The Trauma of the PIP process once more……..

I’m sat here waiting…..waiting for 11am to arrive….sat with dread in the pit of my stomach yet trying to muster a fight…..

It goes against all I stand for to concentrate on the negative, but when the assessor arrives, that’s what I have to do….

The first time I applied for Personal Indepence Payment, some 5 years ago, I had someone who understood. I was naïve, it was a totally alien experience. But the person listened. I showed her the maps and photos it had taken me to get to the meeting. She took note of the enormous effort I’d gone to and I was assessed as in need of PIP to remain independent.

But the reassessment 18 months later, was a different experience. It was demoralising, Because of the positive first experience, I went alone once more, but the reaction was so different. I had the payment taken away from me. I appealed and the process that followed was even more shocking. The Appeal deemed “I was getting better’….if only. They said I could do things I clearly couldn’t and quoted my ability to speak in public for the Alzheimer’s Society was one reason it should be taken away.

My MP was asked to support me but he wrote back stating the benefit wasn’t meant for people like me…..😔 Like so many, he looked at the outward facing me and failed to see the inward me, as a person with dementia…

I was so distressed, so demoralised, so depressed at the time back then. The stress it had caused me and my daughters led me to make the decision that I wouldn’t go to Tribunal – probably just what they wanted. But they got their wish, I just couldn’t do it any more.

In my mind the system was broken. As I said in my blog back then:

Feels like I’m being penalised for trying to remain independent and out of the system – maybe I’ll give up everything and become a burden to the state, then I’ll meet their criteria……”

 Well, this time, it’s the principle that’s the reason for me going through this trauma again. The local council have said I should have been entitled to be exempt from Council tax for years, but sadly I need to be in receipt of a benefit to qualify, PIP being one benefit….it seems crazy that I have to apply for one benefit to be entitled to exemption when my GP would happily write a letter.

Anyway back to this time……My daughter had to complete the form as I can no longer write legibly consistently. The whole process of having to think negatively just isn’t normal for me. It’s times like this when I wish I could switch to being a glass half empty person. Just the thinking negatively makes me feel sad. Having to concentrate throughout each question, on what I can’t do…..

 I realise they have to know the extent of the effect of the dementia, but couldn’t they phrase it in a different way? Couldn’t they find out the extent to which you put strategies in place to cope – this would show them the lengths you have to go to simply to survive each day……😔

Gemma sent me each question by email, so it wouldn’t be too overwhelming; I responded and she added bits she thought I’d missed. It felt like it took us weeks. We had to ask for an extension as they give you a deadline.

The first appointment they sent us was the day I was going on my mini adventure so Gemma had to ring and cancel. She said they were unhelpful and unpleasant, after all we’re not suppose to have a life – not that she mentioned where I was heading as they would have looked at it at face value and immediately struck me off! If we’d have cancelled this second time that would have been it – 2 cancellations and out….but luckily we were both free.

So yesterday, Gemma arrived just before 11. I’d already started tidying and then thought, “What am I doing!”. I’ve never been a messy person ever, so they will always see a tidy house no matter how long it is since I noticed it needs tidying. But I hate strangers coming into my house anyway now, I feel vulnerable and suspicious. Today even more so.

We reminded each other to think the opposite to what we normally do…..where Gemma could speak openly for me as that’s what they want….🙈….how I should concentrate on what I can’t do 🤯..

“It’s an invasion of your well being” as Gemma quite rightly said……

Remembering that they were due to appear between 11 and 1….we sat and chatted…..and chatted and sat……1pm arrived and no sign. So Gemma rang, explained that no one had bothered to show up………….she was told the healthcare persons manager would ring her back…..no clue as to when…….

The warning on their letter clearly shows that if I’d have failed to be there then my claim would have ended……

Seems like one rule for them and one rule for us, sat there getting more anxious by the minute, waiting for them.

To be fair, the manager rang back within 30 minutes and said how the health professional was not available but hadn’t informed anyone…..how can a ‘caring professional’ do that? AND how can a system not have something in place to check in on these people first thing regarding their workload, especially when it’s a common occurrence as many playmates have spoken of them not turning up….and especially when they’re visiting vulnerable people 🤦‍♀️

If Gemma had been rung in the morning and explained why the appointment had been cancelled, it would have been acceptable …annoying but acceptable. But to have the tension and anxiety building during the 2 hour slot they’d given us, waiting when ‘waiting’ is something I find hard at the best of times….well simply inhumane..

The individual on the phone could not apologise enough and it’s the first time anyone has been decent on the phone, as all the others have been quite rude……

But what about the person before me who they’d been due to visit, are they still sat there waiting with no one to ring for them? and the person after me….what if those people are desperate for the money and have no advocate.

I was lucky, I had Gemma with me to hug when the stress turned to tears – not everyone is as lucky as me.

It just reflects the whole system as totally broken, a sham, not caring……it should be a caring process, about finding out who needs support, not this confrontational system we have right now….it’s inhumane to dump all this on people who are already going through the crap of dementia or any other condition….

The appointment they gave Gemma over the phone is in a months time….a month of more waiting and then another day of stress and anxiety….how can this be seen as a ‘caring’ system……

So sad……

 

Why should dementia stop us having adventures…..?

Today is a piece I recorded for Dementia Diaries, so you can either listen to it here

https://dementiadiaries.org/entry/13697/wendy-asks-why-should-dementia-stop-us-having-adventures

or read it below….or both!

For those of you who read my blog regularly you will have seen my recent mini adventure to the far away land off the West of Scotland to the Isle of Lewis. Now many people, when diagnosed with dementia, may think it’s the end of adventures, the end of travelling and having fun…..well I probably had that very same fleeting thought when I was diagnosed over 5 years ago, simply because no one tells you any different.

When Philly Hare said she was going to live on the Isle of Lewis for 3 months, the thought crossed my mind of how wonderful that would be and then she said, why don’t I visit while she’s there! Well I was in heaven at the very thought. But then the reality of the travel hit me. Due to the cost, I’d have to go alone. But why should that stop me? Once there I knew I’d be in safe hands, so I just had to find a way. There’s always a way….

Sarah helped me book the travel. I’d never booked a flight before so didn’t know where to start. We had to ring for assistance travel, which was a bummer, as it meant Sarah had to do that too……but they were very nice on the phone.

I knew I’d have to rely on the kindness of strangers, which I do almost every day. AND on assistance at the airport working well as I wouldn’t have a clue what to do by myself…

But I’ve always said to myself from the start, “Don’t Panic”. As panicking can make the situation 10 times worse. It’s never easy not flapping, but if you just stop for a moment, take a deep breathe and think, “what the the old me have done?”….it usually alleviates the stress and puts some logic thinking in my mind. Usually it’s a case of simply looking for a smiley face and asking for help, which is what I did when I got to Edinburgh airport and didn’t know where to start. The smiley face put me right. I’m always honest with people, say I have dementia and I’m in a bit of a pickle.

When I finally arrived at the airport in Stornaway ready for my adventure, well I knew Philly and Ron would be waiting for me. I often worry about staying with other people so rarely do. But I always trust Philly and sure enough, she had all the doors marked with signs so I felt Immediately safe……

The kindness of others can go a long way to helping us live our life to the max, we simply need others to be kind, to be considerate,  to support us, to enable us to do what we want to do no matter what the risk.

of course, not everyone has my confidence, my ability to just ask. We are all different and need different levels of support. AND, adventures come in all sorts of shapes and sizes. It might be somewhere you’ve always wanted to go, to see, to touch….it’s what the person wishes…..But it’s important not to give up on us and find a way of making our dreams continue long into dementia…

People often say to me, but how do you do it? How can you possibly do what you do with dementia?

Well the alternative is why I find a way. The alternative is sat alone with dementia as my only company and I don’t much care for his company…..after all, our clock is ticking and ticking fast…

 

 

 

Day 2 in London – Dementia Enquirers….

It was a night of sleep, wake, sleep, wake….my eyelids firmly closed in exhaustion from the day but my eyeballs wide awake and staring into blackness…..we’d had a lovely meal the night before, a meal of sharing wonderful stories, sadness, laughter and everything in between …can’t believe I didn’t take a piccie!

My eyelids finally secummbed to the mischievous eyeballs behind them and opened for the day. Showered, I settled down with a cuppa to go through my morning routine – solitaire, scrabble and my new found friend ‘Wordscapes’….just as an extra when my friends have yet to take their turn at scrabble…..

Philly knocked for me at 8 and we went down for breakfast before the start of another heavy day…..but at least my head felt better…even without sleep……🙄…(that’s dementia for you – just no telling from one day to the next)

Over breakfast we had a wonderfully emotional and passionate discussion about Personal Independence Payments (PIP) as I have my next onslaught starting into the system on Monday. The distress and emotional turmoil this is causing for people is beyond comprehension so we decided we need to do something…..Philly wished she taped that conversation as it was so off the cuff so filled with detail from each of us……..

Packed and ready, we met in reception and trundled to our venue for the day…the same lovely one as yesterday…….

Today it was the Pioneers meeting. We sat chatting while we waited for Mhari and Hugh…….we were in a different room today, a smaller one. It was Georges first meeting as a Pioneer and Mhari and Hugh had travelled just for the day.

I asked for a piccie while we were all relatively fresh

Philly started off telling us the plan for the day ..and then briefly spoke about yesterday and the ethics of research and what we might do differently. We will come up with a simple ethical framework to share with the next lot of grants and ask them how they’re meeting our ethical framework…..

We sat and discussed the make up of the panel and agreed we need an academic to sit and advise us but with no vote….someone with expertise in their field who would be happy and understand their role as an advisor ……

We, as pioneers, all volunteered to be on the panel and discussed which academics we trusted to work in the way we needed and who we thought might be prepared to work our way……

We’ll combine ethics and decision making for the next lot of applications for research from people with dementia at our Pioneers in our Woodbrooke meeting in June…

We decided we would call ourselves DEEP Ethics Panel…..this is the start of a much bigger piece of work which will inform the more formal ethics committees and hopefully change and question current processes…….

We stopped for a cuppa and cookie……and moved on from ethics to the 10 new projects that will get funding in June.  Groups of people with dementia from the DEEP Network, deciding what they want to research and applying for a grant.

Today we wanted to discuss the process we had last year and what might needed changing after the lessons learnt from the past year….not that we could remember, but that’s why our ‘able enablers’ are there…..😂

We had 10 decisions to make….so Philly had to keep us on track and crack her famous whip 😂🤣

We went through the list of ideas of what it means to be ‘in the driving seat’ of a research project….the guidelines we expect groups to follow when conducting research while realising that everyone’s contribution could be at different levels of ability…..

Much conversation took place around emotional decisions and factual decisions

We had a quick break then the final session before lunch. We came back and Philly asked me to read my blog about yesterday….which was as much a surprise to me as everyone else!

Philly then fed back how they’d received the numerous emails from the ally academics who attended the first day. They were all full of passion, full of enthusiasm and hope for what we were doing….we know some academics would want to be involved for the wrong reasons, but those allies seemed to get it in my opinion. We all have our different opinions….

We had offers of support from them….many academics find the ethics process difficult and someone suggested finding out from researchers themselves what they find difficult that may help us in our campaign to change the process..and highlight the changes needed.

Before lunch the final item was around an idea from Pachael and Philly about using money still available on a project on Power and Control and what barriers exist from us having control over our lives……we came up with loads of ideas…..lots of food for thought……

Which brought us nicely to lunch in the café…….and me and Rachael had a lovely Celeriac and mushroom soup and warm bread….🤗 hug in a bowl……

We were the only ones in the café….a lovely café with lovely people serving lovely food……a great find of a venue….and they had pictures on the wall, some of them depicting the music of The Beatles…

 

We made out way back for our last hour  before the end of the day…..

For the Funders, the National Lottery, we have to write an ‘engagement plan’ ….who we want to engage with and influence as the National Lottery want to help us…….we obviously want to engage with academic researchers, engage with Universities, with conferences where we can influence a change in views…..

The last idea was around an article for a journal…..Disability and Society journal….

Our final discussion was around the Event in May to celebrate the completion of the first lot of projects…..each of the 10 groups are invited to share their successes and challenges….and hopefully the funders will be there….

I said we needed to end the whole session by having everyone leave with people saying…..”WOW! What’s next??????”

Our last task was to record a sentence about how we feel Dementia Enquirers is going and I said:

The seed that was sown over a year ago, is now growing into a youngster and you can see the adult developing and gaining character. I’m leaving this last 2 days exhausted, but once again full of renewed enthusiasm for what’s still to come….”

 As Agnes said “My tired is even tired….But it’s nice to feel tired and have achieved something…..”  And off we went our different ways home………the days a blur already…..

 

 

Another trundle back down to London….

A busy week travelling this week so yesterday was another trundle down to London but this time for 2 days…..

It was going to be 2 days of full on Dementia Enquirers with the first day taken up by an Ethics discussion – the issues for people with dementia and ethics committees, the barriers we face and possible solutions…..

The second day would be a meeting of the Pioneers – agreeing a process for the next lot of grant applications…..so 2 heavy but fun packed days with playmates, and our able enablers, Rachael and Philly.

Anyway before the start I had to get there…..a silly o’clock start again as I’d decided against staying the night before due to being in York and I prefer travelling on the day and staying just one night. I’m also not keen on travelling at night, which is what I would have had to do on this occasion. I find travelling in the dark disorientating but in the morning, it eventually gets light which makes it more possible.

The taxi people had asked me the night before if I could be ready 5 minutes earlier so at 05.40 this morning I was ready and waiting with my suitcase and the taxi lights appeared. It’s often a quiet trundle at that time in a morning as neither of us are quite awake. It was all going fine until we got to the station, then I realised why they’d asked to pick me up early ….because he had another run for the same train straight after. He started to rush me and rushing me never works. I hadn’t been organised so didn’t have my money ready, so fumbled about dropping coins and getting in a pickle 🙈…I don’t really know how much I gave him and then must have dropped my glove when getting out as I realised I had one cold hand as I stood on the platform trying to get myself back to normal 🙄…..I’m fine as long as people give me time…….but, of course, when others are in a hurry, they forget that…..

The train was on time, I got my cuppa weak black tea and everything was ok in the world again……it was a very busy train though and agitated passengers trying to find seats and arguing with staff made for a stressful journey on an already discombobulated day…..I didn’t feel right, so instead I tried to disappear into my own world and look out of the window …

Soon the daytime appeared making it a much friendlier world….

I got to London in plenty of time to find this new venue….so went for an amble first …..and ended up leaving my stick somewhere 🙈….I’d had my suitcase to balance on so hadn’t noticed until I went to swap hands…so I had to retrace where I thought I’d been. Turns out I had left it in a shop but they’d taken it to lost property 😳…so then had to find Lost Property, then they wanted ID, and to fill out a form 🤯🤯🤯🤯🤯🤯 but they saw my lanyard and decided I wasn’t a risk and let me have my stick back🙏🙄

Because of the stick panic, I was then in a bit of a pickle about being late and ended up getting lost🙈 and Google took me through a housing estate🤪😱…….went the wrong way …but then I spied a sign on a building in the distance – Lumen, my destination. Playmates were there so much appreciated hugs were given all around…..I went outside into the courtyard just to settle my head…

We finallly started and Rachael and Agnes were chairing the day. We went round and introduced ourselves. Today we had many people there, including playmates and academics who had been invited to help us, from a variety of Universities…..

Rachael whizzed through quickly saying what Dementia Enquirers is – people with dementia leading reasearch from the front on subjects WE think important to research. Along the way it’s hoped that people with dementia will learn new skills, such as around ethics today…..

Dory introduced the ‘Jargon Jar’ to emphasise the need to use plain English otherwise you have to pay a fine. I said “or you can write us a cheque at the end’….🙄😂

There’s a barrier around ethics approvals for our projects – do we need ethics approval? And if we do then there are so many barriers to achieving this. But can we create a new system that’s quicker, a more urgent way.

Tom Shakespeare said the problems are that the ethical process is difficult and complex for the professionals so for those with cognitive difficulties it’s even more complex.

Publications will ask where did we get ethical approval…..or won’t publish, so that’s another barrier in having our work taken seriously.

The Pioneers then spoke about the issues ……mine was:

If we can influence ethics committees to see our ability differently – to see our un- vulnerability as they are always trying to protect us.It will dispel myths around our capabilities”

 We want to create our own system, our own ethics process….”The University of the Dementia World” as Agnes said. But as Tom said, we still have to follow certain laws.

 The academics then responded. Someone said there’s a cultural problem as even Junior Researchers have problems when needing extra support and help.

If we create our own ethics process, will it be considered as something to take seriously?

The more noise we can make about being disempowered, the better”…….said academic Lucy.

There were disagreements and voices raised in the room, but we all have respect for one another and could listen to each other’s opinions. We were hearing the frustrations in peoples voices about some of the current systems. I started to get confused as to why we were here and getting a bit discombobulated but think that was just me and my brain on the day…..

We finished off before lunch with what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I was working with Tracey from Worcester Uni. I found this head blowing just to understand what I had to do…….the conversations going on around me made my head buzz. Took me a while to simply understand what I had to do and Philly came along to help and then Tracey tried to help and eventually I could do enough to contribute, but not to my usual standard…..just not a good day for me…Tracey drew the short straw getting me today! 🤪….

Philly went through  all the post its trying to gain a consensus….no easy task!

More discussion followed….on what this process, committee would look like, building trust between people with dementia and academics…but it was time for lunch and a head break…….

After a lovely lunch where the chatter continued……Agnes started off the afternoon to help us create an ethical approval process with people with dementia leading…..

 We had to list step by step what would need to be in place……again Tracey drew the short straw and had me….🙄……but we managed to get through it before the discussion took place.  But in between Agnes did a wonderful relaxation 5 minutes….and then we continued with the last hour….we each fed back what we’d come up with which put altogether was very comprehensive…..Dory’s group got a brownie point for suggesting a 15 minute video to play each time to help us remember what we’re doing and how.

someone said, at the end…”it would have taken others many months and many more meetings to achieve what we achieved today” but they have one thing we don’t…..time…..

There were lots of different opinions in the room and Agnes and Rachael chaired amazingly …….but as Agnes said

We rise above our differences to get an outcome” ……..a good way to finish an intense but good day…….and all I wanted was my hotel room and silence…….

 

A windy trundle to York….

So after Mondays venture to London, yesterday it was the turn of somewhere more local, York. Anna Harrison, Dementia Action Coordinator in York and able enabler at Minds and Voices, had asked if any of us would be willing to attend a meeting of the York Dementia Acton Alliance Steering group. Well normally I’ll leave this to local playmates, but numbers of those available seemed low, so I agreed to tag along. No one with dementia was on the Steering group so we had to put that right and Anna made this possible…

After yesterdays travel escapades, I wasn’t sure whether bus or train was going the be the right mode of transport. The bus over the Wolds in windy weather is a bit of a wild ride, yet the trains to York the day before had been cancelled 🙄…….so I looked at all the timings and decided to gon on the first village bus which would get me into town to see if buses were running and if not, I still had time to trundle to the railway station to see if the trains were riunning…..🤦‍♀️…things we have to do when we rely on public transport…….I knew I’d have to rely on a train back as the buses are awkward after 2pm to get back to the village…….🙈

Anyway, the village bus pulled into the bus station at the same time as the York bus was arriving, so that made my mind up…..although the bus driver asking if everyone had brought their sea sickness pills wasn’t reassuring…but very funny…😂🤣

We hadn’t been out of town long when the bus was being buffetted around in the wind…maybe it hadn’t been one of my best ideas to sit upstairs but that’s where the best views are!….but at least it was a sunny day as we passed the racecourse…..

I began to see what the driver meant about sea sickness pills…….as sitting still in your seat wasn’t an option…..we passed the usual sights of the llamas in the field, munching away at the grass with their winter coats keeping them snug, the windmills having no problem generating power today as they spun round like the clappers, the flooded farm land after all the storms of late and tractors going about their business no matter what the weather…..

90 minutes later we arrived in York, shaken built not stirred ready and noticed the rain that had started was now falling as snow 😳 with the 2 foreign tourists going wild with excitement ….hopefully just a passing shower….because I had time to spare, I stayed on the bus until the station and then trundled to the warmth of the library, the affect on river levels of the recent storms very much in evidence…..

The meeting was all about the current situation in York around services for people with dementia and the way forward so really important. Often at these meetings you find many don’t turn up, but Anna had had so much interest that we’d been moved from a small room into the main hall, which sounded really promising…..Anna had txt me in the morning to see if I needed any support but I knew this venue well in Priory Street – very dementia appropriate venue…

After warming up in the library, I trundled my way through town passing the river on the other side, with the famous riverside pub once more deluged by the Ouse ….and the whirlpool I mention in my book clearly in view….

I arrived at Priory Street to find playmates had made it!!! After hugs, a cuppa and lunch…..we started chatting while we were waiting for the last 2 to arrive. The issue cropped up of those in couples –  “What happens to the person with dementia when the partner goes into hospital…?” Something that’s often not thought of until the problem arises…………the emotion both men showed when talking about this was intense. Eddy showing the guilt he felt as someone living with dementia, and Eric from the point of view of the care partner. The emotion welling up in both these men as they spoke about the pressures of living as a couple when affected by dementia.


Playmates Eddy, Elaine and me with Elaines hubby, Eric

Anna and a few other were there. Also there was a blast from the past, Emily Abbott, who used to be our ‘able enabler’ at Minds and Voices when I first joined…….she now works at Health watch……but lovely to see her and have a hug…..Damian was also there, so just like old times …❤️…..I always remember feeling very sad when Emily left us….

Once 2pm arrived, Steven Burkeman, chair for the day, started off. We all introduced ourselves. There were people from York Hospital, Joseph Rowntree, the Council, ‘Well Being’ service, a Commisoner for Services, Dementia Forward, Solicitors, and of course, Dementia Action Alliance.

I was able to ask if people minded if I blogged and if I took photos. The formalities of the minutes from the last meeting were gone through first……

Cognitive Screening Resources was up next – the tests the medical staff have when looking at the possibility of dementia…….Sonia from the hospital asked some people present to name as many animals as possible, (something we’re often asked to do)showing the stress this can cause when timed…….I always find that hard. The average is 25, but 11 is also acceptable. Sadly mine is always less.  What is normal one day might not be somebody’s normal on another day……So imagine doing the test in hospital, a stressful environment already and you can see the problem.

She then showed the new sensible way to measure confusion – showing whether the confusion is different from their normal state. So they’re actually looking for delirium……

Some are now realising that the usual tests of knowing the date, remembering an address and the normal memory stuff is not a good way to recognise dementia….we spoke of the futile tests we have to do…..the question ‘Who is the prime minister?’ …if you’ve never been into politics, why would you suddenly start taking an interest and know……….?

Anna brought us up to date on the latest stuff from DAA. The local fire brigade are keen to promote their home assessment for people with dementia. York now has link workers who socially prescribe ….and for dementia, social prescribing is key and maybe they could promote Minds and Voices….🤔

The commissioner from the NHS was up next talking about the Strategy for Dementia in the Vale of York. York is the 7th lowest in the country for diagnosis rates…..😔….

The expected number of people with dementia in the Vale of York is around 4.5 thousand yet there’s only around 2500 people diagnosed according to the numbers. There’s a lack of understanding around the value of being diagnosed. Gp’s themselves don’t understand the benefits of diagnosing….the criticism by GPs against York is for not having a clear pathway when they diagnose so they’re now working on a Strategy but not a new strategy as the money isn’t there. So instead they’ll look at what they already have and utilise the good bits to find out what’s needed and what’s missing. We went round the table to give 1 sentence from each person on what should be a priority….

My one sentence became a few items…..Not a timely diagnosis but an accurate one, not just setting targets for diagnosis…….  not being abandoned at diagnosis…..when we get the diagnosis our family get the diagnosis too. Making it known what is out there – we don’t know what we don’t know. There can be a million good services out there but if people diagnosed don’t know where to start or where to look, then those services are wasted.

Many good sentences came out of that one bit of the meeting to inform Sheila from the NHS Commisioning body…….

Sheila then said that she was organising a gathering of 250 GPs focusing on dementia….and we all immediately came to life and said, ‘Let us at ‘em…”😂🤣

Anna and Lissa from the DAA then spoke about a mapping exercise day, where what is available is mapped, and evaluating what’s out there and where the gaps are. I suggested each service providing data on numbers and success data etc ……

Carl was the next on the agenda….firstly talking about an app called House of Memories for people with dementia. Objects or photos from the past  can initiate conversation with people with dementia. It’s currently been used in Liverpool and is coming to York in April to be made available in December …..

Carl then went onto Age Friendly York, a worldwide initiative through the World Health Organisation. Then ‘Your Time’ from a leisure persspective and how easy it is to access those activities.  What’s the experience of those moving from work to retirement and the issues……..so really ‘Age Friendly York’ should be ‘Friendly York’ as Steven said……

Anna finished off with the Blue Badge Issues in York for people with dementia…..only people with severe dementia are the ones likely to get it……so more action will be taken…..I spoke about the Post Code Lottery that exists once more as some areas interpret the guidelines more realistically than other – York being a poor area.

It was an exhausting meeting as soooo much came out of it and Sheila from the Commisioners actually said it had been the best meeting she’d attended in ages….so now lets see actions come as a result of all the good words spoken for the people of York…..as Anna said on a txt to me this morning…..

“ It feels like a turning point in changing hearts and minds..”

Let’s hope so…..the passion to change was certainly in abundance today…..

 

After Storm Ciara, a trundle to London….

The weekend had been one of 2 halves…..Saturday, getting everything done before the storm arrived in case of power cuts and Sunday watching the storm develop…..

I’d done so much brain work on Saturday, planning my week, booking future train tickets, that by Sunday all I wanted to do was snuggle….I couldn’t think what to do about Monday….how to work out a plan B, so I did just snuggle, doing nothing in particular …

Before I went to bed Sunday night I did think to set alarms to check the trains were running as I was on the first train of the day and the taxi was due at 05.45…..an alert came through from the trains saying they were all running on time……well they were at 02.30…….🙄…..maybe that’s when it all went wrong, after all, it was me travelling…….

The stood by the window looking out for the taxi lights, being entertained by the owl in the paddock across the road hooting away in the morning dark…scanning my eyes for sight of it’s eyes or flight, but it remained hidden out of view, teasing me with it’s twitterwoos …..

I suddenly realised the taxi was late, pressed my phone to ring the number ( as they recognise my number, no need for explanation) and the voice at the other end confirmed my worse fears of the driver having been held up at the previous address…🙄…he wouldn’t be there in time to get me to the station😳…so would have to take me to Brough furher down the line to pick it up there🤯….not a good start but nothing I could do….

He eventually arrived, not someone I’d seen before. He explained the woman before me, going for the same train as me, wasn’t even up when he’d arrived🤦‍♀️…..he was due to Have finished half an hour ago, the reason why I’d never seen him was because he was a night time driver…. but had been asked to take me to Brough 🙏…..

Now taxi drivers always take the country roads to Brough and my little brain immediately thought, ‘was this a wise decision after storm Ciara….🤔….but he must know what he’s doing…🤪…..well to say it was like traversing a dirt track was probably an understatement….so much debris to navigate, fallen trees to swerve around and then a huge snow storm decided to add to the complications!….I simply held on tight….🙈……when we finally got to the station, I asked for my receipt, as usual, expecting it to be 3 times as much as usual, and he said…

“The office said this one is one the house, no charge…”….bless……..

I saw the waiting room was crammed with people….now this is a little station in the middle of nowhere but because all the trains stop here, has a sense of it’s own impotance….I saw the reason why so many people, as I squeezed myself inside out of the pouring snow/rain…


Cancellations and Delays…..😳

This wasn’t a good start to my day but impossible to change my mind stuck in the middle of nowhere with no way of getting home again. I just had to sit it out with everyone else….turns out it wasn’t due to the previous days storm but to a broken down train blocking the line 🙄……thankfully ours arrived eventually whereas others were cancelled…..

So here I am typing this on the train now….

I was heading to London for meetings at Dementia UK, the people that are responsible for the wonderful Admiral Nurses, specialists in dementia. Dementia UK IS Admiral Nurses…..The 2 phrases are often thought of separate but they are very much together……They are the only dementia charity who train specialists nurses, so, to me, more knowledgeable, and much needed in every area. At the moment they are a post code lottery, just like most support for people with dementia….but they have a wonderful helpline staffed by the qualified nurses too…you can find out more here along with their helpline number at the top right hand side…

https://www.dementiauk.org/

I was due to be at the first meeting in the morning to discuss the Strategic plan for the next 5 years  and another in the afternoon, about how we could help publicise and promote the need for Admiral Nurses, but something told me to go back early …🕵️🧚⚗️…….I would see how things were looking……..

It was dark when we left but as the world started to appear the devastation caused yesterday became very apparent. The storm may have swept through but in it’s wake had left flooded landscapes all around, hard to tell where rivers end and land begins…..

It was still breezy outside. I could tell by the way the train was buffeted in the wind and the draft going through the carriage 😳😱🙈

Anyway we eventually got to London, only a few minutes late! Think we must have had a tail wind blowing us down…….but we got there. I made my way to Aldgate where Toby Williamson, the project manager for the ‘Lived experience Panel’ would meet us…..


The old alongside the new in London….

It turned out that Toby was just meeting me! as others couldn’t make it for one reason or another, so I didn’t get my hug from playmate George.

The meeting was being held at Whitechapel Art Gallery and as we walked in we had a sneak preview of the exhibition starting that day……beautiful………we went into the room to be met by Hilda Hayo, and Paul Edwards……so I did get hugs….also there was a Twitter pal who I hadn’t met before, Sarah Russell who now works for Dementia UK as a practice facilitator for the charity.

Paul, Director of Clinical Services, welcomed us to the strategic workshop. Obviously I can’t type about the discussion, but it was all about deciding how to stake their claim in the health field about the value of their services…..Me and Toby there were representing LEAP (lived experience panel)…..amongst the meeting were Trustees, Comms people, fundraising, business development, HR, and many others…..

It’s rare to have so many people from different teams together, but it was all about how all teams can work together for the next 5 years, but today we were focusing on Year 1….

Sarah Richardson, responsible for the strategy led the day…..

Charities often have to think of the social and political climate and how it might impact on their plans….no more so than now….

The uniqueness of Admiral Nurses lies in their expertise in caring for people with dementia. I’d like to think that my daughters would have access to an Admiral nurse further down the line. Someone to support them, to advise them, to simply be there. At the moment they don’t exist in my area and it’s a post code lottery from county to county, but one thing is for sure….they are a NEED not a luxury…..

We sat round our tables and had an hour to discuss the different elements for the first year.

The lovely Suzy Webster, from the LEAP group had arrived by then so we focussed mainly on embedding the LEAP group into the organisation and what the Opportunities, Risks, Challenges and Resource issues for doing this were…..

We had a wonderful discussion and wonderful feedback session and the phrase of the day went to Twitterpal Sarah Russell, who called members of LEAP, those with lived experience as having:

Practical Wisdom”…..a wonderful line to end on…….


Sarah, Toby, Suzy and me…

I decided not to stay for the afternoon workshop as the trains were all in the wrong place after yesterdays storm and liable to cancellations. I wouldn’t have got home until 9, which would have been ok if everything was normal but I’d taken a peek part way through the morning and noticed the first train of the afternoon had been cancelled so decided to call it a day.

The problem was, I was booked on the 17.33 train, so wasn’t sure if they’d accept me on an earlier one. I got to the station and found a smiley person who might be able to help and she took me to customer services. They then phoned through to someone, who came within minutes and escorted me to the next train, told the guard I could travel and found me a seat……..wonderful…..kindness really does cost nothing………AND it meant I would get home by 6……..❤️…soooo glad I made that decision to leave early as heavy snow started to fall as we ventured north…..😳..

 

A New Musical on the Horizon……..

There I was on Saturday, relaxing at home after my mini adventure….I’d decided against a trundle into town on the village bus and instead decided to get stuff ready for the busy week ahead. In the UK we had Storm Ciara heading our way, so I thought I’d better print instructions and get sorted just in case we had power cuts on my usual sorting day, Sunday…

I’d finished one hour of sorting, when I decided to snuggle down for a rest and a listen to a podcast with a cuppa, when suddenly my email sprang to life….it was a reminder from Michael Smith saying how they were on their way and looking forward to seeing me at 2pm in my OFFICE village café…😳😱🥵🤯……totally forgotten….hadn’t looked at my calendar as I rarely do anything on a Saturday 🙄…..

I quickly emailed back saying how I was looking forward to seeing them and a good job he’d reminded me 🙈….I then set reminders and alarms so I didn’t drift off into my own world and forget again!

These 4 young folk had visited me last year, when their idea was just a seed slowly growing, and asked if I would help after having read my book.. They all have some close connection with dementia, making it all the more special and important for them.

They wanted to make a musical, called, Once Lost, which would show the audience what it was like to live with dementia.

Well Michael emailed me a week or so ago asking if they could all come up from Cambridge to show me how far they’d got……I trundled along, my alarm having reminded me, yet again 🙄 to the village café where they were already and waiting. After hugs and them reminding me what happened last time, they then allowed me to listen to the main song of the show……..WOW……it was just beautiful with amazing words which captured perfectly how I live in the moment….they are sooo talented.

They are auditioning for the 5 roles now and it’s a wonderful opportunity for people simply to be involved in something special and they’re hoping all the money will go to charity.

I did try and point them in the direction of the right charities but obviously that will be their choice.😂

To say I was ecstatic for them is an understatement as they’ve managed to secure a week at the Edinburgh Fringe Festival in August! 17th – 23rd Aug to be exact and each performance lasting about an hour and is in the daytime.

It will show both sides of the story, from the person living with dementia and from the care partners side. Once they’ve cast the roles we’re hoping I can meet them and also hoping I can see a performance before it goes live…..and, who knows, maybe see a live performance in Edinburgh……….just can’t wait. Obviously I’ll write more blogs and maybe even a review if I get to see the performance before it’s at Edinburgh…..

I wasn’t typing while I was with them, so most of this is from the paper they left me with the words of the wonderful song, and from their website which you can look at here

https://smittenfoxproductions.com/oncelostmusical/

You can also look at ticket information here..

https://tickets.edfringe.com/whats-on/once-lost-a-new-musical

But, of course, I did remember to get a piccie of us….

 

 

My Journey back to the world I’d come from……

Sorry my blogs are all out of sync, and I’m disturbing your Sunday, but I had so much to write for my mini adventure that this last one is from Thursday and was the day of my morning flight back…..

I had a txt from Philly at 6 asking if I was awake and, of course I was, so the tea fairy appeared for one last flutter…..it turned out Philly had been awake since 03.30 so had done a whole days work already!

We’d decided the night before that our final outing would be to the bird hide a few minutes walk across the field from her house…..so just as it was getting light, we ventured across. At first sight it felt like nothing was there to see but as our eyes got used to the scene before us, it was alive with birds……it was so peaceful, so calming, so wonderful and we could have stayed there all day. What we really wanted to see were Curlews as we’d seen some about the day before but they must have been having their breakfast elsewhere……I was trying to use my new camera to zoom in, most didn’t work as I should have had a mini tripod, but here’s a few….

As time passed we decided we really had to leave our peaceful haven and for me to finish packing. Terry and Philly were going for a long walk after dropping me off at the airport so they went armed with all their paraphernalia………

Because it was such a small airport, there was no need for them to wait with me so after hugs and goodbyes, they went off on their venture and I looked round working out what to do. The check in was easy enough and she had it down that I needed assistance. However, that didn’t include through security at Stornaway so I had to watch others for a few minutes to see what I had to do. Usually someone is there to tell me and sort it all out, but not here. But the security person was very patient and helpful, told me what to do and then someone helped me put everything back together at the other side.

I came with 3 other passengers on the flight there, but the plane was full on the return journey, even so it was only about 20-30 people I think. They helped me on first but this time my suitcase had to go in the hold – last time it simply went under a seat! ….but they assured me it would be waiting at the bottom of the steps when I got off.

After take off, the sun appeared with the sea below and we said farewell to the beautiful island. It’s not a ‘pretty island’ but it has a rugged beauty to die for…..

The mainland soon appeared, the captain announcing as we flew over Ben Nevis…..once again the beauty of Scotland below stood out beneath the clouds with the propellers once more appearing on the piccie….

We arrived 10 minutes ahead of schedule – probably helped along by the Stornaway winds 😂

The Assistance at Edinburgh surpassed itself once more. As promised, as soon as the doors of the plane opened, my case appeared at the bottom. Everyone else had to go inside and queue by the carousel! ….also waiting for me was the assistance man with wheelchair, a very smiley, very friendly man. He asked me if anyone was meeting me and when I said no, asked how I was getting out of the airport. I’d wanted to go on the tram…..so he simply said, well I’ll take you to the tram stop then, and even helped me buy a ticket on the way…❤️…

He sat me down on the tram before heading back into the airport….I told him how Edinburgh’s Assistance has been the best I’ve experienced so far and it made the maze of an airport more manageable…..

Mr ‘Jobsworth’ appeared to be on the tram, insisting I put my suitcase on the luggage rack even though I was the only one in the carriage….it was much safer beside me than it was rolling about on it’s wheels in the empty luggage rack…..🙄…it also meant I then had to set an alarm to remember to take it off once at Princes Street 🙈…..

Anyway ……I got to Waverley station and only had to wait a few minutes before the platform was given for my train and I settled myself down for the journey along the beautiful East coast to Doncaster……

 Once I’d arrived in Edinburgh and the roads were once more full of traffic, full of people, it was like having been transported to another world, and now as the train speeds through the from Edinburgh back home, it’s as though  I’m in a time tunnel being transported from one calm remote world back to the chaos of another…..memories fading fast of my mini adventure……but I still have my blogs and piccies……

My final full day of a wonderful mini adventure …..

Following on from Fridays blog…..I’m having to intrude in your Saturday world in order to fit everything in before the chaos of next week starts!

We arrived back home after a fabulous supper with Playmate Ron, his wife Karen, daughter and friend. We were all exhausted from the day and I snuggled into bed. No need for curtains,  no lampposts, meant I could see the stars as so little light pollution on this magical island.

It was 7am and as I was typing away on my keyboard, there was a little knock on my door, asking if I was awake, and in walked the tea fairy bearing a pot of tea and a mug….❤️…I really am in paradise 😂

Terry and Philly were going for an early morning run so while they were out I showered and was up and ready for their return….

After a relaxed breakfast with Philly and Terry, me and Philly went out into the wild day, staying local today. We headed for Eoropie beach first……WOW…….took my breathe away….we held tight onto one another, balancing tacross the stones and stream, not sure who was holding who up and battled our way through the wind to the sea edge across the sand dunes, watching the sand pipers skate along the edge foraging for their md morning snack……….

The ruggedness of the coastline was so exhilarating, our noses permanently running. The beach deserted and no footsteps in sight…….just ours…..

We headed back having ticked that off our list of 4 for today, taking one last look back

Our next visit was to the lighthouse…….the end of the world called “The Butt of Lewis” with a huge bird population…the next land after across the Atlantic is Greenland ……again, more WOW views of stunning wild beauty…

We held each other tight as the drop to the sea was close by and the wind was howling…….just breathtaking and so exhilarating…….I managed to take a piccie using my new toy and zoomed into the cormorants standing on the cliff edge in the distance as though the wind was a mere inconvenience than a problem…..If anyone had any cobwebs, they would certainly get blown away here….it has the record as being the windiest spot in the whole of the UK…

We then stopped at a lovely bay where Philly went swimming last year but today it was all we could do to stand up but again, just wow…we then saw another wonderful rainbow…so common on thIs exposed island but mesmerising each and every time……

Our final tick of the morning involved a visit to St Moluags Church which dates back to the 12th century ….Philly read out the history and suddenly the small tiny church was filled with ghosts of times gone by…..

After a lovely lunch of soup and toast we headed over to the Wobbly Dog for my interview with Mark for Ron’s “Deepness Dementia Radio”. Philly went off to the gym while we did the half hour interview and when she came back we were joined by Ron and Karen….I wasn’t typing but I remember Mark asked me some interesting questions and had obviously done his homework……

We chatted over a cuppa before saying our total goodbyes and hugs and headed back home. But not before a piccie of me and Ron outside the Wobbly Dog sign. Ron holds his DEEP peer support group there….

Once home, we snuggled down in front of the fire for my final evening of my mini adventure after another WOW day of stunning scenery with weather that changed every 5 minutes but the sun kept shining on us just at the right moment……being out in the elements, you just couldn’t help but feel refreshed – battered but supremely refreshed…

Philly had made me so welcome, allowing me to share her adventure for 2 nights.  I’d woken many times in the night, as usual, trying hard to remember the layout outside my bedroom door, but felt comfortable and safe due to the simple image I had in my mind……the sign put on the front door for my benefit saying :

Philly’s House”

Philly has embraced her adventure and immersed herself in island life, just as an adventure should be, otherwise you’ll blink and the time will be over, just as my mini adventure is now over as I fly back in the morning…..it was WOW …..just WOW…..thank you Philly….


#randomactsofkindness mean so much …

 

 

 

My mini adventure…..Day 1…..

Following on from Yesterday’s blog about the flight , we finally landed in Stornaway, a noisy, bumpy, exhilarating flight. The stewardess helped me off the little plane and the airport was so small that I could see Philly and Ron waving……..the sun was shining, which was amazing, as the day before, apparently, had been horrendous and stormy…..!!

After hugs and hellos we took the long route back to Ness …..we went to the most beautiful places, including the wonderful stones called Callanish ….

In the distance we could see the rain falling heavily and a rainbow appeared

It was so good having Ron there to answer questions…..explaining the significance of the markers on the land, identifying the Croft’s, the peat strips, (families have their own peat strip which is cut and dried over summer and used as fuel over the bleak winter), the sea lochs that appear everywhere – expanses of sea water rising from the ground beneath creating inland lakes. The first thing that struck me was the lack of gardens, as I know them. People had land but the bleakness of the climate meant they had to find other ways if wanting to grow things, polytunnels being one. Being a very windy isle, the windmills provide electricity which they sell to the mainland. And this remote rugged island also has super fast broadband, which makes suppliers look really stupid in area with poor access on the mainland. If it can happen on a remote island there’s no excuse for poor internet access anywhere…….All such fascinating stuff….

The island is a Mecca for artists and crafts people of all kinds. It’s most famous craft is Harris Tweed and locals are hired to create the cloth in their own homes, but they must only weave the cloth using pedal power, as is the tradition…

We kept stopping to take piccies and one stop was with sheep in the distance

but they all came trotting along to see us…shame they wouldn’t cooperate for an orderly piccie , so only managed to get 2 of them to pose….

We then went further along and came to the Blue Pig Café, where we left Ron to have a cuppa with his friends, while me and Philly went up to the “black Houses”….ancient houses which were stunning and had views to die for…

We headed back to the café which turned out to be someone’s art studio and gallery…..wonderful………we chatted happily about island life…..she used to work in a hospital as a Chaplain specialising in looking after people with dementia……so we had soooo much to talk about it……Philly offered to pay, but the notion was shrugged off as she’d “invited us in for a cuppa”….

We finally left and made our way back to Ness, at the very north of the island, passed more wild beauty, around every corner another gem of a view. We dropped Ron off and finally arrived at Philly’s temporary abode and my haven for 2 nights…Phillys friend was also staying in his campavan and came out to say hello and came in for a cuppa and catch up of the day.

Philly had put signs up everywhere on doors to show me where everything was……how kind was that……we simply sat, relaxed with some calming music, drank tea and chilled before our last outing for the day……supper for us all with Ron and Karen………..it was a lovely evening, ending with Ron showing me his man cave, his sanctuary, where foggy days could be spent in his own huggable surroundings.

What an exhausting day, but how much we crammed into it so as not to waste a second of this mini adventure…….you can read about the final day on the island on Saturday….long after my adventure is over….