Patient and Public Involvement Engagement and Experience (PPIEE)

What to call people who advocate for best practice and patient care is an on going debate and a rather pointless one.

Patient Leader, Partner, Voice, Advocate, Campaigner, Activist etc. what does it really matter.

It’s similar to the glass half full – half empty question when, whatever the answer, the glass can be refilled.

I am going to use the term Patient Leader and attempt to explain what it means to me.

Being recognised as a Patient Leader is not something that happens overnight. Nor should it be undertaken lightly.

The most important thing to note is that it takes passion about patient care across Health and Social care to be a Patient Leader at whatever level you want to be involved.

It takes time and effort to keep abreast of what’s going on in the NHS when so many major changes are taking place. This alone is not an easy task without a basic understanding of the language used in the health service.

It means signing up for, and reading through, newsletters and reports from a number of organisations to keep up to date with what is happening in the Health arena.

It means going to conferences, sometimes phoning or mailing the organisers to ask politely why their conference about patients does not appear to be open to patients and requesting a bursary place so that you  don’t have to pay to attend.

It means giving talks to health related patient groups and listening to people who have a story to tell.

It means being confident about talking with Health professionals at all levels.

It means meeting lots of interesting people and learning from them

All of that said, it is a very satisfying thing to do.

Now let’s move on to some of the obstacles facing potential Patient Leaders.

The NHS 5 year plan states that the public, patients and carers, should be at the heart of everything. It would be easy to assume that this relates simply to individual care but it has a broader meaning. There is a statuary duty to involve the Public in commissioning NHS service

Although there is a mandatory requirement to engage, it doesn’t always happen. The extent to which it does varies considerably across the NHS.

Many health professional don’t know how to engage, others feel that patients who sit on committees or strategic groups fall into two main categories

First, they assume that we don’t understand how the NHS works and have unrealistic expectations of what influence we may be able to exert.

Second, when we do understand the system, we are often described as being ‘experts by experience’ using our positions simply to pursue our own agenda, identifying our own problems, or to complain.

Patients who are confident and know what they are talking about can be seen as ‘confrontational’ if they question things. Seeing them as ‘critical friends’ seems to be an alien concept to most health professionals.

Often white, middle-class, and retired many patients are also described as “the same old, same old” and viewed as so far removed from the realities facing new patients that they are more of a hinderance than a help.

A major cultural change is needed, both staff and patients need help to make successful engagement work and I’ll talk about that in my next blog .

Carol Munt 05/12/2016

 

 

 

 

 

 

 

 

 

 

 

 

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Alzheimer’s Australia Language Guidelines

Creating life with words: Inspiration, love and truth

The following is a more comprehensive version of the Alzheimer’s Australia Dementia Language Guidelines 2014. I have uploaded it as a pdf Alzheimer’s Australia full language guidelines 2014 and included each page as an image below. I feel like people with dementia have worked hard to be heard, Alzheimer’s Australia have really listened, and together we hope to bring about changes to the language being used when referring to people with dementia, ensuring it is respectful and non offensive to the majority, even though there will always be some who feel differently. Collectively and collaboratively, I hope we can impact positive global change in the health care sector, service providers, governments, the community, the media and in research so that no longer will people be labelled as things like ‘aggressives’ or ‘wanderers’.

Alzheimers Australia full language guidelines 2014_Page_1Alzheimers Australia full language guidelines 2014_Page_2Alzheimers Australia full language guidelines 2014_Page_3

Alzheimers Australia full language guidelines 2014_Page_4Alzheimers Australia full language guidelines 2014_Page_5Alzheimers Australia full language guidelines 2014_Page_6

Alzheimers Australia full language guidelines 2014_Page_7

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20 things not to say or do to a person with dementia

We all need to read this.

Creating life with words: Inspiration, love and truth

PowerPoint PresentationThis is a slightly revised and updated list of tips from the one I published here last week with 17 tips. The day after that I also wrote one called My dementia Trumpet call, explaining a little why I’d put together a list in the first place. Of course, there was some angst from a couple of people about some of my points, but overall, mostly consensus, especially by people living with dementia. If it is possible to positively impact the life of even one more person living with dementia, then it would not matter how many people without dementia had disagreed with me.

I presented this new list to two groups yesterday, one a group of professionals at a Diversity Forum in Ararat yesterday morning, and then to a group of mainly family carers and people with dementia at a YOD support group last night, as well as…

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…..and then the dog ate my denture!

 

Do things go wrong in threes?

I had been in bed with a chest infection but then felt well enough to get up and watch TV.  Best laid plans and all that, when I turned it on, sound but no picture. (one)

However all is not lost, I thought, I’ll use my laptop. Now I don’t know how many of you followed the annoying prompt and downloaded Windows 10. If you thought viruses were bad I have news for you. Turning on my laptop for the first time since leaving it  downloading Windows 10 it gave a warning bleep and then nothing. (two)

So back to bed with a hot chocolate and a book.

A few days later I  stayed with my daughter and grandsons for a few days between Christmas and the New Year.  One evening they all disappear so I sat comfortably with my feet up and a glass of wine watching Luther on catch up. Puppy fast asleep by my chair.

Did I mention that I have a false tooth replacing one that got knocked out? The problem is that I don’t like wearing it so I took it out and put it on the coffee table. If you are wondering why I’m bothering you with this mundane fact? Bear with me.  Engrossed as I was watching TV I paid no attention to the puppy until the programme was over and I got up to get a refill. For a split second I wondered what said pup was chewing. Then I thought, what a great title for a blog!  (and, yes things do go wrong in threes).

 

 

 

 

 

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