adventures in health and social care

It’s an awfully long time since I’ve been able to work. It has taken an equally long time to deal with the feelings of failure associated with that. Feelings of being useless, a liability, being judged, unable to connect with people, having nothing to offer the world. I kept wanting my life back. Even a shadow of my life. A wee hint of ‘normality’.

I found blogging and volunteering. Ways of relearning how to connect, explore ideas, have discussions, make friends. Ways of making a difference.

I’m still vague, unreliable and deeply fatigued, overwhelmed by people, colour and noise. I’ve learned something of how to manage. I have a new ‘normal’ that involves a lot of lying down in a darkened room, rarely driving or being out after dark, and a haphazard approach to domestic activity. The McSpecs muddle through with this. Girl1 and Girl2 know that I used to work full time, but they don’t really remember it. The pyjama clad, sleeping in the afternoon, version of me is their normal.

Volunteering is something I can do for a few hours when I’m awake, or at the computer. During this month, I’ve used those hours to attend events, to try and update myself with what’s going on in our health and social care services. I can learn something, I can raise issues around rare disease, and I can express a patient view. I’ve followed other events on twitter.

It’s clear that there is an issue beyond listening to the patient at such events. In many cases, an issue is actually getting patients in the conversation to begin with. From not thinking that patients might be interested in joining in, to inaccessible language, to prohibitive fees- patients are not being considered in the design of events. While there is talk of being ‘patient centred’, there is little sense that organisers have, so far, applied this principle to their work.

Oddly, the world does not yet work the way I want it to.  Just because I’m convinced of something doesn’t mean that everyone else is. I’m not even a benign dictator. I have to encourage, persuade, collaborate, consider. That’s a process and a half, but maybe, just maybe, the adventures I’m about to embark on may help.

Gandhi quotation

Adventure 1: I’ve been accepted on to a course, Leading in Partnership, being run jointly by the Patient and Client Council and the Health and Social Care Board. Along with friends and colleagues from our charity and patients I don’t yet know, I’ll be learning more about how our system works, and how we can work -in partnership- on promoting patient involvement (yet to be defined). Isn’t ‘partnership’ an interesting word? I’m looking forward to getting started.

Adventure 2: On 5th November I’ll be co hosting an #irishmed twitter chat on rare disease. A wonderful chance to learn from the world, raise issues and share learning.

Adventure 3: All those ‘oh, do we need to consider patients?’ events were annoying me, and, riled, I did something I wouldn’t have done even a few weeks ago. I applied to speak at a conference, and persuaded @imonlyslightly that she’d like to also. Yesterday it was confirmed that we’re going. I’m too excited to panic yet, but be prepared bloggy buddies, you know it’s going to happen. The Future of Health is a huge event in London (get us, jet setters). The biggest of wigs in health will be there. Journalists, broadcasters and awesome people I’ve heard of will be there. And us. EEK. “But, but, how?” you may ask.

The difference between this one and all the other ones was simple, yet huge: “we want to involve people with experience of living with long-term conditions…”

“We welcome expressions of interest from any patients or carers interested in helping to partner with us to deliver a truly patient-focused conference.”

“We can offer:        

  • Support to help speakers create presentations, to develop points and open ended questions for discussion and debate
  • Mentoring support
  • Travel expenses
  • Help with planning / booking transport
  • Hotel accommodation for the night of 20th November near conference venue
  • Quiet space at Future of Health 2014 for those times when you need a break
  • Complimentary food and refreshments
  • Great networking opportunities “

I was dancing with excitement last night. “It’s happening. They want me. I put my hand up and look what happened. Me, I’m brilliant. Look where bravery will get you. Won’t Sheryl be pleased? I’m great.”

After a lot of very little steps, the three adventures that came to light this week seem to make a big leap for me. Now to use that confidence burst and that learning positively.



(Shaggy dog stories, book reviews, baffling the brother, random rants and other regular ‘features’ will undoubtedly return when my head stops spinning.)



how to write a thank you letter

Often, I am either asleep or anxious. I’m getting better at putting myself ‘out there’, less afraid of saying the wrong thing, confident in my knowledge and experience, but still, the anxiety sometimes wins. I either shut down totally or burble non stop. You know this.

Support, calming reinforcement, can come from the most unexpected places.

thank you from NIHRC

Of course it’s a form letter. Every organisation or individual who made a presentation will have received something similar. I hope everyone felt as good about it as I did. I hope FM and @imonlyslightly felt as good about it as I did.

I waved it at Spurs Fan and Dawnriser, beaming, as if it were written just for me. ‘Clear’, ‘articulate’, ‘able advocate’- he means me, he said that about me! I glowed with pride, and decided I could talk to any body, any time, no fear.

In truth, we can imagine that the reality of the thing was somewhere between his glowing remarks and my memory of the presentation, but for now, the reality is unimportant. How often do you get an official letter that actually makes you feel good? That’s not looking for money or blaming you for not being well enough to work?

A letter of thanks that gives a gift of confidence at the same time- I’m going to learn how to do that.

















and now for the legal bit

It was a proper legal thing. A Human Rights Inquiry.

I was dreaming about it- and not in a good way, more in a wake up in a cold sweat sort of way.

I had armour (Kileen’s hand me down heels).

I had war paint (Claudia Winkleman is my eye makeup role model).

I was totally hyper andjustkeptontalkinginthecafebeforehand.

Then a phone call: would we like to be interviewed for local TV about rare disease? Of course we will. AAAARGH. What did I just agree to? What will we say?

We agreed key messages.

We were asked totally different questions. This meant thinking on the spot, on camera.( I haven’t seen what, if anything was broadcast.) I have no idea what I said, but I managed to get one of our key messages in. FM- our leader for the day- is experienced, calm and measured. We needed her.

The Inquiry was running late, which meant we got to watch others give their submissions. Calm, articulate, moving stories. All being recorded on video and by a court reporter.

Eventually it was our turn. We had name plates and water. We introduced ourselves, and I should have realised that I needed to calm down when I struggled to say ‘Progressive Supranuclear Palsy’. Why could I not remember about the deep breathing and happy place stuff when it would have been useful?

FM made our brief presentation. We were ready for the rest- they’d told us what questions to expect, and we had all the answers. We had all the answers prepared and written down in front of us. We may have been anxious, but we were the most prepared people in the building. We had this thing sussed; all we had to do was relax into the flow of it.

They asked different questions.

smiling giraffe, baffled

FM struggled to get a word in as @imonlyslightly and I seemed to believe we were taking an exam and, as is traditional, the question mattered less than our determination to tell everything we knew. We hardly drew breath- a result being few questions. They practically had to throw us out, still talking about the inequalities of rare disease, and patient and family expertise.

The commissioners retired to a darkened room for a tea break and we left, burbling all the way.

The court reporter is the one I felt sorry for.

moving beyond the silos

Northern Ireland is a teeny place. The region has a population of 1.8 million, many of whom know each other/ each other’s relations. In comparison, London has over 8 million people, Los Angeles has 3.8 million, the Greater Manchester conurbation has 2.7 million, Montreal has 1.6 million. For historical, political, and “that’s how we’ve always done it” reasons, we have complex systems for delivering our public services.

The regular reader will know of my developing interest in how healthcare is designed and delivered. I’m active in rare disease charities and patient ‘involvement’ groups. I speak about my own experience, and how the patient voice brings a different, necessary view on services. I’ve found twitter to be a remarkable source of information and connection. It was there I became aware of #ehealthNI14, an inaugural conference launching consultation on the NI eHealth and Care strategy. I asked if I could go. Yes, said the organisers, apparently pleasantly surprised that patients might be interested.

I wasn’t able to attend the whole event, but what I did get to was very interesting. There was a real enthusiasm to move our systems forward, and to recognise the voice of patients. Next time, I’m hoping that patients will be encouraged to attend, that the event will be obviously open to patients from the outset. Wouldn’t it be great if patients were co designing and co producing the conference? And all healthcare conferences? The door opened a little this week, and there seems to be a willingness to keep it opening. I am not the only one who will keep on pushing.

with @Noirin0Neill, @JBBC &@DrStevenKinnear
with @Noirin0Neill, @JBBC & @DrStevenKinnear

The formal talk that I found most challenging and inspirational was that from Nigel Millar, Chief Medical Officer of Canterbury, New Zealand. He explained how, seven years ago, financial and demographic change meant the need to re-examine the healthcare system for their area (about 0.5 million people). They agreed new priorities, new ways of working together and new systems. Get this, the system is designed not to waste patients’ time- and that’s how things are measured. “We saved 1.5 million days of patients waiting for appointments”. Healthcare communities (including 60% of GPs) developed agreed pathways for conditions and then allied health information for patients. Urgent care can be provided by teams in the community, people are being kept out of hospital. There is one budget, so the priority is to problem solve, rather than pass over the issue for another budget to pay for. The push for rapid development came after the 2010 earthquake. I understand that he is cheerleading for his own system, but it was wonderful to hear about a system that was designed around what matters to the patient. Because that allows the system to deliver safer, more effective, more efficient care, and a better experience. It’s more expensive to keep on getting things wrong than it is to design them with the right priorities in the first place.

this is not gospel!
do not take this as fact- my impressions only!

The Northern Ireland system is complex, but less so than it used to be. Conference speakers talked about how they still operate in silos, but that the developing technology is beginning to break those down. Historically the system keeps specialisms separate and information held by geographically based Trusts apart. “Moving a few miles down the road and expecting to have your information come with you? What nonsense!”- those days are, at least going, if not yet totally gone.

I look forward to the next time. I’m sure I won’t have to wait a year to get back in a room with some of the patient experts and healthcare leaders I spent time with this week. Particular thanks to @soo_cchsc and @HmmMoorhead for making it happen for me.