We felt there was a considerable fragmentation of services offered

We invited members of our community to share their experiences and perspectives of aged care services. Disclaimer: These stories have not been independently verified. They do not necessarily represent the opinion of Aged Care Reform Now and are shared for information purposes only.

This is the first of two stories submitted by this community member.

My 83-year-old husband, W.S., had a long medical history, including – years of skin graft issues from leg damage as a child – a left CVA (stroke) age 40, causing right-side paralysis and mobility issues – bladder cancer, a urostomy – recent recurrence of cancer, no treatment offered – severe deterioration of spine due to ageing. He had lived with disabilities of varying levels all his life. 

An Aged Care provider in Adelaide South Australia provided a Home Care package level 3,  progressing to Level 4 from February 2018 till W.S. death in December 2019. 

Following urinary infection/mobility issues and discharge from the local public hospital in April 2018, W.S. was no longer able to stand, walk, or transfer, necessitating the use of a  sling/hoist lifter and various equipment. As his wife and carer, I received some training in this equipment from Physiotherapists at the local public hospital and was deemed capable. W.S. and I, his wife were adamant that he should be able to return home with appropriate care and equipment and plans were set in motion for this. 

The Aged Care Provider staff levels, training, and experience were a concern throughout this time. Their part-time Occupational Therapist did a magnificent job obtaining equipment but was not “available” enough. Previous discussions with Provider management had resulted in the statement “More Occupational Therapy time will happen” – resulting in another part-timer, i.e. more clients could be helped but still on a part-time basis. 

There was considerable delay in W.S. returning home from hospital as Home Support  Workers had to “be trained” for his level of care in particular the use of a sling/hoist lifter. Two of the three nominated regular workers had only done a very basic aged care course about six months before, but seemed to have minimal experience in the practical issues of personal care and had never used a hoist. As I had good experience of W.S. special needs, I felt that in fact I was teaching some of the Support workers. This was actually stated by a “temporary” worker who said “I will just follow you!”.  

In the seven-month period W.S. was at home, our long-term coordinator suddenly changed, followed by five “temporary” coordinators. The provider seemed unable to find appropriate applicants for the job. This resulted in a lack of continuity in the knowledge and care of W.S. Although he had a Level 4 package, the ongoing costs of renting equipment and other care issues, meant that we were advised by a coordinator that our package would fail to cover costs long term. The decision was therefore made to reduce the Home Support Worker’s input for “personal care” hours to only five hours per week. Luckily W.S. was totally mentally alert, and I was physically capable of using a hoist and other equipment on a one-person basis as he and I could work as a “team”.  

Communication between the Aged Care provider / General Practitioner / the medical team at the local public Hospital was of concern to my husband and I over this last seven months of his  life. Urology specialists offered no ongoing treatment, did not discuss “life expectancy”, did not refer to Palliative Care, as they indicated there were guidelines of a “less than three months life expectancy” time frame for palliative care services. An excellent but overworked General Practitioner had some contact with the Provider mostly re leg graft/wound issues, but unfortunately, she could not home visit due to having moved her practice. 

W.S. and I felt there was a considerable fragmentation of services offered – especially from a medical point of view, there being no real “medical input” to the Home Care package as such.  

We were both determined that W.S. would remain at home, but unfortunately, he had to spend the last very distressing nine days of his life in hospital – due to a urinary infection,  needing intravenous antibiotics which we were told could not be dealt with at home. This last week was particularly distressing as he was told that he had “Pneumonia” and then  “Legionella pneumophilia” – even though he had no obvious symptoms of either. The Dept. of Health “infection guidelines” – meant a requirement for another very strong additional  antibiotic, causing him physical distress, much discomfort, and pain, and weakened him over his last days. 

The question arises – if there was better communication and coordination of medical support in Home Care Packages and Palliative Care would W.S. last days have been much more comfortable? Could he have remained at home till the very end, as he and I always wished? In fact, was his death accelerated by the intensive “too late” efforts and distress?  

Our population is aging. People with disability are living longer, and there seems to be little understanding of the need for special consideration when Aged Care Services are to be involved. Providers are falling short of accommodating their special needs. GP’s and public hospital specialists are already overworked, waiting lists for even basic medical support become longer and longer and they can not give the support needed.  

We need to plan for the future re Disability / Aged Care / Palliative Care. There needs to be a coordinated approach – and one of the essential issues is the need for specialised training and employment of appropriate medical, nursing, and care staff.  

This experience of my husband was at the end of 2018. He had been on a Disability Pension for many years and was moved to an Aged Pension before NDIS was started.  

Although he had been lucky enough to obtain a Level 4 Home Care Package before the national waiting list started, it would not have been sufficient to cover the costs long term to be able to achieve a true Home Care Package – one which gave him a good quality of life. I dread to think how people are coping now that there is a massive waiting time for high-level packages.

The only reason that my husband was able to spend the last months of his life in relative comfort, in his own home as he wished, was because I was able to physically and mentally cope with what a Social Worker at the local hospital had told me “Won’t work”!! It did work for my husband and I, not because of the system, but in spite of it!

If this story caused sadness or distress, please reach out for help.
Lifeline: 13 11 14 or lifeline.org.au
Beyond Blue: 1300 22 4636 or beyondblue.org.au
Headspace: 1800 650 890 or headspace.org.au

Do you need to lodge a complaint? We have information on which government agency to contact, and how to explore legal support here: https://agedcarereformnow.com.au/resolving-complaints/where-to-make-an-aged-care-complaint/

Do you need support? OPAN provides free services to support older people and their representatives address issues related to Commonwealth-funded aged care services and informs people of their rights and responsibilities: 1800 700 600 or opan.com.au

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