General Long Term Care

Who Cares For LTC?

I have been working with a friend and colleague who was busy setting up a family council in her mother’s long- term care centre (LTC), while I had been struggling for over a year to get a best practice for Parkinson’s implemented in the LTC where I live. And that is how I learned about the Ministry of Health’s new long-term care strategy as shown in the diagram below. From feedback I got about this diagram, firstly it was my diagram – had read through the Ministry’s newsletter and identified the stakeholder – potential elements of the system that the Ministry was proposing. If you think in systems, that is what you do. What building blocks were there, would it be enough, as this case many of the blocks were human beings, would their role/job description need to change i.e. they would need training or retraining. Once you have the system defined you subject it to extremes to see if it will break – what if we had an outbreak of eBola and our powergrid collapses at the same time?

Anyway, it was obvious from the newsletter that there was no system at the time of the release, Nov 3. They had identified a problem in the care of our elders, this newsletter was their starting point, their letter of intent to fix the problems. This was the correct thing to do when thinking systems.

I was excited, here was a chance to not only fix the problem the covid had exposed, but to build an example system that would address many more problems regarding the care of people in long-term care, it would be possible in a unique way, it would reduce costs, create jobs. It is so brilliant a concept that there are many possible journal articles (publish or perish), some actually useful research projects, and requests to present at international stages.

But here is a fundamental problem, this person looked at the diagram and said she was too busy already to still get involved in advocacy activities as well – she did not want to give an old drooling LTC inmate (TIC) a chance to explain, after all she uses support software to help her type I definite cannot allow HER to her to have my email address – I must remember to test her next time to see how far her dementia has progressed, does she suffer from hallucinations?

I should digress briefly to explain my approach. My friend stated quite correctly, when I had sent her my first comments on her new residents and family council. She said, Heidi you always start with the big picture stuff that people just are not interested in, better to start with the small stuff (low hanging fruit for fans of business metaphors) which allow you to demonstrate success. People will be inspired. She has had one meeting already and they have found some solutions already.

She is right which is why it is so rewarding to work with her. I am certainly guilty as charged – I do start with big picture stuff and I have seemingly been Fighting with Everyone (more on this phrase later) and I still have nothing to show for it. However my experience is that with the bottom up approach you never get beyond the low hanging fruit, and they often cease to exist or become stagnant. With a systems approach you are more effective in the long run.

But I was so excited – she had told me about the very missing piece I had been looking for. When I read the Ministry’s November 3 News Release I saw this:

That’s right, a System with LTC problems as input and producing solutions as output in the form of Enhanced Quality of Life and safety.

An example of the many books available today, Google “Systems Analysis, Strategic Planning and Project Management books

I was trained to think in systems, when authors like Peter Drucker were in vogue (that is over 50 years ago), but there are many more recent works.

OK, we now get that the diagram was telling the Ministry that you have read the document, and understand what stakeholders they believe should be involved i.e. you are ready to get involved. Do you have a diagram to show us?

Strategic Planning

I have no idea what the final system will look like. I have many diagrams already as I sketched out possibilities. That is why I was so excited. But it would be a mistake to suggest an end solution too early in the strategic planning process, it tends to stiffle creative thinking.

But the bottom line is systems need people and resources and it requires project management skills to get them working on time and on budget.

The Basic Premise

The basic premise of this new approach was that long-term care homes would form Resident and Family Councils whose task it will be to investigate potential problems areas, independently of the management of the LTC. This council (RAFC) would report to the regional council (RRAFC) and the regional councils would in return report to a provincial oversight council.

Bureaucratic Structure

The first thing that strikes one when one reads this is that the structure could be very bureaucratic and would be too slow to be able to respond in a timely manner to issues such as the COVID pandemic. That would be misreading the ministry’s proposed solution. It could take months for an issue to work its way up the stack. But this would be misreading the intention of the proposed system.

The ministry wants to strengthen the councils by 1) removing barriers that previously prevented them from being effective such as lack of facilities, financial support, and LTC management interference, and 2) provide access to relevant information on standards and ongoing training.

Many, probably most, of the problems that would affect the safety and quality of life of residents, would be relatively easy to resolve once identified. It would save other RAFCs time if these solutions can be distributed up through the New Structure via a newsletter and/or online database/or website.

However, some problems would be more complex to solve because of provincial budget limitations and staff shortfalls. Such problems cannot be solved by local councils, but could be tackled and mediated at the Provincial level. Some problems could well be solved at the local level, but would be financially more cost-effective if implemented at the provincial or regional level.

The New Structure would be able to identify issues that impede the work of the local councils and arrange the necessary fixes, regulation changes and organize training. When the Ministry made the announcement at the end of last year all the details had not yet been worked out or the regulations amended, so my comments are probably out of date.

My sense is that most of the issues preventing people like us living in long term care from experiencing good quality of life are trivial and could be solved quite easily with a change of attitude of care staff and management.

Training is Key
A key to making the enhanced resident and family councils to work is training. The concepts that council members need to know, are complex and wide in scope. It includes topics like healthcare systems, the applicable Act and its regulations, the concept of quality of life in different cultural contexts, the financial environment of ltc facilities and many more.

The council members will for the large part be volunteers and will have a natural high turn over as family pass on. I would propose a graded online training program where all council members should be encouraged to attend a basic level training within the first month of joining the council. Then there could be intermediate and advanced level training courses that with appropriate promotion could offer council members a pathway to becoming experienced, knowledgeable council members.

Thought should be given to training of LTC staff and management. They have developed a sense of entitlement, while understandable – they do all the work after all – is part of the problem we are trying to solve. The Act makes clear, and this was reiterated in the news release, that this LTC is my home, I live here. By accepting employment here, management and staff effectively “work” for me as a resident, and are obligated to do the necessary to ensure my quality of life. This is a complex area but certainly can do with training.

Why Excited?

As mentioned at the start of this post, I seemed to be fighting everybody. Here I saw a wonderful opportunity to

1) put a system together that would ensure real quality of life of people living in long term care facilities,

2) I have two demonstration projects involving Parkinson’s that I am
a) very knowledgeable about, that would
b) serve to kickstart the RAFC system, and
c) generate considerable additional economic benefits and new career opportunities.

That’s got to be enough to be excited about? Absolutely, I am!!!

However, I have been forced to count the cost. I just am no longer the person I used to be, end-stage Parkinson’s is frightening.

Long Term Care

The Big Challenge

A Change in Direction Needed

Why had I made this site? Who is supporting it? The information on the site was confusing, too theoretical, too broad in scope. It seems like I am fighting the world alone without any support for doing it. Why don’t I limit it to being just a support site for people with Parkinson’s?

A Rethink Required.

That is a summary of a much longer conversation I had with my friend Rainy. With this she had taken the wind out my sails, I really felt alone in the world. But I have a lot of respect for Rainy’s opinion and said I would have to think about it.

I knew immediately that Rainy was right, although she did not know the full reason. I immediately set about writing a long explanation for the situation – but that was not needed. She had made a valid observation, she did not need yet another long document. Other people that I discussed the problem with, basically agreed with Rainy.

It is clear to me that they were right – in a specific sense. My Parkinson’s has become worse, as was to be expected but I had not realized how limiting it would become, and I have not been able to do much. I have been praying for guidance. Was this God’s answer? It certainly seems so. I started looking at what would it take.

Yes, but…

But I was passionate about the PVS concept that I had been working on and I was loathe to let go of it just like that. So I have decided for now to carry on as I have until I have a clearer understanding of what God wants me to do.

But I will try and address the pressing issues that Rainy had identified in her very thoughtful analysis and phone call. I will work on 1) making the navigation easier to understand. 2) Now that the purpose of the site has been defined more clearly, I will add more marketing, 3) get formal endorsement for the work, from the ministry of health, and Parkinson’s Canada.

Footnote: Who is Rainy anyway? Rainy is a very good friend that I have worked with on many projects such as the Giro di Burnaby.

I had phoned her recently and asked how she was. She mentioned that her mom had moved to a long-term care home, Carlton Gardens. While she was happy that her mom was now being looked after, there were problem areas and she was forming a Family Council as a way of finding solutions. Rainy asked if I would look over the support documents she was using. Of course I agreed, I lived in long-term care myself and if Lorraine was having problems, I would of course help.

I agreed and went over the documentation she sent me. That is how I learned about the Ministry of Health’s new long-term care strategy.

That tied in nicely with a training course that I was developing (it had been part of my passion, the PVS concept) and was now moving it into an online course.

I had previously asked her, and her husband Joe who is extremely handy to help me with the practical aspects of PVS such as developing assistive devices for shooting video from a wheel chair, etc. So now I had asked Rainy if I could “interview” her about her experience with establishing a family council at her mother’s LTC. While I could easily have created a fictitious project, it make the courses more effective if one uses actual projects. She agreed and we did the interview.

Then I asked if she would read a document to see if it made sense. It had nothing to do with her, although it was part of the course that her interview was used in. When I did not get a reply I realized that she did not the background of the course so I sent her some information, too much, and she went tilt – and that gave rise to this page and the Rethink!