personal, public, patient

There’s the story about the guy asked how patients were involved in his research. He was baffled. “Of course they’re involved,” he said, “I take their blood.”

Health and social care services like to think they’ve moved beyond that attitude now. There ‘user groups’ and ‘patient fora’. There are ‘expert patients’, which is a whole different ball game. Twitter is a great space for learning about #patientleaders, #PatientActivation, and all sorts of other motivational, inclusive, hash tags. More and more of my time is vanishing into social media as I try to keep up.

A lot of the work that our charity does falls under the umbrella of ‘Personal and Public Involvement’ (PPI). Our survey and conference have been supported.  I’m in a ‘reference group’. My colleagues are in ‘advisory groups’ and ‘fora’. We have opportunities to be heard. Anything we’ve been able to persuade the system to do has been housed in PPI.

In Northern Ireland, the health and social care system has a responsibility  to promote PPI. It’s built into the structures of the system. There are senior people responsible for PPI. That may be part of the problem. If someone (not everyone) has a responsibility for PPI then it’s their job (not everyone’s). It’s for that office to care about/ do/ report on. It’s not for everyone to be bothered about. It’s a job, not a value.

NIRDP members with Simon Hamilton

Last year I spoke at a conference about my experience of PPI. The conference was titled “Them and us: tokenistic or realistic”. A telling choice. As far as I know, I was the only non health service person in the room. I was invited to speak by one of the managers with PPI in her remit. It’s a value to her, but to many others it’s “her job”.

Some of what I said is below. I’d be stronger in my wording now.

“The … report identifies many good reasons why listening to and talking with those living with ill health and their carers is necessary, to ensure that services

  • are responsive and appropriate
  • are tailored to need
  • are prioritised correctly
  • Acknowledge patient rights
  • Recognise knowledge and expertise
  • Improve levels of service satisfaction

To those, I’d add

  • People living with ill health and their families may be scared and vulnerable; all the more important for us to be empowered. We need to know about support, connections and have someone, if we’d like, to walk alongside us. Someone who listens and can help us make a difference. We need to be heard.
  • We need to have confidence in our environment, in our support team of health professionals, social workers, and the “system”. We need our doctors and nurses to listen to us as we describe symptoms and quality of life issues. We need policy makers to listen to us- the challenges families face may be about parking, incontinence aids or finance rather than only medical issues.
  • Most importantly, we can help with solutions. We are living the life. We know the reality- we’ll have thought of ways round the difficulties. Give us the chance to share our learning, and we can help you work smarter.

Groups exist for ‘listening to and talking with’, but do they meet regularly? Are they making a difference? There are still major health and social care events happening without patient involvement, or even appropriate representation. Personal and public involvement is still an ‘add on’ rather than an integrated part of work. Has its development been hindered rather than helped by being a statutory responsibility? How will the government report the participation and inclusion aspects of the United Nations Convention on the Rights of Persons with Disabilities?

There are many questions, and much to explore. Somehow, in a moment of madness, I’ve ended up in a new setting. @imonlyslightly, @olijanderson and I are going to be hosting a tweetchat on Thursday, 22 May, 8pm BST or 3pm Eastern Time #PPIchat. It will be scary. It could be fascinating.

I’m terrified.

Bring it on.

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13 thoughts on “personal, public, patient”

  1. I have a Rare Disease which is called Porphyria variegate and I have CODP Asthma and more health problems si

  2. Excellent blog Speccy. PPI and the potential that exists for improving services through patient and carer experience and advice should never be underestimated. It has great potential to work, must work and the archaic, paternalistic culture that still lurks within the cracks of ‘innocence’ or worse ‘little patients & carers need to be seen and subjugated’ needs a few more nails in its coffin.

    1. We’re back on Thursday, Marie, 8pm BST. I think it went as well as a first attempt by inexperienced amateurs could 😉 I did have a panic when people joined in- ooh, the responsibility!! Exciting stuff.

  3. i’m just now coming round, but I hope that your tweetchat went well! I am so impressed with you! I think to add all the social media challenges on top of all the other advocacy roles you’re playing is indeed quite amazing. Don’t ever sell yourself short, Fiona. I hope Thursday went very well. 🙂

  4. Curses. I missed the tweet chat day. It’s a fascinating topic: Reflection and contemplation are not built into the 21st century lifestyle, and this is exactly what humans need to discover something as fundamental as a value. If we are to see a sea change, a real shift, even the most well meaning company cannot effect change unless they allow their people time to reflect. I wonder if the current economic climate makes this an affordable option.

    1. Very interesting point, Kate. Especially challenging for public services I’d think, yet so vital.
      Tweet chat number 2 this week- I know it’s a great idea and I’m so happy to be involved, but it makes me SO anxious to be having such a public conversation, when I’m such a newbie to the topic!

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