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