Consumer Engagement in the Aged Care Reform Process

Tasmania Consultation

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28 October, Bahai Centre, Hobart
Panel: Ellen Skladzien, Kim McGowen, CEO Hobart District Nursing Service and President of AA Tas.
Chair: Debbie Miller
Number of attendees: 29

Main themes

Primary Care

• Difficulty getting a diagnosis
• Lack of awareness of benefits of a diagnosis
• Difficulty accessing GP’s

Community Awareness

• Need for public education program (ideas included: pamphlets for doctors surgery, school programs)

Information and Access

• Need for integration of assessment for all services
• Question of if gateway would work well locally
• Need for higher quality assessment

Community Care

• Concern over the admin fees for community care packages

Residential Care

• Poor quality
• High staff turnover

Respite

• Importance of respite for carers
• Respite not meeting carers needs- too short or not available for those with BPSD
• Need for flexible respite that allows carers to stay and visit if they wish

Workforce

• Need for more training and supervision
• Concern about administration of medications in community care

End of Life Care

• Importance of palliative care and advance directives

Support for Carers

• Need for a consumer representative organisation specific for aged care consumers
• Need for better mediation options for disputes with providers

Acute Care

• Poor quality care
• Need for better education and staffing
• Concern about the closure of the Nell Williams Unit, a dementia specific emergency unit, at the Royal Hobart Hospital

Restorative Care

• Need to focus on what person with dementia can still do and help them to retain those skills.Top of page

Comments

Primary Care

There hasn’t been enough work done on enabling GPs to make this diagnosis.

There is an attitude that if someone has dementia perhaps they are better off not knowing.

After dad passed away mum was diagnosed 2 months later. She had issues but I didn’t recognise them. It was too late then to put any care plan in place for mum.

GP access is one of the main problems. It is hard to find a new GP when the residents come to the residential care. And particularly after hours GPs are hard to get. For the aging problem, access to GPs across the country has to be addressed by the government.

GPs are not interested in people in nursing homes. My husband was in a nursing home, and the morning he was diagnosed to be dying and the GP didn’t arrive until 5 hours after he died to sign the death cert.

We went to endless GPs and could not get a diagnosis. Finally dad was diagnosed with a sinus infection, the locum then tested his memory and realised something was wrong.

Community Awareness

It took me a long time to get a diagnosis. I think there is a need for a public education program, so people can see the signs earlier, so it can be diagnosed and treated.

There is nothing in the surgeries to help people understand dementia. I am appalled; it was the same 10 years ago when my husband was diagnosed. Information should be put in every doctor’s surgery so the carers can find information to find help. I am happy to deliver pamphlets!

My husband has Alzheimer’s, when I started to say something was wrong to my 5 sons, they all thought I was going funny. So could we educate in schools? A lot of these young people with grandparents need to know well before it happens.

Information and Access

I would like to see one assessment for everything including respite and services.

I have had direct experience that a person living alone in the community can’t get an EACHD package because their needs are too high. Cherry picking has always existed in residential care, people with mental health issues are completely rejected by providers because they are too expensive.

A better assessment should be made of the person before they go into care. A more professional assessment would be more appropriate.

The gate way system would be great but how will state and local government access that information? It will be hopeless and not work.

Community Care

We receive 34% of the package; the other 48% of the package goes to the administration of the package. The value of the package that I receive is about half the value of one residential care place. So there is room to make up for the funding for the providers.

I have concerns about the CAPS and EACH package due to the issues of accountability in terms of the funding. I wonder where the funding is going; because of the administrative costs seem very high.

Residential Care

Mum is in the lodge (high care) they are slowly understanding her. None of the homes will be perfect, but there is a big turnover of staff, you get someone that finally understands that finally understands your mothers mind, then there is a change in the shift or manager, this is hard for someone with dementia. Mum wears glasses, and she doesn’t wear them until I go in and put them on for her. She is incontinent, she has trouble walking, I had to tell them to not feed her too much or she won’t be able to walk from overweight.

Dad was left in a chair, he couldn’t walk or feed himself, but mum is encouraged to feed herself, and she paints, knits, and joined the choir, this isn’t mum, this is someone else living another life. But she really enjoys her life in dementia. It is important to have the people to do all those things with them that they can’t get in home care. Top of page

Respite

We can support anyone in the community but we can’t do it without family carers and they can’t do it without respite. We all know the stories for the carers going before the client, and that is due to carer strain.

I have used residential respite unsuccessfully. I go away and when I come back my husband and mother have deteriorated considerably, My mother is not able to walk and we have to invest heavily in physiotherapy, so I try not to use residential respite so that leaves me with no break.

There is so little time for me to do anything. The respite was too short.

I could come with my husband to respite, that to me was a perfect model for respite. If the daughter or wife or carer can be admitted it is a perfect model.

We need more secure dementia areas, specifically built. There astronomical figures for people with dementia in the future. When people go into respite they can escape. The relatives had to be called at mid night because of behaviours and the only way it could be solved is to take the person home.

There should be a health maintenance focus – I prefer community based care as we have control over it. When my mum came out of hospital she couldn’t walk. Doing therapy at home she started walking at home. This makes my job a lot easier. It makes me annoyed that with the 12 different respites we have used, only one she has come home walking.

My mother and father have dementia. My dad was very aggressive and the system couldn’t cope at all. We couldn’t get respite care. Every respite dad went to he came out not walking.

Workforce

In the community there is lack of staff supervision. We have had many carers over the years, they are poorly skilled.

Only 15% of health care workers recognise it is a terminal illness, so we need to change the focus of their training. The managers of the aged care facilities want to train their workers but can’t afford it.
We need more money put into training GPs.

There are many incidents with medications. In the community in Tasmania the legislation is that community based support workers can do what they like. They can give any narcotic, or any type is substance according to the … act. For residential support workers it is better.

End of Life Care

There is a need for advanced care health directive at the time of diagnosis so the person can be still involved in how they die. I cared for my aunt and you wonder would she have wanted to die like this. If she had directives would it be like this?

Early diagnosis is important, so the person can make their own decision particularly about palliative care.

Acute care

All the work being done is completely undone once a client goes into acute care; they come home in a much worse condition than when they left.

There are things happening in acute care that are purely for the convenience of the hospital, not the client.

Acute care policies need to be overhauled, there needs to be better education and staffing to deal with what Alzheimer’s and dementia patients need.

My husband was taken to the hospital and moved into the Nell Williams unit. At 9pm the nurse said don’t worry about you husband I will look after him. The nurse assured me he had been dealing with dementia for many years, so I was appalled when the Nell Williams centre was closed.

The Nell Williams Unit was a specifically designed aged care emergency unit in the Hobart Hospital. It won an international award. Within 12 months they closed it down, for no reason other than bed pressure.

Support for Carers

I am a carer, I have been for 8 years, and I am looking to be heard. We don’t have an affective advocate for us to be heard in Tasmania. There is no organisation that represents consumers of the aged care system.

By 6pm I feel like sitting in the corner and having a cry. There is no body who can help me. The AA people are absolutely fantastic. That gives me a couple of hours, but you feel so awfully lonely. Because you lose the person you have lived with for 50 years.

There should be a provision for external mediation where appropriate. A peak body in aged care might be able to fulfil that. Too often people with dementia have a problem with a service provider and they are still upset. It is not adequately solved; it is a provision in the act that is very vague.

Restorative care

I looked after my mother for 7 years. Two years after she was sent into nursing home I was diagnosed with frontal lobe dementia. When I was caring for my mum I didn’t know there was any support out there. The only time I found out there was support was when I found out I had dementia myself. What programs are there to retain the skills of people who have dementia? Creative programs are good but there should also be availability of programs to do everyday things to care for themselves. Is there any thinking out there to try to help the person with dementia to care for themselves? Then they can stay in the community longer and more meaningfully.

There needs to be services for people in the early stages of dementia who want to maintain themselves in the home and their social contacts. When you get a diagnosis and it can take over your whole world. But people want to remain as a social person and continue all their activities. Not just the person with dementia.

Carers have no idea about how to take a therapeutic approach to activities. I get mum to do up her buttons and feed herself and engage herself in whatever way possible and her mood is so much better when she has carers that use those approaches.

I work as an advocate for people with dementia. My role is to allow people with dementia to make their own decisions. It is supportive decision making. I am constantly amazed at the degree to which people with dementia can communicate their desires and decisions. That makes me passionate about the therapeutic approach.

I had to fight to keep my mum at home. Even though they have dementia, they don’t have it all the time. Give them more empowerment about what they want. Top of page

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