Bloggy buddies, you were right. The red and sparkly nail varnish kept reminding me that I could do it. I could deal with airports and trains and taxis and people. I could find my way from one spot to another. I could talk to people. The anti mad tablets worked their wonders, and my nails kept reminding me I was brilliant, a bit like the ‘Yes, you can’ I’d drawn on all the mirrors when Girl2 was anxious about school transfer procedures.
I’monlyslightly and I were presenting at a conference Future of Health, which had a focus on long term conditions. A key feature of this event was the role played by patients. Patients presented at most seminars, had priority in asking questions, and had a room set aside for us with sofas, tables and chairs, flip charts for recording impressions, twitter names and taxi requests. Patients weren’t just allowed or encouraged to attend; we were actively facilitated. I know the overall feedback will include gripes and grumbles, but it was a positive inclusion, something to be developed and rolled out to other settings. I really enjoyed the welcoming atmosphere and the opportunity to meet twitter patient buddies. I was hugging folk from the sheer joy of connecting in person. I was a little awestruck too- these folk are hugely impressive, and they were chatting to me! They knew me! (preen feathers, flash sparkly nails)
However, I’m not sure what the health professionals got from the event. In terms of patient participation, there was a sense of preaching to the converted. The head of NHS England, Simon Stevens spoke, reminding me of Nigel Millar from Canterbury, New Zealand, talking of the need to change the health care paradigm, or else build another 20 acute hospitals, that they wouldn’t then have the resources to staff, equip or maintain. In this aspect, the small size of his district was an advantage that NHS England doesn’t have. I don’t know whether it was by virtue of his position, his previous decision making, or his personality, but Stevens appeared to make the whole room bristle while saying nothing very controversial at all. Any chance he had was lost when he failed to answer a questions from a patient, responding with ‘Well, what would you do?’
Our seminar was on the theme of health inequalities. Predictably, we spoke about rare disease, and the power of working together. Less predictably, we kept to our allocated time. The other speakers, from NHS, proceeded to fill the rest of the seminar time, talking about their projects, not being clear on how these addressed inequality, and leaving no time for questions.
The reality of living with long term conditions was very stark for us. Imonlyslightly experienced a flare up of symptoms leaving her in such pain that she could hardly move or think or speak. I suggested that she return to the hotel and hide in bed, but MsDetermined was having none of that. Somebody was paying her costs for being there, the least she could do was give her presentation, share her experience, answer the questions. The questions that nobody got a chance to ask, because the other speakers ran over time. Flights, trains and accommodation were paid for, but still, her time, effort and health were not valued appropriately. She was struggling and suffering, and for what?
(And all this while another ‘patient’ speaker was discussing how she wasn’t a patient at all any longer, she’s a professional. I am challenged by this, thinking that that if she’s now a professional rather than a patient, what’s she doing on the comfy seat? Shouldn’t she be encouraging others to step up, take the chances she had when she was a patient? I don’t know the woman or her circumstances, but her comment jarred.)
Ben Goldacre spoke at the end of the conference. Read his books. Go and see him if you can. He gets more words into a minute than anyone else I’ve ever seen, but he talks a lot of sense.
Like the middle aged wrecks that we are, we ate at the hotel and retired early. I’d wondered about some Saturday morning culture, but opted for a lie in and leisurely breakfast instead. And we each wondered where we were going to get a wheelchair from, and how we’d manage the notoriously disability unfriendly London Underground. We took little steps, kind people lifted a bag down stairs for us and we got where we needed to be.
Surviving the few days away without anxiety meltdown or cognitive collapse was a huge achievement. We are, in fact, #strongertogether.