Category Archives: Experiences

A WOW Day at York Festival……..

Yesterday was looking to be another WOW day at York Festival….I was asked to speak in the afternoon and found out I was being introduced by my lovely friend from Radio York, Jonathan Cowap. They’d offered to send a car to pick me up but I just love the bus trundle to York through the Yorkshire Wolds, so took up their offer of a lift home instead as they were due to take us for a bite to eat afterwards and that would save me making anything when I got home 😇

I just havn’t had a clue what to wear this week as the weather has been staggeringly mixed. My heating even surprised me by coming on automatically this morning 😳…….so I went out for the village bus first armed with my raincoat and found it to be gloriously warm🙄……….so that will probably end up being carried all day…….🤐

Anyway, the first bus ride into town was made all the more lovely as the traffic had come to a halt as the town cows had decided they wanted to try the grass at the other side…… our town cows…☺️😍

Then the nice bus trundle into York. I had a load of train tickets to pick up so would be trundling to the last stop…..😍 it’s often misty over the Wolds, still beautiful but on a sunny day like today, you can see for miles. And from the upstairs of a bus, it’s even better….

Anyway, I got to York…..picked up all the train tickets for next week and decided to treat myself with a cuppa Betty’s speciality tea……

I went for Pi Lo Chun Green tea, which was really nice. I wanted to try the Ceylon Blue Sapphire, decorated with blue cornflower petals (just because it sounded pretty)…….but the mention of honey made me think it might taste too sweet for me……..a very civilised way to spend an hour . I’d had a stupid cold all week too so I was able to dose myself up before heading to the venue….

I was met outside the library by Beth who showed me into the room and made me a cuppa weak black tea before the lovely Jonathan arrived…….

Me and Jonathan chatted away as the room filled up……….

It was a sell out and so it began. Jonathan gave me a lovely introduction. We’ve been friends since I was diagnosed and we meet on his morning Radio Programme a couple of times a year.

I chatted as I usually do for about 45 minutes talking about this that and everything. There were tears in the audience but complimented by an equal measure of laughter. I read two pieces. The first set in York, very aptly and ended with the funny Billy story to end on a light note.

At the end, people asked many questions…..can’t remember what but Jonathan had to bring it to a close with hands still raised. Books were on sale from the local book shop at the end and they’d actually not brought enough as some went away empty handed, which was shame. But everyone queued for a hug and a chat whether they’d managed to get one or not. Bloomsbury had even supplied these lovely postcards, which had a question for everyone on the back.

I met a lovely Twitter friend, lovely people and listened to their stories and answered more questions. Two women came up to me to say they were nurses I trained at the hospital in Leeds, which was amazing. Two women came up to me and I knew I knew one……when she spoke, in tears, she said – It’s Alison – I realised it was playmate Alison from Minds and Voices – more tears, more hugs……A couple of people had waited outside as the room was full but had come inside just to say hello and buy my book……

Many special stories were related, but one which made my day was from a couple, the wife having dementia. They both waited until the end to come up to chat.
The husband said they hadn’t dealt well with his wife’s diagnosis and had been in a bad place. Now, armed with my book, they were going home to start living……❤️…what can I say……..makes the sheer exhaustion of these events so worthwhile………

The room now empty, goodbyes said, Beth took me for the promised bite to eat and we chatted happily for a couple of hours before the University driver came to take me home. I chatted happily to him for a while before going all quiet. I apologised, saying I was a bit like a Duracell bunny and my batteries had now run out………

A fabulously emotional day………..

A Day at Hexham Book Festival……..

So last Friday, the end of a week away trundling, I found myself heading for the last event. I was heading from Blackpool to Hexham at the other side of the country. I left a sunny Blackpool first for Preston, where I had to change for Carlisle.

The lovely Jasmin at Bloomsbury always sends me a detailed plan, so I’m always comfortable. However I arrived at a chaotic confused Preston as many trains were delayed 😳. No one seemed to know what was going on and I couldn’t even go and get a calming cuppa due to queues and crowds. So I disappeared into a quiet corner and played solitaire for a few minutes.

Once calmer I then looked around me for a smiley person to help. I showed him my ticket and luckily Jasmin had got me an ‘Anytime’ ticket. So he just told me to hop on the first one that eventually arrived. More knowledgeable smiley people needed at stations!🙄

Needless to say the train was chocca due to all the delays but I knew it would only be for an hour before the next change. I was simply lucky and found a seat that would take me and my large suitcase – all the luggage areas were overflowing too🤯……..

Sheilagh Matheson, who would be interviewing me on stage, had said she would meet me at Hexham station instead of the usual car. Was very tempted to get off at Penrith….my stop for Keswick…….🥰…….but knew it wouldn’t be many weeks before I was in paradise again so faithfully got off at Carlisle and waited for my final train.

I think I made the guards day in Preston. When I showed him my ticket he whooped with delight to see I was going to Hexham😳 …..he didn’t know where it was but knew he’d never seen a Hexham ticket before. Apparently they score an extra point if they see a previously unseen destination…..😳🙄……well I suppose they have to brighten their days somehow……..

I’d never made the journey from west to east from Carlisle before and there was some beautiful scenery despite the grey skies….along with lyrical northern names of previously unknown stations – Haltwhistle, Bardon Mill and Hayden Bridge before Hexham appeared…..

Sheilagh meet me off the train as promised and we drove to the venue in the centre of town where we had time for a much needed cuppa. The organiser, whose name has escaped me joined us and then took us into the dressing room before having a look at the stage and doing a sound test. We sat and chatted for a while before it was time to go on stage. There were more people than they’d expected so we were welcome by about 100 people.

I havn’t a clue what we chatted about but at the end there were lots of questions. There was also much laughter, which is alays a good thing whilst not undermining the daily struggles.Usually if I’m on my own I have my talk to look at to remind me what I said, but when I’m in conversation with someone on stage, it remains a mystery🙄

Someone kindly took a piccie….

At the end people were very kind with their applause and I had a queue of people waiting for me to sign books when I went back into the foyer. There were many lovely people in the queue but one remains in my head, a student nurse – my favourite species……..More questions came with the signing and it was sooo nice to meet everyone. The book stall only had 6 books left once we’d finished so I signed those too.

After goodbyes, Sheilagh took me to my B&B. A lovely old house just on the edge of the town. Once I’d got in and familiarised myself with the room I decided not to take my coat off and instead go for a walk into town before coming back to hibernate for the rest of the evening. It was a lovely town and in the centre I found this not so hidden bluebell gem in the park……

Really looking forward to going home after a verrrry long but lovely week……..

Me and Anna in Conversation……

A simple blog for me to end the week as it’s 2 links – firstly:

It’s the last 2 weeks of voting in the Charity Film Awards. If you’d like to click on the link to see the film of me that has made the final and then vote if you havn’t already, that would be wonderful….

Secondly, to an article me and my partner in writing, Anna Wharton, wrote about the process we used and challenges faced when writing my book together.

The day Anna emailed me was a very lucky day for both if us. Because it was going to be such a personal book for me, there had to be immediate trust. It may sound strange, but the minute I met her I knew it would work…..

But for me, the best part of the whole process was that it was the most wonderful experience and through our writing together gained a friend for life….

Here’s the link to the article….

Another punishing but wonderful day in London….

So after Tuesdays exhausting, but amazing day in London, I decided that I would be better off not doing any thinking yesterday…… believe it or not……I was back on the silly o’clock train back down to London, but this time on my own….🙈……I can feel my daughters eyes rolling at this point…..

Me thinks the Tuesday media stuff must have been snuck in at the last minute as even I wouldn’t have given me to early starts to London in a row….🙄…. And I couldn’t cancel yesterday as I’d promised ages ago…..

Anyway the best way to cope with this was simply not to think; I needed to hope that the paperwork out on the side had everything I needed….; I needed to ignore the protests of my body at 04.50 when the alarm went off and just get up without thinking and hope that my ‘automatic brain’ would get me ready for the taxi.

It was a shock to the system to find a thick frost covering the world. The taxi man said his car told him it was minus 5 outside 😳😱 and the roads were icy😳……have I been transported back to winter😳?

I slipped my hand into my pocket and found I must have put in one of my magic tea bag hotties, so ripped it open and felt the comforting warmth beginning to appear…….I must have known at some point it was going to be cold 😳

I was heading for Ealing in London to a Dementia Concern Away Day for staff, trustees and volunteers. I’d been asked to speak at this ages ago by Albie Stadtmiller, CEO of Dementia Concern.

It was the most glorious morning, white roof tops and misty haze and the most wonderful sunrise…..

Luckily for me I had my words to read and I was only staying until lunchtime so I’d manage to get the last village bus home at tea time……it would still be a long day if you count the travelling…

Ealing is the 3rd most diverse borough in the UK, it has a big gap between rich and poor, there are large historical populations of Polish, Traveller and Asian populations. Since 1982 Dementia Concern have been providing information and support services for people with dementia and their carers in the London Borough of Ealing. They believe there are around 3000 people living with dementia in the borough yet, as is common nearly everywhere, only reach a small proportion of these. They are trying very hard to find ways to reach those who may not know of their existence, or who simply don’t know how to get help.

It was a long taxi ride but thank goodness I did as I would never have found my way. I arrived to find it under way with the speakers – ‘Volunteer Link’ –  just starting.

It was in the church centre which was a beautiful room.

They were talking about working with volunteers and we heard from someone about what people get out of volunteering. She spoke of the differences between paid staff and volunteers. Theyr’e not contracted to turn up but often do so out of goodwill and desire. All in the audience were paid workers.

Volunteers need to be treated better than paid staff as they have no monetary gain, so need to be rewarded in other ways. Someone said:

They come to give but get so much back from their involvement’

Wonderful…….they often bring diversity that staff don’t. In this organisation  most volunteers are in their 30’s, which I would never have imagined. The speaker said how retired people often had buckets lists, were working to an older age, and grandchild responsibilities.

Don’t look upon volunteers as a ‘free resource’ – they should never been out of pocket – wonderful to hear 😍 (mmmmm, must ask for my taxi fare 🙄)and expectations should be abundantly clear. Albie paid me in cash for my train fare and village taxi, which was wonderful.

I’ve never sat through a talk around volunteers and it was so interested to hear the pros and cons. Fascinating.

After a much needed cuppa, it was my turn. Think I spoke for about 35 mins maybe, ending with:

:Remember Dementia might be terminal but then so is life so why not make the most of each day and take every opportunity that comes your way. I always think if today is a bad day, then tomorrow may be better.”

I ended by reading a short piece from my book. I could see many light bulb moments on faces and notes being hastily written. They were very kind in giving me a standing ovation before I answered questions. Obviously I wasn’t typing so can’t remember what they asked but it was nice to see so many hands raised. I’d taken my small wheelie case full of books and they were sold in a couple of minutes which was so wonderful and meant I went back with an empty case! Bizarrely some people think I don’t pay for my books and simply make a profit 🤣, but I buy them like everyone else and then ask whatever I paid for them. I always sell them cheaper to students and people affected by dementia and sometimes even make a loss because of this, but hey ho, it means people actually get a chance to read my book.

Someone took the money while I chatted to people and had piccies taken including this one….

They were on the local telly last night as they are up for the peoples projects run by the National Lottery.. Have a read on the first link about what they do, and If you fancy voting for them, you can do so on the second:é

After many people coming over to chat about anything and everything it was time for me to go and for them to have their lunch. Someone kindly gave me a lift back to the tube station and I was heading back home thankfully.

I know I’ve said this many times before, but I really would prefer to die from exhaustion than dementia, and  what a way to go……….

Why are we deemed so worthy of so little….?

Recently I’ve met many people and heard many sad familiar stories. I’ve had emails from people saying they don’t know where to turn to or where to look, even in areas where I know there is support available. People wanting to help themselves but needing support and advice to do just that.

I’ve often said, ‘we don’t know what we don’t know’. It’s so hard to know where to start if you don’t know what’s available and the best people to ask. Many people find it difficult to search on-line and I help where I can but why should it be like this for people diagnosed with a life limiting condition?

I met a speech therapist in Scotland who spoke of the pilot scheme she’s involved in. For people with dementia who have trouble finding words…….brilliant⭐️

When a person has had a stroke and they have trouble word finding they are automatically referred to a speech therapist……why isn’t someone with dementia also automatically referred when they have trouble with word finding?

When someone has had a stroke and has a gait problem they are automatically referred to a physiotherapist……why isn’t someone with dementia also automatically referred when their gait changes…….?

Many people with many conditions who have a problem eating are automatically referred to a dietician……so why, when our taste buds change or we don’t feel hunger are people with dementia not automatically referred to a dietician…….?

Why isn’t our hearing automatically checked at regular intervals for such things as hyperacusis – why did people with dementia like Agnes Houston have to highlight this issue to professionals for the rest of us to benefit?

If I was diagnosed with cancer tomorrow would the phone stay quiet and no treatment be offered? So why when someone is diagnosed with dementia does the phone remain silent……..? Why is it up to us to find the service?

If you’re diagnosed with diabetes, you have regularly check ups. So why are we often discharged from a memory clinic into the hands of our Gp and then simply told ‘Oh it’s just the dementia’ when raising issues.

If someone is diagnosed with cancer people rally round and tell you to fight it. So why when we say we have dementia are we given a sad embarrassing look with no words of encouragement?

Why do we have to try to venture into the maze of bureaucracy to find, MAYBE, what we need? Why is it assumed that charities will plug the gaps?

We don’t know what we don’t know yet many services expect us to find them. Many benefits expects us to know they exist and how to apply for them. When we receive a diagnosis can’t that sort of information be available and not just with a pile of leaflets?


As children we want our lives to fast forward and the thought of being ‘older’ is exciting, bringing us independence and being able to do what we want. We protect our children, we worry for them and most services are there to make sure they develop as they should (I’ll miss out mental health at this point)…….but with dementia our lives can ‘fastbackwards’, we regress to former times. But unlike children growing up, we have no choice or control over the regression. Some carers describe it as being like ‘looking after a child’……so why does the health service not work in reverse and provide appropriate support and help for those supporting and people with dementia as a matter of routine?

Yes I know all this costs money and the funding isn’t there but why is it that people with dementia are ignored and not deemed worthy enough of help? Why do I feel like we’re at the bottom of the pecking order simply because we have dementia ?

Ramble over………

And for my next challenge……..A SKYDIVE!!!!

Last year….well I think it was last year – ha!, I raised money for my local hospice, Dove House, where my daughter is a nurse. For them I walked on fire😳… was amazing…..

So what next I asked myself…..and then an advert popped up for Young Dementia UK!
It’s there 20th Anniversary this year and they decided to celebrate their epic journey supporting people with Young Onset, on the 9th March….

So that is when I plan to do a SKYDIVE!!!!!!!! Soooooooo excited………

I did wonder if the skydive people would decline me due to having dementia but they simply gave me a form for my Gp to complete…..

So, by pure coincidence I was trundling to my Gp anyway for other stuff the following day so added that to my list🙄…..we sorted out the routine normal stuff and then I ended by saying:

Ooooo I’ve got one more favour to ask…..but no laughing……I need you to sign a form to say I can do a Skydive”…

There was a noticeable pause … she started to look through the paperwork….then a roll of the eyes, followed by the signature going in situe and then much laughing……


Once I got the confirmation of the venue and time of arrival, I sheepishly told Sarah, Gemma and Stuart as I have to rely on them getting me there……well it’s at Bridlington air field (did I really just type ‘airfield’😂) on March 9th, but wait for it……..arival time……07.30am🥴…..I apologised to them before I told them the time😂🤣.

So now I’m afraid I need to ask for your help as I need to raise £500🙈😳🙄

I need 500 lovely people to donate £1. Or you may feel able to ask colleagues at work, friends in a book group, or anther group of friends, if they too would also donate £1 and add it as a whole to my fundraising page, telling me it’s from you and your friends and where you’re from?

I’m assured that Virgin accept donations from all over the world!! So people should be able to pay on my page through different currency’s if anyone is willing😊

I know we’re in strange financial times at the moment but any donation, no matter how small would help me raise the money I need, to make a difference to the work being done by Young Dementia UK for people affected by dementia.

You can donate on the link below.


The Last Book Event of the Year…..

Well yesterday, this exhausting few weeks finally came to an end with my final Book Event. How fortunate I was and how wonderful that it was actually in my hometown of Beverley and to top it all, it was a sell out………

It was the opening event to their Festival of Words so I imagine nerves were jangling but I arrived at the venue and was immediately shown into the children’s library where the event would take place. They were still getting ready but people were already standing outside waiting to come in…..

Because it was local it was wonderful that Sarah was able to come along as it was her day off. Stuart, Gemmas partner, also planned his days so that he could come too. Sadly Gemma had to be at work.

The first thing they brought me was a pot of tea😊

I chatted happily with the organisers and a couple of men got the cameras ready as they were also filming the event. They wanted to film me afterwards too answering 3 short questions…….

Sarah and Stuart were allowed in ahead of the audience which gave us a chance for our own piccie

Anyway, as I was mid cuppa, the audience began to arrive and happily waved and chatted to me so I could finish my tea.

Because it was in the children’s library, it was a lovely setting as it was so bright and colourful! I could have spent ages scanning the book shelves.

And they had a wonderful elephant and baby…..

But the time came for me to speak. I was given a lovely introduction and then spent about 45 minutes talking about this that and everything. My analogy of the fairy lights seemed to go down particularly well. I said:

Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us.”

I finished by reading the Billy extract from my book to end on something humerous…..they were warm in their applause and questions and many queued up to speak to me afterwards and have their book signed.

There were some people living with dementia along with their partners and each came to say hello. One man, whose wife was now in a care home, came over and said how, they’d never been ones to talk about it, but after hearing me, he was going to try and hoped it wasn’t too late……One chappie brought me 2 poems and I said I would put them on my blog soon as guest poems. People who read my blog and Twitter friends also appeared – so wonderful.

What a way to end a crazy few wonderful weeks. I can now have a few days chilling and writing in silence…..

As the audience disappeared amongst much chatter and reflection, they filmed me answering their 3 questions. The last question was:

“What’s your favourite word”……..I said I didn’t have one but four…….

There’s always a way’……..

An evening event in Tunbridge Wells…..

So here’s the continuation of my day in Tunbridge Wells. After meeting the 200 children and taking them through my dementia friends session, Anna took me back to her house to meet Derek and Clive…..her beloved ‘boys’.

Of course they were adorable and Derek came running up when he heard the car just like Billy!!

Clive then came downstairs to say hello once we were inside and was a real cutie who enjoyed lots of cuddles while Derek had had enough and replaced Clive on the bed and went to sleep. 🤣😂😻 But not before I took loads of piccies including this one ❤️

We sat and chatted over a cuppa, before heading into town to meet Amanda, who had organised the evening event. We went to the Pantiles District of Tunbridge which is a wonderful area of cafes and restaurants all with outside seating. It was such a glorious day we sat outside too. We all had such a wonderful conversation – shame I can’t remember the detail, but I know I came away feeling good.

As well as the local paper and radio not wanting to advertise the event, neither did the local Women’s Institute…….such a shame they didn’t allow their members the opportunity to know the event was happening. Such is the stigma around dementia that some feel it will be depressing and a taboo subject when in reality, it will be anything but……Yes of course they’ll be sad bits. But they’ll also be much laughter, many strategies to adapt and a story of how the decisions we make in life on how to deal with something bad, determines the experience…….

Anyway, after a cuppa tea, I decided I needed to hibernate for a couple of hours. So Anna dropped me off at my hotel and picked me up again after her parents meeting at school to have tea with her.

Anna had picked up all the cards the children had written after the Dementia Friends session in the morning so we spent a while reading them all – they were wonderful.

But the time soon came for us to make our way to the venue. We were met by Amanda and immediately had to have a piccie

The audience began to arrive, many delayed by train problems. Some people were travelling from London but there were major problem.

Once Amanda had introduced us, me and Anna chatted for what seemed like ages and way past my bedtime. The audience asked some really interesting questions at the end. One person questioned how could I be so articulate and so inciteful? Well I was intelligent and very inciteful before dementia, I don’t suddenly become stupid and less inciteful ……I also don’t have the type of dementia that removes the ability to understand what’s going on around you. I think and hope I answered more politely…..
Certain types leave the person totally unaware that anything is wrong. There’s a difference between those in denial and those whose dementia has stripped away that incitefulness……..certain types create speech difficulty. I’m lucky.

The evening is very sketchy even though I’m typing this in my room on my return. I felt, as the evening went on, that I was fast disappearing. My head was banging from having talked and concentrated so long. I remember talking about how exhausting dementia is and was really feeling it. I’m not really with it as I’m typing now but worry that nothing will be there if I left it until the morning…..

What’s the alternative to not putting myself through all this exhaustion? To sit at home and let dementia win? I don’t think so……..

I don’t often do evening events and this evening reminded me why. But I had a wonderful time with wonderful people who said such kind comments afterwards, which makes it all worthwhile. I remember lots of hugs, lots of laughter, Twitter friends saying hello and even Julia Wheeler, who interviewed me at Cheltenham took the trouble to be in the audience.

But best of all…. I got to spend the day with my buddy in writing, Anna Wharton – wonderful ❤️ I know I keep saying it but I really do feel very lucky…….

Why I prefer to stand on stage alone and read…….

This combination of dementia and success is a very strange concept. The last thing you expect after being handed a diagnosis of dementia is success is a different way……
But I was fortunate to meet Anna Wharton, my lovely writing buddy. Without her help, patience and understanding, my book would never have materialised.

So with the success of the book has come many new opportunities, many new ventures. Book Festivals have become another ‘suduko’ in my armoury against dementia.

I have always loved the written word and since this wretched diagnosis, the written word has taken on a whole new meaning and importance. I’m sure I’ve said many times, that I can type far quicker than I can think and speak the words – the words I WANT to say, not just ramblings. When I type dementia is locked away behind bars, trying desperately to hinder the process but can’t just reach out enough to stop me.

I’ve been very lucky to have been invited to many book festivals, but I’ve realised there are three types.
Firstly where I speak alone and read extracts from my book
Secondly where I’m interviewed badly and ramblings come out of my mouth instead of the words I want to say because they havn’t understood the challenges being interviewed for someone with dementia, brings to the table.
Thirdly, where I’m interviewed by very clever people who have done their homework and know what words to feed me in order to get the sentences I want to say. These are all sentences I’ve said before either in my blog or on TV or radio, so they seem to be hidden away in my subconscious waiting to be released.

So which do I prefer? Well the latter two are rather hit and miss unless I know the person and feel safe in their hands. I’m on stage with Anna Wharton next Tuesday evening in Tunbridge Wells and feel totally at ease. When they go well, they go really well as many have. But the one I prefer is being alone on stage with my own words.

Sometimes when I try and just speak my brain can momentarily block, turning it into a disconnected hole of emptiness…the reason for talking, for being there, disappearing into a haze. That’s when the ramblings appear. They’re often still ok, but not quite the words I want to say.

So when I’m alone on stage, I have my words in front of me, typed by my unhindered dementia mind and exactly the points I want to make. I could never speak those words in the order they appear if I didn’t have them to hand. Yes, I could show the reality of my rambling self but that would seem like a waste of the time when I have a captured audience in front of me.

I want them to hear the important bits, the serious bits but also the funny side to dementia and I can only do that well if I’m left to my own devices…..

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…..”