This months Minds and Voices……

Yesterday saw me heading off to York for the monthly peer support meeting of Minds and Voices. I’m usually trundling my way on a bus but this time it was part bus, part car as Sarah, my daughter, came with me. Damian usually picks me up from the train station in York but wasn’t able this time and by pure coincidence Sarah was free – bonus

It was a very unsummer like morning that greeted me but at least the taxi driver was on time. Even the bus was on time so things were looking up as I trundled towards Pocklington.

Me and Sarah made our way to Lidget Grove and, seeing no car in the car park, decided to sit and wait for Emily to arrive……and we sat…..and we sat……until eventually I said I’d just try the door, just in case…only to find it open🙄 and Emily in there having almost finished setting up😱

So we immediately had a cuppa tea before people started to arrive, first of which was Becky and Alistair from York St Johns university who are involved in research around movement for people with dementia. And then the rest of the crew started to arrive and the laughter started. Sarah was in charge of tea😊

We went round and introduced ourselves to Becky. They gave an update on where they are with their plans and said they should be up and running over the next few months. They hope to run exercise classes for people with dementia.

The A Team😊


Next up Emily told us about York Dementia Action Alliance dementia panel. I’m going there on Wednesday, along with 2 other group members, to be part of the panel deciding where they allocate their pot of money and to which community projects to allocate their dosh.

Next we spoke about linking up to TEWS (Tees Esk Weir Valley) user panel. Some of the group went to a consultation at Bootham Hospital, where York Memory Service exists, but they have trouble recruiting people with dementia onto their user panel. So they’re really keen to explore working together with Minds and Voices. We think they could support M&V financially and in return we could discuss topics they want views about. That sounds like a plan to me……..they could refer people to our group since they’re the ones who diagnose people……..🙄

Then the ‘Getting Out and About’ project – our trip to Scarborough. We met with Charlie from Transpennine Express a while back to talk about how difficult it is to use public transport. The train company have now agreed to provide us with a supported journey to visit our twin group in Scarborough in the hope we have a wonderful experience……….travelling from York will be us and the Bradford DEEP group. We’ll travel together and meet the Scarborough group there. Then all 3 groups will go on an open top bus. The whole point is to test out how accessible the journey is. Eddie used to drive the bus so has, amazingly, arranged for us to be met by one at the station. Fish and chips for lunch will round off the visit. Emily suddenly thought that we needed to warn the fish and chip place that we would descend on them………..😳
3 people will be recording the trip – Tony Husband, a famous cartoonist, a Yorkshire poet called Ian McMillan and Ian Beasley, photographer. Very excited…………….

Before we could blink it was lunchtime at which point me and Sarah left, not before having a final cuppa tea. Another fabulous journey worth making….

Emily found these lovely flowers abandoned in the hall so put them to good use on our table….

A new course in October at the Humber Recovery College….

Tuesday saw me staying local…..phew! ……for a meeting with Cathryn Hart, Assistant Director Research & Development, and Camille the manager from Humber NHS Recovery College.

It was a lovely day and Alison, administrator extraordinaire, picked me up from home and drove me to Trust Headquarters where  I met Cathryn. Alison usually has a cuppa tea waiting for me but I had to be patient today, but in no time at all she came into the office with a cuppa🏅

We were soon joined by Camille who went on to explain about the Recovery College.

There’s about 40 Recovery colleges around the country and some in Australia and Japan and other countries. It seems a strange name to me, but apparently it began years ago through the recovery movement and the name has never been changed. I had to think of it as ‘recovering from a diagnosis’ for the meeting to make sense. It’s part of Humber NHS Trust and anyone can attend their courses. It’s based on an educational model, rather than a medical model and person centred approach.

Autumn prospectus will be out shortly….

Humber NHS Trust doesn’t have a criteria for people to attend, anyone in any circumstances can attend, even well people who simply want to learn more. It provides hope and often gives people skills to get back on track.Courses are co run by people affected by a condition, if appropriate. They don’t categorise people, but if people want to share it’s fine. It’s about learning and growing. People may have been unemployed or have mental health issues, or may just want to learn how to use a computer.

There’s a diverse range of courses from T’ai Chi to Wildlife and wellbeing, Challenging Procrastination (could think of a few people who might benefit 🤣) to Coping with change and Developing tech skills.

Cathryn, me and Camille😊

The biggest bonus is it’s FREE!!

It’s ginormous in Nottingham apparently. It’s about having a more meaningful existence. Their doors aren’t closed, and is open to anyone. It’s preventative and is about saving money. So they have courses all over Humber and East Riding.

Me and Cathryn are on the Autumn programme and are delivering a 2 hour course in October talking about my lived experience and the value of research, which will include giving people hope for the future, tips and dispelling myths around research.

I learnt a new word – Kintsugi……..the Japanese believe nothing is ever broken and recognises beauty in something that’s broken.
“ As a philosophy, it treats breakage and repair as part of the history of an object, rather than something to disguise” – perfect description for dementia and something I hope will come through in our session in October.

Here’s a short film about the college if you’re interested:


Pre AAIC Conference…Part 2

I decided to take my lunch back into the conference room as it was all getting a bit much as so many discussions were taking place, which was good but overwhelming. So after a nice lunch,  it was the turn of Kathy McGilton and Jennifer Bethel, University Health Network, Toronto, Canada. It was so nice to meet and share a table with these wonderful Canadians.

Their talk was entitled, Patient engagement in dementia research and their preliminary results.

They spoke of seeking out research that has involved people affected by dementia to assess success
Kathy spoke about research supposedly being of a higher quality if people affected are involved but how much evidence is out there?

They asked do we have any evidence that evaluates patient engagement.
Jan then spoke about the methods currently out there. – approaches, barriers, enablers, impact that this has had.
They looked for studies where people affected were engaged – they didn’t include papers that concentrated on how to engage health charities. Just those involved who’d engaged people affected by dementia.
They excluded those that involved charities, philanthropy, and only looked at papers in the English language.

They eventually found 41 papers that fitted their criteria, the majority of which were from the UK, which was good news.
The slide below shows their which showed the data of their preliminary results.

How were people involved? Steering and Advisory Committees, Co researchers, Co-authors, Focus groups, stakeholder meetings,

Barriers that people identified were times and resources, issues of changing health and cognition, recruiting people with dementia was raised as a barrier, several papers highlighted that those being engaged were in the early stage so not representative of the whole spectrum of the condition.
Research ethics board were a barrier to some as they wouldn’t allow people with dementia to data collect, and insisted they had to have a supporter.

Enablers – logistical aspect, individual needs to allow engagement.
Impact – few papers measured the impact of engagement.

So where does co-design fit into this.Technologically engagement does fit nicely with co-design, but others don’t.

Really good talk by our Canadian friends.

Next up was anna Grinberg-Saul who spoke about the work of the Research Network )of which I’m a member)within the Alzheimers Society and the impact of volunteer engagement in all its work. She went through the variety of roles we have – lay reviewer, research monitor, board and panel members and representative on research strategy council,

Anna then spoke of her findings of the impact of the research network. Impact on volunteers was around the value of contributing, learning about dementia research, using existing skills, we build relationships with researchers, enables peer support.
Impact on researchers – it grounded them in the real world, for biomedical researchers it helps them to focus on the long term impact rather than the biological challenges.
It helps researchers focus on their lay communication skills

Helps early career researchers develop their personal skills through having engagement with lay monitors.

Impact on research – instead of just thinking of clinical outcomes, they think about how it affects the person
Dementia friendly study design – how it’s carried out and how it’s designed.Monitors challenge researchers on methodology – one required a task of colour vision, whereas monitor asked what about ‘visually impaired’
Engagement can bring a new perspective on research data.

The Research Network is likened to a golden thread holding things together.
Anna showed a quote of mine:
“They (the researchers)might have the passion, but it’s still a job, we bring a different personal passion”. It’s a Partnership – it’s like having toast without butter.

Anna finished off with a brilliant slide:

Brilliant slide – 4 cogs, each cog equally important – volunteers, researchers, research and organisation.

The Society gets many thing wrong but the research network is one thing they have right, well almost.

Peter Mittler spoke out about how this should go out nationally and not just be kept to the Alzheimers society as it’s about patient/user involvement for anywhere. It’s about the whole area of user involvement. We should start disseminating to other organisations.

I sadly had to leave before the last speaker, Marc Wortman, due to the time of my train as direct trains are few and far between, plus it was getting to brain drain time.
It was wonderful to be at a conference with people from so many countries, hearing their views and perspectives. Let’s hope it becomes an annual event. The next one is due to be in Chicago next year……..mmmmmm, never been to America😊

Pre AAIC Conference…Part 1

So following on from yesterdays blog, Friday saw me as the first speaker at the pre AAIC conference (Alzheimers Association International Conference).

I’d done a reccie of the venue the evening before so I knew where I was heading and had it logged into my walking app as well, just in case………

I made my way in plenty of time and was met by Anna Grinberg-Saull who immediately noticed they only had little cups, so asked them to find me a mug – instant brownie point!
Many familiar and unfamiliar faces came and said hello, many countries represented here, Canada, Netherlands & Norway which was wonderful to see. It was notably lovely to see Matt Murray from the Alzheimers Society, who I hadn’t seen for ages, and so nice that Peter Mittler was also there.

Colin Capper said the first hellos and went through housekeeping, including the fact that there was due to be a fire alarm😱 Important things like # PPIindementia was the hashtag for twitter (and which I forgot to use🙄)
Patient and public involvement is defined in many different ways. Today, we may look for definitions – research should be with and by people affected by dementia.So how do we effectively involve?

Pauline Tardiff from Alzheimers society in Canada then said hello as it was a joint event between both countries.

Then it was me to be the first speaker, where I spoke about  how research may not be for everyone but it’s our right to know about research and be supported to take part if we wish to do so. Research can give us hope for the future. How overprotective family as well as healthcare professionals can deem it inappropriate for us to take part. What I’m forever saying is ‘To normalise talking would be to normalise involvement’. The public need more information on the true meaning of research. I said how, in my region we have ‘research’ on the agenda of the induction programme for all Humber NHS staff, no matter what their job.

Thank you Matt for the photo:)

I spoke for 20 minutes so said loads of stuff and it seemed to go down very well from the enthusiastic applause.

Next up was Simon Denegri,who spoke about how the NIHR (National Institute for Health Research)were so pleased to be involved here.’From little seeds amazing things do grow.”
He was glad I started my talk about human rights. He showed a slide with a definition of ‘subject’ – a person or things that is being discussed, described or dealt with. He spoke again about the importance of language and showed a research picture that used the word ‘guinea pigs’ which we must move away from and instead replace by ‘Partners’ – research carried out with and by rather than to and for people
Things were well if done in partnership – just as the relationship between person with dementia and their supporter is key, so is the partnership between researcher and person affected by dementia.

Loved this slide. – ‘health has two sides and one of them is you”

He spoke about INVOLVE and how it was established in 2006 – it’s funded and part of the NIHR. Although I must add, that they declined my application to be involved with them ………. INVOLVE tries to facilitate the training for researchers to understand how to involve patients. James Lind Alliance come under the umbrella of NIHR and are brilliant at engaging patients to set priorities for research.
He stressed the point of not involving people when you’ve established your research, involve them from the start.
All evidence shows that if you include patients as partners, it strengthens performance and success.

Nice slide of developing an international network..

Public involvement is a must have. But the next challenge is how can we now make best use of evidence.

Peter Mittler spoke of the need for a finer balance between research on cure and research on care. How can we get more social science researchers involved. What can the biomedical community do to give more support for social science research? Simon said we need to challenge funders to improve the funding given to social sciences researchers.

After a much needed cuppa or two, and lots of conversations with lots of people, it was the turn of Larry Chambers, Direct of research of McMaster University in Canada.He chaired the objectives of the table discussion that was to follow.

Ours was a multi national table featuring Norway, Canada in abundance and UK. We were given the support question. “How can people living with dementia and their caregivers be supported to become involved in research?”
Our table came up with loads of ideas, but I was feeding back to the room so said, what I hope were our main points of:

Everyone needs to change their attitude to research and allow research into everyday conversation. One clinician suggested having it as part of appointments in memory clinics.
Flexibility and approachability – train researchers how to approach prospective participants because not everyone instinctively knows how. Important to communicate and be accessible the findings of the research.

Matts’ group used the analogy of a bicycle – One wheel Process, One wheel person driven. If the 2 work correctly, you have a working bicycle – wonderful!

We have to translate research into practice.Peter Mittler emphasised the part the CQC (Care Quality Commission) can play on ensuring best practice is implemented.

Phew! A busy morning so will leave the afternoon until tomorrow😊

Involving the public and patients in research….

First blog for a while as I’ve had a tricky week or so🙄

Anyway, last Thursday saw me heading down to London for an overnight stay in preparation for speaking at the pre AAIC conference (Alzheimers Association International Conference). The event was described as:

“This pre-AAIC one day conference brings together delegates from different countries to discuss how persons with dementia and their care partners can become a more essential part of research processes. Following a successful event last year in Toronto we invite UK and international guests, to come together in London share examples of successful involvement in dementia, towards bringing common understanding of the emerging science of patient involvement. This inclusive meeting will allow anyone wishing to share their experiences of patient involvement in research through the interactive sessions.”

It was nice having an afternoon train, as it meant I could just catch the village bus into town and then amble to the train station. It was a nice warm day, no hot sunshine, no rain, perfect. Finally managed to get a piccie of the poppy field I’ve been passing for weeks and never managed – not very good, but the red says it’s poppies.

Sadly, once again, I had the misfortune of being on a Virgin train equipped with grumpy crew. I always thought Virgin to be a happy lot in days gone by either that, or I’ve been very unlucky two journeys running. Maybe it had something to do with the ‘borrowed’ train, with no working wifi, or maybe the rubbish tea they serve………….🤔

Anyway I got to London on time and I’d decided to walk to the hotel near Russell Square as it was quite warm and I thought the tube would be chaotic as it was nearing rush hour. It seemed simple enough on my walking map, and I had my app switched on as well.
Goodness knows what happened, but I veered off route……..and then got lost😳. I walked round in circles for a while and then just stopped to work out what to do. I looked around me and realised I was near my publishers. Me and Sarah had been there a few weeks ago and I must have been making my way there😱. I decided to reset my app and head back to Euston Road and start again………….

I soon realised that instead of going straight I’d gone right ……..big mistake.
Anyway, I found the hotel and had a cuppa in my room so everything in the world looked fine again. I then had to go out and find the venue for the morning which turned out to be much simpler. On the way back I ventured into Russell Square to sit for a while out of the way of the hustle and bustle and took a couple of photos….

More on the actual Conference tomorrow.


Annual Meeting of Join Dementia Research…..

Yesterday saw me trundling down to London for the annual meeting of Join Dementia Research Champions. I hadn’t had a very good week so far so I was hoping my head was going to behave in order to get me there with minimum stress as it was a venue I hadn’t been to before.

It was due to be mega hot down south, but I found myself needing a jacket at it was an early start and the temperature was only 12 up north…….🙄

The meeting was due to start at 10.30 so it was silly o’clock start and a very misty hazy morning. But the taxi man was nice and early so the day started off well.
The first train got me to Hull fine and then I realised I was on a Virgin train instead of my favourite Hull Trains due to the time I was travelling. Virgin staff aren’t as friendly as Hull trains staff and sure enough, an unsmiley faced grumpy man appeared for the tickets. I know it was early but a smiley face would have made him and me feel so much better.
The other downside of Virgin trains is that, unlike Hull trains, they don’t serve Yorkshire tea………..unsmiley staff and no Yorkshire tea 😱 so they have little chance of any brownie points.

As we headed towards Doncaster the sun was desperately trying to make an appearance,to cheer everyone up but it was struggling……

I kept being too slow to take pictures of the lovely poppy fields we kept passing😩

Once we got there, I made my way outside but immediately found I’d forgotten my pink ear plugs as I didn’t have my usual coat so walked with one finger in my ear and walking app in the other…🙄

Anyway, I found the hotel and found the room and got my cuppa tea. Andrew Rutherford was there along with the lovely Hilary Doxford.

There were twelve of us from different regions in the country which was very disappointing as there are 40 people nationwide, but the usual restructure of the organisation had left people lethargic so hopefully after today, people will have renewed energy to get everyone back on board.

We eventually sat in a circle and started off by having to do some colouring in…..😳 there were various cars depicting various circumstances and we had to say where we were with JDR by colouring in a car……

We went round, introducing ourselves.

I said I feel isolated and not part of a team. But from a personal perspective, I feel like I’m racing along in my region and elsewhere. Everyone else said very similar things and there were some very consistent themes.

So the 2 major themes of the day to discuss were:
Improving the volunteer experience and growing the JDR community

Volunteering experience –
How do we build a community of JDR champions across public patients and the NHS. We said how we need to get healthcare professionals to become champions and I suggested them having to team up with a person with dementia to get more of us involved.It always works so well when I do that as it makes people with dementia less fearful if another person with dementia is talking to them alongside healthcare professionals.

As for growing the community, many suggested the advantage of encouraging the young to be champions. They have so much energy and enthusiasm. I’m always saying how students are my favourite people😊

I hadn’t realised, but downstairs, the clinical research people were also having a meeting and we were all due to have lunch together but due to a mess up by the hotel, they put us in separate rooms🙄. Me and Hilary went and said a quick hello as there were 2 people from Yorkshire and Humber and I didn’t want them to think I was a no show!

It was a strange meeting, nice to see everyone, but hopefully the next one will be more constructive.

We won’t solve everything in a day but tomorrow will do…..😊

For the journey home, normal service resumed……..trains delayed en route, missed my connection….but won’t bore you with the details..🙄
But the heat of the day had meant storm clouds were now gathering..

Join dementia Research is funded by the Department of health and delivered in partnership with the National Institute for Health Research, Alzheimers Scotland, Alzheimers Research UK and the Alzheimers Society.

Anyone anywhere can enter this photo competition..

Dementia Friendly East Riding, who I support as it’s my own area! have organised an amazing photo competition, “Looking Beyond”.  for anyone, anywhere in the world to enter. It’s based around images of dementia. It can be any photo taken with a simple phone to super tech camera. It’s easy for anyone to take a photo nowadays but the aim is to add a caption that says something about dementia.

Here’s an example of one entry so far

Another one was a simple photo of the moon…

The closing date is August 12th and details of how to enter can be found here. I’m a judge for the competition so bribes accepted no bribes accepted😂

Details can be found here:

Opening of a Dementia Friendly Garden…

Yesterday I was on home territory once more – I’m sure that must be a record – 3 blogs in a row on home turf!
I’d been invited by Suzy Bunton, Dementia Lead Nurse at Hull Royal, to attend the opening of the Dementia Friendly Garden at Castle Hill hospital, a mere 15 minute drive from my home – perfect!

Last year our garden won the gold medal in a local competition we entered on behalf of Dementia Friendly East Riding. It was due to be disbanded, but Suzy, a trustees of DFER suggested moving the garden to the hospital at Castle Hill. And so during the spring they’ve been busy, with the help of students and donations from local garden centres building the garden between wards 8&9 at the hospital.

Sarah came with me and we were met many many new and old friends. It was difficult to type and I was having a bit of a ‘noday’  so havn’t got any detail but I took many photos. Here’s just a few.

The sign from last years garden…

The tin man keeping guard over the tree fairy corner…

And last but not least – teacup feeders for the birds – must get some of those for my garden!

Induction for all Trust Staff……

Yesterday I stayed local again. Cathryn Hart, Assistant Director Research & Development Humber NHS Foundation Trust, has managed to get research onto the NHS Humber Trust Staff Induction day.
I said in my blog yesterday how Michelle Moran, Chief exec of the Trust said on Friday how the Trust is actively supporting research, and allowing Cathryn to talk to all new staff each month at the staff Induction day, reiterates this support.
So today was the first session and Cathryn has given me 5 minutes each month to help sow those seeds in new staff from all directorates – clinical and non clinical.

Cathryn picked me up from home and was amazed, gobsmacked, surprised to hear, I didn’t want a cuppa tea when we got to her office😳. I’d not been feeling too good all weekend and it seems to have taken my desire for tea away😱 but I’m sure I’ll be back to normal very soon.

Anyway, back to today,…….it’s so good the Trust encourages research from staffs very first day in post. There were clinical, admin, all sorts of staff present. We were after the Chief exec so we expected them to still be very quiet but still awake.

All we expected to do was sow some seeds of recognition, after all, we only had 15 minutes.

Cathryn did her bit around the work of the department

and then left me with the final few minutes, during which I said……

“You may be sat there thinking, what on earth has this to do with me, it’s nothing to do with my job? We have to normalise talking about research, to normalise talking would normalise involvement. And if you don’t think research affects you, you may change your mind if you or someone close to you was suddenly given the devastating diagnosis of dementia”

Both our messages hopefully conveyed the HOPE that research can bring to people.

My final sentence being:

“Research gives me hope that my daughters and you will have a better future.”


Shaping a Mindful future……

Friday saw me staying local thank goodness. I could have done with a day off but Nicki Sparling, Assistant Director of Quality and Improvement / Deputy Lead Nurse (RMN) for the East Riding CCG (Long name badge required!) had invited me to a meeting locally. It’s aim was to shape future services for our region around mental health, including dementia.
My area is renowned for having little for dementia and what is there is shaped around a medical model of care, which is totally inappropriate, so I was hoping to see and hear people who want to introduce a social model…….

Nicki had kindly offered to pick me up from the village and arrived on time. It was another dull monochrome morning, which reflected my mood, exhausted from a busy week.

Nicki was nice and early and we arrived at the venue to find a cuppa tea. People who had stands were already there, and I couldn’t resist taking an early morning photo of the research stand with Cathryn

There were professionals from all over the East Riding which was nice to see, from healthcare professionals to the council, to other organisations.

It was a nice friendly place and the ladies even had a wonderful sign above the taps!

Brownie point instantly allocated……..

Damian Murphy, who helps Emily keep us in check at Minds An Voices in York had travelled across the border into my county as he was doing a session on the agenda, showing his film and promoting a family approach.

Jane Hawkins, Chief Officer of East Riding CCG started off the day,
Alex Searle, Director of commissioning went onto the important stuff about tweeting👍

Rosy Pope -Head of Adult Services up next – said they should be asking “what can we do for mental health services not what can mental health services do for you.’ And spoke of the importance of engaging and listening to those who use our services”

We then heard where we they were now from Russell Wenn and Neil Griffiths from the CCG. I was glad to see ‘The New models of health’ looking at people as a whole, an holistic approach.”People don’t fit into nice little boxes”

Neil Griffiths, whose role is to commission services set the scene for the day, highlighting that the tables were representing 3 areas:
Common Mental Health needs, such as depression and anxiety.
Severe mental health, such as bipolar, psychosis, personality disorders
And dementia. Needless to say, I sat myself on one of the 2 dementia tables.

He produced stats for dementia and once again sad to see no figures for under 65s from NHS England. Neil said they were being measured on over 65s, but admitted no figures were available for under 65s……….😔

£7 million had been spent on out of area placements……which obviously highlights a lack of something in this area that should be addressed.

Next up was Damian from Minds and Voice/Innovations in Dementia.

He showed his film “Getting along” to emphasise the importance of a relationship focussed approach. We always say ‘When we get a diagnosis, the whole family get the diagnosis”. Wonderful to see so many people I knew on the film😊
Services often speak to one party or the other, this programme shows the importance of speaking to them both together, to show them how to cope and talk about dementia.

We then had the first round table discussion “What do I need to help build personal resilience.” Nicki was our facilitator.

2 top gaps – no cohesive network of emotional and practical support for the whole family, GP awareness, involvement and knowledge. They concentrate on the medical solution rather than social solutions.
2 top solutions – support network, more GP awareness and the ability to signpost.

Non medicalised service provision was thankfully mentioned lots. A social prescribing service where one size doesn’t fit all.

After a cuppa tea break, it was Michelle Moran Chief Executive of Humber NHS Foundation Trust, gave us a provider perspective. She started off with an interesting fact:
80 years ago today was the first 999 call in London.
Michelle’s passion is about integrated services, integrating voluntary, housing ,health together. One organisation can’t do it on their own, multi integrational
She mentioned how the trust is supporting how important research is and actively supporting – brownie point added.

Next up was more discussion – “Managing Recovery – What support do I need to help manage my condition”
“What support do I need to live as well as I can”

Practical support to be integrated, one stop shop – voluntary, health, fire brigade, police, all working together and pooling resources to offer support as and when we need it. If I need advice on how to make my house safe, housing dept should have those skills. Different doors for different elements for the whole family.

Our table had a good mix of people and I asked them ‘How do we change being so risk averse’. It’s fine to take risks, it’s how to minimise the impact of taking that risk. I fell up my garden steps and immediately had a falls nurse on my doorstep. Whereas I just painted luminous yellow stripes across so I can see the steps.

Lunch time was very nice, lots of cuppas.

After lunch it was David Smith – “Opportunities for productive partnership working with the voluntary and community sector”

1.30 – Brain going early today after a busy week, full after lunch, having a cuppa so no notes on this bit………,

Final session group work around Help in a crisis “What support do I need quickly if my condition worsens”

I was saying I wouldn’t use any out of hours services as I wouldn’t know them and I couldn’t be confident they understood dementia.
AND I couldn’t use the phone anyway.
Crisis intervention may actually cause further crises.

We need alternatives to hospital admission.

The day ended by us putting dots against what we thought we the top priorities. I was glad to see ‘services for younger people’ had lots of dots.

They were saying all the right things all day…….. I just need to see words turned into action……no good hearing the same words at every meeting……..

We did highlight to Neil, who is tasked with writing the new strategy, that since we’d finished at 3.30, that gave him 90 minutes before the end of the day to go away and write the strategy as it was clear what everyone wanted……😊