A Patient Story Workshop……

I’m part of a group that meets every now and then for the East Riding Clinical commissioning Group. Nicki Sparling, Assistant Director of Quality and Improvement, asked me ages ago to be a member and yesterday picked me up to attend the latest meeting.

The aim is  to co-produce a patient story process that is consistent across all organisations and review how patient stories are used in each organisation and for what reason.

I think I became involved when I spoke to the CCG board around the appalling experience I had when I moved to this area……but I might be wrong. I know I spoke to them about something and can’t imagine it being positive!

We want them to hear the reality of the services they provide from the people who experience them.

We got there and 2 people were already in the room. Nicki showed them the tea machine and went and got me Yorkshire tea in a mug 🤣😂🤣😂……brownie point instantly given……

So, mug in hand, many people didn’t turn up. We were expecting people from all over Yorkshire…..Some had sent apologies but others hadn’t…..never good and so impolite.

Lots more from around the region were supposed to be attending but few actually appeared. I often wonder why? Is it workload, lack of interest?

We started this work a year or sp ago but had to be shelved until now. So many changes going on which took precedence. So today we’re picking up the agenda and hopefully it will be actioned.

The important aim is to support any patients who speak to the CCG, or whose story appears anywhere but the other key important point is for something to come out of the situation and it not become a tick box exercise.

I love the slide Nicki showed

And this applied to the Trust as well as CCG.Some areas use Patient Stories already but it would be good to have consistency and having an open mind as to how we give people the option to tell their stories, both good and bad. Videos, someone else reading out, an article or being their in person……lots of options.

We all gave examples of ideas to gain stories. I mentioned the Willerby Research Team and the stories they receive on the advantages of research. We need to have positives and negatives and the CCG can use them to promote ‘listening’. The ‘You said, we did’ attitude for both good and bad stories.

I said what it mustn’t be is, simply collecting stories – no point in that at all. There has to be a value and an outcome for people sharing their stories.
We got onto the subject of payment for people who take the trouble to attend meetings. The staff are all paid, but the lay person isn’t.
If payment is too complicated I suggested using local businesses to donate gift vouchers and have good publicity for them as well.

After another cuppa tea had arrived…(everyone else pointed in the direction of the tea machine…..😂😇, )we went on to talk about the next steps.

As a CCG, they don’t have direct contact with patients but other providers will already be doing this so we need to tap into others already doing this – no point in reinventing the wheel……we want to establish principles and a process that each area can use…..
It can all revolve around permissions and sharing those stories.

2.30pm arrived and I was flagging after such a busy few weeks…..and no more typing exists.

But one final thought came out on how to describe the CCG to people who know nothing – a bag of money…….at the top of a picture and being handed out to hospitals, GPS, and all other services until the bag is empty…..It’s whether the money has been spent in the right places that matter🤔

As Nicki said at the end:

“The Patient Story is the start of the process, not the end…..”

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

5 thoughts on “A Patient Story Workshop……

  1. Continuing to be inspired by all your hard work.
    PS have got a ticket for your Festival of Words talk on18/10/18. Thought you would be pleased to hear it was sold out very quickly on release. Take care xx

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.