After the trauma of Monday, I needed something to lift my spirits yesterday and if anyone could do it, it was students…….I don’t normally let things like this dwell in my head but the PIP process isn’t just a one day event…it affects you from the moment that brown envelope drops through the letterbox. That sinking feeling of doom and trauma….but today is another day and I was so hoping the students smile at Bradford University would bring a smile to my face….
A lovely sky welcomed me as I stood looking out of my morning window…
I was heading for Bradford to the Doctoral Training Centre (DCT) to have an update from all the Phd students that I’d been following from their first day. The DCT is one of the things the Alzheimer’s Society have got right. The students are funded by them and I was there as a Research Network Monitor today.
I’d be seeing the lovely Sandra and Barbara along with other wonderful people at Bradford so my hopes were high for a happy day.
I saw the taxi driver slowly pass my house and guessed it must be someone new, well he was to me. He wasn’t the talkative type and insisted he’d been with them a year so we trundled along in silence. I often wonder if people are feeling sad, shy, or just don’t like to talk…..no one knows what is happening in peoples lives to make them as they are in that moment.
Once at the station, I checked with my smiley face at the taxi office, that I’d booked a taxi home and then joined the morning commenters into Hull…I’d set alerts from the train company so that every time I travel, they send me a txt to tell me what platform and whether there’s any problems…..wonderfully helpful.
The first train was on time into Hull and we now have a direct train from Hull to Bradford, so I don’t have to change at Leeds! I know it’s probably not, but feels like a long time since I passed the Humber in sunshine…
Sandra was due to pick up my train in Leeds and had txt along the way. Me thinks it must be half term as the carriage was full of excited children….well 4…but sounded like a whole carriage full 😳😂…so I went into my own world of playing solitaire…..
Leeds came, the train emptied and I saw Sandra wave at me from the other end……after hugs and a catch up we’d arrived at Bradford and made our way up the windy cold hill to the Uni where a cuppa tea was waiting……
The students started to arrive and the room came alive with chatter…..before I knew it, Barbara called us all to attention and we started…..by introducing ourselves…..there were students, their supervisors and a visiting Professor Myrra for the Netherlands…
We had an hour for oral updates from the students…..
Paul was up first…investigating how people with dementia manage their medicines at home and the role the community pharmacists can play. He wants these questions answered….how people with dementia manage their medicine?, especially the implications of living alone or with different types of dementia. How community pharmacists support those people and what should be the way forward…..
He is organising focus groups and follow up interviews in their own homes, taking photographic evidence of their routine. Next would be a focus group with community pharmacists who would see the photographic evidence from the first group so they could see the strategies they use or not……he’s still at the ethical approval stage, but is now close to achieving that
It became apparent from Paul and from other comments from the students that the ethics process is difficult…….
Akhlak was next…….he is looking at the step changes in caring for someone with dementia at home in the South Asian community – is there a role played by gender? Does Faith play a role? He has had challenges with recruitment due to the stigma associated with dementia in this community. He’s found you have to have trust and rapport with people for them to talk to you so building trust has to start before any conversations can take place….Intergenerationally there are also differences of opinion . Akhlak said some really interesting and practical things around Faith and the part faith can play in South Asian communities…..how for some it is extremely importantfor and for others, not so. Stresses the need to look at what’s important to the family that can help…..
Angela next…..looking at transition between settings of Hospital and back to Care Home, so exploring the role of the nurse in hospital and the nurse in a care home when the person leaves hospital and goes back to the Care Home. She’s spoken to Care Home nurses and hospital nurses.
She found it sometimes depended on the type of ward the person with dementia had been on. A short term ward may not have the time to spend on connecting with the care home in detail. She found too many variables affecting the result…..and found the challenges lay in the release of the nurse from the ward to be able to speak to her.
As Sandra said, the variables must explain the inconsistency in care and transition from hospital…..it also depends on the individuals experience of working and understanding the needs of people with dementia….
The communication between hospital nurses and care homes nurses seems to be a barrier to the creation of a good transition…..Nurses in hospital rarely start off working in a Care Home so have no understanding of the needs……they don’t see each other as equals.
Helen was last before lunch……she was looking at Women Living alone when diagnosed with dementia and the things they developed not to go into a care home. She looked at it from a feminist point of view. When she tried to find people in Care Homes that had lived alone, she met lots of gatekeepers…disempowering people with dementia. She felt it was to do with being a black woman. She was met with a lot of resistance and prejudice. The participants she did get were all from word of mouth and not from organisations….they were all living alone when diagnosed.
All the 4 participants lived alone before they were diagnosed and it’s how society can enable people to remain in their own home…..
The 4 participants surprisingly didn’t speak about dementia. They spoke about other co-morbidites. They all stayed in their home with support. All varying with different types of support. Some had minimal support. One had her family move in with her and she was able to still socialise…whereas those who just had someone come in to do cleaning, the laundry etc, simply felt old…..
Four fascinating and important studies……
Lunch time and time to chat and catch up and take a piccie of the 4 students
After lunch Murna spoke about the future of the Doctoral Training Centre…there are many other Phd students who aren’t funded by the DCT…..they are seeking funding through other areas for the other opportunities to appoint other PHd students. However they want to continue this model of having a twice yearly meeting with ‘the family’ that is us……it can be very lonely being a Phd student, said one. I said:
“It’s also very lonely living with dementia and caring for someone, and coming together with students is like a hug from them knowing that they care enough to do their research, seeing the passion they have for their subject and desire to change practice but also the students receive a hug from us knowing that what they do is appreciated – it’s a win win…….we help each other.”
As Sandra said….there needs to be a helicopter view of all the interlinking that exists between each project of our DCT students…all the different transitions….we spoke a lot about the challenge of what happens next……to me it’s the duty of the Alzheimers Society to fund evaluation of the interlinking in the form of a grant to enable them to produce a paper which would be invaluable in showing the connections between all projects and lessons learnt…
Students have such hardship when their funding comes to an end yet life has happened, unexpected breaks have interrupted the process. But also there has to be an acknowledgement that social research is very different from clinical research as it’s involved in ‘the now’, what’s happing in society now.
The students here are also from clinical practice…..the easy option is to go back to the their clinical world and leave research. Admittedly they would take back a better understanding to their clinical world and change practice, but short term contracts and access to roles in research aren’t an easy route. Their projects need to be implemented…..but they rarely are and is very frustrating for them and us…..
We could have carried on for hours, but we had to stop and have the Monitors meeting with Murna, Jan, Sandra, Sandra and me….we sat for half an hour chatting about the students and clarifying what we needed for our report. Sandra Duggan offered to write the report this time……
We all agreed on the value of lay panel, like ours, to support the students through their studies. We can show them the reality and why they do what they do is so important for people living with dementia………brilliant day and yes, after the trauma of Monday, they did make me smile…..