another fine mess I’ve got me into

I should be excited, motivated and raring to go. There are new opportunities. But right now, those opportunities feel like a box being ticked on an action plan somewhere. The ‘get a patient voice’ box. Once the box is ticked and the seemingly amenable middle aged smiley woman is at the table, where is the push to keep engaging with patients?

Patients, families and carers are living with poor health every day. We are the people struggling to manage our energy, our medications, or all the appointments. Being ill is a full time job, with no reward, that none of us have chosen. Our physical and mental wellbeing is compromised, and we do battle with the outside world. We need help and support, we need to be listened to, and believed.

And we have to claim social security ‘benefits’. There are no actual benefits to this process, simply paralysing. anxiety and worsening of conditions. There is no ‘safety net’. Never fall ill. Never have an accident. Never get old.

Neil Kinnock, Leader of the Labour Party, 1983
Neil Kinnock, Leader of the Labour Party, 1983

Yet here we are, the ordinary, the young, the ill, the aging, the parents, the worn down by circumstances beyond our control. We’re the ones pushing to be included in decisions about our health and social care.

How naïve am I to think that there’s something wrong with this picture?

The patient voice in NI is weak. Personal and Public Involvement (PPI) improves services. But still, somehow, we with our questions and our messy lives and wide variety of experiences, are often viewed as ‘troublesome’, ‘too personal’, ‘difficult to work with’. Despite policies and strategies and focus groups and for a, PPI is going nowhere quickly.

While the system is slow, there are people within it who know the way forward. They can see the value of patient voices, but hardly know how to get some voices involved. These are the individuals who identify opportunities to involve patients, families and carers in policy making. I have chances to participate.

Why do I feel bad about that? It seems it’s ok for me to talk about the need to have patients involved in decision making at all levels in health and social care, but when I get the chance to do just that I’m freaking out.

I’m afraid of being a token. I’m afraid I’m the wrong person. It’s not meant to be about me, but I can’t not do it. I’m afraid of letting ‘patients’ down. What if I mess up? What if I go native? What if I’m being given enough rope to put patient voices out of action totally?

I know how this guy feels…

The Leader

I wanna be the leader
I wanna be the leader
Can I be the leader?
Can I? I can?
Promise? Promise?
Yippee I’m the leader
I’m the leader

OK what shall we do?

I’m not a leader: my only followers are on twitter and a handful of bloggy buddies. I’m not usually a ‘rep’. I’m just a mouth who’s trying to take all the chances to make a difference that I can, without knocking myself out totally.

Deep breaths, chaps.

rocket ship


6 thoughts on “another fine mess I’ve got me into

  1. You will do great! You obviously have the most important tool needed for this challenge – the ability to effectively communicate. I clicked on this piece out of curiosity when it wound up in my Twitter timeline, and I’ve already read about 4 previous postings. Just now googled “Myalgic Encephalomyelitis”. You are the right person; no doubt about it.

  2. Yes ma’am you are a leader like it or not you’re a leader to us the handful of bloggy buddies and all of your Twitter followers Keep on keepin on Oh an youre Jake’s pack leader woof!🐾kiss him for me won’t you ……PKK

  3. Love the quote about getting a seat on the rocket ship which is partly how I feel when getting opportunities to add a patient voice-mine! I take the opportunity and feel that there are now more people in the NHS who see the obvious benefits of having ‘patients/carers in the room’ in order to get a holistic all round picture of any proposed service change or to get a view as to how things are going in reality.

    I take the view that I can’t possibly represent patients as they’re all different but I can be ‘representative of’ and just being in the room means I can also say I think you need to go and talk to x and x who know more about this than I do.

    I am allergic to being the ‘token patient’ to tick the box and if that happens I’m out the door and I don’t go back. But where my voice is being taken seriously I take that responsibility very seriously as I don’t want to waste really good opportunities to work in true partnership with health & social care professionals.

    I’m fortunate to work as a member of the coproduction group of the Coalition for Collaborative Care a group of people who have Long Term Conditions(LTCs) or carers of people with LTCs and we are supported by a small but incredible team who are getting us in different rooms to offer that ‘reality check’ in health & social care conditions.

    Love your blogs so do stay in the room when you can as your voice is needed.

  4. I’ll bet if we had the time to do the research we’d discover that leaders all over the world and for all time have had similar fears, Fiona. Others have found their place in leadership exactly as you have…they showed up! You have a unique voice because as you advocate for others you are intimately aware of the issues that matter and that level of honesty can be a force for change. I think it’s because “change” is so slowly acted upon, we sometimes feel our contribution doesn’t matter. I believe it does. Just keep going! ox

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