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A case of mistaken identity? A matter of life and death
My Dad died four months ago from bile duct cancer, cholangiocarcinoma. Since then I’ve seemed to blog less, and in a way that may be no bad thing, I’ve been doing lots of thinking and reflecting and recharging, but have had less concentration and less inclination to put fingers to keyboard. Then this week a chance conversation on twitter with the lovely @ChrisandHarvey got me thinking, and suitably wound up enough to write this blog post. I’ve followed Chris for a couple of years, he’s a hugely inspirational guy, Dad to his son Harvey, and he works as web manager for Weldmar the hospice in Dorset; go check him out. He retweeted this tweet:
This just left me feeling quite deflated, I wasn’t as philosophical as Mrs Glove and not as quick to just accept that was that. I have blogged on the life changing care that our local hospice, Rowcroft, provided for my Dad and our family in his final days. The Hospice at Home team made an immeasurable difference and I have committed to myself to continue to raise awareness of the excellent work they do, which is sort of where this post comes in.
So what’s the problem? Well luckily for you the CEO at Weldmar, Alison Ryan, wrote an excellent blog post outlining why this is problematic. I’m not going to repeat all that Alison says, you’d be better off going and reading her original post, but in a nutshell she is drawing attention to the fact that too often people in the local area are under the mistaken understanding that hospice care is provided by Macmillan. This matters for two principle reasons, the first is around fundraising, people going onto the streets to raise funds as a thank you, but mistakenly providing them to another incredibly valuable charity. The second reason of course is more pragmatic, if people don’t know who is providing their care and support, then what happens if they need to complain or make a request? Alison draws the brilliant analogy that not all vacuums are hoovers, the same goes for end of life care, not all hospice care is provided by Macmillan, in fact as I understand it in the South West very little (if in fact any?) is. As I understand it this is a common problem faced by many hospices, how do they get the message across that they are providing the service that they do.
Is it a case of overload? It’s a simple fact of life that by the time you encounter support from a hospice then you are already having to deal with some fairly harsh realities, life and death decisions and if our experience is anything normal you are probably quite simply overloaded. Whether you have been dealing with a terminal illness, or spent years living with a medical condition, or indeed if you have just found out that your life is limited, there’s a good chance that you are exhausted from the information and advice overload; you are likely to have met more professionals and individuals than you can even remember, you struggle to remember their name (and trust me it’s awful when you are so grateful and yet can’t remember the name of the person with you) never mind who they work for; you are dealing with so much that who funds the staff supporting you isn’t likely to be at the front of your mind. When Dad was in his final weeks one of the things I did once the hospice staff started visiting us at home was start a list on an empty cereal packet that happened to be in reach, of the names of the people as they arrived – this served two purposes, it meant that I’d be able to check each time I forgot who was upstairs with Dad, and it also meant that we had a list for when we came to thank people afterwards. It’s not like me to be so organised and I don’t know why I did it, but I’m glad I did.
Do we just not like talking money? So, at what point should the hospice be making it clear who funds the service someone is accessing. It could be because we’re terribly British about it, and because we don’t have a great awareness or general literacy around the cost of healthcare, but at no point was the cost of Dad’s end of life care discussed with us. That may well be completely appropriate, and I know that no-one who works for a hospice would want a family availing of their services to worry about the cost. Despite this, I know that my Dad for one was incredibly aware that other people could be benefitting from the support he had as an inpatient at the hospice, in fact I think it was one of the reasons why he wanted to return home. I’m not sure, even now, on the relative costs of providing an inpatient service versus the hospice at home service, I have seem some statistics about what it costs to run them but I’m not sure whether it was cheaper for him to be supported to die at home, I suspect not.
Anyway, this wasn’t a post particularly about Dad, it was a more general sense of what limits us from discussing, or knowing, the costs of such a service. Maybe we have a long way to go before people are confident or comfortable in discussing the costs of care, I know when I blogged about this before it got a very mixed response in the comments and on twitter.
Is it simply a case of mistaken identity? Unfortunately it seems a bit of a case of David and Goliath, Macmillan are an excellent organisation, much larger than any of the independent hospices across the country providing palliative care. They are also very canny and often pump prime the establishment of services and fund a small number of posts (there’s more in Alison’s blog post about this) and I guess once you are established as a Macmillan Consultant/Nurse/Advisor then you aren’t likely to ever really change in people’s minds who you meet.
Macmillan are also blessed with a very strong brand, and lots of hospices aren’t in my opinion, although I do *love* the new Rowcroft branding! I’m sure that it’s a hard sell to trustees, colleagues and supporters if you want to spend what hard raised money is available on changing branding but I can’t but think it might help in some instances. Short of rebranding and awareness raising, I wonder whether a conversation should be happening at a more strategic level. I’m under no illusion that this blog post is likely to reach more than a handful of people, raising anyone’s awareness is a good thing, but a more straight forward honesty and awareness from Macmillan might be welcomed too, after all we all want the same thing, to provide a quality end of life care service and for people to have greater awareness within that of who is providing their support. If the recent horse meat debacle has taught us anything, perhaps it is that a case of mistaken identity is not one that the public take too kindly too.
So the next time you decide to give to charity or sponsor someone, or are looking for an organisation to raise funds for, then consider your local hospice, they’re likely to need your funding far more than some of the larger organisations.
Life after Bobby: the first 100 days
It’s 101 days since Dad died today, I’d been thinking about this (non)-anniversary all week and was fully aware of it yesterday but couldn’t bring myself to concentrate long enough to write this post then. I’m confident Dad would appreciate the quirk of it being 101 days anyhow. So I’m going to keep this short (I tried…it didn’t work, sorry) but share some of my reflections on life after Bobby. I did a few posts in the immediate weeks following Dad’s death, one after a month and another after two months, but I’m hoping the passage of time will make this one slightly more considered and reflective.
Missing him
It seems that the normal timescales for grief and grieving suggest that we should all be a little raw still, given how soon it is since Dad died. I’m not claiming I’m out the woods, but mostly I feel like I’m doing ok. The grief is there but it’s almost like a washed pebble, it’s like a lump that’s present around and within me, but it’s by no means raw and jagged. I wonder if part of that is because we had so long to come to terms with Dad’s illness, I’m confident part was due to the amazing support from the Rowcroft Hospice team when he was dying – it was almost like our grieving started when they arrived in with us, and they were phenomenal in that regard.
Don’t get me wrong, I do miss Dad, there are loads of occasions where I’m stopped in my tracks at my sense of missing him. I’ve had an almost visceral response on a handful of occasions, the most recent was when I was strolling around the Vasa Museum and I was thinking how much Dad would like it, it hit me like a ten foot wave, Dad would *have* liked it; past tense. I thought I was alright with that until I turned to remark aloud Dad would have liked this and the words stuck in the back of my throat, hard to form without an extra gulp of air or two.
On the plus side I’ve learnt that it is possible for anyone, even me, to cry Cheryl Cole tears. You know what I mean, simple beautiful diamond tears cascading down a cheek and deftly caught in a tissue, as opposed to the full on, red bloated face, tear avalanche accompanied by full on shoulder shakes that was the hallmark of my grief in the very early days. It’s not so much a learnt behaviour, more a necessity. If you find yourself thinking of someone you’re missing on public transport (I’ve learnt I do a lot of my thinking on trains) the you can’t afford to make a spectacle of yourself!
Moving on
When Dad died I changed my facebook profile pic to one of him holding me as a baby. It was in some way a marker and virtual acknowledgement of the role he’d played in my upbringing, but on a very factual level it also served as an alert. Most of my friends knew Dad had been ill for some time but I hadn’t actually told many he was dying so having a new avatar meant people looked and very soon found out that Dad had died – this cut back on my need to contact people and let them know individually. In addition Dad had an epic beard which was an awesome talking point. Here, take a look it was this photo:
The avatar was also a bit of a comfort for me over the past 100 days. Every time I looked at it I’d smile at Dad’s beard as a starter, but also at the memory of his chest! I spent hours looking at his chest the week that he died, he’d take every opportunity to get his chest out in the sun, famously stringing an extension line into the garden so he could iron in his shorts in the summer (once a matelot always a matelot). One of the advantages of him being at home was that he didn’t have to wear full on PJs as he would have felt obliged to do in hospital, so that chest is scorched in my memory, in a good way.
What has that got to do with moving on. Well this weekend, encouraged by a throw away comment on twitter and a new hair do, I changed my avatar back to a photo of me. I’d been wanting a reason to do it for a wee while, I didn’t want to change it too soon and I was worried that I’d feel like I was erasing Dad in some way or moving on to quickly, but hell it’s what he’d have wanted and my barnet won’t look this good for long, so it’s back to me!
Remembering reality
One of the joys of Dad’s death and dying has been the excuse to reminisce and share stories. There have been lots of words about Dad over the past 100 days and I’ve caught myself occasionally glossing over the bad bits and just focusing on the good, turning Dad into an almost virtual saint! Anyone who knew my Dad would laugh at that, he was all manner of goodness and had a true heart of gold and would give anyone his last penny, but he wasn’t no saint. Catching up with Mum this weekend it felt good to acknowledge as much, to discuss the good but also some of the more irritating or less favourable bits.
The most striking bit for me is the sense of freedom I feel now Dad has died. It’s not that I actually think Dad would have judged me, all he ever asked was for us to be happy, and yet in some way we didn’t often see the world in the same way. We were quite different people and I maybe it’s completely natural for all children to want to please their parents, but it feels a relief to know there is only one left to have to please! I guess this is wrapped up with a growing realisation of how full-on and demanding Dad’s illness was at times over the past five or six years, not to mention how demanding my relationship with work had grown (I quit my job in September, just before Dad’s health seriously declined and was working my notice period when he died).
It certainly feels good to be free of some of those residual pressures, and it similarly feels good to speak freely of them.
Getting back on the social media donkey
When Dad was dying I received a lot of support via social media, it helped me no end to know that people hadn’t forgotten about me, despite my absence. I lurked occasionally, ignored it a lot and really questioned how futile a lot of the interactions were once I returned. It felt like everyone was moaning on and being negative, and the last thing I needed was negativity in my life. I worked hard to stay patient with it, to remember that it’s not all about me, to respond to the virtual invitations and connections offered, and to force myself back into a space that has provided me such support over the past few years.
I keep using the analogy of learning to swim with social media – you can’t really ever understand it, get it, or do it until you jump into the water. You can read, you can watch, you can study, you can question, but until you get in the water you won’t fully experience what it has to offer. When Dad was dying I spent a lot of time at the edge of the virtual pool and it took an immense effort to trust myself to dive back in and commit to it, it would have been easier to just stay close to the edge, or to give it a little time but then walk away, after all a lot of the interaction was so futile.
Yet it’s not, it might look like it is from the edge, but the very real and genuine connections and support I’ve received from a number of different people has reignited the value of social media for me, and I’m back there swimming lengths with the best of them….now if only that would translate to an actual swimming bath 
Future
Finally I wanted to reflect on the future. I’ve been really keen to raise awareness of the fantastic support we received from our local hospice, Rowcroft, and particularly their Hospice at Home service. To that end an extract from one of my blog posts features in their latest newsletter and on their website. I hope that by sharing our experience people will realise what is available to them, will find comfort and hope for what may lay ahead for them, and members of the local community may even dig into their pockets and provide some monetary support.
I’ve also been taking the time after Dad’s death to consider my own future and what it might look like. I’ve created a Pinterest board titled Work Less, Live More that includes my quasi bucket/to-do list. Take a look and let me know if you want to join me on any of the activities and please do feel free to suggest others.
101 days without Dad has sharpened my focus and enabled me to address issues of balance in my life. I’ve not felt as optimistic about life, or as creative or energised for a long time. Life will never be the same, but I have no intention of ‘getting over it’, rather living with his memory and tuning in occasionally to his voice in my ear, encouraging me to stretch myself, take risks and enjoy life to the full. I’m finally learning to Let it Go.
Ten top tips for new bloggers
I tweeted today that it was my three year blogging anniversary and Sarah Carr sent this tweet:
140 characters would not suffice for such a question so this blog post is for Sarah, and anyone else who is interested. I hope you find it useful and I’d welcome your feedback, comments and own suggestions.
1. There are no rules
It’s your blog so you make the rules. There are scores of articles out there about how and what to blog, about what will get the most attention, but I think it’s a very personal choice. Why you blog and who you are aiming your blog at are very personal choices. In the spirit of top tip number one, what follows are suggestions, ideas and thoughts – they’re straw men that I’ve put up hoping people will debate, engage with, pull apart and disagree with. I’m not saying this is how, or why, anyone should blog, I’m just offering a few pointers as a starter for ten. Blogging is a bit like swimming, you won’t really get it until you jump in the pool and give it a go.
2. Ask yourself why
If you are thinking of starting blogging consider why. I’d suggest that the best reason is because you want to and the absolute worse are because you think you should, or someone has told you to, or you’re worried that you’re missing out. In my opinion you are missing out, but that in itself is not reason to start! My blog is a personal mish mash of thoughts, ideas and experiences. I blog about anything that takes my fancy so it is a very mixed bag. That seems to work, a lot of my visitors are one offs, I don’t really have a regular readership although 35 people are subscribed to my blog so someone somewhere must be interested.
3. Blogging should be a pleasure and not a chore
This is one of the biggest mistakes I see people new to blogging make, and I suspect that is why there are so many blogs out there with only two or three posts. Take the pressure off, now, stop viewing it as a task that needs done and consider it as a pleasure. I try to treat my blog as an online repository of what has interested me or intrigued me. It is not something I feel that I *must* do. When I started out I felt obliged to blog regularly, and arguably it’s a good habit to get into, but if i felt I had to blog every week it would remove the pleasure of it for me. Horses for courses so to speak (not a burger reference), if routine and structure works for you then by all means schedule your blogging, but personally I much prefer blogging when I feel like it.
4. Try not to overthink it
An extension of the last point really, and one that is much harder to do than suggest. My preference is for blog posts that offer a view, usually with some sort of base in evidence (or occasionally anecdote). I like it when bloggers cite their sources so I can trace back and get more information if I want it. That said my personal preference is that a blog post isn’t written like an academic paper or a formal report. I want it to be an easy read and so when I’m blogging I try to bear this in mind and I try to keep my own posts suitably light, while providing additional information if I can.
5. Tag
Most people write to be read. Tagging helps with this enormously because it allows search engines to find your content and send people your way.
6. Images and visuals
I always try to include at least one image or visual in each of my posts. Again this is personal preference I’m a visual learner and aesthetics are important to me, so I try to include images where possible. Since I’ve been blogging I find myself engaging with visuals far more, I take more photos and sometimes spot things and go out of my way to capture it because I know it will come in useful to illustrate a blog post at some stage. With the rise of Pinterest and Scoopit and other platforms that curate content with an emphasis on visuals, this need is probably a growing one.
7. The platform is not as important as the content
I don’t know much about this to be honest. I started blogging with WordPress and have found it straight forward and easy to use, so I have stayed with them. I’m not sure that the platform is as important as the content although I suspect people who blog for more professional reasons or to make money from it will have a different view? Hopefully this one will get picked up in the comments.
8. Remember once it’s out there it’s there for an eternity
Possibly an obvious one this one but if you put something on the internet it stays there, even if you delete it. Basic rules, mind your manners, don’t blog anything unless you’re happy for your mum and/or your boss to read it. Think before you hit publish.
9. Engage, engage, engage without over promoting
This is the crux of it for me. I blog so that I can share an experience, thought or idea, but the real value comes from the discussion or engagement with it. So I really *really* welcome comments and links back to my blog. I always try to cross reference and link people to other people’s content and blog posts too. That said, there is nothing worse than someone who is constantly shouting about their new blog posts. It’s a hard balance to hit and one that is important – you want the world to know you’ve blogged, because you want engagement and discussion, but you don’t want to be one of those people who is always self-promoting. Well maybe you do, in which case tip number one – it’s your shout, there are no rules; but if you don’t then maybe tweet your blog post when it’s first available, and then I have a rule of three, I never tweet about the same post more than three times – even if I know I’d appreciate input from people. I just hope that it will come to their attention.
10. Start thinking like a blogger and enjoy it
This is an extension of the point in tip six, in the same way that I wander through life now with an increased awareness of images that would support a blog post, I’m also always subconsciously tuned into look for content that would form the basis of a good post. An article, report, video or tweet that I think would warrant more attention. I have a massive long list of blog posts that I may one day get around to writing because of this, but I really have learnt to live tip three, so I’ll get there eventually and if I don’t the world wont stop turning. The absolute most important thing for me is to enjoy blogging, the connections I make and the discussion it promotes.
So on that note…..I’d love your comments and thoughts.
Taking Care Further – Hospice at Home
So much has happened in the last week that I would like to blog about but one of the side effects of grief that I hadn’t fully appreciated is my complete inability to concentrate on anything for more than two minutes! Given this current affliction, that I’m confident I will recover from in time (probably about the same time I start sleeping through the night rather than waking up and listening for noises) I am not going to blog about Dad’s death just yet, not in detail. I’m also not going to blog about how I’m left feeling, not yet, but I promise I will in time.
The one thing I didn’t want to wait too long to blog about was the absolutely amazing and life changing support that we received as a family from the Hospice at Home service provided by Rowcroft, our local hospice. I’m going to try to explain a little about Hospice at Home, how we came to meet these phenomenal people, and the difference it made (all in spurts of two minutes concentration). When Dad received his terminal diagnosis I suspected that we’d be involved with Rowcroft in some way, but never could I have predicted quite what a difference it would make.
Dad had a two week period as an inpatient at Rowcroft towards the end of his life, this happened once he actively decided he wanted no further treatment from the medical team at the local hospital. Before that he had met a number of social workers from the hospice and the one that made a lasting impression on Mum was Lynne (she never stops talking about how lovely she is) and he had also been receiving support from a specialist nurse, Tracy, who did a great job of coordinating the different aspects of Dad’s care, of coming out to the home to visit my folks, and of generally managing to focus on what Dad wanted and how we could all work together to achieve that. It was Tracy who arranged his inpatient stay and it was following her visit to see Dad at home a couple weeks later that the Hospice at Home service arrived in our lives. We’ve a lot to thank her for.
The Hospice at Home service does it exactly what it says on the tin. It is available to patients in the last two weeks of their lives, and it provides them with invaluable support to enable them to remain in their own home. It was only after Dad left the hospice that he decided he wanted to die at home. When we had discussed it previously he wasn’t too keen, I think both him and Mum (and I would have been too if I was asked) were a little scared about how it would work, and I know that Dad told me he was worried about having bad memories associated with our family home which has always been such a happy place. I can reassure you that our family home has only been enriched by the memories we have formed in the last two weeks, and the people who we have met and who became a part of our family for that short period; I believe that Dad had a fantastic death, there were ups and downs and some scary moments, but Dad wouldn’t have had it any other way. Dad lived his death much the same as he lived his life, and his illness – with a stubborn determination, a sense of humour and a positive mental attitude – all in his own way. The Hospice at Home service* enabled that to happen.
Dad died on a Thursday morning and we had someone from Hospice at Home with us 24-7 that week. We nearly bit the Sister’s hand off when she offered us someone to do a nightshift that Saturday. Dad had been getting worse since the previous weekend and we were all exhausted from lack of sleep, we had brought a baby monitor which meant we didn’t need to be sat in with Dad all the time, but by this point it was beginning to be a mixed blessing because it meant we were constantly up in the night when Dad was coughing or dreaming! The first night Mandy stayed, she came with her own hot water bottle and blanket, she walked into our home having no real idea of what she’d find and she just fitted in. She was professional and polite but had no airs or graces. She was amazing with Dad (who was still awake some of the time then), patient and interested with Mum and myself, and friendly with the dog and cat. That night I was on my best behaviour and went to bed intending to keep out of her way….but it didn’t last, I was awake twice in the night and popped in to check Dad and Mandy were ok and I can’t tell you how ok it felt to be wearing my PJs in front of someone I’d met less than 12hours earlier!
That was a theme that continued really, both me in my PJs and the comfort and ease at having these people in our family home. Mandy covered the first night, Mum and I managed Sunday day time on our own but were relieved when Tracie arrived for the second night. At this stage Dad was declining quite a lot and it was a big relief to goto bed knowing there was someone with him – nights and weekends have always been the hardest and it made such a difference to know that there was someone there looking out for Dad and to provide support for us if we needed it.
From Monday we were lucky enough to get 24 hour care and support. Monday morning saw Jane come, Monday afternoon-evening was Elaine (that was the Spotify night but that deserves a post in its own right another time), Monday night was Lisa. Tuesday morning Jane was back and she persuaded me to goto work for my leaving do (with Mum’s encouragement too) as it was what Dad would have wanted (he’d told me as much the week before) – at this stage I was fairly convinced that Dad wouldn’t die if I was with him so I completely expected he would have died by the time I got home (I was out for 90 mins – another blog post required for my amazing send off – another time) but he hadn’t and that felt like a huge weight had lifted.
Tuesday afternoon-evening saw Chris come into our home, by this stage I was seriously frazzled and couldn’t believe Dad was still with us – it was my cousin’s birthday the next day (Dad’s favourite niece – not that he ever had favourite’s you understand) and I was desperate for him not to die on her birthday; Chris was very patient, almost zen like and she simply pointed out that Dad would go when he was ready. I felt ridiculously guilty at the time, thought she must have thought I was some awful daughter wishing him away, but it really wasn’t that. Dad surprised us all anyhow because he lived past her birthday. Tuesday night saw Mandy back again after a few days off, Wednesday morning was Karen’s turn, Wednesday afternoon-evening Chris was back again and Wednesday night Mandy completed her hattrick. Dad died at the end of Mandy’s shift, she was due to leave at 7am and he died just before with Mandy and (blonde) Sister Sue with us. Lovely, lovely Elaine was due to be back with Dad on Thursday morning, she had shared our playlist hijinks and I think she had seen our little family at it’s most mad, and she made him respectable for the undertakers and kept us all company.
In addition to the people I’ve mentioned above we also got to meet the two Sister Sues (one blonde and one brunette), Sister Anne and the legendary Sister Clare whose reputation preceded her. Clare’s staff raved about her, I’d done some internet digging and knew that Clare was special, and most importantly Clare was on the poster at the bus stop outside Torbay Hospital – Mum have regularly seen that poster but never had we appreciated what a difference the service would make. When Clare visited she told us a little of the history and that she had been involved with Hospice at Home since it’s inception, we have a lot to thank her for. Night sister’s have drivers and the whole service is coordinated by Teresa during the day and I’m sure there are lots of bits of it that we don’t understand but we are grateful for none the less.
This post doesn’t even begin to tell the full story, it doesn’t really speak about what these brilliant people did, they gave him medication, kept him comfortable, changed his position, washed him, joked with him, spoke to him, calmed him, held his hand….the list goes on. What they also did was support his family members and friends and share the experience with us, by being part of it but also by sharing themselves. We learnt about their families and friends, previous experience, reasons for doing the job they all do, bits about their childhood and upbringing – it could easily have felt like an onslaught of strangers in and out of our home, but it didn’t to me, these were people who were sharing in our journey and sharing themselves with us. Really, really special.
I’ve raved about the support we received to a few people and most people respond along the lines of ‘Glad to hear it, but wouldn’t you expect that from a hospice’? Quite simply no, there is a world of difference between what you hope for or what you expect and then what you experience. So often since Dad has been ill we have had our hopes and expectations dashed – usually by a poorly under-resourced system rather than any individual – but no, I couldn’t have hoped or believed that the support we received would have been as good as it was. Rowcroft’s support, and particularly for us the Hospice at Home support, really did take care further. I really couldn’t have wished for a better death for my Dad, or better support for us as a family.
We’ve requested donations in lieu of flowers at his funeral for the Hospice at Home appeal, and watch this space I can imagine there will be a few more attempts to raise funds or awareness over the coming months.
*I’ll write a blog post another time with other people who played a pivotal role such as the Community Equipment Service, the District Nurses and Dad’s amazing GP (and his equally lovely secretary) – it really was a team effort.
JANUARY 2013 Update: I’m delighted to share that the retiring collection at Dad’s funeral raised £911.03 for the Hospice at Home Appeal.
I’m also honoured that Rowcroft Hospice have featured an extract from this post in their newsletter to help raise awareness of the fantastic work that they do.
If you would like to know more about the hospice, their amazing services, or would like to make a donation yourself please visit their website by clicking here.
Reaching critical mass? Social media at #NCASC
Last month I attended my fourth National Children and Adult Services Conference #NCASC in Eastbourne. The first time I attended in 2009 was to launch the resources from Safety Matters, an action research Change Project I’d been running at RiPfA focusing on adult safeguarding. We had a session in Harrogate presented by myself and a couple people from the project who worked in one of the local authority members in our network. The session, and resources, were really well received; the feedback was amazing and I left clutching a handful of business cards and a big fat grin of satisfaction! We followed up afterwards by email or phonecall with the contacts we had made. At that time I’d been using Facebook for two years, Twitter for just over one and LinkedIn for a mere six months but I wasn’t confident of the value of any of them for my working life.
Fast forward to NCASC 2010 in Manchester and l can share with you that there were three people tweeting from conference about adult social care, three of us, Vic @cpeanose, Mark @MarkWatsonKM and myself. I suppose there may have been one or two other exhibitors or journalists tweeting, and I think Jasmine @Jasmine_Ali was tweeting about children’s services but I couldn’t confidently name any more. There was no organised hashtag and very little online action, but I left convinced that social media had more to offer our sector. Last year we started to get a momentum building at NCASC 2011 in London; there was a veritable feast of tweeters, policy makers, journalists, exhibitors and at last an (unofficial) hashtag and engagement with people not attending conference. I shared some thoughts on it here:
This was my third time at NCASC and each year I leave exhausted with a lot more to think about (and a head full of more ideas) than when I arrived. I usually meet a few people in person that I’ve not met before, my favourites this year were @jaimeelewis @mroutled and @philblogs and I was also delighted to see far more real life networking inspired by twitter connections. [As an aside I do believe that the #socialcare sector is finally realising the potential of #socmed].
Ever the optimist, despite having my bid for a social media session rejected in 2011, like a dogged determined stubborn one woman show with a belief for something better, I persevered. This year I was successful in my bid to run a social media session at NCASC 2012. The focus was Social media as a tool for citizen and community engagement and three years after starting talking online about the value of social media, and two years since RiPfA had started to use social media to engage people with our work and coproduce content, we had the opportunity to talk to other people about it. I was given the foyer bar area, in a lunchtime slot, up against some brilliant alternative sessions including another RiPfA one led by @gerrynos and @rich_w talking about our joint work on user-led organisations. Let’s just say I wasn’t optimistic about expected attendance.
What happened next really surprised me, people arrived, and more people arrived and more people arrived until there was standing room only:
Even better people participated; I didn’t want a session on social media to involve me talking at people, so it was really rather important that people shared their thoughts and ideas. I was also at that point in conference myself where I thought if anyone else talked at me my head might explode; I’m quite a kinaesthetic learner who heavily relies on the left side of my brain, and there had been lots of words but little else at that point – good words mind, but lots of information broadcast. So I was delighted that the audience participated and also engaged people not in the room through using twitter. My slides are below:
Technology for living
Last week I attended the National Children and Adult Services Conference #NCASC in Eastbourne – I’ll blog about the session I ran later this week, but one of the things that struck me as a theme throughout the conference was the simple things that we could do to make people’s lives easier. I attended a session by Staffordshire County Council talking about some of their new approaches to providing support for people to live independently. It was a good session, I enjoyed the format – using short video clips to myth bust people’s assumptions. That said the thing I took away was the story of the automatic pill dispenser and the impact it had on one of the presenter’s (Emily I think?) grandparents – not high tech, not wifi enabled or encrypted or multidisciplinary, just plain and simple battery operated brilliance.
There were a handful of people who use services at the conference offering their perspective and not too surprisingly none of them were too fussed where their support came from, whether it was health or social care, but they all wanted to live as independently as possible. While I was at #NCASC my Dad was staying in our local hospice, he is terminally ill with bile duct cancer and had been admitted the week before I went away. One of the hardest things to witness is the impact that Dad’s illness has had on his and mum’s independence. I completely related to the story of the pill dispenser and the simple positive impact it could have.
So today I’m celebrating another technological break through…a baby monitor.
This nifty little device allows Dad to be in bed upstairs and whoever is looking out for him to carry on as usual elsewhere in the house – and yet to be tested but hopefully in the garden or next door with Gran. Mum bought the monitor from Boots this afternoon and Dad was quick to road test it and request a cuppa tea from me earlier, complete with sarcastic comment about whether I’d gone to India to pick the tea when it wasn’t delivered quick enough. He also massively enjoyed making animal noises and scaring the life out of my Mum when she came home – it was one of the first times in a while I’ve heard him laugh, so it was worth it just for that.
It will also be interesting to see whether it allows Mum to sleep easier tonight knowing that she doesn’t need to be listening out for Dad. That said we’ll only truly tell with time, I’m staying at the folks tonight (my brother was there last night) but I’m keen to only stay one night if I can help it…so hopefully the monitor will make that a little easier. We’ll see. Next time I’ll discuss the power of Skype and/or the wifi picture frame, but for now all credit to the baby monitor!
Jobs with benefits
Just a quick post to (hopefully) gather some comments from you all. I recently resigned and currently have no real idea how I’ll be paying my mortgage in the not too distant future, so as you tend to do I’ve been looking at jobs. Notice the language – I’ve been looking at jobs rather than looking for a job. I love my current job and the decision to resign was an incredibly hard one, in fact I had a wobble earlier today when I wondered whether I’d made the right decision. However the pendulum has swung back and I’m confident again that I have, and also confident in my decision to look at jobs, see what is out there, and consider really very carefully if I want to apply for one.
The upside of this is that I’m only likely to apply for jobs I want, I really really want <a zigazig ha> which should save time and will hopefully (if I hold my nerve) mean that I take a positive step forward into a new role that fits with my talents and interests. That’s the plan anyhow. The other upside of this looking at jobs, not looking for a job, is that I’m keeping my objectivity a little longer than I would normally and I’ve started exploring the world of employee benefits.
As someone whose proper jobs have always been in academia, civil service or for charities, the idea of benefits that sound like benefits are novel. I absolutely love my current flexible working arrangement which sees me working 7.5hrs any time between 8am and 6pm – core hours (when you have to be working) are 10-4. I don’t have any sort of routine in my life so being able to get into work one day at 10am and start another at 8am to skip off early evening has always appealed. That said of late the flexible hours have started to backfire, I’ve found myself getting up to start work early, with the intention of finishing early, but actually found myself just working longer and longer hours. Similarly what used to be an enjoyable Sunday afternoon spent musing on work, scribbling in my moleskine or drawing on a flipchart, sometime in the last year or so had turned into just normal work. On those Sundays I didn’t get to do work in the afternoon I’d approach the evening with an anxiety and have to power through so that I could start the week prepared and ready for whatever was coming up. Weekends off, like completely off, have been an absolute rarity, and my OU study has managed to invade any that were truly work-free.
So imagine my delight when I saw an interesting sounding job, Director of Methodology at NatCen which is definitely worth a look at. Imagine even more my surprise to note the following:
Benefits include a generous holiday entitlement and a defined contribution pension scheme, as well as every other Friday off.
Inspired, quite simply inspired. There is stacks of evidence (note to self – go find the links) that suggests flexible benefits support employees to work more effectively and productively, that happy and healthy employees bring benefits to their organisations. So why were I, @charstamper and @brownevk all so taken with this benefit? It may have been part novelty, or it may have just been the freedom to imagine longer weekends. I have no doubt whatsoever that whoever were to get that role would end up working weekends anyway, so why not acknowledge and reward it. I know if I worked a 9 day fortnight I’d pick the hours up elsewhere, so it’s not like the employer loses anything – and yet it still elicited the twitter gasps and nods of approval. It’s not in my gift to offer my staff benefits, not like that, but trust me if I could I’d do it tomorrow.
So what do you reckon? What other amazing benefits are out there? What is your favourite benefit? Do you work for the money/the benefits/the love of it/as a stepping stone? I’ve lived a sheltered life and think it would be good to know what is considered normal before dipping a toe back in the job market so please do add comments here or on twitter.
The importance of feedback
A couple of weeks ago I made a momentous decision.
I decided to resign from my job.
Dear Colleague
It is with regret that I am writing to let you know that I have taken the decision to resign as Director of research in practice for adults, and move on from Dartington. I’ve worked for RiPfA for over six years, have enjoyed my time immensely and feel privileged to have had the opportunity to work closely with so many committed and passionate people across the adult social care sector.
I am extremely proud of RiPfA, the support it provides and the progress that it has made to support evidence-informed practice over the past seven years. I will remain in post until the end of November. We are using this opportunity to look at the leadership needs of the organisation over the coming years and we expect recruitment to start later this year.
Please don’t hesitate to get in touch if you would like to discuss or if you have any questions.
This was one of the hardest decisions I’ve ever made. I love my job and really enjoy the people that I work with, within RiPfA and throughout the social care sector. I’m sure in time I’ll blog some more about the decision, the learning and the stacks and stacks of ideas that I’m not likely to now see to fruition but I hope someone else will take and use. In the meantime the answer to the question I’ve been asked the most is: I don’t know. I have no concrete plans for the future, a stack of ideas, but no job or certain plans so do get in touch if you would like any of them and/or if you know of any opportunities I might be interested in.
The other point I wanted to make was just how lovely most people have been since I shared my decision with them. I have been blown away by the compliments, the support and the regard that people seemed to have for me, as well as for RiPfA.
It really has been a difficult but wonderful week.
So my final thought for now is that if you know someone who you think does a good job, then why not let them know next week. I suspect we all probably underestimate the power of positive feedback and as lovely as it is to hear things now I’m moving on, I probably could have done with hearing them (or believing them) before. Go on, make someone’s day.
Engagement with research #openssw
Am at #OpenSSW today, going to be talking about engagement, evidence informed practice and research.
Will blog later but for now, here’s how to NOT engage ppl w research!
Exceptional achievements – spirit in motion
I can’t quite believe I’m typing this. At the start of the year I booked Thursday off work – it would be my Dad’s 65th birthday and I booked it so that I could spend the day with Mum, reminiscing and supporting her. I was completely confident that Dad would have died months previously. It is almost five years since my Dad was diagnosed with cholangiocarcinoma, cancer of the bile duct. It was his 60th birthday celebration when we realised he was properly poorly and had turned yellow! I’ve written before of what has happened since then and earlier this year we were told Dad was terminally ill, with no treatment options left but chemotherapy. Once the palliative chemo was finished (a couple weeks ago) it was onto a new, and final phase, of symptom management.
Yet, amazingly, spurred on by the joy of being a Grandad for the second time, and inspired by the Olympics and Paralympics, Bobby is still very much alive and kicking. He isn’t as alive as he once was, he isn’t actually kicking, but he is still able to walk around and get himself up and downstairs. Dad’s scan results show that his tumour continues to grow and the cancer to spread. My parents have both separately discussed dying with me and both mention that they expect (and hope) that Dad’s death will be sudden and not a long, slow decline. The unspoken element of this is the simple fact that Dad has been on a long, painfully slow decline for the past five years but luckily it has been so slow that we’ve come to accept it without realising it or focusing on it too much.
As the paralympic ceremony closes, and we all take a moment to recognise exceptional achievements, I’m scribbling this blog post as a note to self about Bobby J’s embodiment of the paralympic motto ‘Spirit in Motion’. Dad has an amazing spirit, his own superhuman endeavours and ultimately what I consider to be a truly exceptional achievement in living with cancer, living not dying.
