The end is nigh….of the doctoral fellowship funding.

Today marks the last day of my official funding for my NIHR Doctoral Research Fellowship. It feels like a rather serious date. I have been an NIHR Doctoral Research Fellow for four whole years. During this time I have:

  • Started my PhD and nearly finished writing my thesis – I will be submitting it soon all things being well! (Cross your fingers for me!)
  • Created a manual for a communication partner training intervention called Better Conversations with PPA and have published it its own part of the UCL eXtend website, with a number of training modules to help people engage and learn about it. Most of this has been coproduced by people with PPA, their families and other professionals (SLTs). (We will be officially launching this at some point!)
  • Published 4 peer reviewed journal articles directly related to my PhD and another 2 due to the links I have forged during the course of my PhD
  • Done conference presentations, both locally, nationally and internationally and now know a lot more about how to put together a conference poster and present to an academic audience (and have incidentally visited countries I had never been to including Hong Kong, Portugal and the US)
  • Lectured on the speech and language therapy training Masters here at UCL- all about dementia, and another one on ethics (and Mental Capacity!!). I have also acquired another regular lecture on the Masters of Dementia her at UCL- telling other professionals all about SLT in dementia.

BUT I:

  • Have NOT learnt to feel more confident about ANY statistics programs. But that’s ok- because I know my limitations.
  • I am not able to spell any better, nor has my grammar improved. Academic writing is a slog- requiring multiple revisions and lots and lots of editing.
  • I do not feel ANY more comfortable about listing my achievements- it still feels terribly awkward and slightly wierd (I don’t know any SLTs who are comfortable with this type of thing).
  • I am no cleverer than when I started.
  • I still ask stupid questions.

More importantly I have had the most wonderful opportunities and experiences. I have enjoyed every minute of this experience. I honestly feel valued by all the people in the department I work, by both my supervisors, my mentor, my peers and all the students I have been working with. It feels like the work I have done here will make a difference. I can cascade the work I do and support multiple other professionals to, in turn, support people with dementia, primary progressive aphasia and their families and other communication partners.

The worst thing about coming to the end of the fellowship is that it feels like I am leaving something behind. It feels like the end of an era. I feel rather sad about the multiple goodbyes I have had to start saying. One of the hardest has actually been saying goodbye to the people with PPA and their communication partners who have worked on the steering committee for my project. These people feel like colleagues. They are as invested as I am. They feel as passionately (if not more passionately) about the work. And we have lots more ideas about how to take the work forward. Frustratingly we cannot just jump in and get on with the next stage of this work together.

Despite the hard goodbyes, I feel confident about there being opportunities for more collaboration. The fact that other people are as engaged and enthusiastic suggests that further research is warranted. That this cannot be the end of the road. I must go on. I am determined to apply for further funding to continue the work we have started.

But first let me just finish my thesis and submit it and do my viva…..and then we can apply for more funding. NIHR here we come.

 

 

Dementia in our diverse local communities: How can we help?

 

I grew up in London, North London to be precise and have worked across North, East and South London. Oh and I worked in Melbourne, Australia for 5 years. Across all these areas I met people from lots of different communities, cultures and religions. I felt incredibly privileged, and I learnt so much about so many different cultures. For example when I worked in Australia I worked with a Tiananmen Square refugee, a piece of history I knew (ashamedly) little about. I also learnt a lot about how different cultures deal with illness. One example that always springs to mind is the Vietnamese women I met who drank a bottle of bleach. She had schizophrenia. But her family had not allowed her to leave their family home nor use mental health services due to the stigma associated with mental health within their community.

 

When I returned to UK and started working in South London I was rather overwhelmed by the lack of diversity in the people being diagnosed with dementia. The area I worked in had many African and Afro-Caribbean, Indian, South American and Eastern European communities living there. Yet the majority of people who I saw were white, often fairly middle class people. Dementia doesn’t differentiate between ethnicity, nationality and class. Yet I would meet the odd working class family who would say things like “Oh well, we will just get on with things, we have no time for therapy”. I met a lady who was excluded from her church community as it was felt that her dementia was some kind of comeuppance for her sins. I met families who gave up their jobs and cared for the elderly relatives, because dementia was considered a normal part of aging, thus no need to get support from health professionals.

 

It makes so much sense that your experiences, beliefs and community can influence the way you manage your health and health professionals. My father grew up in post war east Germany- in Berlin. When he was 14 he ran away from home and was educated in the west, when he was 18 he went back. They wouldn’t let him leave, he couldn’t get a job and he couldn’t study any more. After a few years he tried to escape again, but unsuccessfully. He got put in prison (for treason), and got bought out by a humanitarian lawyer. My dad became a west German citizen, and eventually moved to the UK where he met my mum and had me and my sisters. A few years ago he got his Stazi file. It made for interesting reading.

 

To put this into context- my dad never trusted health professionals. He rarely sought medical advice. He absconded or self-discharged every hospital admission he ever had. He got multiple opinions from English and German doctors when he was ever diagnosed with anything, and then he often didn’t follow their recommendations. Not that long ago he described a hospital he had an operation in as an antiquated Stazi like regime. My dad never had dementia. But given his experiences, I completely understand why it might be difficult for people to use the National Health Service. I feel quite lucky to have this perspective. To understand why getting a diagnosis, trusting a diagnosis, taking advice from professionals may be difficult for people.

 

I feel it should be part of our role as health professionals, as dementia ambassadors to take this on board. To allow people the freedom of choice to take up advice or not. But to provide an environment that is safe and open, that doesn’t feel like a Stazi regime. Where people can get appropriate support for themselves, their families and their communities. Perhaps we need to rethink the way we deliver dementia services. I attended a talk a little while ago where they described how the re-modeled their dementia services for the farming communities they were serving (who also often don’t trust health professionals) by embedding them into the local churches. And co-delivering the clinics with members of the local church. I considered this innovative and sensitive.

 

So here is my challenge: What can we do to help our communities with dementia?

Prioritsing workloads: No is the hardest word.

When I worked as a clinician I was generally contracted to work a regular day- 9am to 5pm, or 8am to 4.30pm in Australia. That said we generally didn’t actually work these hours. I would say I routinely worked an extra 30-60 minutes at the end of the day. And would answer phone calls and emails on my day off. There is a standard expectation in the profession that communication assessments can take anywhere between 45 and 90 minutes and therapy would generally be around 45-60 minutes. Meal time and swallow assessments could last between 20-60 minutes, depending. But overall you had an idea of how many patients you could fit in each day- in community I aimed to see 4 people each day whilst in outpatients and inpatient rehabilitation I aimed to see 4-8 people a day depending on what was happening e.g. meetings and ward rounds etc.

 

Yet there would always be more (if not lots more) patients on our waiting lists. Staff would ask if I couldn’t just squeeze in a quick review of a patient who could really benefit from my time. Families would ask us if I couldn’t provide some more valuable advice. It would often seem that the people I was working with could benefit from just a few more therapy sessions. In every role I have ever had we had a prioritisation matrices- we developed refined them to meet the needs of the client group we worked with, and based them on evidence. It also meant that there was a fairly transparent understanding of what was expected of us. And that we could be more objective about how to prioritise our workload each day, week and month. It was also a useful way on relieving the emotional burden, which can be rather wearisome.

 

Recently I have wondered if I should create a prioritisation matrix for my academic work! As I really embed myself in trying to finalise the thesis write up I am doing I have found I need to spend large chunks of time writing. Days even. My previous strategies of grabbing time here and there to chip away at various bits of work seem rather like drops in the ocean. I have also found that although I enjoy doing other things e.g. presentations at conferences on the role of the SLT in dementia, and decision-making and mental capacity I need to say no. I can’t spend time working on too many other things as I won’t get this thesis done. Yet having a few other things to work on can be quite useful- almost like a brain detox. But I need to prioritise these ‘other’ things. Perhaps we do need a prioritisation matrix for academic life?

 

Consequently I have decided mine would look a bit like this (today):

 

Priority 1 (should be undertaken every week, every day if possible, preferably in large chunks of uninterrupted time, or small chunks of time chipping away at things):

  • Thesis writing.
  • Thesis editing.
  • Job applications for after my PhD
  • Answering emails

 

Priority 2 (should be undertaken as a detox activity, to maintain contact with colleagues and the broader profession and to maintain sanity. One of two of these activities e.g. presenting on your PhD may even help you write up?????):

  • Presenting my PhD research
  • Doing small jobs that I had committed to ages ago- locally- and for friend/colleagues

 

Priority 3 (you could may be do something from this list IF you have time and they cause no/minimal stress or you REALLLLLLYYYYY LIKE DOING THEM maybe):

  • Any new projects.
  • Presenting things on the role of SLT in dementia or decision-making and mental capacity that do not fall into the above categories.
  • Things that are too far away and too stressful

 

This prioritisation matrix should be reviewed anytime there is a major change e.g. you get a new job / you finish a large chunk of thesis / every month.