"The journey of 15 hospital admissions in under 3 years has been so traumatic"

Our journey through the Southern and Eastern Health hospital system.

This is a very short summary about how our journey of 13 admissions through Eastern Health and the 2 prior admissions to Southern Health (now Monash Health) impacted on our lives and on my partner’s health and about what may be learned from it.

The first issue was there was little communication between Southern and Eastern Health neither can see each other’s documentation, how can you learn from one another’s experience?

My partner had had extensive consultations with several professors of Neurology at Monash Clayton, it would have been valuable for you to see the documentation for those.

There were many tests, MRI, oscilloscope, video, bloods, x-ray, evaluations and failed attempts at treatment of an eventually diagnosed rare tremor disorder (Primary Orthostatic Tremor ) which was eventually diagnosed by rate of between 14 & 16 kHz, the range is variable and of varied impact on function. Medications were tried and failed. The diagnoses leaves us with this the rate will never change; the range is the debilitating factor.

No access was made to Southern Health and to these records and my partner’s tremor was on several discharge summaries noted as resolved. My partner’s tremor, as described by a panel of neurological professionals including 3 professors and their support team is in-curable, likely hereditary not progressive and the 2 options are medications which may control range or deep brain implant which may assist control. The rarity of this specific tremor provides no evidence this would help, the only indicator is beneficial effects on similar disorders. It was agreed that the likelihood of success did not justify the risks. This is important as this is one of the ‘red herrings’ that kept the medical eye from the main issue, the bacteria that used to live in his prostate.

The admissions to Southern Health

When my partner first became seriously ill, I took them to Monash Clayton because this was where their health support team was. They went through E. R. was diagnosed with a urinary tract infection, liver issues and was medicated heavily for alcohol withdrawal with Haloperidol and Clonazepam and with I. V. antibiotics. It was a long hospitalization with many bad twists and turns. My partner was never seen by the Neuro team while they were there. This admission was followed by rehab at Casey, my partner was only days past disorientation, irrational episodes and aggressive out breaks that they were released to home.

My partner became ill again, was admitted to Casey and transferred to the Alfred because of fluid on the lungs and again a urinary tract infection, they were returned to Casey and had a short stint of rehab and was referred to The Angliss for outpatient rehab.

My partner again became ill and was for the first time admitted to Eastern Health at the Angliss. Again, urinary tract infection, liver issues flagged. They were medicated I. V. antibiotics and with Haloperidol and Clonazepam for behavioural issues. These caused extreme sedation and disorientation, my partner became unable to speak or swallow was placed on a feeding tube and I was told not to expect them to survive. They were eventually sent to rehab. I was told my partner had dementia and advised to put them into aged care. I requested a reduction in medication and was persistent in my demand to bring my partner home. When this finally happened we decreased the medication, their mental faculties improved significantly.

They crashed again, was admitted to the Angliss and treated for a period of a few days for a urinary tract infection and despite my pleas for rehab and clearly making the case that my partner’s safety and mine was at risk because of their limited mobility they was released. I was told to pick them up or they would send my partner home by taxi.

This was just the start of journey that has encompassed a further 11 admissions through Maroondah.

Every one of these admissions has had urinary tract infections as the catalyst. Liver disease was flagged as a factor. The tremor disorder was virtually ignored and dismissed as resolved in several discharge summaries. Through all of this, my partner’s general health has deteriorated, every time they crashed with a urinary tract infection the hole they fell in became deeper and the climb out harder.

Some admissions were short. The short admissions sent them home to falls, poor appetite and fast return to hospital. Two included some rehab at Wantirna Health these had the best and longest lasting times out of hospital and the second of those admissions gave us the referral to the HARP team, without whom my partner would not be alive today.

My partner was re-admitted to Maroondah, sent home an ACAS assessment was done, some support measures were suggested but they were not appropriate.

I fell and broke my hip and while recovering from a plate and screw repair my partner crashed. Between Agnes (HARP Nurse), myself on the phone still in hospital, and my daughter doing my running around, my partner went into respite for the remainder of my hospital stay. They came home and crashed again, had a short stay at Maroondah, came home and crashed very badly in short time by this stage my partner did not want to go back to hospital. I was beyond able to care for them and beyond knowing what to do.

It was Agnes who saw that my partner needed hospital and insisted that I bring them in and Michael who advocated for a different approach to my partner’s care that changed their trajectory from certain death to their current good health.

What Michael did was to look at my partner as a person with potential, and their situation as one that could be changed if both my partner and the hospital staff communicated differently with one another. He listened to both my partner and I and read the history with an effort to understand the heartbreaking convolutions of the journey and then make doctors ask why. He asked why? this had happened over and over and over, and more what could be done to break this cycle.

There was an impasse between Maroondah and Wantirna in gaining my partner’s transfer from Maroondah to rehab at Wantirna, my partner’s faith in any hospital was fragile, they were ready to self-discharge, their brain was still muddy from infection and liver dysfunction. Maroondah staff believed they were could do all Wantirna could do in rehab. It took a fairly desperate day where my partner lost the plot and threatened to self-discharge, as a falls risk with a picc line, Michael identified this risk to them and I laboured that what no one could change was that my partner had the faith in Wantirna and would self-discharge and be in real danger if they did so. Eventually we were heard and my partner was transferred to Wantirna Health.

So the medical team at Wantirna took a new view of my partner’s repeated infection in so much as it had always been left at a point where residual infection had been left and had recurred. They talked to my partner, they undertook high power and long term antibiotic treatment, engaged them in their treatment and gave them understanding and hope.

So here we are at a beautiful point where day by day my partner is still improving, in health, in brain power, in physical and mental condition.

Here is where I see the system failed us. The enormous amount of work done in assessment of my partner’s tremor disorder was never accessed from Southern Health by Eastern Health despite repeated requests to do so.

The question of WHY the repeated admissions for urinary tract infections was written off, not asked it was simply basketed as alcohol abuse and liver damage. My partner was getting tired of the merry go round and they and the communication between them and the hospital was deteriorating with each admission. Because of this and the hospital hurry to discharge, the discharges happened sooner than a true solution was reached.

By the last admission there was little effort to engage my partner in an understanding of their condition, they talk often of feeling like a slab of meat on a table, of wanting to know and understand what was wrong and what the plan was to help them or of asking questions and of being ignored until eventually, broken down and down by the downward spiral of illness they did not want to go back to hospital. My partner did not want to continue this way anymore, they wanted to be left to die at home. This was rock bottom for us, a time when their brain was muddied by infection and their other associated problems.

Writing off my partner’s issues as liver /alcohol stopped other treatments which could have played a helpful role before discharge from Wantirna. My partner’s gait had been identified as alcohol related, it was wide and they leant on the wheelie frame. My partner was not given physio as they felt their walking was enough, it wasn’t. After the meeting with (Neuro-Psych) who laboured this, I spoke to my partner about their natural gait and they started to work on regaining it. They lifted the handles so they pushed the frame and within 2 days had a greatly improved gait, this is still improving. In home physio my partner has been given balance exercises and these have had great effect. My partner had agreed with consultation with their medical team that their alcohol consumption would be curtailed to a very small and rare amount, this commitment was earnest. People who had encountered my partner before had not got this response, I took them at their word, my partner will live by their word, before they told everyone they would not stop drinking, this was different. Had the feedback with Neuropsychology not been so focused on alcohol as the only issue there may have been more issues drawn out of the evaluations which could have been looked at in the light of, what can we do to improve this.

The brain training and retraining that Michael has led my partner through, has had a massive effect.

There were points in this journey where my partner could have been lost. When I was told they had dementia and should be put in aged care. If I had agreed they would have been put in care on a mind destroying blend of medication.

If Michael had not joined my advocacy when my partner was at Maroondah on this last admission, my partner would have self-discharged and still been either dead or on the same roller coaster. Michael’s intervention brought my partner confidence that it could be different and engaged them in their own recovery; I feel Maroondah’s refusals to transfer my partner to Wantirna could have cost them their life.

My hope is that a strategy may be designed to help people who, like my partner, find themselves in complex situations, engage them in their treatment, give them hope and not like with my partner’s journey be such a long and heartbreaking road. I would hope a method could be put in place to recognise situations where repeated admissions for similar issues with possible variant causes or influences would be flagged for the scrutiny of people like the HARP team, people with the ability and resources to step in when the usual system is not adequate. This cycle that my partner has been on has cost them their health, it has been heartbreaking for them and for me, sending them home not fully cured has not given good people a feeling of a job well done.

Through the hospitals and the wards I asked for a circuit breaker. I spoke to doctors, social workers, medical support workers but my partner was not in the usual range of problems and support needs. Here is my plea, put a structure in place that catches the complex care patients that are falling through the cracks of the existing system. My partner should have been flagged for HARP or similar care at about their 3rd admission. It was so difficult for me to hear that Southern Health’s records could not be accessed, how can you learn from the experience of your peers if your systems do not talk to each other?

The journey of 15 hospital admissions in under 3 years has been so traumatic it is almost inexplicable and this is very short summary which I hope can be useful to help develop culture and communication developments to help improve the system for the future.