Carole Kerr’s Story. Age Care & the Health System.

In Memory of Carole Kerr.  10th Oct 1931 – 4th September 2015.

Mum

Carole Kerr

I promised my mother on her deathbed, I would ensure that the story of her treatment at the hands of the medical profession was made known.

I have to admit that for a long time I believed she was exaggerating considerably, until I went to NSW with my school friend who is a nurse and we witnessed first hand the true extent of her issues.

I would like to know of any other older people who have been inappropriately treated by a senior gerontologist on the Central Coast. Perhaps together we can make a difference !

To begin with, the story unfolds like this…

Tom & Mum Japan

Mum & Tom

Mum & Tom

In July 2015 my mother, Carole, a very determined woman, was still living independently, at her two story home in Terrigal. Her husband, Tom, had passed away in November 2004. Due to the considerable amount of money she spent to have Tom properly cared for in his last year and then since his death, Mum had been really struggling financially. The house was reverse mortgaged just to enable her to remain living there.

Early 2014 Carole was diagnosed with advanced breast cancer.

Mum had done nothing about the lump in her breast, until it was well and truly advanced, as she was totally disillusioned with the medical attention she had previously received on the Central Coast with other issues. Rightly or wrongly, her fear of what her circumstances may become if she went to a Doctor, prevented her seeking help, as she felt too vulnerable. Despite having help from her care givers to shower, apparently no one had become aware that this lump was a serious problem.

After  radiotherapy and a mastectomy on her right side, Carole returned to her own home and continued to live at home independently, with only five hours of in home care a week. No increase in care was offered by Hammond Care or ACAT to that which had been supplied previous to her operation and subsequent health issues.

Mum certainly was never your average run of the mill person. Her views were her own and not at times mainstream. But that was her right, to be herself. It is possible she suffered from a personality disorder to some extent, but she had still been able to live a very respectable life. Always polite in the extreme, very much a lady, in the best British traditions. However if Mum did not want to do something you would have a devil of a job persuading her otherwise. I witnessed that clash with the medical profession, who could not force her to bend to their opinions or wishes. With many people I know I have seen it is the medico’s way or the highway. You are meant to be a dumb sheep and be blindly and gratefully herded down the race in any direction they chose for you. When you are at your weakest and most vulnerable that is when they push you the hardest.

Mum 8.3.14

Mum March 2014 at home.

Even though Carole was struggling to cope, two ACAT assessments refused to upgrade her in home care package. As I live 2000 miles away, Mum had no other family and did not wish to relocate, it was certainly difficult for her to cope. However her wish was to remain at home if possible, to die in her own home where she had lived since the early 80’s when she moved there from Hong Kong.

Due to a longstanding spinal issue (scoliosis) and a severe previous episode of osteomyelitis, Mum had a significant addiction (noted in Brisbane Waters Private Hospital (BWPH) discharge record) to prescribed morphine (Oxy Contin) since 2004.

By 2015 the dose she was taking was 120 mgs per day, yet this was still not adequately controlling her pain. Between doses of morphine Mum was topping up on prescribed Panamax and Lyrica to control nerve pain. As the cancer progressed her pain became unbearable, yet she seemed unable to get anyone in the medical profession to take this seriously.

Before her booked admission to Brisbane Waters Private Hospital, Mum had an issue one evening with acute shortness of breath, this occurred whilst I was on the phone to her. I suggested she call and ambulance before the problem escalated. That night she did so and was re admitted to Gosford Public Hospital (15th July 2015). From what I have been told by Mum and her then Doctor Ajeet Sidhu (20th July 2015)  who treated her at GPH, they did a full body scan to see if the cancer had spread. I was told by Dr Sidhu that there were no signs of metastasis in the brain, bones or major organs.

Doctor Sidhu was very pleasant & professional. He made several efforts to contact me to discuss with me, as next of kin, his findings with my mother & her prognosis. As it appeared that Mum may have another year to live we decided to look at bringing her to live with me. At this time I asked for Dr Lipski who Mum was admitted under to send Mum’s full medical records to Dr Mary Collins at the Forrest Family Practice in Bunbury who is a friend of mine and would be Mum’s Dr if and when we moved her here to WA. I also requested that Mum’s GP Dr Colin Massie send his records. To this day the medical records have never been released to me or a Doctor of my choice. I had EPA and was Carol’s guardian, as such I had  the right to request these documents.

The day she was being released from GPH, Mum told me that the  “growth” on her head was very sore but no one at the hospital had looked at it, also her ring finger had been an issue for some months and that she would like that looked at, as her GP seemed not to be concerned with either problem.

I rang the ward nurse to ask about these two issues, which had been ongoing for some months at that stage. This nurse was very unpleasant, annoyed and  officious and told me in no uncertain terms that as they had concluded my mothers “investigations” and she was going home the next day. They were not about to look at any new issues. I asked if the growth on her head might be a cancer, she said she did not know. I said, “wouldn’t a hospital be the right place to have someone look at it ?” The nurse cut me short. I then said ” So what, you are just going to ignore this and send her home to die?”  I was then informed that I was being needlessly melodramatic. Clearly as it was only Mum’s pain, this woman could not care less. It was not the hospitals problem anymore as she was being discharged !

Mum was sent back home (24th July 2015). Nothing changed. The growth on her head continued to grow, the finger went black and bent, the nail began to separate from her finger, but no one did a thing about it. Within a short space of time the growth on Mum’s head dramatically increased in size, becoming very painful. Other things appeared to be happening that concerned me, but her Doctors and the hospitals seemed unconcerned. Mum complained of pain behind her eye, saying that her cheek felt numb and her jaw felt slightly out of place. On discharge from the hospital she had a protruding eye on her right side, a swollen cheek bone and yellow green pus coming from her right nostril. Mum could not feel the fact that this discharge was happeneing. It must have been very frightening and painful for this 83 year old lady. By now she was also saying that nodules were appearing across her chest and on her arms. On top of this she was experiencing excruciating cramps in both legs, mainly at night. Urgent urination every hour or less. She could get no quality sleep.

Not long after this, a minor fall at home one Sunday evening caused Mum to call an ambulance, taking her back to GPH. (around 4th August) To be honest, I believe this was purely and simply a cry for help, from a dying and frightened woman, with very little support. As she was booked to go into Brisbane Waters Private Hospital on the Monday, she was then transferred there on the Tuesday.Mum

Regressing somewhat – Around 2004/5 my mother had had a major clash of personalities with a well known gerontologist who was then based at Gosford Public Hospital. Mum had been admitted for osteomyelitis. I had flown over from Perth one weekend to see Mum, meet with that Dr  to find out exactly what Mum’s issues were and  her prognosis for long term, full recovery. I sat & waited at GPH for six hours to see Dr L, eventually he sent down a message saying he was far too busy to see me!  I formed my opinion of his attitudes then, so was not at all surprised my mother would not tolerate him treating her again. In light of this, I had requested to Mum’s current case manager, Leanne Crawford at Hammond Care, that if Mum was to go into hospital that Dr L not be her Doctor. That just made sense!

On admission to BWPH, my mother’s Doctor was no less than the very same Dr L. This man apparently (so I was told by several nurses, a Dr and my mother) immediately cut her medication from 40mgs of morphine three times per day (120mgs)  to 20mgs once per day. His rationale was that her high dose of medication was making her irrational and confused ! Clearly in his opinion, making her go “cold turkey” should improve her state of mind.  Not surprisingly, that night mum kept the ward awake pressing the buzzer and calling out in pain and distress. The following day Dr L offered her a morphine injection, which my mother declined as she did not trust him, but told him so in front of his intern. That appears to have been the tipping point for her problems. One can only deduct that Dr L was suffering  with an ego that was badly bruised. My mother told Dr L that she did not want him as her Doctor and had never at any stage agreed to be treated by him.

As a private health care patient with top hospital, top extras, I believe she was entitled to that choice of a Doctor.

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Mum & Tom

My mother requested, not unreasonably, to be put back on her regular medication not a generic brand and at the dose she was normally taking. Dr L refused to reinstate her regular drug regime, on the basis that he felt a reduction of her morphine would improve her mental acuity. For the next few days Dr L left mum screaming out in pain and in severe distress, disrupting everyone. Constantly pushing the buzzer trying to get someone to help her. In Dr L terms she was displaying “challenging behaviour”. If I am not mistaken most drug addicts who go “cold Turkey” exhibit challenging behaviours, don’t they. That is what happens !!! This Dr denies access to a drug that patient is documented as being addicted to for over a decade. Has he not himself created the perfect scenario for this exhibition of challenging behaviour ?

One night Mum had been pushing the buzzer to go to the toilet and no one came. It was a cold night, she wet the bed. By the time a nurse came it was too late. Mum asked that the bed be changed but the nurse told her she would have to wait until morning. A cold night sleeping in your own urine.

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Mum & Tom in Hong Kong

Very acceptable. NO!

This was an 83 year old, 40kg woman, dying of advanced breast cancer! Was there any point in putting her through this needless torture? Was the medication she wanted returned to her really going to adversely affect her health ? If this is the treatment the medical profession will argue is a better option than voluntary euthanasia (EXIT), all I can say is God help all of us, because this was barbaric treatment by anyone’s reckoning.

Whilst in BWPH they did more scans or X rays. (about 6th August). On Friday 7th August,  Dr Bruce Stevens from Brisbane Waters Private Hospital, explained to me that Mum’s X rays (done there) showed she has extensive untreatable metastatic cancer which was over her head, chest, arms and in her lungs. That in all likelihood her life expectancy would be around three months  but it could easily be quicker as she was so frail (40kgs).   So from one hospital to another two pretty conflicting diagnosis only days apart.

Dr Stevens was excellent and after talking to Mum rang me back and told me that he would arrange to reinstate her Oxy Contin at her regular dose as there was no benefit to be gained by not doing so, as she was clearly dying anyway. Palliative Care was the only concern now. I also at that time spoke with Janis Livingstone a nurse at BWPH who was also fantastic and could not have been more compassionate or helpful. These two people were the only people who went out of their way to rectify the situation. I doubt they did themselves any favours by doing so.

One night (11th or 12th Aug?) Mum rang me saying she could stand it no longer, she was going to call the Police as she felt she was being abused. Which basically was the truth of the matter. I was concerned as to how this may unfold, so I rang the hospital. I spoke to Cameron, the nurse in charge of Mum’s ward. I told him that I was concerned that Mum was going to phone the police, that he may wish to address her issues before it all escalated into an unpleasant situation.

Cameron’s response to me, was to say he did not know why I even bothered to ring Mum as she was a total pain to deal with. That she would not stop pushing the buzzer and calling out all night. That he was “well over her”. Cameron told me that he had moved her to a bed by the window, so that when she rang the buzzer he could walk down the corridor and see her reflection in the window. As long as she was alive, that was all he needed to know.

I knew then that the things Mum had been telling me about her treatment, were more than likely the truth and not an exaggeration.

I booked a flight to Sydney, to try and put in place better care for Mum. I was looking at bringing her home to WA with me. I requested that Dr L send my mother’s full and unabridged medical records to both her GP in Wamberal and my friend who is a GP in WA, as she would be Mum’s GP going forward. Neither BWPH nor DR L ever forwarded any medical records at all. Nor acknowledged my request, despite the fact that I had EPA and EG and was entitled to request the records.

At this time Hammond Care & BWPH were pushing for the State to be appointed as Mum’s legal Guardian and Power of Attorney. In 2005 a solicitor Greg Berry had drawn up Enduring Guardianship and Enduring Power of Attorney documents which Mum and I had both signed. By 2015 Mum had been unable to find the original documents, so we decided that Greg should attend her at BWPH and redraw both documents. This he did. Greg Berry had known Mum for well over a decade. As an ex Police Officer and a lawyer he told me that in his opinion, Mum knew exactly what she was saying and doing the day he visited her. Yet the very next day Dr L declared mum “not of sound mind” and requested that she be sent to a locked psycho geriatric hospital as a risk of absconding. I was told this by Margaret the Discharge Officer when she rang me on the 14th August at 3.30pm EST.

I had booked my flight to Sydney on 16th August with my friend Rosemary. Rosemary works in crisis care and is a registered nurse. We attended St Hilda’s school in WA together in the 60/70’s. Mum taught Rosemary to drive. In short, Rosemary had known Mum for many years. Was qualified to care for her and assess her situation and needs. All was in place.

On the 14th August at 1.30pm Perth time (3.30pm EST), a woman identifying herself as Margaret, the Discharge Officer at BWPH, rang me to tell me that Dr L had requested that Mum be discharged immediately and sent to a locked psycho – geriatric care facility, as a high risk of absconding. I said to Margaret, that as it was now late Friday and Mum was in a Private Hospital on full private health cover with HCF. In light of the fact that I was flying into Sydney at 10.30pm on 16th (Sun) and would collect Mum then and take her home, I strongly requested that she not be moved. I had EPA & EG to enforce that request, or so I believed.

Margaret then told me that Dr L said that Mum had to leave the hospital, as she was no longer a medical patient and was “exhibiting challenging behaviours”. I told Margaret that I would ring my friend Rosemary who is a nurse, ask her thoughts on what should happen, then ring Margaret back. Margaret then asked me how long before I rang back ? I told her that I had no idea if Rosemary was at work, if she was, it may not be possible for me to speak with her immediately, but worst case scenario I would get back to Margaret by Saturday morning at 9am. Margaret then informed me, I had 30 minutes to find somewhere else to put Mum (or she would be moved to a place of their choice) then I was to let her know, as she went home at 4pm EST.

Later that afternoon, I rang to speak to Mum and was put onto Janis Livingstone. I explained the situation to her, as well as making her aware of Cameron’s treatment of Mum. It turned out that Cameron was an agency nurse. Janis was very caring, most helpful and asked that I immediately send her an email stating that as Mum’s Guardian I requested that she not be moved. That I would collect Mum from BWPH on Sunday night. Janis said she would do all in her power to prevent any transfer from happening. I then spoke with Mum, told her all would be OK, that I would collect her late Sunday night and take her back to her home. Just to sit tight.

I did not dream for one minute that a hospital would do what they did, to an elderly dying patient with full private health care cover.

I rang BWPH to speak to Mum on Saturday morning, only to be told she was no longer there. No one could or would tell me where she had been sent. I was needless to say pretty upset by that state of affairs. On arrival in Sydney I rang the hospital again, only to be told that Mum was moved to Toukley Age Care Facility on Friday afternoon, totally against my wishes and my mother’s.

On Monday Rosemary and I drove to Toukley. To put it mildly we were horrified at what we found. A very old, very shabby property.

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Mum’s home at Terrigal

My mother was a “lady” in every sense of the word, who has been fortunate enough to live a  privileged life,  5 star all the way !

Despite being old and unwell her home was immaculate well organised and tidy.

Consider this… Mum, highly vulnerable, desperately unwell, in immense pain, at 83 years of age, weeks away from dying, with no one there to protect her from this kind of abuse, was “dumped” at the behest of Dr L  and the hospital who were meant to be “caring” for her, in a totally inappropriate facility.

Judge for yourself. Look at the link below, a video that we took on the Monday 17th August 2015 at Toukley, the facility my mother was taken away to. This is a locked ward, care facility for people with mental illness. The rooms are tiny and shared with no privacy at all. My mother could not walk unassisted, yet was condemned to a locked ward as a “risk of absconding” ! How totally absurd. She could not have crawled out of there if she wanted to. This place was dirty, noisy and many of the staff were big men with tattoo’s wearing brickies labourer shorts. These men, according to Mum were getting right in her face and shouting at her to stop ringing the buzzer. We have two more videos showing Toukley.

Let’s get one thing in our heads here. My mother is not a woman who is use to being handled by men to go to shower or toilet. That situation should never have been inflicted on her. My mother has never been forced in close proximity of people like those unfortunate enough to find themselves at Toukley. To say she was totally over whelmed and intimidated by the experience is a dramatic understatement. The five days she was forced to endure at Toukley broke her completely. Watch this video Listen to the desperation in Mum’s voice, when she sees I have come to get her out of there and calls out my name.

Hammond Care and BWPH both believed that Mum was alone. By committing her to a locked mental facility (One Flew Over the Cuckoo’s Nest) Dr L  expected he had thrown away the key & repaid her for her distrust of him.

People who have no family living close by to protect them are clearly open to having this type of behaviour perpetrated on them by Doctors and Hospitals.

Picture this if you will. You are living at home, a privilege you have fought hard for. You are independent, your house is clean, your bills are paid, you know where all your “things” are in that house. You have top health insurance in place to make sure you are well cared for if your health fails you. Due to a small fall you need to call an ambulance and are admitted to hospital. The Dr you explicitly stated you did not want, forces you off your medication that you are addicted to. You can do nothing to remedy this, apart from discharge yourself. Once in “cold turkey withdrawal” caused by  Dr L deliberately depriving you of a drug you have a decade long addiction to, you behave in the only way you can to try and have your pain relief re instated. This Dr is in total control now. In days you go from being autonomous, to being totally at his mercy. What mercy ? You humiliate him, so he declares you of unsound mind and condemns you to a locked ward. All this, knowing full well that if you are alone you have no way that you can get yourself out of a locked ward. Very lucky for Mum that Rosemary and I arrived quickly, or she would have surely died in Toukley !

Kitchen Lounge Rumpus

Before we arrived in Terrigal we had organised to meet Mum’s case manager Leanne Crawford from Hammond Care and her superior, at Mum’s GP Colin Massey’s Wamberal Surgery on Monday morning, to discuss Mum’s ongoing needs. Leanne had assured us that she would give Rosemary and I all the support or help required to make sure Mum had what she needed when she came home from Toukley. Little did we know that she was only talking the talk with no intention of ever walking the walk. The minute we met these two ladies, Rosemary and I noticed that once we entered discussion with the GP there were many sly sideways glances and smirks exchanged between the two of them. We were both picking up some pretty bad vibes, they proved to be very well founded. In reality HC were totally opposed to Mum ever returning home and made that effort as impossible to achieve as they could. The minute we walked out of that Doctors surgery, Hammond Care simply cut and ran. We never saw or heard from them ever again. So much for the hollow words of care and concern. They talked it up, but failed to deliver on any level once we were in Sydney.

On the Monday we visited Toukley, to organise getting Mum out on Tuesday. The people at Toukley were not at all happy about letting Mum go, as they had been told she was now a permanent resident, as you can hear on the video clip. I was given a statement of assets to fill in, as Toukley wanted their fair share of any of Mum’s assets !

I told them I would collect Mum tomorrow and pay cash for the five days respite which was almost $500. I have never felt so dreadful as I did driving away from there and leaving Mum behind. Such a sad sight as she was crying that we left her there, even though she knew we would be back for her tomorrow.

I had a great degree of emotional and legal pressure heaped on me NOT to remove Mum from Toukley or take her back to her own home. I was told in no uncertain terms, that as her legal guardian, IF I took her out of that facility against Doctor L’s orders, that I would be legally responsible for her welfare. That if she died within a month of me removing  her from “care” that I would find myself in a Coroners Court and the Death Certificate may not be signed. That I may then be held legally liable for her death or for failing in my “duty of care”. That was a very daunting prospect, exactly what they meant it to be ! But in all honesty, I felt I would be in greater breach of my “responsibility for her welfare” if I had abandoned her to her fate at Toukely.

In all conscience I would not leave a dead hampster there!

Escape from Toukley.

After Rosemary and I visited my Mum in Toukley, we went home to prepare the house for her to come home the next morning. Getting appetising food, rearranging her bedroom so she could reach things easily, getting  a commode in situ. Getting a buzzer for her, so if she needed any help she could notify us easily.

We set off early, when we arrived in Toukley Mum was not in her room. The bed was made and she was apparently in the shower. Eventually she was wheeled back in a big lay back wheel chair. As you will have seen in the video in Chapter One she was pretty well beside herself with the situation she found herself in. The incessant noise in that place was simply excruciating. Mum’s bed was right beside the intersection in the corridor and next to the metal gate in the (Pool) fencing that enclosed the inmates. The door clanged and clattered every few minutes as no one made any attempt to close it it quietly, it just crashed and banged. Staff congregated there to chat. There was a buzzer going off every few seconds and in general it would have been impossible to rest at that place.

When mum left her home to go into hospital she could walk with the aid of a frame. But since she had been deprived of her drugs and forced into withdrawal by Dr L, she apparently had lost the ability to walk. She had barely eaten anything for a week or more and was emaciated and gaunt.

We gathered her goods together, such as they were, I paid for her five day stay and collected the paperwork.  I knew Mum had taken cash with her into BWPH and that money should have accompanied her to Toukley. I received a handwritten account on a scrap of paper from Toukey. I knew there should have been more cash from what Mum had told me on the phone. They had noted Leanne the Hammond Care lady had taken $1000 cash to pay Mum’s lawyer Greg Berry.

There were also three receipts from BWPH, but the dates make no sense combined with the numbers on these receipts.

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Not long after, I received an account from Greg Berry’s Coastal Mobile Legal Services. I rang to query it, as I understood $1000 cash had been taken by Leane from Mum’s money to pay him, when he attended Mum in BWPH.  Turned out that the account was never paid. Greg told me that it was the first time his name had been used as a cover for theft! Because it was cash and difficult to prove, I had little choice but to accept the money was gone.

We then bundled Mum into the hire car for the trip home. I have never seen anyone so relieved to be driven away from a place. Her relief was palpable when we swung into the drive way of her home.

Once tucked up in her own clean comfortable bed she relaxed a bit and seemed quite settled.Mum Aug 2015

She knew that she was now safe and had people to protect her.

As Rosemary and I were only able to stay in Sydney for ten days, we had to try and find a five star retirement home for Mum if she could not stay at home.

Hammond Care had absolved themselves of any responsibility towards her, they “cut and ran” the day we arrived in NSW. That meant the five hours a week help that she had for several years, was no longer available to her.

Their explanation for this was that in their opinion she required 24 hour care to live at home. So why were they only giving her five hours a week if this was true ?

ACAT would not upgrade her in home package as they said she was not infirm enough. Not what Hammond Care were saying.

Yet once Dr L wanted her committed to Toukley, ACAT happily signed her off as high dependency, but only for residential care NOT for in home care, which they could have easily done.

Dr L wanted her to be residential care, locked ward as a risk of absconding, yet after his ministrations she could no longer walk unassisted, even with a frame.  Even an imbecile could figure out that if Mum was at home, where she wanted to be, she would not be a risk of absconding to anywhere. All she wanted was sensible care and attention  from Doctors and hospitals who were meant to be helping her.

As far as I could see the reason this was not happening was because my mother had a mind of her own. Was intelligent and well informed. Mum would not blindly listen to Doctors and believe that the course of action they prescribed for her, was the right way, the only way or indeed the way she wanted to go.

That IS a right that every person has !  Or so I thought.

To decide what if any treatment, they wish to have. Because Doctors could not force Mum to accept the treatment they wanted her to have, they took a very strong stance against her. I will go so far as to say they tried to make her life impossible, unless she bent to their wishes.

I have been witness to that type of behaviour on many occasions, with friends of mine who experienced medical issues. They are put in a position whereby they are forced to follow the Doctors orders or else !

Right at the start Mum did not want a mastectomy. Her rationale was that at then 82 years of age her days were numbered anyway. So why put herself through that painful operation and all the emotional stress involved, as it was not going to save her life. Mum had no intention of ever having chemotherapy and knew that the cancer would kill her. Quite a few Doctors gave her information including two very patient friends of mine Dr David Baker and Dr Mary Collins spent a lot of time trying to present arguments for and against a mastectomy or other treatments that may be available. Mum would not budge and did not want the operation. Hammond Care talked to her a lot and explained how unpleasant it might become if the cancer fungated and became a treatment issue with smell and seepage. Still Mum did not want an operation. Eventually I think she became more worried about the risk Hammond Care deserting her if the fungating issue became a problem for them, so she decided to have the mastectomy. Mum certainly felt emotionally blackmailed into the operation, she definitely did not want to go through with it.

The tumour was now very large, she required radio therapy to shrink it before she could have a mastectomy. Mum lump Sept 2014The operation went as well as could be expected, but Mum was very negative about it. Right from the day of the operation she believed that it had not gone well. That she was, in her words, “chopped up and thrown to the dogs”.

Mum never regained strength or good use of her right arm and was in increased pain from the surgery and probable nerve damage. This was exactly the scenario she had tried so hard to avoid, as she just wanted to peacefully live out the rest of her life.

Once the operation was done, no one seemed to pay much attention to her complaints. Any issues she had, seemed to be brushed under the table and trivialised.

By the time we retrieved her from Toukley it was very clear to Rosemary and I that Mum had some serious “other” issues going on that had not even been looked at on her numerous trips to both Gosford Public and Brisbane Waters Private Hospitals. Quite a large number of Doctors and nurses had attended her, yet no one had enough professionalism or compassion to address the fact that she was complaining of a very sore mouth. This made it hard for her to eat. The day we took her home from Toukley we gave her a bowl to clean her teeth with (her own teeth, not false teeth) to Rosemary’s dismay Mum’s gums bled profusely and would not stop. Apparently this had been an ongoing problem for some time,  but no one had done anything about it. A 40 kilo malnourished woman complains of a sore mouth that is preventing her eating. Why would that be a problem ?

The next obvious set of issues was that Mum’s nose was continually running mucous. She was unaware of the sensation of it as the right side of her face was numb. It was hard for her to breathe through that nostril, she was using a Vicks inhaler to try and clear it.  Mum had complained to her GP, as well as at both hospitals, that her right eye was very painful especially if she tried to look up. That her face was numb on one side, that the cheek bone on the other side was swollen and sore, her jaw seemed to be displaced to one side.

The day we brought her home her right eye was protruding and the pupil was much smaller than that in the left eye and did not react to light in the same manner. The nasal discharge was thick, purulent and non stop. Her cheek was painful and clearly a different shape to the other side. Rosemary thought possibly a sinus infection. As the eye was directly below the primary growth on Mum’s head, I suspected  that  a cancer may be pushing her eye forward. Add possible longstanding sinus infection with a possible growth pushing the eye forward, you can imagine the pain that would cause. But no Doctors seemed to care about it. In fact as I mentioned earlier in this story the ward nurse at Gosford Public Hospital told me not to be melodramatic for asking that these issues be addressed before they discharged Mum. Unconscionable in my opinion. This woman was in acute pain. She had TOP PRIVATE HEALTH COVER !

Dying at Home.

Mum at Party

Mum in black dress.

Once home from Toukley, thanks to that fact that Hammond Care just simply walked out on Mum the day Rosemary and I arrived in NSW, we had no option other than to leave Mum at home with no one to help her. We had to go and try to find a quality care facility to leave her in, when we returned to WA. We had only one week of working days to achieve that end.

When Mum came home from Toukely she had barely eaten anything for weeks and was 40 kilos. By the Thursday she was eating  quite well, even had Rosemary and I drive miles to her favourite fish and chip shop for her. We were actually thinking she may see Xmas if she kept improving with the good quality care she now had in place.

Perhaps if ACAT and Hammond Care had been a little more diligent in the past five years, Mum would not have been as fragile as she was. Because she was determined to stay at home, but they would have by far preferred she went into one of their facilities, whereby they receive and inordinately large sum of money deduced by the value of your property. Mum was having non of that. You can pay over $600,000 bond to get into a good facility and $250,000 to get into the likes of Toukley. Looking at it, I would have thought $250,000 would have bought Toukley freehold ! Then you pay a minimum of just shy of $100/day no matter if you are in a 5 star, or a 0 star facility. Any extras, cost extra. So magazines, flowers, trips, read anything extra, costs extra.

I ran a dog kennel and cattery that was better appointed than Toukley !!! I would not leave one of my Collies at Toukley nor at Gosford Public Hospital when I visited there in 2005. That is damn frightening really.

So our initial daily routine was to give Mum breakfast, set her up in bed with snacks, lunch a thermos of tea, water, lemonade and her medication on a table beside her. We had no options available to us. We started looking on the Monday afternoon by Wednesday we had visited so many places and made numerous phone calls, all to no effect. Every where that was of a reasonable standard was full. Waiting lists everywhere.

I rang to try and get Mum into respite care, only to be told that as I had flown over from WA, I was not really considered as her carer, so she was not eligible for respite.

All day Thursday was a repeat, we drove hundred of kilometres and we were getting absolutely no where. We only had two working days left before we had to go back to WA. I decided that we needed to switch to Plan B, which was to get in home care in place for Mum. Around 2pm that day we drove into a place called “Home Instead” run by Jasmine Hopcraft. What an amazing service they offer ! Within two hours she had a lady at Mum’s house who stayed with her until we arrived back home at around 6pm.

I set in place a care regime that I believed would adequately cover Mum for the time being, whilst we returned to WA. A carer would come to her at 9pm and stay all night until 7am. The next lady came at 10am until 1pm. The last shift would be 3.30 to 6.30pm. I felt this was a monumental step up in care for her, from the pathetic five hours per week that ACAT had allotted her with Hammond Care.

It is prohibitively expensive to provide this type of in home care, $3930 per week in fact. Obviously that does not include your general household expenses. You still need to pay the usual food, medical, rates, power, phone etc so it is pretty heavy. But that care was of the highest calibre. Provided by some beautifully well trained, professional, caring, compassionate ladies, who treated Mum with the utmost respect. I felt very comfortable going back to WA knowing Mum was in great hands.

On the Sunday I had organised for Mum’s GP to come to her house. I wanted him to address all the issues and questions she had, also to set in place Palliative Care. On the Saturday we sat with Mum and made a list of all her “issues” so that on Sunday nothing was missed. We discussed her wishes for her cremation and for her ashes to be returned to England.

On the Sunday her Doctor duly arrived. He kindly spent over an hour discussing and addressing all the problems. At long last Mum was put on antibiotics for the nasal discharge she has had for months. By Tuesday morning they had worked magic and the discharge was a mere watery trickle. Why had no  one done this weeks ago ? Mum had a large bedsore on her spine where her buttocks joined and it was desperately uncomfortable for her. We were given a script for a topical ointment to deal with that. For quite some time Mum had been unable to sleep well due to the pain, so a script for sleeping tablets was obtained. Really we should not have had to fly from Perth to Sydney to have these issues addressed in a timely manner, should we ?

By the time we flew home early on Tuesday morning, we were very comfortable that all bases had been covered.

Mum had an advanced health care directive in place, stating that she did not want any more treatment to prolong her life, no more operations or stressful procedures. All she wanted was adequate pain relief and to be allowed to die a dignified death at home.

I had not been back home in WA for 24 hours before I received a phone call from Home Again to say that the Palliative Care team from Gosford Hospital came to visit Mum on Wednesday morning, they called an ambulance and put her back into hospital with a suspected broken hip ! I asked if she had a fall after we left the day before. The answer was no. Palliative care were concerned that the pain in Mum’s hip was due to a fracture. Pain that she had been complaining of for over a year ! But no one acted or seemed to care then.

These were the emails from Home Again to me…

Both on 26th August 2015.

Hi Gail, the Palliative Care Dr has come in and wants to Carole to go to hospital – she believes she has a broken hip. She has called Dr Massey who concurred I believe?? They are trying to call you.

Jasmine Hopcraft. Director.

Hi Gail, from the feedback from my CG who was on when the Pal Care Dr visited today was that they did not agree with her being alone in her home at any time as she was a big falls risk. She did not fall during our services as the office would have been notified. I think in order for the hospital to allow her to return home and not be transported anywhere else you will need to assure them that you are engaging 24 hour care. She is being taken to Gosford Hospital. The Pal Care team did contact Dr Massey and he called the ambulance. The ambulance is taking her now (4:15pm) to Gosford Hospital. The number for the hospital : (02) 4320 2111. Tomorrow I will contact the discharge team and see if I can find more info – I think however you will have a better chance of instructing them – followed up by a call from me.

Jasmine Hopcraft. Director.

 

These people from Palliative Care had never seen Mum before, but her GP  had gone over her from head to toe on Sunday and no new issues. Clearly not much liason goes on between the people involved with care. There was a health directive in place the GP knew that.

On Wednesday I rang Palliative Care at Gosford Hospital and asked why they had put Mum back in hospital, when her GP had been with her for over and hour only two days prior. There were no issues he was not aware of. Their answer was that she may was complaining of pain in her hip, that it may be broken. I asked what they intended to do in hospital that they could not do at home? Their answer was that if the xrays showed a fracture, they would like to carry out a hip replacement. I was just so totally blown away by that answer ! BUT only weeks before in Perth the same happened to my friend Rosemary’s 99 year old mother.

An 83 year old, frail woman in the very last weeks of her life, dying of cancer. This woman, my mother, had put in place all legal paperwork that she believed would protect her (EPA, EG & Advanced Health Care Directive) yet for the second time in as many weeks, a hospital was going to abuse its power over her treatment. Her medical directive clearly stated that she did NOT want any further operations or treatment other than adequate pain relief. There is only one possible reason that they would push to have a hip replacement done on her. In my opinion that was to give a junior surgeon his first experience at operating, with little consequences if the result was less than ideal.

As Mum’s guardian, I pointed out that she had a AHCD in place and that I did not believe it was in her best interest to put her through the stress and pain of a major operation at this stage of her life. An operation that would almost certainly shorten and diminish the quality of her last weeks of life. How dare they even suggest that !

Because I stated that I would refuse to allow them to carry out the operation on Mum’s hip , which as it turned out was not fractured in the first place, they put more hurdles in the way of me taking her home. AGAIN !

The deal now was that I was not allowed to take Mum back to her home, unless she had in place 24 hour round the clock live in care.

From my investigations during the week, of aged care facilities, the ratio of staff to patients at the very best facilities is one to thirteen at night and three to thirteen daytime shifts. So you can well imagine how much care each individual gets, no matter how pressing their needs are. As per ACAT’s assessment, Mum was high care (yet they would only offer her 5 hours a week at home) I was forced I assume by the government, to provide 24 hour a day care, one on one, if I wanted her at home, as per her wishes.

So with no other choice, I put in place through Home Instead 24 hour round  the clock care at a crippling cost of $8160 a week. This had to be in place before the hospital would allow her go home. Had the chain of events not been set in place by Dr L the gerontologist at BWPH I would not be looking at this financial burden. So in my eyes all blame for the entire situation Mum and I found ourselves facing lie entirely at his feet. May the fleas of a thousand camels invade his crotch !

I had contacted BWPH to complain about Dr L’s treatment of my mother and the fact that they did not fulfil their duty of care by placing my mother in a totally inappropriate sub standard facility. Patrice Blume promised that she and Kathy Beverley would address and act on this issue. To date (1.11.15) I have heard not one word back. Two days before Mum died Patrice offered Mum the best service that BWPH could offer. The best private room, with their most kind, compassionate Doctor. I declined. Too little, too late !

Jasmine Hopcraft. Director. Home Instead Senior Care. Ph: (02) 4342 3477

On Sep 2, 2015, at 5:33 PM, Lochwind <lochwind@bigpond.com> wrote:

Hi Jasmine,

you guys are absolutely amazing, in the best possible way. I really mean that from the bottom of my heart.

I had a call from Brisbane Waters Private Hospitals Director of Clinical Services, Patrice Blume today, as I had complained about Dr Lipsky’s treatment of Mum. They have offered Mum 5 star treatment immediately with their most caring Doctor, if I want to re admit her now. I said that at this stage I wanted to hold out as long as possible with her at home with Home Instead. That I felt the end was quite near now. They said should we need that in the coming weeks, the offer remained open to take her immediately as they were prepared to do today. So in the very unlikely event that Mum is still with us in a fortnight or month we now have an immediate placement.

That is a great relief, no doubt to both of us. 

Many Thanks again

Gail

Once at home we experienced a few other issues.

At this stage I would like to point out NON of the problems were caused by Home Instead but all by government bodies or hospital/medical staff.

Mum was having trouble at times breathing properly, that was causing her to have panic attacks. Mum requested that oxygen be made available to her to help with this. Her GP had said on the Sunday that he would arrange this through Palliative Care. BUT the PC lady rang me on Thursday to say they had measured the oxygen level in Mum’s room and it was fine, so she would not provide an oxygen bottle, unless I paid for it.

A few days later my mother died after many anxiety attacks caused by her inability to breathe properly.

Palliative Care we are told on TV, is there to make dying so much more bearable. It is always used as a foil to any argument on Voluntary Euthanasia. Well from what I have seen, just save your money, join EXIT or throw yourself under a bus, it would be a better ending. You have to fight for all you need to get from PC.

We are fed so many lies! We are like sheep following the herd. If you do not set in place mechanisms to protect yourself you may also suffer the same fate. Trouble is most of us including myself have little idea how to adequately protect ourselves.

COPIES OF EMAILS SENT REGARDING MUM.

13/8/15  email to BWPH (Janis Livingstone), requesting my mother not be moved from Brisbane Waters Private Hospital.

Hi Janis,

             as guardian and EPA for my mother Carole Kerr, I would by far prefer that she remain at BWPH until Monday the 17th August 2015, when I fly in from Western Australia with a registered crisis care  nurse. The hospital has been aware that  I fly in that day for nearly a week now. Cathy, one of the discharge officers rang me today, I was at the bank attempting to deal with my mother’s reverse mortgage issues. I returned her call at around 2pm Perth time, she advised me that BWPH were wanting my permission as Guardian to send my mother to Tookley where they had a locked Mental Ward. No other nursing homes were prepared to take my mother on the basis that Dr Lipsky has said she has early stages of dementia and is highly disruptive. I had less than 30 minutes to make that decision as Cathy was going home and needed to book the ambulance for tomorrow. If I did not make a decision in the prescribed time Mum would to be sent back to Gosford Public Hospital, where I was told she would not be cared for properly. Not a great situation ! 

                  In 2005 my mother was under Dr Lipsky, at Gosford Public Hospital.  I believe they had an ego clash then at Gosford Hospital. Mum subsequently did very well under Dr Simon Vesey, who was a lovely, compassionate  man who she trusted. I flew in from Perth and requested to see Dr Lipsky at that time. I waited six hours in the hospital only to be told that he was too busy to see me. This year I did tell other medical practitioners not to use Lipsky, as two narcissists together were guaranteed not to be  a good outcome. I have since heard about the results of that. 

                Undoubtedly my Mother is narcissistic and difficult, but that is not age, illness or dementia related. My mother has had a personality disorder all of my life. That does not make her a candidate to be written off as insane or demented. I feel that as a person who has paid top private hospital cover at least since 1970, Mum has the right to expect top quality health care from compassionate, caring people. One nurse told me last week that they moved my mother near a window as she was being annoying and that he could then walk down the hallway and see her reflection in the window. If she was sitting and alive that was all he needed to know. That is enough to make me want to drop private health cover ! 

                  As her guardian, under the BWPH duty of care, my preference is that she remains at BWPH until we arrive on Monday 17th Aug. That Dr Lipsky does not go anywhere near her. My preference is that Leanne Crawford (Hammond Care) Dr Bruce Stevens and Janis Livingstone are the only senior staff that have an input into my mothers care, as they are the only people who have convinced me they have her best interests at heart. 

                  Lipsky, the consummate professional, has not even bothered to speak to me about my mother’s terminal condition, yet I am  Mum’s only next of kin in the country. That says a great deal about the man’s compassion in my opinion. I request a face to face meeting with Lipsky in the time I am in NSW 17th to 14th August. He has the opportunity to put his views. 

Regards

Gail Jones

14/8/2015 email to BWPH asking for an appointment with Dr Lipski and for Mum’s records.

Hi Janis,

              have been speaking extensively last night (since we spoke) and this morning, with several friends who are Doctors and Specialists in Bunbury, regarding what may be possible, if I bring Mum back to WA (If that is what she wants).  

Would you please ask either Margaret or Cathy the discharge officers, to have Dr Lipsky send all Mother’s medical history and Xrays, scans etc along with a summary & his prognosis. Also advise Mary as to who is Mother’s Palliative Care Specialist  to … 

Dr Mary Collins. Forrest Family Practice. 122 Spencer Street, BUNBURY. 6230. Western Australia. Ph:0897915175 

           Perhaps they might be kind enough to book a 15 minute appointment with Dr Lipsky (between Wednesday 19th and Monday 24t Aug) who might be good enough to explain to me in person what Mother’s extensive issues are, so that I am aware of what I will need to address for her with regard to ongoing  palliative care.  

             Hopefully I will catch up with you and Dr Stevens in person whilst I am at the hospital. Could you also please tell me how I get Gosford Public Hospital to forward all the information they have on my mother as they also did bone scans etc. 

Many Thanks

Gail

15/8/15 email to BWPH again requesting medical records ) Full & unabridged.

1/9/15 email to BWPH again asking for medical records. No response to any email. I advised that I was going to complain to the AMA.

Phone call from a lady identifying herself as Patrice Blume offering Mum a private room with their best most compassionate Doctor. I declined.

I was told that if I sent an official written complaint to Patrice Blume and Kathy Beverley the CEO of BWPH that they would act on the complaint

1/9/15 Email to Lipsky – Never acknowledged.

From: Lochwind [mailto:lochwind@bigpond.com] Sent: 01 September 2015 16:24 To:marian@plipskigerimed.comSubject: Medical Report please  -Attention Dr Lipsky

I have repeatedly requested to Brisbane Waters Private Hospital and also to Dr Colin Massie that you immediately forward the full and unabridged medical records of my mother, Mrs Carol Kerr of 80 Bradleys Road, Terrigal. NSW.

To Dr Mary Collins. Forrest Family Practice. 122 Spencer Street, Bunbury. 6230. WA. Email: rinus@westnet.com.au

It is now some weeks later, still you have ignored these requests. Please find time to forward these records to Mary Collins this week, or I will be left no option but to look into what actions are available to me with regard to your behaviour.

I had a similar experience with you through Gosford Public Hospital in 2005.  Mum was admitted with osteo myelitis. I flew from WA to NSW for two days. I requested to see you for you to explain mum’s condition and prognosis. You kept me waiting for six hours and then sent down a message that you were too busy to see me ! The next day Dr Vesey was good enough to make time to see me and explain.

On the 14th of August this year, I requested the transfer of my mother’s medical records, at the time you elected to send my mother to the very sub standard Toukley age care facility. Mum was at your behest placed in a totally inappropriate locked  psycho geriatric ward. To say I am unimpressed is a gross understatement. An elderly woman in withdrawal, signed off as dementia, throw away the key. No one who has seen her since her release from Toukely has any doubt, that now back on her full medication  she does not display with dementia, as such. Her behaviour now is well in line with her behaviour in 1970.

If you care to read a victim impact statement from me, this goes close.     As I am sure you would be aware, I was given thirty minutes, apparently on your instructions, to decide what to do with my mother by your discharge officer Margaret. This was late on Friday afternoon. I was arriving from Perth on the Sunday midnight flight and told the hospital, I would collect Mum on Monday morning. Not to move her under any circumstances unless they sent her home. I emailed Janis Livingstone to that effect that night. My mother has top hospital benefits in place, has had for decades. Yet in spite of that fact, you could not keep her for two more days, because she was exhibiting challenging behaviours! We now have evidence of why that situation occurred. Cold Turkey. A drug addict with a decade long Oxy Contin dependency. Significantly reduce that dose and you have a person with serious withdrawal symptom and in acute pain. Little wonder she behaved as she did. We have all seen the behaviour exhibited by Ice addicts in withdrawal. 120 mgs per day for years, you drop her to 20mgs a day. What behaviour would you expect to see ?

The shock of being put in Toukley totally broke my mother mentally and emotionally. Mum has been accustomed to five star luxury all her life, to put her in a place with old men wandering into her room hanging over her bed and begging and drooling is NOT acceptable. Nor is being man handled by big men with tattoos. We do have it all on video. Intimidating men getting in her face and screaming at her to stop ringing the bell. I think they call that elder abuse. Without a shadow of doubt it has shortened and diminished what is left of her life.

To realise that one day you can be at home with just five hours a week of in home help, then you fall and call an ambulance. The sequence of events sees you committed to a locked ward. If Mum had not had me to advocate for her, she would have had no way to get herself out of Tookley, she would have died in that dreadful place in misery. That to me is an abuse of power. You withdrew any autonomy my mother had when she arrived at the hospital and forced your authority on a defenceless patient with detrimental effect. It makes a total mockery out of private health care and the caring medical profession we blindly believe will look after our best interests when we are old and vulnerable. Yet we blindly do “the right thing” and pay high fees for private health care insurance.

All this has now left me in a unenviable position, that as her legal guardian I could not in all conscience leave her in such a dreadful facility, so had no choice at all but to remove her from the place you consigned her to. That chain of events means I am now forced to pay over $7000 a week to Home Instead for in home care. Had you not acted in the manner that you did, this situation would not have occurred to her or me.

Examine your conscience, would you like a member of your family treated in this grossly unfair manner.

My ten days in Sydney dealing with this issues makes me realise that Dr Phillip Nitschke has it 100% right, not the medical profession and drug companies. Any confidence I had in the medical system has evaporated totally after seeing what you could do to my mother.

I feel this dreadful state of affairs need to see the light of day.

Regards

Gail Jones

15/9/15 Complaint sent to BWPH.

Date: 8 September 2015 9:39:33 pm AEST To:patrice.blume@heathecare.com.au” <patrice.blume@heathecare.com.au> Subject: Lipski’s complaint re Mrs Carole Kerr

For the attention of Patrice Blume & Kathy Beverley. Brisbane Waters Private Hospital.

Re complaint about Peter Lipski’s treatment of my mother. July/August 2015.

As you can see I sent this email below to Lipski’s nine days ago, but in his arrogance he has deigned not to acknowledge receipt of same. Nor sent requested records.

My mother has since Lipski’s treatments and decisions on her welfare, passed away.

I have no doubt the quality of her life was greatly diminished and her demise was contributed to and hastened by, the sharp reduction (ordered by Lipski) to her regular dose of OxyContin as prescribed for her by her GP, Dr Colin Massie.

Also her placement by your hospital, in a totally inappropriate facility, when as a private HCF health cover patient, she could have safely stayed a mere two more days with you, or been sent home with care, late Friday, as I was due to arrive at midnight Sunday. This elderly lady should have been having palliative care for her acute pain, not a dramatic reduction of pain relief, that her hospital notes say she was addicted to as far back as 2004.

As her guardian, I specifically requested that she NOT be sent to Toukley!

Janis Livingstone will have my email.

That sudden withdrawal of OxyContin no doubt caused her “challenging behaviour” displayed whilst at BWPH. Her constant calling out in pain at night & ringing the bell for help, went unheeded by staff until Dr Stevens & Janis Livingstone sensibly managed to have her normal quantity of OxyContin re instated. Dr Stevens told me that in his opinion Mum had little time left, probably weeks, which proved to be correct.

By then Lipski’s had signed her off as demented & suitable for a locked psycho-geriatric ward only, as in his opinion she was a risk of absconding. That is absolutely absurd in the extreme, as she could barely walk a few steps with assistance. This was a clear abuse of his power! This was a dying 84 year old woman, who had less than three weeks to live ! How dare he do that to her ? His moral & legal obligation was to “care” for her, in that respect he failed miserably. As far as I can ascertain quite deliberate actions on his part every step of the way.

A friend who came with me to Sydney to retrieve Mum from Toukley Aged Care Facility on 18th August, is a crisis & age care registered nurse with thirty years experience, Rosemary has also known Mum since 1970. Rosemary will attest that Mum showed little signs of dementia once back on her normal medication. Mum’s lawyer who visited her at your hospital, has known Mum since the early 80’s, says he would happily swear in court that Mum was of sound mind and in no different mental state than she was at any other time he had carried out work for her. The last time he visited Mum was one day before Lipski’s signed her off as demented. Did she really deteriorate that much in 24 hours ?

I will have no hesitation in reporting Lipski’s to the Medical Practitioners Board if he can offer no redress, explanation or apology for his incredibly callous behaviour.

I was amazed when one of the best age care facilities on the Central Coast, told us that Lipski’s goes into elderly, infirm patient’s rooms and orders “Stand for Doctor “, what pompous arrogance ! I asked that if Mum became a resident there, that they not let Lipski’s near her. Their reply was, that I would be surprised at how many families had asked them that. That in its self is a sad indictment on this man.

I would appreciate being informed of what if any action will be taken to remedy this, so no other elderly patients have to suffer at his hands, as my poor mother undoubtedly did in her last days.

Regards Gail Jones

15/9/15 email received from Patrice Blume stating that she would fully investigate.

Dear Gail,

Thank you for forwarding your correspondence as requested. Kathy and I will carry out the appropriate investigation of events outlined. Following this you will receive a letter detailing our findings and measures employed.

Once again, please accept our apologies for any inconvenience you have encountered in the care of your mother at Brisbane waters Private Hospital.We welcome your feedback and if we can be of any further assistance please do not hesitate to contact us.

Kindest regards,Patrice Blume Director of Clinical Services Brisbane Waters Private Hospital

21 Vidler Ave, Woy Woy NSW 2256 T +61 2 4343 0355  M +61 4 5959 9144  F +61 2 4342 7164 E Patrice.Blume@healthecare.com.au  W | facebook | twitter

Healthe Care Hospitals are accredited by ACHS NSQHS Standards or ACHS EQuIP National QIC Standards

GO TO “DYING WITH PALLIATIVE CARE” FOR ALL THE CARE GIVERS NOTES ON THE PROCESS OF MUM DYING.

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