our health system- in whose interest?

I got very irate last week about our health system. This may not seem like news to the regular reader, but it sort of is. I was annoyed by whole new things I’d not noticed before. There’s always more to discover, new ways to be dumbfounded and annoyed.

I spent Wednesday morning at a conference of the Very Important. With few exceptions, they were also the Very Whiney. The region (approx. 1.8 million people) has an unnecessarily complex system- a government Department, a Health Committee that holds the Department to account, a Health and Social Care Board that commissions services, 6 Health and Social Care Trusts that deliver services (including buying in), a Public Health Agency, several other arms length bodies, and a Patient Client Council  which exists to make sure the system remembers about the patients. We’ve had all sorts of reviews, and recommendations, but really, it’s madness and nobody has the will to change it. I tried to make sense of it once, but didn’t get it right

So there I was, intent on finding out how the findings of the latest review were to be implemented. But no. That would be too straightforward. Due to the vagaries of local politics, we don’t have a health minister at the minute. That meant the Chair of the Health Committee got to criticise the Department without comeback. Then a professor questioned the value of the commissioning system. I’m not arguing with that. Then it all disintegrated.

Why wasn’t my profession asked to speak?

What is being done to protect my profession?

Why is nobody doing…?

The level of disengagement from ‘the system’ by the people who work in it was remarkable. The very real issues were somebody else’s fault, so somebody else could fix them. And before anything will actually be implemented, it needs to be approved by the politicians. Great. Even if they were attempting to run this tiny region, it’s clear they’ll never support anything that may result in a change of services in their local area. Nobody in the room full of Very Important staff in health and social care was considering taking responsibility. There was an awful lot of bickering.

I may have been at the wrong event. Perhaps this was meant to be a ‘letting off steam’ session. I’m glad I had a free place. If a charity had paid the full rate £250 for me to be there, it would have been unjustifiable. The organisers made money and 200 people who could have been problem solving in the health service got a morning out to grumble at each other. That’s a good use of resources, don’t you think?

However, that wasn’t my excitement for the day done. I headed off with Ditzy, I’monlyslightly, Chair, Awesome Academic and her mum to a meeting of the Health Committee. Awesome Academic was presenting on our behalf and the rest of us were the support crew. The committee was running late (members delayed by lunch at the conference?) so we had to hang about for over an hour waiting on them to get round to us.

It was possibly even more tortuous than the event in the morning. Awesome Academic and others made presentations and were then questioned. By which I mean that members read out written questions prepared in advance, regardless of whether the question had already been asked, or the information clearly provided in the presentation. One speaker was asked the same question three times. By the third time, I could have answered for him. It was incredibly frustrating- these were the people we’d chosen to oversee our government?

We keep hearing that there is no money to provide services, to support staff. Doctors are flowing out of the NHS, taking early retirement or heading to Australia. There are not enough nurses. Waiting times for urgent neurology appointments can be 11 months. There aren’t the resources to discharge people safely from hospital, which means there are difficulties admitting people. And our so called leaders whine, waste time and pass the buck.

By the end of the afternoon I was considering taking up politics myself. Easy money, and I’d have minions to write the questions for me. I’d be able to doze during committee sessions and nobody would notice.

Surely I’ve already proved my whining credentials?

 

#3 what’s it all about?

Bottom line, chaps.

Family, & friends who are family. We are lucky in life if we have those. We are doubly lucky if we have homes and an income of sorts.

Then what?

Go, bloggy buddies, do your thing.

day 3 of Helen’s 3 day 3 quotes challenge

on not being a threat (revised)

I felt very comfortable waving a placard. I’ve done it many times over the years, but never in such a warm, dry place. A hotel conference room, with sausages and mini quiche to follow. I was inside, talking to the system rather than outside, shouting at it.

I seem to have spent the last few weeks talking to slightly different healthcare audiences. I’m glad to do that because it makes connections, it gets our stories heard, it takes rare disease and patient ’empowerment’ out of a strategy document and puts them front and centre. It’s something I can do.

I’m done now, though; body and brain both weary and in need of rest. If only it wasn’t for that pesky niggle.

Safe. Token. Cosy. Soft.

A gal could have her head turned at these events, what with all the gushing that goes on, with all the people who suddenly see a possible solution to their patient problem. Could you…? Would you be interested in…? Would you like to…?

‘If only we could have 100 of you’, said a well meaning chap, somewhat missing the point. There are many, many, patients and carers doing exactly what I do. They take time away from their families and try to influence. They try to get their voices heard, their opinions shared. They are volunteering for charities and participating in Public and Personal Involvement groups, just like me. And, somehow, the system doesn’t see us all yet.

This week some of the system saw me. Relaxed and chatty with 60 odd insiders. I too was inside. I looked like a useful being.

What they didn’t see was the experience, the tears and heartache. They didn’t see the anger and waste and loss. I didn’t share my clichéd ‘journey’. I wasn’t talking about the hours of learning to work in partnership, the online and real life courses, the mentoring, the relationship building. The sheer effort and frustration of learning to be effective was hidden. The investment by me (and in me) and others, patients, carers, committed public servants and fellow volunteers wasn’t apparent to them. I fell into their line of vision without apparent history or support and that looked easy.

It’s not. Any long term readers will know something of the chaos in my world and my head as I’ve tried to process being an unemployed, unhealthy, orphan. I don’t have the day to day demands that many colleagues have- my family are healthy and I’m not run ragged going to hospital appointments. I’ve been able to put time and energy into learning how to influence. Two minutes on ‘why I have a placard’ could never tell the whole story.

I’ve been talking and talking about the need to get patient voices heard, listened to and valued. That means all the patients. That means providing support- from respite and transport to coaching, shadowing, mentoring, as desired. There are no easy ways out.

Do the work; demonstrate the value.

One white haired, smiley woman cannot, will not, and should not fill each gap where patients should be.

 

why we do what we do

on diagnosis

“When newly diagnosed the impact on the person/ family is like a bomb going off- everyone is stunned, the air is cloudy and you can’t see the way forward. You feel stuck in time, stranded, isolated, victimised, life as you know it will never be the same. The rest of the world carries on around you, and you have to find a new way to slot back into it. This is made even more difficult because  nobody explains to you how to do it, when to do it, what to do if you need help, where to go for help, how to get there, who to ask when you get there.

This is even more of a problem when the condition is rare, because nobody knows about it. It doesn’t fall under any umbrella so there is no system, set of guidelines, leaflet, specialist in place that can guide you.

It is a very lonely, bleak, soul destroying place to be.”

by Eileen,  who is living with a rare disease.

From NI Rare Disease Partnership