Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697634983088.pdf (Australia)
A SUBMISSION TO A SENATE INQUIRY INTO VIOLENCE, ABUSE AND NEGLECT AGAINST PEOPLE WITH DISABILITY.

My name is Linda McGough.

I was a devoted carer for my beautiful Mother, Greta for ten years until she died, aged 91 years in a residential ‘care’ facility.

Greta was inflicted with the heinous disability, dementia.

I am 61 years old, a FIFO worker on the Wheatstone Project, Onslow WA.
I am getting my life back on track despite the horrific trauma that I was subjected to, with my horrendous personal experience of Aged Care in Australia.

The case submitted herein pertains to the neglect, abuse, emotional and physical trauma suffered by the frail and vulnerable elderly as perpetrated by the Aged Care System.

Equally culpable, by their inaction are the related Government Agencies and personnel.

More specifically it contains: 1.


My Mother, Greta, whose overall wellbeing was extremely adversely affected and compromised by the staff of two Residential Aged Care Facilities.

Her final months of life were a hell on earth as a direct result of the second facility’s ignorance, continued neglect and a deliberate, callous lack of care.

2.
2.

Myself, Greta’s daughter, primary family carer and advocate wherein I was abused by the practice of disempowerment, and our ultimate collective “punishment” was – Denial of Access to my Mother.

Please make note that Mr Rodney Lewis, a NSW solicitor and author of Elder Law in Australia has cited this case as being the worst he has ever come across.
It is clear that this is a matter of infinite complexity and cruelty; it is difficult to comprehend how a human being could experience such an horrendous end to her life – whilst “in care”.

What Greta had to endure was pitiless and devoid of any compassion.

We live in a developed country, in a purported democratic society where, tragically, there are NO human rights bestowed upon our elderly who have the misfortune to live in nursing homes.
Within this submission I have documented, not only all those Government Agencies involved, but also detailed, specific instances of abuse and neglect at the hands of the Residential Staff but will initially outline them in general terms:- 1.

Any well founded complaints or problems I presented to Staff members were, inevitably and always turned around to THEIR having a problem with ME.
I openly admit to have been a strong and persistent advocate for Greta and feel totally justified to have done so – for who else was there to defend such a vulnerable woman?

2.

The systemic failure to train staff adequately and appropriately created a culture of “family blaming” rather than one of learning and growing towards better care of the elderly, including my beautiful Greta.
Linda McGough – Page 1 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 3.

My knowledge and experience re-Greta’s dietary needs were neglected, undermined and/or ignored.

When I persisted, I was branded a “trouble maker”.


The collective “professional” ego of the Staff, was, quite clearly, more important to them than Greta’s well being and any pleasure in daily life.

Within the Aged Care System it is commonplace for Senior Staff and Executives to punish, whomever they choose for speaking out/complaining regardless of the legitimacy of said complaints.

In my case, the ultimate punishment was to be denied access to my Mum.
This despicable act of spite and cruelty affected not only me; Greta was sad, emotionally distraught and bewildered by my enforced absence, and on a more practical level, suffered from malnutrition as the Staff refused to take the requisite time to feed her.

That had always been my role – a fact they did not take into account when they chose to withhold my right to be with her.

4.
4.

In reality, and as I discovered throughout the past 7 years, there is NOWHERE and NO-ONE to whom one can turn when the system fails so abysmally.

For the system does not like “whistle-blowers” and will not protect, or assist those who issue complaints or reveal clear cases of unethical or inhumane administration – be it neglect, abuse (including disempowerment) or bullying.

5.
5.

Over the years, prior to and following Greta’s death, the cause of which was shrouded in secrecy, I have become stressed, worn out and wearied, depressed and anxious.

This, a direct result of the behaviour and reactions of the Residential Facilities associated agencies, Government Departments and Systems whose only intent was to disavow, refute and deny both my Mother and myself – our basic human rights.
I could write a lengthy litany of specific examples of the neglect, abuse and trauma Greta endured and which I was powerless to redress.

However, I shall confine it to a list of the more serious ones.

What follows is also a documented trail of horror describing how Government Agencies processed my complaints and subsequent appeals pertaining to health care issues and denial of access to be with my Mum in her final stage of life.
Please refer to Appendix 1 for a comprehensive list of those contacted in my pursuit of justice.

Please refer to Appendix 2 for summary of the horrendous experience.

Please refer to Appendix 3 – Dr Psychiatrist, Perth Clinic, West Perth.
Linda McGough – Page 2 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 Appendix 1 - Organisations and people contacted in my endeavour to find justice 1.
The Nurses and Midwives Board of Western Australia.

Now managed by AHPRA.

was/is the CEO/State Manager of AHPRA.

was The Director of Governance for the NWBWA.

2.

Koh I Noor Nursing Home/Civilian Maimed and Limbless Foundation/Paraplegic Quadriplegic, now Spine and Limb Association of WA.

Accreditation Number: 7870.


Admission date: 23rd April 2008 - Room 2.1 CEO, deceased, Director of Nursing: Registered Nurse: Clinical Nurse Manager: Aged Care Executive: Carer: The above six personnel attended a SAT hearing to have my Guardianship of Greta revoked, 19th October and 22nd October 2009.

KIN have a good balance of full time carers and when agency is required, carers who are placed for shifts, have generally worked at the home previously.
3 Complaints Investigation Scheme WA (CIS) Dept of Health Ageing (DoHA) Assistant State Manager WA: Case ID 091691 – Denial of Access Case ID 093277 – Health Care Issues, right hand and inflamed left eye Case ID 097267 – Call bell not working (I had been reprimanded for looking for staff, on occasions and not using the call bell (but it was not working).

4 Aged Care Commissioners Office: 1st May 2007 - 30th April 2010, 1st May 2010 – 4th January 2011.
There were appeals to The Aged Care Commissioners Office for all the above cases.

5 State Administrative Tribunal of WA (SAT) 6 Office of Public Advocate (OPA): and .

7 : Station Street Medical Centre, Subiaco.

fudged time of death on Death Certificate.

He phoned me when I was Guardian on one occasion to advise of a medical matter.

Later when my Guardianship had been removed, he hung up on two telephone conversations with me saying I had to speak with OPA, OPA said I must speak with Doctor.
Nurses said I had to speak with the Doctor......... Linda McGough – Page 4 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 8 CRS WA Case ID 063272 – Complaint – Hall & Prior, Hamersley Nursing Home 9 Hamersley Nursing Home (Hall & Prior Pty Ltd/Varna Pty Ltd/Fresh Fields Aged Care Pty Ltd/Hamersely Nursing Home Pty Ltd): Previous nursing home, also denied access because I exercised my right to make a complaint to the CIS WA.
I lost my temper over care provided to my Mum and false allegations made against me.

Five staff members applied to the Magistrates Court to have a Restraining Order made against me.

I have it in good authority that one was afraid of committing perjury and all six withdrew the applications.

I have transcript of initial court hearing and letter notifying the Court of their withdrawal on file.
10 CIS WA Case ID 067633 – Complaint - Hall & Prior, Hamersley Nursing Home 11 Aged Care Commissioner Appeal/Draft/Report - Case ID 067633 12 Federal Minister for Ageing: The Hon Justine Elliot.

I wrote to Ms Elliot on two occasions.

The initial response I received was not from Ms Elliot, but State Manager for CIS WA, Hamersley Nursing Home.

The second contact was regarding Koh I Noor Nursing Home.
; this was regarding 13 Advocare WA: “Older people should be able to live in dignity and security and be free of exploitation and physical or mental abuse”.

UN Principles for Older Persons.

Meeting dated 13th Oct 2009 - Gone beyond what was their capacity, and therefore could not help my Mum and I.

14 The Attorney General of WA: Office They suggested that I contact The Hon Justine Elliot and The Hon Nicola Roxon 15 DoHA (Legal section) Canberra: .

No response to my email.


I received a return email from ComLaw helpdesk providing me with a telephone number of the Administrating Department of the Aged Care Act and suggesting I speak directly with the legal section and was put through to recommended I put my concerns in writing.

who 16 Federal Minister for Health and Ageing: The Hon Nicola Roxon.

No response.

ALL THESE ENTITIES MUST BE MADE ACCOUNTABLE.

THEY ALL FAILED GRETA.


17 Worksafe WA: Letters from (Koh I Noor) and Hamersley Nursing Home) not contacted by nursing homes or CIS.

18 The Police Department of WA: FOI, no reports about me.

19 Perth Magistrates Court: Letter, dated 24th December 2009, confirming that there were no applications for a restraining order made against me by Koh I Noor.
Linda McGough – Page 5 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 20 The Hon Sue Ellery MLC (WA), (meeting dated 16th Oct 2009 at Parliament House, Perth): wrote on my behalf to the Federal Minister for Families, The Hon Jenny Macklin 21 Erin Brokovich: Consumer Advocate - No response 22 Shine Special Projects (represented David Hicks): Inundated with requests, couldn’t assist.
23 The Human Rights Commissioner: “This Commission has no power to investigate complaints of human rights breaches by any State Government or its agencies or by federally funded services, such as aged care facilities.

24 Maurice Blackburn (represented Dr Haneef, who had been wronged by the Government) No response.

25 Slater & Gordon: ‘No win, no fee’ Cost more to bring to trial than possible damages being awarded.
26 Slater & Gordon, ( ): Currently looking at a potential class action against The Commonwealth.

(This has since been cancelled) 27 MDS Legal: District Court of WA Action No: CIV 780 of 2013, dated 12th March 2013.

Withdrew writ/summons.

No case of this nature has ever been brought before the Courts in Australia.

My brother Karl, as executor withdrew, as financial risks were so high.

I wanted to continue but acknowledged that I may face financial ruin if I lost the case.
I am unable to face this possibility at this stage of my life.

28 , Solicitor, NSW: Author of ‘Elder Law in Australia’.

3rd Feb 2010.

He has cited my case as I initially made contact with being the worst he has ever come across.
has mentioned that the Government, could as easily, with the flick of a pen, amend Policy, which would specify that should there be conflict, that steps such as, mediation, conciliation and arbitration, by an independent body, be implemented to resolve matters without costly legal involvement, or worse, the involvement of such a statutory body as the Complaints Investigation Scheme who, in my opinion protect the interests of the nursing homes and certainly not the frail aged in our society.
29. , Psychiatrist, Perth Clinic, , West Perth, WA 6005 Linda McGough – Page 6 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 Summary – Appendix 2 My name is Linda McGough.

I am here as a voice for my Mum, Greta.


I was a devoted daughter and cared for her for ten years, initially in my own home until she was inflicted with the heinous disability, dementia, until she required more specialised residential aged care.

When I was a child, Greta would say to my siblings and I, that “all you wanted out of life, was a wee chat, a wee laugh and to be able to help people’.

I don’t believe one could wish for better values than that.
Greta’s generosity of spirit was acknowledged by all who came into contact with her.

I lost my beautiful Mum to dementia, I watched her ‘go away’, but saw the value in developing a new relationship with her, she was still my Mum and we had an unfathomable bond of love between us.

My story is the most complex imaginable.

It is extremely difficult to understand how a loved parent could have such an horrendous end to life.

The cruelty that Greta was forced to endure was pitiless and unimaginable.
We live in a developed country, in a supposed democratic society, where, tragically, there are no human rights available to our elderly who live in nursing homes.

Watching a loved one’s health decline is fraught with sadness.

I am a realist and acknowledge that this is our path towards end of life.

However, residential high care was a totally new and unexpected experience which turned into a nightmare.
What these service providers fail to realise is that families initiate their grieving process well before their loved one dies.

There is no support, no compassion; the aged care system is in crises.

She entered the first high care facility in 2006.

I had care concerns early in 2007 which I brought to the attention of the then Director of Nursing and these concerns were resolved professionally.

Further care concerns occurred following change of nursing management.
I complained to the governing body, The Department of Health and Ageing Complaints Resolution Scheme (CRS) - August 2007.

As a result of this, I experienced the highest level of organisational bullying imaginable.

Within a week, I received intimidating correspondence from the service provider.

I became emotional over the lack of care and eventually lost my temper December 2007.

I was denied access to see my Mum, February 2008.


Herein, my Mum was subjected to retribution by being denied the presence of her caring daughter.

It became untenable to have my Mum remain in this environment.

With the approval of the Public Advocate, there was a move to a new aged care facility in April 2008.
Linda McGough – Page 7 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 There were minor non-life threatening health care issues that were a concern to me that they were not being attended to, despite raising my concerns on many occasions.
As I had no faith in the CIS, I made a complaint to the Nurses and Midwives Board of WA.

Had the aged care facility professionally applied ‘Best Practice’, I would have had no need to make a complaint.

My complaints were not upheld and the level of aggression directed towards me by some of the nursing home staff escalated.

They applied to the State Administration Tribunal WA (SAT) for a review of my Guardianship Order.

My Mum was denied the comfort of my presence for the second time.
Her human rights were abused.

It is documented in the letter handed to me 12th Oct 2009 that my denial of access was to protect the interests of the nursing home, residents and staff.

As part of my appeal to the Aged Care Commissioner’s Office (ACC) I provided reports from the Police, Perth Magistrates Court and Worksafe.

These bodies had not been approached by the service provider to make any allegations about me, apply for a restraining order against me nor for Worksafe to investigate the allegations.
However, the ACC ignored my submissions and confirmed that my denial of access to see my Mum at the Nursing Home was appropriate.

The CIS and the ACC stated that they were satisfied that I was able to maintain a relationship with my Mother based on an allocated three, one hour visits a week, outlined in the ‘draconian conditions’ that I was compelled to sign and adhere to, or Greta would be subjected to further retribution by being denied the loving comfort from her daughter.
I specifically make reference, not only to the management of these homes but also to the bureaucratic personnel of the Dept of Health and Ageing which regulates nursing homes; Complaints Investigation Scheme, the Aged Care Commissioner’s Office, the Nurses and Midwives Board of WA, now APHRA, the SAT and the Office of Public Advocate.

I had been there for her every evening and weekend lunch to assist with her meals as she was resistant to being fed by carers; this had been documented many times.
I advocated for her health care needs as she was unable to do so herself.

I consider myself to be a respectful, helpful, caring, loving daughter.

By denying Greta my nurturing role which amongst other things included feeding her, was morally, ethically and above all, spiritually so very, very wrong.

There was no palliative care whatsoever (**refer to WHO definition on Palliative Care).
They lifted her in a hoist to be placed in a Regency chair to be brought to the sun room for my allocated three one hour visits a week.

This inhumane act was repeated right up to the day before she died; an unashamed case of neglect.

Greta lost approx 14kgs in the time that I had been denied access; they watched her starve to death.

My Mother weighed 30kgs when her body was brought to the mortuary.
Linda McGough – Page 8 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 I fully acknowledged that Greta was heading to the end of life but envisaged that she would be surrounded by love.
I made a promise to my Father whilst he lay in a hospice bed in Dublin that I would look out for his Greta.

By the facility’s cruel actions, I was unable to fulfil that promise.

Dr Adams believes our purpose in life was to be care givers.

To do so, not out of a sense of duty, but of a sense of privilege.

In so doing, we acknowledged the highest aspect of our spiritual beings.

I have been paralysed with emotional shock and grief and it has taken me over five years to document this horror.
I strongly believe that Greta has left me a legacy to make it a better world for the frail aged in our society by exposing this neglect and abuse.

I was punished for being an advocate, punished for exercising my right to complain and request better care and my beautiful Mum and I suffered.

My life has been changed in a way that cannot be undone.

It is impossible to quantify the darkness that I feel, the sadness and the pain is immeasurable.
Everywhere I asked for help I was shut down but I had to keep going for my Mum.

There are no words to describe the sadness, the trauma and disbelief of what occurred.

I was “beaten” into submission for advocating for Greta.

It was inhumane how they treated her.

I do not wish for any other mother, father, son, daughter, husband or wife to have to ever come close to what I feel has been the highest level of neglect and abuse.

People with dementia (or any disability for that matter) are not stupid.
Like the rest of us, we all respond to a smile, a kind tone, a gentle touch.

As documented in Greta’s Care Plan:  Do not assume Greta cannot understand what is being said around her  Do not assume the lack of response indicated lack of awareness  Do not assume Greta has no memories because of the loss of words to express thoughts/emotions.

 Greta enjoys staff talking about her family.

 Expected Outcome – Margaret will remain happy and content in an emotionally satisfying environment.
I have struggled for over five years from the trauma of seeing how my Mum’s end of life transpired; devoid of the love of her family.

I am not sure if I will ever recover from this grief and sense of injustice of her neglect and abuse.

My Mother died alone.
Linda McGough – Page 9 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141 **World Health Organisation Definition of Palliative Care Palliative Care is an approach that improves the quality of life with patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, psychical, psychological and spiritual.
Palliative Care:  Provides relief from pain and other distressing symptoms  Affirms life and regards dying as a normal process  Intends neither to hasten or postpone death  Integrates the psychological and spiritual aspects of patient care  Offers a support system to help the family cope during the patients illness and in their own bereavement  Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated  Will enhance quality of life, and may also positively influence the course of the illness  If applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Linda McGough – Page 10 of 10 Violence, abuse and neglect against people with disability in institutional and residential settings, including thegender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people withdisability, and culturally and linguistically diverse people with disabilitySubmission 141