Category Archives: Training

Ask the people who know….

Following on from last weeks blog about ‘Repetition of Symptoms’ and the comments that arose from it, I felt I had to explain further.

Clinicians use their expertise and medical knowledge to diagnose. But the one question that everyone asks is left unanswered……’What will happen?’

Yes, as someone pointed out, everyone is different. Dementia isn’t kind and doesn’t give a set format to follow….and if it did, it would probably ignore the rules anyway. So clinicians can’t possibly state what will happen – REALLY?
No, they can’t if they look at it from a medical viewpoint, but if they look at it from a social model of care for their patients, how much more they could offer……

Yes this is a brain disease and clinicians can diagnose disease but we, as people diagnosed, need to understand the physical effects on our day to day living in order to survive a diagnosis and not automatically sink into depression and those around us sinking with us…

Clinicians need to think, work and learn differently. Their training must change.

If they’re not willing to move away from a medical model, if they’re not willing to learn more of the reality, then work in partnership with us,. They have the medical expertise but surely we have the social expertise of the reality.
Refer those newly diagnosed as a matter of routine to such courses as the 6 week Minds and Voices course, designed and delivered by people with dementia. We can answer the questions people desparately need answered – the reality, the tips for adapting, the financial questions, the everyday questions about living….

Not everyone is creative or imaginative to come up with simple solutions, not everyone knows where to get help. but many are and could share their tips for those unable to find them themselves. If those supporting someone with dementia hear us speak out about what’s going on in our mind it helps them to understand what may be going on in someone else’s brain who may not be able to, or may not want to, communicate……

The part we can play is equally important as the part played by the clinicians in delivering the diagnosis. But they seem to think their job is complete at diagnosis……why? Imagine if you were diagnosed with cancer and then left to find out for yourself what to do next…….

Someone last week said they felt angry at not knowing their grandma could be having hallucinations, but it’s important to remember that not everyone experiences the same symptoms. It’s being aware of what can happen and how to deal with them in that moment.
I consider myself lucky sometimes as I’ve lost the ability to feel anger – dementia has stripped me of that emotion. I feel happy or sad. Anger can sometimes be good but can also be destructive and usually to the person feeling that emotion.

Dementia is a complex brain disease and the differences in how we experience highlights this perfectly.

I often find random sentences written on post its on the floor when I wake in the morning….things that have been important in the still of the night and written unbeknown to me by me…..the other night I woke to find this one…

Be open to what you learn – you never know when you might need that knowledge”

I’ll keep banging on and hope a few more light bulbs will appear. Too late for me and my playmates, but how much better for future generations…….

Speaking to students nurses at York Uni…..

Yesterday I trundled back into York for one of my favourite visits of the year. THis is the third year of doing this and  it would be the second time me and my daughter, Sarah, would be talking to this years new intake of student nurses at York University.

We spoke to them on their very first day back in September and yesterday we were there again to talk to them for longer. I always look forward to the second visit as it shows whether the enthusiasm they had on their first day remains in situe or whether they’re flagging and in need of a Christmas break.

Sarah picked me up super early to make sure we didn’t get held up in traffic. It was a freezing cold morning and I’d got home late the night before from London due to ‘delayed’ train……..🙈, so getting out of a warm cosy bed was difficult……

The journey was cold but with clear blue sky. I love to see the skeleton trees at this time of year as it shows how wonderful nature is with their perfect shape….

Rob Allison, programme lead for nursing would be meeting us as he always had done, but we were also meeting Alison Smalley, lecturer in Child health, who we hadn’t met before.
We arrived in plenty of time and they’d reserved a parking space for us which saved the hassle of touring round looking for a space. Sarah then gained the brownie point as she got us a cuppa tea😍

Rob came to meet us on time and after a hug and catch up we made our way to the lecture theatre where the 150 1st year students were waiting.

We had an hour and dealt with anything and everything from language to senses and Sarah’s view of life to misconceptions. We ended with questions and laughter as they had to be persuaded that any question was a fine question and once one person raised their hand many others followed. I wasn’t typing so havn’t a clue what they asked but it was so nice for them to feel comfortable asking all their questions.

I remember we finished with laughter as they all agreed to the selfie of us and them….

When I got home I found a handwritten note in my pocket which read:

“Thank you for coming to speak to us. It was very interesting and inspirational. I can’t wait to take your advice and insight into practise.” Charlie😊

How wonderful was that……..❤️

Talking to Senior Hospital & Care Home Staff….

So Wednesday’s blog was all about talking to student nurses on their first day, well on Thursday I was down in London talking to senior hospital and Care Home staff.

Buz Loveday (marvelous name!) from http://www.dementiatrainers.co.uk/ had asked me ages ago if I’d speak on day 1 of a 5 day course she runs. The course is funded by NHS England and is part of a project managed  by UCL partners.

The course was being held at The Wellcome Trust opposite Euston station, so within walking distance of Kings Cross. It’s aimed at “senior hospital and care home staff focusing on developing leadership for person centred care of people with dementia.” It’s a 5 day course and Buz wanted someone living with dementia to:
“help participants understand the experience of dementia and the views, strengths and needs of someone living with dementia in order to keep them focussed on this perspective”
Buz had given me 90 minutes on the programme ……so I’d prepared about an hour leaving 30 minutes for questions and discussion.

The day started off a tad shaken as my taxi was late 😳 and then the first train was held in Hull as one had broken down just outside the staion😱. But they must have managed to drag it out of the way as we were off after only a little delay.👍 I’m convinced they just watch for which train I’m booked on…………

Anyway…….It was a gorgeous day, after several days of rain, which was a welcome relief. So the sun shining on the Humber was a lovely sight

I changed at Doncaster and suddenly realised that I must have gone on the train before the one I was due to catch………🙄 as none of the timings matched what I had on my notes😶
Very weird – not quite sure how all that happened……..but at least it was the earlier train and not the later one!

I then got to Kings Cross, reached in my pocket for my ear plugs only to find I seem to have lost one……..🙈

But one ear plug is better than none…..I was early so had a wander round. I went into the British Library for a sit and to watch the world go round.

Buz had arranged to meet me in the café of the Wellcome Trust, but their signage isn’t good and there were a few Wellcome buildings and of course, I chose the wrong one, but the man was very nice and pointed me in the right direction.

I sat in the café until Buz appeared and took me down to the waiting group who were having a tea break – nice way to start! There were 18 managers either from Acute Trusts, Care Homes, Physio’s, Occupational Therapy, so a real mixed bunch which was nice.
I immediately got a photo sorted out of me and Buz……….

I didn’t want to frighten the managers off by asking for a group photo ..………..

I spoke for an hour about this that and everything else, including the part healthcare professionals can play in supporting us through positive language, promoting research, understanding what happens to our senses, design, importance of talking and ended with my usual advantages of dementia……….

There were many questions in the final half hour and we shared much laughter. Hopefully they learnt the odd nugget or 2 to take back to their organisations, as none of this is worthwhile without it bringing about change.

I’ll be doing the same again next week where there will be 22 to influence and change perceptions……….

I appeared to come alive for that 90 mins but on my walk back to the station I felt suddenly exhausted again but it had been a very good afternoon with many smiley interested faces.

I know this isn’t the ‘Thinker’ but it just reminded me of him……..and me…..

Sometimes I sits and thinks and sometimes I just sits”……

“Fix Dementia Care” Report

The Alzheimer’s society recently launched it’s Fix Dementia Care Report.
“ Alzheimer’s Society wants to ensure that people with dementia receive the highest standards of care wherever they are: in hospital, in a care home, or in the home.
Our latest report has uncovered some shocking examples of dangerous and inadequate care in hospitals throughout England.”

Yesterday I was asked to speak at a stakeholder event at York University promoting the report. After my experience at Hull Royal, I was more than happy to share my experience of health care services……..

It was being held in the Ron Cooke Hub at the uni – a lovely setting surrounded by lakes. I’d never get any work done if I was a student there as I’d spend lo day enjoying the scenery!

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I was met first by Leo Verity, Stakeholder Relations Officer for Yorkshire and the Humber.

Gail Browne, Operations Manager for the society introduced the session. The aim was to get together to promote Fix dementia care campaign and the hospital report and hear about the good practice in Scarborough. There appeared to be representation from Scarborough, York and Leeds – sadly not Hull!

Leo then spoke about the report itself

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There’s a need for fast tracking of people with dementia through A&E which would involve a redesign of the process
High number of people with dementia are discharged into a care home who, with support and planning, could be discharged back home – the place they’d most like to be.
Far to many are discharged between 11pm and 6am. In 3 of the worst trusts 25 % of people over 65 were discharged at night.

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Someone highlighted how the tone of the report is very negative and maybe a more positive reaction would be to produce tool kits to help trusts.A joint toolkit by the NHS and the Alzheimers society. Another person suggested Benchmarking league tables, which is an idea as no one likes to be identified as a poor performer. But whatever is suggested has to be realistic and achievable with good practice being shared.

I agree it’s a very negative report but then from my experience dementia care is very poor.

It was then my turn and I spoke about my experience at St James in Leeds and Hull Royal. More detail can be found on the 2 related blogs.

It was then the turn to highlight the good practice going on at Scarborough Hospital. Pam, an Alzheimer Society Dementia Support Worker spoke first.

They try to reach as many people as possible to give advice and support from a 10 min chat to someone who hasn’t had a visitor, to supporting carers who might be feeling upset about the diagnosis. Pam said they have an extensive social work background so know how the system works.
They liaise with the mental health service, OT’s Physio’s etc and if they hear of anyone from any of the local groups being admitted to hospital they go and visit them on the ward.

“ I can’t tell you how much fun it is”

Here is someone who can help, who isn’t involved with medical care, who is passionate about what she does and is welcomed by the staff. She had what was missing at Hull Royal – a smiley face…….
She said that my point about a smiley face had really hit home as they try and be as welcoming as possible
Education is key and they’ve been surprised how keen people are to learn – they deliver ‘care of the patient with dementia’ within their induction package to Healthcare staff.
Dementia friends sessions are delivered to all roles within the hospital and proving helpful.
Emma George – Assistant director of nursing for Scarborough was next
Emma was a matron prior to this. Her opening comment was that you can’t underestimate what a big impact dementia support services has had on the site.
They’re now writing the dementia strategy

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They used to have the Forget me Not Sign behind the hospital bed but they had to be taken down due to the ethics committee saying it was a breach of patient confidentiality so they now have the flower on the patients notes.

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Personally if people could opt in or out of the flower behind the bed, I don’t see the problem if it improves the care of the patient……..

It was good to end with good news – there must be a way of the NHS being able to share good practice like this…

Sadly, with gatherings such as this I’m always disappointed that the people there are already the converted. The people who really need to hear it are rarely there – very sad and frustrating………
It was a lovely sunny journey home – amazing how a bit of sunshine lifts the mood……

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Conference at The Deep – Hull – with Professor Esme Moniz-Cook

Part 1

Last Friday I was invited to speak at the first conference in my new county. I’d been contacted by Cathryn Hart (Programme manager) and Professor Esme Moniz-Cook (Centre of Dementia Research & Practice –Hull Memory Clinic). The conference appears to have been a means of disseminating the results of research recently having been completed on Residential care and Family Care. It’s title was “Challenge Demcare Dissemination event”.  Here’s a shot of the programme although not sure how much you can see!

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Esme had asked if I’d start off the morning with a talk around misinterpretation of behaviour by people with dementia.

First person I met was the wonderful Warren who is also a Join Dementia Research champion. It was so nice to meet up on what is now home ground for both of us.

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I ‘d arrived an hour before the start of the conference as we’d been told we could have a tour around the Deep before the start of the conference. It’s described as a ‘Futuristic aquarium’. I would have been quite happy sat infront of the tanks watching the fish all day – it was very peaceful. I hasten to add that I was able to walk round before it opened to the public……………they would have had to keep the doors locked for the peace and quiet to have remained.

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It was nice to finally meet Esme as I imagine I may meet her again at some point as a patient or a participant in one of her projects. She is obviously thought of very highly in the world of dementia. She introduced me to the lead neurologist on young onset dementia at Hull royal (whose name I forgot to write down!)
I sat with Warren and after we’d had a catch up he introduced me to June Cooke from Butterflies Memory Loss support group. This service is advertised in the memory clinic and some GP practices. It appears that in this region Newly diagnosed people have a 10 week course on cognitive stimulation therapy (not actually sure what that means!). June attends one session to advertise Butterflies. They also have a session on Join Dementia Research. By chance I sat next to Saba Alam who delivers that talk!. Margaret McHugh –Service Manager for the area from Alzheimers society was also on our table.

In theory it sounds like people in this area have access to good post diagnostic help and advice – would love to see it in practice though to hear the content in more detail. Might have to get myself a place on one of these 10 week sessions – after all I never had any post diagnostic support such as this whilst I was living in York………….It would be good to see if it’s as good as it sounds……

Anyway, back to the conference.

There appeared to be about 100 people from all over the country and from many specialties. The Chair was Professor Leslie walker from Hull University.

Local MP Diana Johnson
Local MP Diana Johnson with Esme & Professor Leslie

Local MP Diana Johnson opened proceedings by saying how she was very proud of her association with Esme and the University. It has a joint medical school with York! . She’s going to sign up to Join Dementia Research and will put it on her Facebook to encourage others – brownie point earned but only if actions accompany her words……. She spoke of how Hull often gets a bad press but how we need to celebrate what’s been achieved around dementia by Esme and her team.

It was then my turn – I began by giving a brief history of my story and my involvement with Join Dementia Research.

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I then spoke of turning round the misconception of ‘challenging behaviour of patients’ into ‘challenging behaviour of staff’. When I saw the headings for all the various talks throughout the day, I was disappointed to see ‘Challenging behaviour of patients’ in most of the titles. Because of this I decided to change my speech slightly and question these headings. I simply wanted to give the audience food for thought. I wanted them to see how offensive this might appear to me. It seemed to go ok but I’ll talk more of my feeling about the conference tomorrow.

What followed for the rest of the day was feedback from the research. First up was Professor Bob woods from Bangor University & co chief investigator of challenge demcare.

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He acknowledged that behaviour is often the issue of the staff and not the person. He gave an interesting definition of challenging behaviour:

“Behaviour in dementia care can be described as ‘challenging’ when it causes distress to the person or others (such as the family carer) thus threatening the quality of life of one or both parties” (Feast et al 2015)

He stated that challenging behaviour occurs in an interaction with the environment ‘expression of an unmet need’ it’s up to the staff to find out far more about the person – aggressive behaviour has a reason.Detail is needed for an action plan in order to make a difference.

What did staff learn – see slide – question is – is that enough?

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Then Professor Graham Stokes of Bradford University spoke – he’s also the global director of Dementia Care, Bupa.

Title: “The Effectiveness of online intervention for Challenging behaviour in Care Homes”

He gave the staggering fact that 40% of all people in care homes have dementia. So for me, why isn’t there more attention paid to the understanding of dementia???

His was a fascinating talk but more of that tomorrow………..

 

Session with Student Nurses at York Uni – Part 2!

Following on from yesterdays blog – after Sarah’s speech we let them have 5 minutes shuffle break as they had been sat listening for a long time.

During the break some brought over mince pies, biccies and cake! They were certainly getting in the Christmas mode. Some has come in Christmas jumpers and I couldn’t resist having my photo taken with this student nurse as her jumper had lights – magic!

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I then finished off our session by talking about language and misconceptions around behaviour.

I spoke how negative words can have such an impact on people in any situation and how positive words have a positive affect. I explained why I don’t ever want to be referred to as a ‘dementia sufferer’ and this struck home with many who had used such a phrase. They now understood the negative impact it could have on people.

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For my final piece Professor Jan Oyebode had kindly agreed to my using her 4 slides from the British Science Festival on misconceptions. They explain how important it is to see things from the persons perspective. How so called ‘Challenging behaviour’ can have a personal explanation – for example, someone may be seen as ‘challenging’ on the ward if they’re up and down all night ‘disturbing everyone elses sleep’. However, from the patients perspective this may be due to having to keep getting up for the loo due to prostrate trouble……….
I stressed the importance of understanding patient/client experience. They’re about to start their first practice in the new year and so much of this theory will then be put into practice.

Rob finished off by looking forward into the new year and then there was a few questions from the students. Rob finished off with a great cartoon.

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In case you can’t read the words, it says:

“Remember – The most precious commodity we ever work with – it’s not the Hi-tech machines and equipment – it’s the patient”

Many students came up to us afterwards stating how various things we’d said had impacted and made a difference to their understanding which was really nice. One such comment was “I’ve always used the phrase ‘dementia sufferer’ without ever thinking how it could be affecting people’s well being.Another spoke about ‘Time’ – never having thought that people would need more time and what an impact that could have on the person but also on the nurse. They went mad on Twitter and I had a lovely email from one of them stating:

“I have walked away from the talk with a clearer Understanding of dementia so thank you so much for that.”

Emails like that make it all worth while. I can’t wait to see them develop as they progress through the course – a fabulous morning.

Helen Roberts. me, Sarah and Rob Allison.
Helen Roberts. me, Sarah and Rob Allison.

 

Session with Student Nurses at York Uni – Part 1!

I’d been looking forward to meeting the students again for ages. For those that aren’t aware, I first met the 1st year student nurses back in September. My daughter Sarah, has just qualified as a nurse and I was shocked at the lack of content in her 3 year course around dementia – 3hours in total in her 3 year course. I made friends with her lecturers – Helen Roberts and Rob Allison – and from this year the course has been rewritten and dementia is a part of every module. Brilliant😊

They had a talk from me and my daughter Sarah back in September and today we’re there for a 2 hour lecture, which includes an hour from me and Sarah. So in their first term, they’ll have already had more than Sarah in her entire 3 years.

I woke up to find a comment on Twitter from one of the students to say how much she was looking forward to seeing me again which was nice.
Sarah met me off the bus and we drove to the uni and were met by the lovely Helen Roberts who provided us with a much needed cuppa.

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An hour is a long time to listen to anyone so we decided to split it up and have me, then 15 mins from Sarah, then me finishing off. Hopefully that way they wouldn’t fall asleep!

Me taking a sneaky photo of Rob when he was warning students not to use mobile phones....🙄
Me taking a sneaky photo of Rob when he was warning students not to use mobile phones….🙄

The topic of the lecture was ‘Understanding the Patient Experience’. Rob had put together a presentation and was going to talk before and after us.

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The lecture theatre was full to bursting and they had to set out more seats at the front to accommodate everyone. They were a very happy lot and some were in Christmas jumpers for the occasion. I asked if they minded me taking a picture of me and Sarah with them all to go on my blog and I immediately put it on Twitter for those that wanted to have a look.

Yeh!
Yeh! – Me and Sarah are the 2 sat on the stairs..

I started off by saying how less scared they looked from the first time I saw them! And hoped they’d had a good first term. I imagine their heads are full to exploding point as it’s a lot to take in and often, a shock to the system.

During my first session, I spoke of the lack of awareness in the clinical world. I gave the example of the breast cancer specialist thinking she had no patients with dementia, only to find out that she had over a 100 when she checked the detail. I told them the story of my experience as a day patient in the eye clinic. How 3 clinicians had asked me the same questions which relied on my memory to relate important information……

“If you can get it right for people with dementia you can transfer a whole load of those skills to any patient. Because you’re not looking at the dementia, you’re looking at the person as a whole.”

Great catoon that Rob used....
Great cartoon that Rob used….

I then rambled on about the various other symptoms we can have to highlight the fact that it isn’t all about memory and how they need to be observant on the ward because not everyone admits they have dementia and not everyone has a diagnosis.

It was then Sarah’s turn.
She spoke brilliantly about her experience since I was diagnosed and how she had learnt the importance of not ‘dis abling’ the person with dementia. As a qualified nurse she certainly:

“I certainly don’t miss the exams and assignments!!

She eloquently spoke of how the ‘small things matter’ and the importance of ‘getting to know the patient’.
Her first months as a qualified nurse working in the local hospice have been challenging as you never stop learning. Sarah ended by telling them all to:

“Enjoy being a student!”

Sarah was much more confident this time than the first time she spoke - amazing what qualifying does for your confidence:)
Sarah was much more confident this time than the first time she spoke – amazing what qualifying does for your confidence:)

Final part tomorrow……

 

Combined project with Bradford Uni and Leeds Beckett Uni.

Yesterday I ventured to Bradford Uni from my new home (I’ll eventually stop calling it my new home, but the novelty may last some time!). The village bus doesn’t start running until later so I had to get a taxi to the station (I’m used to walking and not having to rely on people being on time……) Luckily Gemma had warned me that the taxis are always late so I booked it earlier than I needed to and low and behold, it arrived late but perfectly on time due to my booking – don’t understand the logic of taxis always being late…………. Bizarrely I have to go East to Hull before I can go West to Bradford – hence the picture of the Humber Bridge below. However, Gemma has reminded me of another route which I’ll try next time which involves starting at a different station……..

The new view on my train journey😊
The new view on my train journey😊

This time it was for 2 meetings – both related but wearing different hats.

The first was with the Project Management Group for the:

“What Works? – Dementia Training and Education”.

It’s being funded by Health Education England me thinks. I’m representing the patient by experience. It’s the first one I’ve been able to attend. I believe they’re trying to assess the best training methods within healthcare settings with regards to dementia. The aim is to try and find out what’s happening around the training of care staff currently, what, if any training, they’re currently receiving and what can be improved. The project is in the early stages and has involvement from people affected by dementia. That’s where the second meeting fits in as I’m also on that panel. They’re using our experience and examples to help with the project.

The lovely Andrea Capstick had asked me to be involved. It was attended by many new faces to me but also some lovely familiar ones . I finally met Professor Claire Surr from Leeds Beckett University – we know each other from Twitterland.😊 From Bradford there was Jan, Sahdia and Andrea.
They went through what had been achieved so far and were due to meet with the ethics committee that afternoon to gain approval😨

Case studies would be sites/organisations that currently offer most of the competencies currently. in their training regime. They want to find best practice to bring all the good bits together that’s currently out there.

The first part has been to ask Healthcare organisations from all sectors to complete a survey detailing what they currently have for their staff in the way of training re dementia.
Twitter has also been used to promote the study and to get it to the right organisations and people

I’m part of the project team but the ‘ patients by experience’ panel will be involved at various point along the way to advise and comment.

I’m not sure how much I was able to contribute or how valuable my input was at this meeting but it was good to see how projects are put together and their trials and successes
Andrea kindly sorted out lunch for me before the next meeting – the focus panel.

There were 7 of us and Andrea. There were 6 carers and me. ………
Andrea had developed 4 scenarios based on the poor experience examples we’d given at a previous meeting – A&E, care home, Gp and BME example and a set of bench marking statements that could be used to measure the benefits staff would receive through better training
Andrea again stressed that the aim of the project is to Improve training on looking after someone with dementia in all types of healthcare settings.

One of the group commented that:

“If people with dementia were treated with dignity and respect it can lead to many other things happening correctly”

I came away thinking we hadn’t achieved very much today but we are at the early stages of the project so maybe it’s just my impatient mind working overtime.

My journey back went pear shaped – I was due to catch 3 trains and 1 bus home. It went pear shaped on the second train which was delayed by 30 mins and then 2 trains were displayed on the same platform😱…..The train was full and some thought it was the Hull train and others got on thinking it was the Middlesborough train – my first thought was ‘is it me or them who are on the wrong train’…………luckily for me it was them. However the delay did mean that I’d miss my connection in Hull but the train guard helped me work out another train.
During all the chaos Gemma rang me to ask where I was on the journey………I looked out of the window and replied….”Havn’t a clue”
Of course, the unfamiliarity of the journey means that I havn’t worked out landmarks yet or the order of stations etc. I asked the man next to me where we were…..(strange looks followed, but he told me) and the upshot was that Stuart could pick me up if I got off at the next station as he was in that area – result!

Not having much luck with travel to my new home……….