When you feel like a One-Pager Lone Ranger

17 September 2015 | By Deb Watson

“Hi James, my name is Laura. Is that your tractor? WOW, is it new? Can I have a look? I hope it doesn’t get stuck in the mud.” The words and lilting tone of the new nurse on shift briefly halted James’ sobs, while almost reducing me to tears of relief. Laura had read James’ one-page profile and understood the importance of paying attention to things that matter to him. Even at 3 o clock in the morning, when he may have been well beyond listening. This was our latest hospital experience at its best. Some of you may have also read my last blog talking about our exceptionally positive experience at the Royal Children’s Hospital in Melbourne (RCHM).

Our worst experience (at a private hospital in Melbourne) had culminated in James waking up from anesthesia in pain, in the arms a recovery nurse – a man that he had never seen before – wondering where his mummy was. Parents are not allowed to wait in the recovery ward, and can only get to the recovery ward by being escorted from level 3 to the theatre area on lower ground in a very slow lift by paediatric ward staff.

James OPPStruggling to write this blog, I have wanted to rant and rave about my frustrations and sense of powerlessness in being one parent of one child, receiving one off surgery at a hospital performing surgery on several children every day. While my conversations with the hospital following discharge were polite, respectful and seemed to genuinely reflect a desire to improve their practice, I was left with very little confidence that what I said would actually lead to significant change, in spite of me offering to continue to work with them on it.

With the knowledge of how effective one-page profiles can be, it makes great sense to use them in a range of situations beyond work in the community services sector. I have used them through my journey with fertility treatment, pregnancy and birth, and with my two young boys in relation to health and childcare. I wonder how many other people are using one-page profiles outside of the relatively comfortable sphere of organisations where person-centred practices and one-page profiles are at least familiar, if not commonplace. After around five years of feeling extremely vulnerable handing over different one- page profiles to health and childcare professionals, I now find myself reflecting on how to get the best out of sharing one-page profiles even when feeling like a one pager lone ranger.

Here are some tips that I have put together based on my experience:

  1. Depending on the setting and purpose, think of multiple ways to deliver the profile – e.g., Email in advance, several printed copies, including ensuring you have one with you to easily refer to at all times – this latter point is particularly important in a hospital setting when a number of different staff, often from different departments, may be involved.
  2. Rehearse/practice what you will say when you hand over a copy of the profile. This is where emailing a copy in advance can help even if it is not passed on to relevant people. It gives you a chance to practice your introduction with time to edit until you feel you have your pitch right. It could also help to have some brief printed material that introduces people to one-page profiles, shows them where/how to learn more, and helps them to see that they have wide support and application. E.g., Include a link to the 100 one page profiles site If you are clear about what you hope the profile will achieve, it is more likely that others will understand and appreciate its purpose.
  3. Ensure you know the crucial points by heart so that you can let people know about them if no one seems to be paying attention to the profile. For example, James’ profile for hospital says, “please begin by letting James know your name and ensuring he knows the names of others working with him.” Once I had written this down, it was easy for me to interject and ask people their names, and tell them that James feels more comfortable when he knows who is working with him.
  4. Try to find out who is likely to be responsible for ensuring people read and honour what is in the profile and try to connect with that person in advance. If I hadn’t seen what a crucial difference this made when working alongside Lydia at the Royal Children’s Hospital, I may not have thought of pursuing this in other settings like our recent experience. In reality, this can be quite difficult, particularly for a one off hospital admission like James’, but if you have the time to look into it as part of your preparation, I think it is well worth doing.
  5. Try to separate in your mind things that should be simple for anyone to observe regardless of role, policy etc, (for example letting James know your name), versus things that are likely to present a significant challenge due to inflexible policy or practice. In truth, I am still mulling over how unacceptable it is for any small child, even just once, to wake up from an anaesthetic in pain, and in the arms of a complete stranger. Whether using one-page profiles to advocate for ourselves or loved ones, if we are to be effective in this, we must be clear about those things that really are non-negotiable. Wherever possible, it is best to have made decisions in advance about our course of action if those non-negotiables are not honoured. Now several weeks since surgery, James still becomes very distressed if he wakes up without me by his side. I have no doubt that he will get over it, and probably won’t be scarred for life, but I still feel that I let him down because I bowed to my sense of powerlessness in the face of what I see as senseless bureaucratic rules.
  6. Update the profile as regularly as possible/necessary as this provides renewed reasons to present the profile again and reinforce the importance of what it contains. One of the regular staff members at my sons’ child care centre is leaving today, so her replacement will be getting to know the boys from scratch. I was already aware that their profiles were becoming outdated, so this provides the perfect opportunity for an update.

 

I’d love to hear any other tips for making the best of handing over one-page profiles in new settings. In spite of a repeated sense of vulnerability when doing this, I am convinced it is well worth doing. The more people and places that are introduced to one-page profiles, the easier it should be for others trying to advocate for themselves in settings where there may be barriers to retaining positive control. For anyone reading this who is particularly interested in how best to support children with medical procedures, I recommend a look at a book that I have found incredibly helpful through this process. It is called Everybody Stay Calm by Angela Mackenzie, and has practical, evidence based information about parental role in these situations. There is also a website http://www.everybodystaycalm.com/

 

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