Consumer Engagement in the Aged Care Reform Process

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Monday 17 October, Sapphire Room, Club Sapphire, Merimbula, NSW
Panel: Glenn Rees, Rosemary Oats (Aged Care Business Manager, Anglicare NSW South Coast and Snowy Region)
Chair: Barbra Williams
Number of attendees: 41

Main Themes:

Primary Care

• Waiting time to see a specialist
• GPs not listening to carers concerns and relying only on standardised tests
• Length of time till getting a diagnosis

Community Awareness

• Stigma associated with taking on a full-time caring role
• Similarities to the stigma associated with mental illness
• Avoidance by friends and family

Information and Access

• System is complex and difficult to navigate even for those who have a professional health background
• Importance of local networks in finding out information about services
• Role of AA as first point of contact
• Reluctance to call a national hotline and preference to talk to local people who know about regional services
• Wait time for assessment

Residential Care

• Different facilities suit different personalities
• Residents are worth more to providers if they are unwell

Respite

• Quality inconsistent (e.g. staff unable to administer medication)
• Need for better environmental design
• Importance of flexible respite to meet carers needs

Workforce

• Training
• Staff level/ratios
• Need for a career pathTop of page

Comments

Primary Care

When I took my wife to the doctors it was18 months before I could see a specialist. He gave her tests one after another and we were told there was nothing wrong.

Tom was 66 when I noticed things in the wrong place around house. I told the GP and she said we all age and get absent minded. Two years later he was wandering and the GP said still did not listen to me that there was something wrong. A couple of months later he went on a 9 hour walk. Bells rang, and GP did tests. One friend said it took 10 years to get her husband diagnosed.

I knew there were things wrong with my husband. I couldn’t convince anybody, he would drive on the wrong side of the road, go over speed bumps and he nearly knocked us both out of the car. I went to local doctor in QLD and asked if the GP could asses him, I wanted him off the road. He did a test and past it with flying colours, there was not a thing I could do. We moved and I went to a local GP. I said there is something dreadfully wrong, he takes the car and he is going to kill somebody or himself. He was referred to geriatrician and after the first test they said sorry he has Alzheimer’s. Doctors need to be informed that if the partner has a fear they need to look into it, until someone will diagnose it.

Diagnosis is extremely difficult and common., I talked to two doctors, one of them would not acknowledge I was talking, he ignored me, I went back and said this time I am laying the law down and when I got to specialist in Canberra she said why didn’t you do something about this two years ago.

I would like to let people know how we got into the system. The experience several of you had with doctors not understanding the problem, people were dismissed or brushed off. But my experience was all good with a local doctor. The memory loss is such a gradual process you don’t notice it. But the doctor gave Val a memory test. All this happened quickly, it didn’t go on for years. Service was good and started with our local doctor.

Community Awareness

Family member has YOD. Friends do not understand why a young person has stopped working to be a full-time carer. They think we should just get a job. We try not to let others know about the illness and to keep it quiet. We are proud of what we do but the way we are seen outside is a different perspective.

My husband was 68 when he was diagnosed. He was early onset. Once it was general knowledge we noticed the social stigma. We were stopped being invited out. When we went to barbeques it was obvious people felt that they couldn’t interact with my husband.

When someone has breast cancer or an accident, everyone feels sorry for them. But if it is a mental illness or dementia people try to avoid you and they don’t know what to say. People do not understand it.

This all brings back memories, my first contact with dementia goes back 15 years when my mother was suffering, and we put it down to memory loss. We had to sell her house and move her into a home. She lost her friends, they didn’t desert her, she pushed them away. The local council sent around cleaning ladies and she accused them of stealing. She was difficult in later years, contrary to what she used to be. Present day – I was able to recognize the loss of memory (in my wife) we are going through now. I am proud of being a carer. We let people know our problem so they can understand if she does not understand the conversation or forgets. It is important to let your friends know so they understand and don’t go away saying ‘what is wrong with her’. We are happy but we are in early days. Lovely ladies from Bega are most supportive. I look forward to our meetings; we are one big happy family.

The stigma is caused by our generation who look on people as weak. If we do anything about it we need to educate the kids. My great grandson looked at me and said to his mother ‘he is old’ and we were not much better.

People down the street say how your mum is, they say we will visit her but they never do. It pisses me off.

Information and Access

This area (Merimbula/Bega) has an outstanding service to dementia care compared to Melbourne. We are way ahead from a nursing perspective.

If I wasn’t in health industry it could be difficult to know where to go, but once we make contact with one service they then recommend the next services. Good networking. The aged care industry struggles with staffing. This can impact on a persons stress levels. One gap could be for carers who work full time and finding support groups that are flexible, such as evening times.

When my husband was diagnosed, we were given no referrals to anywhere or anything that would help us. I said to a speech therapist that we were moving to Bega, they said you won’t get anything like you get in the city. We have had more care here than anywhere.

I had a gentleman in to do the bathroom fittings and survey to see what I needed, another man to see where they can be put in. But you have to pay for them, and I just don’t have the money to pay $300-$500 to have them supplied and fitted so we don’t have them.

When we moved here (Merimbula) everyone told me I was stupid, it is the best thing I have ever done. It is wonderful, all the facilities that are here.

My mother is living at home alone, and she is on an EACHD package, it is a life saver for me. She has plenty of services, up to 17 hours a week. It covers home modifications.

All I know is I speak to you (Barbra Williams, Regional Manager) and it happens.

I contacted AA after I saw the sign and walked in.

I visited the GP in Sydney; he gave me the AA number and said to do the ‘living with memory loss’ course. I went and did 10 sessions, then contacted AA in Bega, that’s how I found out how to get services.

Even though I work in system it is still confusing. I rely on community members knowing, services are confusing and they change yearly.

I found out at markets, with the memory van. I knew something was wrong with my mum, people just said she is getting older.

We have been here for 30 years, no close family (started crying) if it hadn’t been for AA who started the ball rolling, access to home care, and I get respite every week, it has made such a difference to our lives.

My mum was independent; dad never did anything for himself. But he is now learning to cook; it’s a load off me. He will not take meals on wheels. But sunshine centre has been very good for mum.

Merimbula nursing girls terrific and Bega girls are terrific. You do not know what is around the corner. There is only one thing that I wish for. I wish that my wife was home with me.

The waiting time involved for assessment! Why does it take so long?

We were in Sydney but moved here to get better treatment and support. To get an ACAT assessment in the city there was a 6 month wait, this came and went, and after 7 months they sent a sociologist instead of a medical person. When I was assessed again I was told the first assessment was not worth the paper it was written on. The first hospital we went to we were treated with care, but we were ignored at the second one.

The aged care assessment team are not pushy enough. They are too easily convinced it is fine, don’t worry about it now, rather then them saying we will come out and make suggestions for you. There is a need for more staffing and people available to perform these functions.

Residential Care

Different nursing homes suit different people with different personalities. Mid way through the disease, the home was too big. It was heavily staffed with fully trained RN nurses. I then put him into respite in Marina Park. There are two main cottages with dementia, no more than 12 people in each cottage. Three staff on all the time. Fully secure. There is a lot of one on one with patients. Each patient had a primary carer. They had movies playing. Music playing. At one point he was pacing so much he wasn’t eating. So every time Tom passed the desk they gave him a piece of food. You need to asses the personality and choose the home that suits this personality. When it was time for him to pass away they bought palliative care to his room. I would like to see this type of set up in more nursing homes; it is more conducive to the patient.

At the moment the system operates that your worth more to the providers if something is wrong with you than if they try to rehabilitate you. The lower mum got the more money the government provided. There was a quick jump to antipsychotics. Took me six months to find out what we could do for mum. You trust the system but somewhere along the line the system is trying to get their little bit. Top of page

Respite care

We use respite care but the quality is inconsistent. The environments can be worked on to support people with dementia, e.g. photos to show where people can go. But it does not happen. Some staff are well trained and some aren’t inconsistency again. There should be programs around for people in residential care, and consideration needs to be given to how the buildings are maintained and kept going. There needs to be a lot more reform in residential care, and what is going on in there, staff levels, education for staff and how the buildings are built.

Within the last few months my husband went into respite, paid by the government. But there are no registered nurses at the weekend so I had to bring my husband home for the weekend as he required medication. There was no one qualified to help at the nursing home. I found this a bit weird. I had to bring him home give the medicine, so I didn’t have my full break. The nursing home was also ringing me every so often because they couldn’t handle him, so I didn’t get my respite at all.

Services in the community make a great difference. Merimbula home nursing came out three times a week which enabled me to go out and get my hair cut. Respite is critical to just lay down and have a sleep. I would have persevered further but (started crying)

For respite we waited 2 weeks. No trouble getting him in. When going in for full time care there was one vacancy and then transferred into totally secure cottage. Most of the time there are usually one or two rooms available. But there are more and more people getting dementia.

The ladies from Merimbula nursing did respite with my husband once a week for 2 hours, but this is not long enough for someone like me who needs to go out. I can’t get anyone to sit with my husband while I go to Bingo, my one day a week. It is not as flexible as it could be. Two hours sounds a lot but it is not.

The mobile respite team have been wonderful. Sunshine club is wonderful (dementia specific service).

Workforce

Nurses don’t really know how to handle people with dementia. Is there training in their courses these days? And the same for doctors? The scheme at Bega hospital has been much successful. I would like to see that spreading around the country; it has been a wonderful innovation.

My husband has been in respite and they didn’t seem to be able to deal with his sundowning. They didn’t have the time and when he had behaviours they were calling me for help. Staff are not trained to cope with sundowners.

Why isn’t more money put into training carers on how to deal with dementia? It is glaringly obvious from what I have seen for the last 12 months. W/e all know people in nursing homes are not trained in dementia. The number of nurses and carers in some homes in relation to the number of residents isn’t enough. There should be more training put to carers in nursing homes, we need to have nurses but generally we need trained carers.

Volunteers on boards need more training so they can be passionate about it.

I have concerns about staffing ratios.

People have been saying we need more carers. I don’t care how much training you have, there is still that special person that can deal with it. There are only a certain few people that have the special quality to be a carer.

I have been looking after mum for more than 10 years. (When my mum was in respite care) the nurses were wonderful; she got looked after very well. Then I got a call and my mum had been assaulted, the ambulance got called, taken to hospital, mum was very much traumatised. We have no hard feelings towards the person who did this to mum as he has dementia. He had never been away from home before. At the coroners inquest I made a few suggestions: aged care could do with more staffing in dementia care. There should be more supervision, we have childcare centres, and there is one person to 5 children. In the dementia wing there are 20 residents and there are just 3 people in there to wash, shower and handle all their needs.

I found it difficult to understand diversional therapy.

My mother got frail at 98. Staffing – we need more and not paid enough. There has to be a career path. Top of page

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