My Bowel Cancer One Page Profile:

This was originally posted on the Connect4Life blog: http://connect4life.blogspot.co.uk/2015/05/one-page-profiles-for-long-term.html: thought I would share it here too!

One page profiles are a simple way that people with long term health conditions can tell our story and express our preferences.
They have a starkly simple format: They have just 3 questions:

• What people like and admire about me.
• What is important to me
• How to support me well.

Max Neill, who works with Connect4Life as a community connector has just written a one page profile to share with his family, friends, workmates and health professionals involved in supporting him with his cancer.

He said "Last September I was diagnosed with bowel cancer and had an emergency operation followed by precautionary chemotherapy. In the last few weeks a scan revealed that despite the chemo, the cancer has metastasised, with new growths on my peritoneum and lymph. Obviously this means that I have a lot further to go on my cancer journey, but as well as being a cancer patient, I'm also a family man, a Connect4Life worker and someone who enjoys a game of Dungeons and Dragons!"

"I decided to write a one page profile for a few reasons. I thought it would be a good way to gather my thoughts together at a stressful time and express my wishes clearly. I'm going to see my oncologist again next week to discuss my options, and I wanted her to know that I want to do what I can to work towards a cure. I'll share it with people like my ostomy nurse and the district nurses who've been supporting me with my chemo, and the staff at the Rosemere Unit."

"I'm hoping that it will be a way to avoid having to answer the same questions over and over again!
I like the one page profile because it is so simple, yet it enables you to say so much. It avoids all the medical jargon, and it helps you have the important conversations you need to have at a time like this, both while you're making it, and while you're sharing it."

"It's too easy in a big busy healthcare system for your identity to be subsumed by your diagnosis. I want to use my one page profile so that who I am comes off the page, and I'm recognised as a person with my own priorities and my own hopes and fears. I think a tool like this would be useful to so many people, why shouldn't every cancer patient be helped to write a One Page Profile?"



You can find out more about One Page Profiles by following the links below:

This is a blog with one hundred examples of One Page Profiles being used in many different ways:
https://onepageprofiles.wordpress.com/

Here's a blog advocating the use of One Page Profiles with Older People living with cancer: http://opaalcopa.org.uk/tag/one-page-profiles/

Here's Amanda's One Page Profile written around her breast cancer: http://thinkaboutyourlifeandhealth.com/2013/06/28/using-one-page-profiles-to-direct-cancer-support-amandas-story/

The Learning Community for Person Centred Practices have shared many examples of One Page Profiles: http://www.learningcommunity.us/onepageprofiles.htm

Here's a blog showing how One Page Profiles can be used in personalising health services:
http://personalisinghealth.com/tag/one-page-profiles/

Think About Your Life offers a whole range of thinking resources to people living with cancer, including a template for a One Page Profile: http://www.thinkaboutyourlife.org/

You can also get in touch with Connect4Life!

Follow us on twitter: @C4LifeLancs

'Like' us on facebook: https://www.facebook.com/Connect4LifeLancs

Keeping Fidelity To Person Centred Values

This is a question we need to keep thinking about: "How do we keep fidelity to person centred values?"

Because it's so clear that person centred thinking and practices are a neccessity, because of the heroic work of the pioneers of community living, of inclusion, co-production and self-direction, of rights and citizenship, the words 'person centred' appear on every health and social-care organisations' website. It's a phrase that gets bandied about at every management meeting, but we also know that these aspirations are not always backed by action.

It's particularly painful when some terrible institutional abuse is described in a news article. Then, almost inevitably. in their reply, the leaders of that organisation describe how 'person centred' their approach to care is. Every time this happens, it devalues the concept in the eyes of readers and encourages a cynicism that justifies inaction, some people already feel the phrase "person centred" is just part of a new social care jargon - though it's also very clear to many the difference between what truly person centred practice can be like, and some of the service centred practices they've experienced.

It becomes difficult for anyone who is new to Health and Social Care to discriminate between those organisations who think all they have to do to make their organisation personcentred is to stick the words into their mission statement, and maybe some colourful paper on their walls, and those organisations (and there are quite a few out there) who are seriously striving to bring about person centred change with the people they support in a variety of imaginative and innovative ways.

We need ways of ensuring people find the right trainers, with the right values, and ways that help trainers keep hold of those values, and maintain their hope.

We need ways of making sure that the organisations that do strive for person centred change are recognised for the efforts they're making.

We need stories that show what real person centred practice is like and the difference it makes.

We need ways that can help some organisations can break out of those self-deluding and complacent phrases "We're already person centred", "we do all that already" so that they can begin the journey that is the striving for person centred change.

The UK learning community for person centred practices (and the international community it forms part of) is one of the major ways that the above needs can be addressed - because it contains different people, with different backgrounds, experiences and perspectives and people who hold person centred practice dear to their hearts, making it a repository of the values that matter,

Our community must be a place where rich learning is shared, a place where we can celebrate and share the serious work that is being done for change. We must support each other to maintain good values and share the best tools and practices, tell those powerful stories of change and then find ways to share them with the world.

The way to respond to those who misuse the words 'person centred', who use it without reference to the deeply rooted values behind it and treat it as a mere buzzword or a passing fashion is to demonstrate practically in people's real lives the best of what being person centred actually means.