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.
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…
I wanna be the leader
I wanna be the leader
Can I be the leader?
Can I? I can?
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.