of it. She remained unable to function at all, barely ate anything throughout the day, struggled taking her medication. I have to physically manhandle her into a sitting position as close as possible to 90° - an extremely tough ask from someone who is paralysed and very ill themselves.
Saturday, March 16th is when Lolli starts showing some signs of recovery. For short moments in the evening, at least she is awake and lucid for short periods, and they really do not last long, before she goes out again, to sleep. She’s still been asleep for most of the day. She still has to have her noise-cancelling headphones on and stay in the blackout tent, with something extra over her head.
The Hydrocephalus itself seems to be finally under control in the main – however, the damage it does is not small, but hopefully it is not permanent, this time. Last time, it had a PROFOUND effect – that was last year, fighting for her catheter to be maintained properly by the District Nurses and being met with refusal for Eight Months straight, and the Uncontrolled Hydrocephalus only starting to stabilise after ten months.
On this day, I am Utterly WRECKED. Over-Drained & Overly Exhausted beyond coping, Blacked In and Out for most of the day and unable to be roused easily, if at all. I am hollow, traumatised, empty, numbed. Barely able to focus on anything and entirely Disassociated. I am barely able to manage anything. My Mam has to take over from the both of us with all Medication, this time, throughout the day. Eating is… Horrific.
I cannot even explain to you the Damage this has also caused to me, as well. My own Mental Health has been SEVERELY Impacted and have been experiencing horrendous PTSD from the last time I was forced to endure this. It has left me with flashbacks, hyper-nauseated, shaking. It was only THIS time last year this was still happening. I am in a “shell-shock” phase of Shutdown, which gravely puts me in place to end up having More Meltdowns.
They Physical ramifications are immense on me, too. I am severely unwell and in Autistic Burnout. I have Severe PAIN from Fibro-Flareup due to this stress & distress of this, I have Immense Fatigue, and exceptionally Exhausted to the point of being drained beyond dry. I am strung to the wire, and non-functional, with great difficulty eating or drinking because of the state I have been left in, having to do and experience and deal with ALL OF THIS. Of having my sole purpose being narrowed down to Lolli’s Welfare & Wellbeing, in dealing with, fighting to control her Hydrocephalus, again. Because if it’s not, she will be gravely ill – possibly suffer brain damage, or worse.
CATHETER PROBLEMS WITH LOLLI, BECAUSE OF THE IN/ACTIONS DISTRICT NURSES IS ONGOING & THIS IS SERIOUSLY WRONG
Lolli already had MAJOR Problems and Disability because of what they did from January 2023 onwards, refusing to get her catheter change to being differed to every 4 weeks instead of 3 months because it kept BLOCKING AND FAILING.
Emergency changes were forced whenever it blocked and each blockage caused IMMENSELY DANGEROUS Hydrocephalus Symptoms in Lolli that ended up being PERMANENT.
During those 8 months, we had to FIGHT the District Nurses to allow Lolli to have 4-weekly catheter changes, despite her catheter FAILING and Requiring EMERGENCY Re-Catheterisation every 3-4 Weeks, and being insistent that she yet remain on an official 3-monthly cycle on their system – simply because a random Doctor in the A&E department where she’d had an Emergency Catheter change (between 26/12 and 27/12) had written it on their paperwork without checking its validity with either Lolli or myself. During this time, Lolli became EXTRAORDINARILY ILL. She became Bedbound because of the Severity of PAIN she was in because the catheter wasn’t changed properly and blocking constantly. I had to flush her numerous times per week, at all hours. I barely rested or slept. Lolli’s hydrocephalus was out of control and dangerous and has caused a lot of complications henceforth. In the year since, we have STRUGGLES IMMENSELEY TO SIMPLY EXIST. We haven’t been able to undertake the things we once had and could.
And For Me…. It caused and exacerbated SEVERE TRAUMA & PTSD in an Autistic Person ALREADY in SEVERE AUTISTIC BURNOUT
Also caused DEBILITATING & DEVASTATING PHYSICAL & MENTAL EXHAUSTION from having to look after the Catheter literally 24/7.... And I had NO Time For Myself Whatsoever.
To a severely Disabled person who is already VERY ILL, this was FAR TOO MUCH to Cope With. I went into Traumatic Shock and Extreme Autistic Burnout. Neither of us are yet to be Recovered from this, one year later.
This had DEVASTATING & LIFE-CHANGING CONSEQUENCES. They so far, 18 months later, seem irreversible.
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