Unpaid research work

For years there has been concern in the research world about ethics of paying people to participate in research, whether it is necessary and how much is appropriate. In social care research there is a growing expectation that those who access services should receive some sort of payment or honorarium for participation in research work. This seems completely reasonable to me, if people give their time they should be rewarded accordingly.

Therefore I was a little concerned when I looked into the latest addition to research jobs added to Guardian Jobs today. Having been involved with recruitment for a couple of projects recently I’ve been interested to see what else is out on the market. Today I did a search on Guardian jobs and found the following:

There were 99 jobs added in the last day, when ‘research’ was the search term. Over half of them (53 jobs) were unpaid, voluntary posts or interns and a couple more just offered expenses as a daily rate.

Maybe I’m over egging this, but that’s over half of those posts being offered without pay. I’m sure that the experience will be valuable for people, and I’m sure there are other perks to such a role, but I can’t help but think people are taking advantage of the current economic climate to get some cheap labour. I’m also not convinced that it will do research, it’s reputation or uptake, any real benefit if people without the relevant skills or experience are involved. I’m not doubting there will be some very well qualified people applying for these posts, it’s a tough job market at the moment, but it doesn’t feel right to me.

What do you think? Have you been an intern/are you an intern? Do you have interns and voluntary workers working for you?

Don’t count the days, make the days count

Unless you are living in a cave, there is a good chance that you will know that the 30th Olympiad, London 2012, opened in a spectacular ceremony on Friday night. I’ll not talk about that, there are some excellent reviews about it online, my Mum’s take was that it was ‘fantastic but too long’, my Gran wanted to see more of the Queen and went to bed after the first hour, I watched it yesterday and loved it.

I’m not quite sure why but I really like the Presidenti of the IOC, Jacques Rogge. He reminds me of a friendly grandfather figure and he is often giving sound advice. His gem from the Opening Ceremony was this:

‘And to the athletes I offer this thought, your talent, your dedication and commitment brought you here, now you have a chance to become true Olympians. That honour is determined not by whether you win but by how you compete’

I love the sentiment, I love how everyone interviewed in the first couple days have talked about the success being in making it to perform at the Olympics, even people who have not qualified for further action.

Yesterday was the first full day of Olympics action and it was also the day that my Dad’s bestmate’s daughter got married. He and Mum received their invite to the wedding months ago, none of us thought Dad would be around for it as at the time he was seriously ill. A couple weeks ago Dad’s chemo was stopped, so I was stood down as Mum’s reserve date and the hope was that he would make it himself. This was really important for him and definitely something that he wanted to do. I spoke to my parents yesterday morning and they were all set for the wedding, Dad was still very tired and not feeling one hundred percent but he was up for it.

An hour later I got a phonecall from Mum; Dad had been sick. This is a relatively new development for Bobby, even throughout his chemo he has been nauseous but not suffered from vomiting. Yesterday wasn’t the first time that it had happened, although it was his worst episode and it completely wiped him out. Mum was in a little bit of a panic, she was torn between attending the wedding or staying home with Dad, she was calling to ask whether I’d come over and stay with him. My Saturday plans were shelved and over to the folks I went.

Bobby was looking really quite rough when I got there, but him and I both played it down until Mum had gone – at which point we had an honest conversation. He is concerned that the tumour is growing, it has started bleeding again, he knows that there is nothing more that can be done and I think he is a little bit scared. That said, he was also just exhausted. Bobby was packed off to bed and I settled down to watch the Olympics.

I was so grateful that there was something so engrossing and engaging on TV to take my mind off things. Later on that afternoon Dad surfaced and we spent hours watching the coverage together. We were armchair pundits of the highest standard, Olympic standard in fact.

As I sat thinking about the dedication, effort and hours of fighting that these athletes put into making it to the Olympics, I can’t help but draw parallels to my Dad’s last five years, the effort and hours of fighting. As the sign in front of their television proclaims ‘Don’t count the days, make the days count’, Dad may not be training for an Olympics, but I thought Jacques Rogge’s words were equally applicable, it’s not whether you win in the end, it’s how you compete.

Liberation….for now

This will be a short post to update on Dad and to highlight a new book featured by the Guardian that looks brilliant!

Dad finished his antibiotics yesterday, having finished chemotherapy last week. He has a handful of pills to still take each morning, and for the time being still has his PICC line that needs flushing each week. He also needs to be closely monitored with fortnightly blood tests and he’ll continue to take his own obs, temperature/weight/O2 sats each day. I’m also sure the unofficial but ever-effective Sylv-monitoring will continue. The only additional treatment available to him now is to continue blood transfusions, when and if he needs them (although the chemo does appear to have slowed the bleeding tumour down) and to treat any infections or illnesses that crop up, as you would with anyone else.

So to all intents and purposes Dad is free, certainly from the jaws of chemo, if not from the cancer itself. Dad’s condition is still very much terminal, he could decline rapidly (or catastrophically deterioriate, as we were once told) at any moment. He could also of course continue his fight and face an inevitable gradual decline, after all he’s 64 and old age will get all of us eventually, sometimes I think Dad can convince himself that it’s not the cancer that is the problem, just old age creeping up on him.

His oncologist wont see him again now until mid September. When I was watching 24 Hours in A&E at the weekend a lady referenced the fact that her next appointment wasn’t for 6 weeks so at least her consultant believed she’d live that long. It made me chuckle, the subtle ever-present signs and symbols that people can find when they look for them…we had all commented on the fact that Dad’s appointment was a whole eight weeks away, and taken comfort in that inherent optimism. While I at least am not completely confident he will make it that far, but we have to hope and continue hoping he will.

My Dad is a phenomenal example of how setting short term goals and striving for them can keep you going. The immediate goal is to live to see his second granddaughter, due in two weeks time. If he manages that, the almost unthinkable landmark is his 65th birthday in September, which would also coincide with his initial diagnosis five years ago. I really hope for my Dad that he lives that long, in the immediate term I think becoming a Grandad again will be a boost for his soul, aiming towards being able to claim his pension at least once is critically important, as is (in some small way) not breaking the appointment he has made with his oncologist for later in September – my Dad is a man of his word and once an appointment is made, he’ll damn well make it, unless of course the grim reaper gets him first.

So what has this got to do with a book I hear you ask? The illustration above comes from a feature in the Guardian of a new book by Nick Wadley, Man + Doctor, that charts his experience of the medical profession and hospitalisation. I’ve already ordered myself a copy and look forward to flicking through and nodding (I know I will) with the familiar resonance of life drawn.

The final drawing featured in the Guardian was the one above, marking his liberation from hospital. Dad certainly isn’t skipping and dancing his way to a new healthy start in life, but I hope he feels something similar, a liberation as he is released from treatment, in time to enjoy our fleeting English summer.

Where time stops but your thoughts still go on

OK, you’d be allowed to think I’m becoming slightly obsessed as I sit and write my second post about 24 Hours in A&E this evening! I have just watched last week’s episode, off the back of finding such resonance with the episode recorded the week before. The stars of this week’s show from my perspective were Ruby and her daughter Sarah. Ruby has been brought into A&E with a swollen knee, the doctor who visits her asks her to tell her about herself, she says she’ll start at the beginning, the conversation goes like this:

Doc: Do you have any medical conditions at all?

Ruby: I’ve had two replacement hips, this one (the right side) was done in July 2009, that one in October 2001. I’ve had high blood pressure but it’s been under control, that’s all.

Sarah: …and stomach cancer

Ruby: Ooooh, I’ve got stomach cancer as well

What I thought was quite striking was how Sarah (Ruby’s daughter) describes finding out that her mother had stomach cancer:

I was with Mum when she was diagnosed with stomach cancer. To start off with I don’t think either of us really clicked that thats what they were saying, umm, they said, what was it that she said? ‘There’s a little bit of trouble’, or ‘there’s something that’s abnormal’, ‘something abnormal’, and um, we both went ‘ohh’ and then it sunk in, and it was like Oh My God. And Mum was so dignified about it, and we both just sat there and it sort of filters in really slowly and you don’t know where you’re going, it’s the most peculiar moment in time where time stops but your thoughts still go on, and then all you can think about, is how do I make this better.

It was just another example of something that rang a bell for me, that sense of hearing but not processing, of time standing still but moving on at the same time. If you don’t know what it’s like to have cancer, or to imagine what it is like, and/or if you work with people in that situation, or are studying and want to know what it is like, then you could do much worse than taking an hour or two to watch 24 Hours in A&E.

Dancing the cancer dance

Sometimes I wonder whether there is something wrong with me. Given how much time I have spent in hospitals, and increasingly in our local Accident and Emergency Department, I’m not sure which bit of my brain still wants to feast on hospital documentaries, but I just can’t stop watching 24 Hours in A&E. I tend to record it and watch it when I feel able for it, and tonight I watched an episode from a couple weeks ago that just felt uncannily familiar. It focused on a lady called Josephine who was terminally ill with cancer, who was admitted to A&E with severe breathing difficulties caused by a bacterial infection. During the episode the consultant caring for her had to have the conversation with her (and her family members) about whether she would wish to be kept on life support if she needed intervention for her breathing if her condition were to deteriorate. She chose not to, something that I suspect came as a little bit of a shock for her family members.

They showed her daughter, Jackie, reconciling herself to her mum’s decision and discussing it with her niece and her partner and then she said something that cut through me like a knife, because she used words I’ve heard myself use. She said she couldn’t go back into her mum with red eyes (from crying) because she can’t let her think she’s given up on her. Throughout the episode you could see Jospehine’s daughter willing her better, I was torn between thinking she could go easy on her mum and that she was almost putting pressure on her to stay alive, and recognising myself the impossible situation you find yourself in knowing that if you show doubt you are giving too much away to your parent. There is a very real fear that if you stop believing in them, then they’ll stop believing and die. I don’t think the fear is of them dying in itself, so much as them dying prematurely because they are exhausted and you haven’t convinced them to keep going. Jackie also said something else I’ve muttered myself before, ‘Not yet, it’s too soon’.

I have danced that dance many times. It comes up regularly, although often the tune is slightly different! Should I stay over at my parents to enable my Mum to get a good night’s sleep or does that signal to my Dad that we both think he is more poorly than he realises; should I go on holiday/take the weekend away that has been planned for months and risk Mum being on her own if he deteriorates quickly and maybe not seeing Dad again or do I stay home, play it safe and show my inward concern to him; should I go and get medical help when his breathing starts deteriorating even when he is on oxygen in casualty, or does that make him panic. It is really hard to know how much encouragement to give someone, and when you are applying pressure to them, rather than supporting them reach an equilibrium again.

We are very lucky that Mum and Dad had a conversation very early on when he received his terminal diagnosis, with a nurse from the palliative care team. Dad signed a DNR last May and has had a treatment escalation plan written out since then. Mum keeps it in their hallway, by the phone, so we can flash it at the ambulance personnel whenever they arrive – and they always seem as relieved as we are that it is written, plain and simple, in black and white what intervention is appropriate. It got me thinking tonight perhaps we should all have conversations about what sort of life support we’d want if the need arose, rather than waiting until it is needed.

But I digress, this episode of 24 Hours in A&E featured a lovely nurse, Abbie, who was reflecting on caring for a terminally ill parent. She said:

“It would be my worst nightmare to have to look after one of my parents, if they were passing on. Here’s this person that you love so much, who brought you into this world, you know, they nurtured you to an age where you can finally start looking after yourself. They put you through schooling, you know help you get your first job, they help you do absolutely everything, every time you have a break up you always ring Mum or Dad crying, and I just think for the tables to be turned, where this person who you just think is the most amazing person in the world, is now lying in a bed, and their life is slowly coming to an end, and now you’re the one to look after them and try and nurture them and make the other end of life a little bit better, that must be just, it would be just so sad, but then maybe in a more positive way you can kind of give back what they gave you”

Josephine stayed in hospital for seventeen days. She died at home two weeks later on the 28th March 2012. I hope that by the time Josephine died, Jackie felt that the time was right. It must feel impossible to give up, but in a way I think you know when is right. I very much hope that I get the balance right between being optimistic and realistic, between coaxing and believing, between providing support and providing pressure. In the end I’m not sure it matters once we are all doing our best, as someone else said in the episode there is no real preparation for cancer and dealing with a terminal illness, I guess you just do the best you can.

This week has been a tough one, Dad was taken into hospital on Monday, there were no beds so he couldn’t be kept in so I took him home at about 7pm. We were back up to meet his consultant on Tuesday where he agreed that Dad should come off the palliative chemo he had been receiving. This is quite a signifiant decision really, but Mum and I reflected afterwards on how abrupt an ending it felt. There is no more treatment, Dad was first offered chemotherapy this time last Spring, he kept declining the offer until this Easter when he was so poorly we all thought he was going to die. The next time he was offered it he took it and he has been receiving it ever since.

For anyone who isn’t familiar with chemo it really does take over your life, the appointments, the drugs, the nausea, the infection risk, the tiredness and fatigue, the infections and other side effects. It has taken a gruelling toll on Dad’s body, which I guess isn’t too surprising given that it is effectively poison he is being given. All of that said, before he started chemo his tumour was bleeding so heavily that he couldn’t last a week without a blood transfusion, the chemo has worked some magic and despite all the other side effects, touch wood, for the moment the bleeding does seem under control. My sister’s second child is due in a couple of weeks so if all goes according to plan Dad will become a Grandad for the second time before he leaves this world.

On Wednesday we buried my grandfather, another reminder of the finality of life if any of us needed one. There was a definite sense of dress rehearsal to the event, it prompted many questions about what Dad would wish when the time came. Dad side-stepped most of this chat, with the occasional banterful comment thrown in, and when I saw him today he was still joking about what he would (or rather wouldn’t) want to wear for his funeral. My emotions about Dad’s situation swing fairly regularly from gratitude to despair, although most of the time they sit fairly in the middle at exhaustion.

As I watched the episode of A&E I think what I realised is that programmes like that make it all the more normal. Let’s be honest it is not normal to make banter about or so regularly to discuss funeral arrangements with your parents at my age, it is not normal to be up till the middle of the night in A&E departments patiently waiting for a bed, it is not normal to continue with the trivial every day matters when seconds earlier you were contemplating the fragility of life…and yet it also isn’t as isolating as it can sometimes feel, there are hundreds of people who face the same reality as us, each and every day. I guess cancer throws out any sense of normal, you readjust and live your lives with a different barometer, you dance to a different tune, and in the end you do your best, it’s all anyone can ask for.

The power of recognition and acceptance

There are two twitter conversations in the last twelve hours that have encouraged me to put fingers to keyboard – one was a discussion with @ermintrude2 @martinhowitt @copperbird @HelenHSAUK @jaxrafferty about obituaries and whether you should have ‘live obituaries’ and the other with a similar group and @timolloyd and @paulcoxon81 about social media and whether it can be taught.

You may be sat there wondering how the two can be linked, I’m going to suggest that they are, because they’re fundamentally about recognition and acceptance. Last night I posted my grandfather’s obituary from the local paper and I was delighted to receive comments from people who had read it and felt like they knew something of my Grandad. I guess there was a sense of recognition, I have a pride in being associated with such a great man (who if I’m honest is possibly no more or less great than anyone’s Grandad but I’m particularly proud of him because he was mine!) and I get a warm glow when other people also recognise in him what I experienced.

I was also remembering my first boss, who had worked for over 35 years in Special Education in Ireland when he retired. He spent about six months receiving awards and accolades, being dined and respected…all very definitely due, but we were talking over a cuppa on one of his last days at work and he remarked that he didn’t understand why it had taken him to retire, for people to encourage him. He was one of the most supportive people I have ever worked with, he saw my potential and invested a lot in me, building my confidence and belief. He took the time for me, we would often have early evening chats over tea once the rest of the department had emptied out. He was a truly great man, who had a significant influence on me and my thinking….and evidently on many other people’s. It did leave me wondering whether he would have had a better experience if he had received just some of that recognition earlier in his career.

So, how does that relate to suggestions about teaching social media. Well I guess for me, it all comes down to the same thing, recognition and acceptance. Anyone who can remember their childhood (I’m sure I’m not the only one who felt like this) can probably remember the mix of excitement and fear when you goto school for the first time (I felt something similar when I went to my first OU tutorial a few months ago) or when you join a new club, or move house, or start a new job – that sense of potential, wrapped up in a basal level of concern that you might not be accepted. That you might not fit. That you might get it wrong. I’m not sure that those of us who have been using social media for some time are necessarily the best people to advise on how to encourage or support people to use it, we’re already convinced or we wouldn’t be here. That said I do think people need to be comfortable to learn publicly, to risk making errors in public (most social media platforms are very public), to have a go, to contact people and risk that they won’t reply, to realise that there are slightly subtle differences in online communication, people may not reply because they don’t see something/are too busy but that doesn’t equate to ignoring someone – it took me a long time to feel comfortable with not trying to catch up with conversations.

So, what is this rambly post all about. I guess I have an overriding sense that we could all encourage each other a bit more than we do. In some way I suppose that is what #ff on twitter is about (although I don’t do that!) I hope it is also something of what Acknolwedgers is about too. Some public recognition. Maybe ‘live obituaries’ are a step too far, but perhaps an occasional public recognition or acknowledgement wouldn’t go a miss.

We rarely understand the totality of someone’s experience so if in doubt, a virtual high five, a word of encouragement, a response to their tweet, won’t do you any harm and it might have a considerable impact on the person stood at the edge of the circle trying to figure out how to join in. Go on, pay someone a compliment or give them an acknowledgement today.

Former magistrate was ‘man of people’

A former Torbay magistrate once described a ‘man of the people’ by a court colleague has died aged 94. Bert Langmead, a retired manager with the Post Office, joined the bench in 1962 and served on it for 26 years. During his last nine years on the bench until he stood down in 1988, Mr Langmead was also chairman on the licensing justices. When Mr Langmead retired from the bench, numerous tributes were paid to him by policemen, solicitors and court officials. Colin Jones, who was clerk to the court at the time, described Mr Langmead as

“A man of the people” and added ”You take with you not only our thanks and respect but our genuine affection and goodwill”.

Retired Torquay estate agent Barney Bettesworth, who served on the Torquay bench from 1975 to 1990, remembers his former colleague as someone who brought a common-sense approach to administering justice.

“He was a very amiable guy who was well balanced and brought a level-headed approach to the bench…I remember him as being very down to earth and someone I respected hugely during my time as a magistrate”.

During his time as licensing chief, Mr Langmead was critical of the drinking culture which was starting to develop among young people in Torbay. He told the Herald Express “Young people today are being conned – there is more to life than just boozing yourself to death”.

Mr Langmead was employed by the old General Post Office for 46 years. He joined in 1932 as a telegraph boy and worked his way up to postal superintendent in Torquay via stints in Teignmouth, Exeter and Paignton. He and his wife Margaret were married for 71 years. They met at the youth club run at Christchurch, Ellacombe in Torquay when he was 13 and his wife to be 11.

Gran and Grandad’s 67th wedding anniversary on my sister’s wedding day in 2007

In the months before the outbreak of World War Two, he enlisted in the Territorial Army and when was was declared was posted to France. Mr Langmead later served in Norway. When British forces were evacuated from Norway, he returned to this country and spent some time with an anti-aircraft duty in Kent. The couple were married in June 1941, in Exeter, and within weeks he was sent to Burma, where he served for the remainder of the war.

Mr Langmead was a regular churchgoer and served on the Cockington-with-Chelston Parochial Church Council. He was a churchwarden at St Matthews Church. Mr and Mrs Langmead have two daughters, Sylvia and Marion, five grandchildren and five great-grandchildren, with a sixth on the way. Daughter Sylvia said her father enjoyed a full life well into his 80s when, inevitably, his pace slowed.

“My father was a man of integrity and a true Torbay gentleman who will be sadly missed by everyone who knew him” said Sylvia.

Mr Langmead’s funeral took place yesterday at Christchurch in Ellacombe where he had been a boy chorister more than 80 years ago, followed by a burial service at Torquay Cemetery.

Time for some #homeadvantage

I was in London at the weekend, and again for work today, and on both occasions I’ve been struck by the new BA Olympics adverts. A tongue-in-cheek series focusing on the Olympics and encouraging people not to fly, instead promoting staying home to support Team GB during the Olympics and Paralympics.

There are a series of billboard and tube adverts too, and you can even type in your postcode on the BA website and create your own advert featuring a plane down your very own street, just click the link and enter your postcode.

It will be interesting to see how this campaign works for BA, I’ve always liked a spot of reverse psychology and I for one will be keeping an eye out for summer holiday bargains during the Olympic season. Until then, I’ll be supporting Team GB and their #homeadvantage all the way.

Goodness and mercy all my life, shall surely follow me

It was my Grandad’s funeral today. At 1pm sharp we walked into the Church where he sang as a boy. The 1pm sharp bit was quite lovely, Grandad was a man of orderliness, you could set your watch by the time him and my Gran sat down for dinner, at 1pm every day. Today it was not a Granny dinner that called us together, but a celebration of Grandad’s life. The Church was busy and lots of people hang around for refreshments afterwards once we’d been up for the burial.

The chat beforehand was that they’d be ‘no piping the eyes today’, a stiff upper lip was attempted by all but managed by few. It wasn’t so much the loss of my Grandad that hurt, he was a lovely man who’d had a full and fabulous life, but seeing my Gran follow his coffin out the Church was lip quivering for the best of us. They met in the Church youth club 80 years ago and had celebrated their 71st Wedding Anniversary last month. The other thought I couldn’t shake, and haven’t been able to shake for the last few weeks, is that this really was some sort of dress rehearsal for Dad. He was joking with the undertaker at the graveside and promised to avoid fat ladies singing for the near future. Here’s hoping.

Goodness and mercy all my life, shall surely follow me. And in God’s house for evermore my dwelling-place shall be.

For your tomorrow we gave our today

Tomorrow is my Grandad’s funeral. It’s being held in the church where he sang as a choir boy, where he was baptised, where he met my Gran…it seems a fitting place. Today I went to see him in the funeral home, it’s only the second time I’ve seen a body in a coffin. I wasn’t sure whether I wanted to go but it felt like a good step towards closure. I’m really glad I went, he looked very peaceful and strangely (given he died ten days ago) more like his self than he did when I saw him in hospital the day he died.

I’ll share his eulogy once tomorrow is over. I’d like the world to know a little more about my fantastic Grandad. The local paper are apparently compiling an article about him too, so that should be interesting. For now it’s going to be an early night for me and a bit more time reflecting on the meaning of life. There has been a lot of that lately, and I suspect it will continue. There is definitely something about end of life that forces you to take a moment and consider the everyday.

When you go home tell them of us and say, for your tomorrow we gave our today – Kohima Epitaph