Showing posts with label social media. Show all posts
Showing posts with label social media. Show all posts

Monday, 8 December 2014

Reflections on 2014

So, the end (well nearly the end) of another year. 2014 has truly flown by for me – a whirl of speaking engagements, writing assignments, teaching, advising, assessing  and supporting. 

Picking out highlights is always tough. Sometimes the most special moments come and go without being linked to a specific event, they just ‘happen’ when you meet someone and get into a conversation, or read a tweet or an email, but in true end-of-year style I’m going to try and pick out some of my favourite memories from the last 12 months. 

In no particular order here are five of my 2014 highlights:

1)      Film for Care England 

It was an honour to be asked to make a film for Care England. Partly because I was in illustrious company, with some true ‘heavyweights’ of social care being invited to contribute, but mostly because it was an amazing opportunity to talk about some of the aspects of social care that are important to me, and to direct specific issues towards care providers and policy makers. 

My dad’s 9 years in care homes has left me with an abiding desire to A) celebrate good  care (my dad had some amazingly good care) and B) work to improve poor care practices (which sadly my dad also experienced). Whatever the rights and wrongs of how residential care is provided or funded, every single individual receiving it deserves care that is consistently outstanding. 
 

2)      Interview for The Guardian 

Given that I’m someone who is used to doing the interviewing, rather than being interviewed, it was an unusual experience to be on the other end of the questioning! The feature charted my life with my dad, and talked about some of the work I’m doing now, including with CQC. 

It also helped to bring my D4Dementia blog to a new audience, and contained information that I hope was helpful to readers, including my time honoured advice on choosing a care home:  "I always say to people: go with your gut instinct. Don't go for something that looks like a hotel, or promises anything and everything. Go for something that feels right to you." More expansion on that advice is available here. 

Most importantly from my perspective, however, the feature stressed the independent nature of my work, which is something that I am fiercely protective of. 
 

3)      Standing ovation at the Alzheimer Europe conference 

As I’ve eluded to I speak at a lot of events - followers of the D4Dementia Facebook page or my Twitter feed will know this well. Over the last 2.5 years the topic I have found most difficult to talk about has, unsurprisingly, been my dad’s end-of-life care.  

As a result I’ve only spoken about it in depth and publically twice – at the National Palliative Care conference in December 2013 and at the Alzheimer Europe conference in 2014. I remember first writing about my dad’s end-of-life care in this blog post, and being in tears writing it and reading it back. With this in mind, you can imagine how difficult it was to speak to a large group of people, but the reaction from the audience at the Alzheimer Europe conference was so memorable it warranted a blog post all of its own. I will always be grateful to that audience for their support at the end of a very difficult presentation, so if you were one of those people in that room, thank you. 

4)      A day full of hope with BRACE 

Since I came into the health and social care world on a professional level, I have attended a lot of conferences. Truth be told, I have become increasingly fatigued with the endless regurgitation of information that these events produce. For me it has become an issue where we need quality to triumph over quantity. The lives and futures of people with dementia and their families are too important for progress in how we inform and educate to be so achingly slow and uninspiring.

With that in mind, easily my favourite conference of 2014 was BRACE 'Dementia: Hope for the future'. BRACE hold a very special place in my heart. They gave me my first ever speaking engagements in September 2012, invited me to be part of their Question Time panel in 2013 and subsequently made me an Ambassador. Being involved in the planning and delivery of ‘Dementia: Hope for the future’ was another highlight in our on-going relationship. 

This ‘mini conference’ had a strong local focus and offered lots of practical information and advice. It also covered national and international issues. All the major areas of dementia care were represented – Dr Peter Bagshaw covered primary care from the point of view of a GP, social care was represented by Mike Hennessey who is a director at Bristol City Council, secondary care and research was covered by Dr Liz Coulthard who is a cognitive neurologist, consultant senior lecturer and clinical research team lead, and most significantly of all, the views of two people living with dementia – Chris Roberts and Hilary Doxford - and carers present and past – Chris’ wife Jayne, Tony Hall and myself - were present throughout the day. 

The fantastic feedback proved that this event inspired and influenced the people who attended, and I’m certain that they took away many actionable, positive messages and signposts for their professional and/or personal lives. Other conference organisers please take note! And a little heads up for 2015: there will be another BRACE event, so keep your eye on the BRACE website in the coming months.

5)      Training GP’s 

It was way back in 2012 that the idea of me offering training to health and social care professionals was first muted. 2014 saw my first foray into that area as I undertook a GP training session for the first time. 

I have come to realise that from a professional point of view nothing gives me greater pleasure or pride than being able to make a difference to frontline practice in a practical and personal way. Drawing on my own experiences with my dad, and the experiences of the countless other people who are living with dementia and their families whom I have been privileged to meet, can have a really powerful and positive impact on any audience, including seasoned professionals like my group of GP’s. 

For 2015 I hope to grow this side of my work, in both health and social care, with my number one aim being, as it was when I began D4Dementia, to make a real and lasting difference to the lives of people who are living with dementia and their families. 

I could add many more highlights, but I will end by thanking each and every one of my readers, social media supporters, colleagues and friends who have made 2014 another very special year for me. 

This will be my last D4Dementia blog post for 2014. I’m taking an extended Christmas break to spend time with family, but rest assured that D4Dementia will return in 2015. The first D4Dementia blog of the New Year will be published on 19 January 2015. 

Until then I wish you all a very happy Christmas.
 
Beth x







You can follow me on Twitter: @bethyb1886

Friday, 13 June 2014

Carer's questions - Does everyone feel that they can’t cope?

Welcome to the fifth of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."


For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 


Day 5 - Does everyone feel that they can't cope?

Possibly not everyone, but certainly most carers feel like this during their caring role and often feel like it frequently. I personally don’t ever recall meeting a carer who at some point didn’t feel that they weren’t coping, and that includes carers from many different backgrounds. 

In my father’s 19 years with vascular dementia I struggled when big decisions had to be made, mostly health-related, or when we were waiting on the decisions of others, usually healthcare professionals. The absolute worst times, however, were when dad was seriously ill in hospital – as a carer you feel helpless and often very excluded from what is happening to your loved one. In those times I honestly wondered how we would get through it – the fear of losing dad was huge and so very real.

It’s easy to believe that you are the only person feeling like this. When my dad was alive I wasn’t involved in the online ‘carer community’ at all, but having become connected to it through my work
 I can see how valuable it is. A huge number of carers contact me through social media seeking advice, and I’m always very happy to help where I can. I also regularly look at the #dementiachallengers hashtag on twitter - it's a place where anyone and everyone can come together to talk about dementia.

One of the most powerful testimonies of the power of social media for carers comes from the wonderful Sally who tweets as @nursemaiden. She engaged with twitter in the last hours of her father’s life, looking for reassurance with the palliative care that she and her mum were providing. Why you might ask? Simply because twitter offered her instant and informed advice thanks to the huge number of experienced professionals on the site.

A small plea from me though – for all that is great online, and there is a huge amount, we must never forget people who aren’t online. Having a computer and broadband (plus someone to teach you) isn’t an option for everyone due to cost, preference or other associated reasons. It is those people who are possibly feeling like they can’t cope most of all – another great reason why we should all look out for our neighbours and friends more, and signpost to helplines and printed materials.
 
 


Further reading:

D4Dementia: 'Caring for carers'
External links: 
Carers Trust: http://www.carers.org/
Next post on 14 June 2014.
Until then...

Beth x







You can follow me on Twitter: @bethyb1886