The secret ingredient is love

I’ve spent this weekend at a wedding in Suffolk and had the chance to watch a craftswoman at work! Betty had offered to make her cousin and his wife their wedding cake as their wedding gift. They were delighted to accept and had a particular idea about what they wanted – three tiers of chocolate cake covered in white chocolate cigarellos and white roses. You can see the end result below:

How much do you think that cake is worth? Go on, what you reckon? £100? £200? £300? £400? Annoyingly I’m not going to give you the answer – mostly because I don’t know. Depending on where you live, and the quality of ingredients you’d like used, that cake could easily cost you anything between £200-500.

A few years ago I made my little sister’s wedding cake – she’s got modest tastes (not) and wanted four tiers. The bottom tier was fruit cake, followed by double chocolate cake, victoria sandwich and topped with lemon drizzle cake. Her husband is in the Army and she met him at Army Cadet Summer Camp (she was an adult instructor – nothing dodgy) hence the camouflage ribbon and little hearts. You can see it here:

What I can tell you is that the ingredients alone cost over £150 – I’m not a professional and don’t have access to suppliers for the things you need, so the ingredients were all from Sainsburys – yes I could have got them in Tesco or Lidl but it was a one off and my sister at that, so money was no object. So the ingredients alone – cake, marzipan, icing, dowels, cake boxes, ribbon, cake tin hire for the HUGE fruit cake – were over £150. Cost in the time, gas and stress and that cake was easily worth double that I’d say. Not to mention the number of times I did a dry run of all but the fruit cake.

The thing is when people get quotes for wedding cakes they nearly always think they’re extortionate – and to be honest I think I’d always sniff at a couple hundred quid and feel it was daylight robbery, after all anyone can bake a cake right. Well not so actually. The baking is only the first step, then there’s the icing, and the decorating, and the transporting, and the stacking, and the finishing. It really is much more complicated than you think. All of this is time consuming like you wouldn’t consider.

None of this even starts to consider the stress. The responsibility of making the centrepiece for someone else’s special day, takes a lot of the fun out of it. Watching Betty cutting, icing, stacking and decorating the wedding cake this weekend reminded me of just how stressful it is. Never again. Seriously. I did offer to help Betty out with her own cake (she’s getting married in three weeks) but she declined – and I am *so* relieved. Betty, in her real life, is a paramedic, so she’s trained to cope with stress and work under pressure – she is definitely more adept at it than I am.

My final thought is that the value of a friend or relative making your wedding cake is something that you can’t actually buy or put a cost on – it’s love, it really is a *massive* labour of love. So if you’re getting married any time soon, and someone offers to bake your wedding cake for you, please do accept, but accept graciously and spare a thought for the effort, time, cost and love that goes into it.

It’ll taste all the better once you appreciate the love that has gone into it.

 

 

10,000 views #cancer #servicedesign #networks #hope

I’ve been blogging since March 2010 and today I passed 10,000 views of my blog. I can’t quite believe it, even if you completely over-estimate spam bots and decide at least half of those visits didn’t result in a post being read, that’s still at least 5000 that did. Now I know some of you will be sat here reading this, feeling all smug as you regularly get lots of hits to your blog, I’m sure there are some of you who get that many in a week…. but I like to focus on quality as much as quantity

Given my love of stats I thought I’d share some with you in honour of my 10,000 view.

Top 10 posts

Home page - does what it says on the tin, front page

What is service design? - another fairly obvious title, if I say so myself! My attempt to define Service Design – awesome 18 comments too, great discussion

The Price of Life #23weekbabies - talks about the cost of care of babies born at 23 weeks – another busy post for comments, although was first where I really struggled to decide whether to post comments or not – in the end I decided it wasn’t for me to vet them

About - another obvious one, little mini biography of yours truly

10 key factors for successful networks - post highlighting research into networks and ten success factors

ServDes: value, trust, transparency, ethics and shared expertise - my reflections on the Nordic Conference on Service Design and Service Innovation in Linköping

Cancer – the price of hope - first of the top ten talking about my Dad’s battle with cholangiocarcinoma and the value of hope

End-of life care - post accompanying Dispatches on end of life care provision

Service recovery Virgin Media style - my experience with Virgin Media

Cancer – the cost of no cure - cancer treatments, cost effectiveness and rationing

Top five referrers: Twitter, BBC, Facebook, WimRampen’s blog, WordPress Tags

Top five search terms:

impossible is nothing	52
how to build a wendy house	26
successful networks	19
service recovery process	17
george blogs	15

Comments: I had no idea when I started blogging whether anyone would engage with what I had to say and I had a bit of a fear that no-one would ever comment – leaving me feeling that I was shouting in a void. To date I have 356 comments from real people and numerous deleted from spam bots.

I think over the past year or so I’ve become less bothered by whether people comment and more interested in whether what I write resonates with people. Interestingly a lot of what I blog about is Cancer and my Dad’s experience of living with it, so not exactly a cheery subject, but I’m always amazed at how much people are interested and supportive. I’m also surprised (and pleased) about the number of people who find my blog when looking for cancer information. I always wanted to present a more balanced experience, or at least not *just* a negative experience of living with cancer. I’m really pleased if anything I offer can help anyone with their own experience, this comment sums it up really:

My mother was admitted to the hospital one week ago and after tests they say she has bile duct cancer. They sent her home with a tube for drainage of the bile from the liver and set an appointment to discuss the treatment on May 11th. They said the cancer had spread to the liver and lungs. Thanks for sharing your experiences as it is helpful in dealing with this.

So here’s to the next 10,000 and thank you all for your support and interest. Oh, and in case anyone was wondering, just do it – start a blog, you’ll not look back!

Gezellig: living not dying

This past week was an eventful one, it seemed to last forever and quite a lot happened. Thursday was by far the most poignant day.

My sister and friends were in Wootton Bassett to welcome home Mark who was killed at the start of the week in Afghanistan, he was escorted to his flight home by their husbands and they were there to complete the circle when he landed back in the UK.

One of my friend’s Jo’s grandfather died – she’d lived with her grandparents as a teenager and Ed will be sorely missed. At about the same time, another friend Jo was giving birth to Johnny who I got to meet today:

My Mum and Dad celebrated their 38th Wedding Anniversary with a trip to see my Dad’s oncologist. Three months ago when we visited Dad was offered chemotherapy which he turned down, this time he was offered again. I can’t tell you how much better Dad looks at the moment, he says he is not aware of his tumour at all (and I believe him), whereas last time I was certain he was sick. It’s a strange old thing cancer, Dad has had a really mixed experience, but I was so proud of him as he explained to his consultant that he was enjoying his summer, him and Mum have been decorating this week, and he wasn’t ready for chemo again just yet. When the consultant explained again that there was a chance that Dad could get ill and then not be well enough to have it, Dad looked him in the eye and said he understood that he was going to die, but right now he didn’t feel ill, so he didn’t want to try it. Dad’s reasoning was that it was poison and he’s happy to take his chances just now. Mum still hopes that Dad will keep proving us all wrong and some ‘miracle’ might happen. She’s not prepared to give up hope just yet.

Thursday evening on BBC3 there was a documentary called Alex: A Life Fast Forward. I’m not going to go into detail but would recommend it to anyone who wants to know more about the amazing spirit of someone who was dying from Bone Cancer. In fact no, he wasn’t dying from cancer, he was very much living with it. I didn’t watch it on Thursday, instead I cried my way through it this afternoon. I found it seriously inspiring, sad and heart wrenching but no way tragic or depressing.

Watching Alex, his family and his friends gave me such an enormous sense of déjà vu. Quite early on in the documentary, his mum talks about not giving up hope, knowing he is dying but just hoping that something will come along to change things – this is sooo much how my Mum is. I guess its not surprising really given what they’re facing.

As I sat thinking about Alex’s experience, and the parallels to my Dad, the thing that struck me was how much of a positive attitude they bring to their situations. The documentary includes a family friend, Alex’s best mate’s father, Dr David Ebbs. He summed it up perfectly really when he says:

His way of dealing with it is not to deny it, because I don’t think he does, I think he knows and he understands. But he doesn’t feel that he needs to live it, as an illness, he needs to live the wellness and I think that is something to do with the kind of attitude that you have, you know, the glass is half full as opposed to half empty and I think he sees his, not just as half full, but actually there’s something that makes it bubble up a little bit more, you know, he’s got a little bit of froth on the top as well.

That’s my Dad all over. He’s not denying his illness, he’s not ignoring the fact he is terminally ill, he’s just not too bothered about it, it’s not that he doesn’t think about it, Alex talks about the fact that he thinks about cancer every day, I do and I’m fairly certain my Dad does too. In spite of that, Dad chooses to focus on living. Whenever I type a post like this I get concerned I’m somehow tempting fate (not that I really believe in fate – don’t ask, that’s a conversation for another time) but the very last thing I want to do is post about how well Dad is because I’m very aware of how quickly things can change. That said, I couldn’t not post and encourage you to watch the documentary, and to remember next time life is getting you down, that there is always something positive to focus on, you just need to find it.

Semper fidelis – Always Faithful #RIP Maldoon

On Monday this week Cpl Mark ‘Maldoon’ Palin was killed in Afghanistan. He was leading a patrol to recover component parts that would be used to make IEDs when he was killed by an IED. Mark was a young father to Lennon and married to Carla who is 5mths pregnant with their daughter. He was good friends with my brother in law and neighbours of my sister, who lives a few doors away from his family on camp.

Mark was doing a job he loved, leading from the front, a respected and relied upon Rifleman with a reputation for banter and humour – read his obituary to get more of an idea of who he was. His pal, Easty had this to say:

Maldoon – You have left a gigantic hole in our lives. I don’t know where to start and definitely don’t know where to finish….The banter was always (most of the time) good and there are so many memories that we will all remember.

Just over a year ago I wrote a post Respect please! after my sister’s next door neighbour, Cpl Chris Harrison, was killed in Afghanistan. I ended it as follows:

I just wanted to remind anyone who has bothered to read this far, of the reality of life for those who choose to serve in our armed forces. I guess I’d just like them to think twice before so quickly dismissing their efforts and relegating their profession.

A year on, another loss, Mark was the 377th British military death in Afghanistan since 2001. I’m not really sure why I’m writing this post, I guess partly in acknowledgement of the ultimate sacrifice that so many of our forces personnel make and partly in an attempt to raise people’s awareness and understanding of the impact. For the family and friends of these men, life will never be the same.

The Swift and Bold appeal provides immediate support and assistance for the families, girlfriends and boyfriends of the dead and wounded in those devastating first hours and days after a tragedy. In the medium and long term excess funds are used by the Rifles Regimental Trust to fund meaningful projects for the wounded and their families. If you would like to donate in memory of Mark you can do so on their website.

Santander customer service #fail

Last night as I was busy enjoying @PizzaCafeNewton and watching the Apprentice Final, I received a phonecall on my landline. The conversation went as follows:

Me: Hello

Caller: Hi, it’s Ben (cant remember his proper name) calling from Santander. Just to let you know this call may be recorded for training purposes.

Me: Uh huh

Caller: Can you confirm the first name of your address please

Me: Um, could you tell me what you’re calling about please

Caller: Um, I need you to confirm your address details first, they’re DPA requirements. I’m from Santander.

Me: Sorry Ben, I’m not sure I’m that comfortable confirming my details to you

Caller: Why not, it’s DPA requirements…Data Protection Act

Me: Well, yes, but I’m still not that happy with it. You called me, how do I know who you are (while really thinking I’d rather be enjoying my evening)

Caller: I’m Ben, from Santander

Me: Yes I know you say you are, but I don’t know that. I’m not that comfortable to be honest

Caller: *Long loud huffff* Oh well I can put something in writing if you want

Me: Yes please, that would be great, thanks.

Am I missing something here. I get called at home, by a bank, requesting my details – when I say no, they don’t even offer a number I can call them on (not that I’d particularly trust that either). Not sure whether it’s spam or just shite customer service but I’ll live without knowing what I’m missing for now.

#JSWEC Social Work Education Conference

I’m up in Manchester for this year’s Joint Social Work Education Conference – this is the 13th year that it has been run but the first time I’ve attended. I’m talking about ChangeCards – what they are, where they came from and how they are being used in social care. I’ll post about my presentation afterwards, on the off chance any of you are interested.

In the meantime I found this tweet from last year’s conference:

This year’s programme is packed with brilliant sessions, you can see what is going on here.

I’ll be there, I’ll be tweeting and using the hastag #JSWEC. I’m sure I’ll not be the only one, whether we’ll succeed in quadrupling I don’t know – not sure how many people were tweeting last year, but I’ll do my best to provide highlights. I have a niggling suspicion that there wont be many people tweeting – in my experience social work isn’t a sector full of tweeters, but I’m hoping I’ll be proved wrong. We’ll find out tomorrow.

To do no harm, first count the harm

This weekend I stumbled across Medical Harm - I believe I have @amcunningham to thank for bringing it to my attention.

In a nutshell the blog is run by Dr Phil Hammond and Andrew Bousfield. It is a blog site that allows readers to submit information and documents to them, safely, which they may in turn put in the public domain. The site contains a bank of inspirational stories and experiences and it aims to build networks of people who wish to raise concerns about medical harm and work together to identify ways to reduce it.

So what is medical harm and why should we be worried about it? 

Medicine is unique amongst legalised industries in that it causes significant harm as well as enormous benefit. We think that in order to do no harm, first you have to count the harm. Patients, relatives and staff should be united in speaking up when shit happens or,  better still, just before so we can stop shit from happening.

Healthcare harms patients and staff in all sorts of ways. Missing or delaying a diagnosis, giving the wrong or suboptimal treatment or even giving the right treatment badly causes harm every day….There’s a difficult balance between an open culture that allows staff to admit to errors and near misses safe in the knowledge that they won’t be punished, and a ‘no blame’ culture where noone is ever held to account for serious failure because it’s always the system’s fault.

By calling this site Medical Harm, we want the NHS, public, press and politicians to acknowledge that healthcare is very dangerous and harm is surprisingly common. Then we need everyone – patients, relatives and staff – to be encouraged to step in to stop it, or failing that report it so we have continuous ‘harm alarms’ – like smoke alarms – on every ward and in every GP surgery.

So why am I interested?

Well, I consider myself to be a realist. I understand that when you’re dealing with people who are ill, mistakes will happen. When you are working under stress and pressure, mistakes will happen. When you work in an environment where there is no support when mistakes happen, more mistakes will happen. I also have spent *a lot* of time in hospitals and critiquing the NHS systems over the past four years – my Dad has a terminal diagnosis of cholangiocarcinoma (bile duct cancer), my mum had a TIA a couple years ago, and my grandparents have both had medical concerns of late, with my 92 year old grandfather being admitted to hospital twice in the last two years.

I’ve seen the absolute best of the NHS, I’ve seen fantastic individuals going the extra mile, working in spite of broken systems. I have no doubt that I have seen a few near misses, Dad has been discharged with the wrong medication, has been given incorrect treatment (poor communication), he has jumped out of bed with a newly fitted stent to get a nurse’s attention when no-one was available to respond to the alarm and the old guy opposite was fitting, and my absolute most irritating situation the Junior Doctor who patronised the hell out of me, told me to give Dad some TLC and tried to discharge Dad with a box of antibiotics for Swine Flu – until we demanded a second opinion and he was admitted with MRSA septicemia that required two weeks of intravenous antiobiotics and a three week hospital stay (little bit angry about that one still).

That said, if it wasn’t for the risks taken by his consultant and medical team Dad would have died years ago. That’s the harsh reality of my experience of medicine – it doesn’t always come down to science, more often than not it comes down to balancing possibilities of risk and taking chances. As a family member of someone who has already outlived his diagnosis, who has received life saving treatment, I wouldn’t want to complain….but I do want to highlight dangerous practice.

I hope that Medical Harm will help more people to share their experience, and identify what can be improved. I’ve always felt that Dad is lucky as he has a number of us loudly and (most of the time) articulately advocating on his behalf, not everyone is in that position.

Sheds are for real men…

Sheds are for real men, thinking, practical men, men who actively seek out their own company, men who make things, and do the job, have calloused, dirty hands,  who would rather do than speak, who wouldn’t know the meaning of the terms ‘in the loop’,  ‘singing from the same hymn sheet’, ‘touching base’, ‘breakout group’, ‘brainstorming session’, ‘thinking outside the box’, ‘tipping point’, ‘pushing the envelope’, ‘fit for purpose’, ‘team building event’, ‘corporate away day’, ‘mission statement’ and all other such trendy inanities, men who know that a workshop is somewhere where you wear overalls,  heavy boots and run the risk of physical injury rather than a poncy management love in.  Men who were ‘ Made in England’ when it meant something,  men that the nation would need if things got tough.

My brother sent me this the other day – he’d seen it and thought of Dad. I love it, especially the bit about a workshop I’ve written quite a lot about my Dad on this blog, about him, his attitude to life and his fight with cholangiocarcinoma. The most recent post is here, for once I’ve not got much more to say, the man is a legend, a great big shed loving legend!!

*When not in his shed my Dad can be found cuddling babies

Waiting for #Dilnot – what is care and support?

I’m sat waiting for the Dilnot Commission to report – there are about 10mins left until it goes live on the Department of Health website. The few tweets that are leaking out of the press briefing, together with the media presence this weekend, suggest that Dilnot will be recommending that our politicians take some hard decisions about funding care and support. This has been suggested before but I’m optimistic that the appetite is different now. People are facing up to so many financial challenges throughout their lives, society knows that change is required, we all know that demographic changes mean that many of us are living longer and healthier lives. If you’re interested in the changes in trends and developments that have led to these changes, in terms of public policy, social trends, political context, technology and a few more, check out the Dartington review on the future of adult social care - published by @ripfa last year and written by Richard Humphries from the Kings’ Fund.

That’s all context but it still begs the question for most people of what is care and support?

A couple weeks ago I blogged my initial thoughts about #Dilnot and just wanted to pull two snippets out of that post to try and answer that question:

Care and support is usually referred to as social care. It is enabling support, it helps people to be independent, active and healthy throughout their lives. It is the support required to enable people to do day-to-day things such as live at home, work, cook, shop, care for their family, engage with their friends, family and community, and essentially lead a fulfilling and independent life for as long as possible.

This support is provided by a range of services, including support to live independently, benefits for disabled people, practical support such as meals on wheels, day centres and care homes, home adaptations and adjustments and other housing support. Services are also available to provide support for carers.

Not sure if that makes it any clearer but care and support refers to support for anyone who requires it – that could be myself and yourself, it could be due to a physical disability, an illness, due to getting older. It is not just about older people or ‘elderly care’ – it is about much more than that. It comes down to how as a society we wish to treat those that require support, it is not just about middle class people having to spend their inheritance or just about the death tax.

This is much, much more important than that. As I finished a couple weeks ago:

The vast majority of people don’t recognise themselves as health or social care users, they are just people, who need some support. Until social care gets itself to a point where it can define clearly what it is, how it helps, and openly discuss its limitations (whether financial or otherwise) we’re in trouble.

Social care has an opportunity, society has an opportunity, to use Dilnot as the start of a bigger discussion. Many people are forced to understand social care, once their lives reach crisis point. If you do one thing today, take time to think about how you would access care and support if you needed it – just give it two minutes reflection time, it’s as good a place as any to start!

Déjà vu…or why most people don’t know who #Dilnot is and don’t care!

I fully expect that over the next couple of days there will be many tweets sent and words written about the publication of the Dilnot Commission on the Funding of Care and Support; there is likely to be much musing about what it covers, what it doesn’t, whether its remit was right, how else we could address the challenges and so on and so on. From mid morning tomorrow you’ll be able to access the report on the DH dedicated website here. The following day (Tue 5 July at 11.30am) you can join David Behan, the Director General for Social Care for a live discussion about the implications here. There will be a lot of activity, which is good and right and proper.

So why the provocative, damn right rude and possible cynical title to this blog post?

Well because I do drive myself to distraction when I realise how many times I sit down to write a blog post and realise that it is all rather déjà vu. What started as a simple reflection earlier this evening, about how many times I have started a post that talks about the problems with social care…extended into a bit of a twitter conversation with Harriet Clarke, who draw my attention to work she had done looking at Long Term Funding for Older People over ten years ago, you can see a snippet here and here. These are not new problems and I’m sure Dilnot has done all he can but we’ve yet to see whether our politicians can reach a consensus on funding for social care.

Last November I was reflecting on the state of social care research and guess what the number one reflection was? Yip, identity:

Reflection One: Identity – I believe that social care has an identity crisis! When we talk about social care and the role that it can play in supporting people, we all talk about very different things. There is not one thing meant by it and without clear definitions or parameters it is hard to make clear arguments.

I believe the biggest challenge to social care, to society, for a useful legacy from the work of Dilnot, is identity. So many people don’t know what social care is, they don’t understand care and support and don’t care that they don’t. A couple of weeks ago I provided an intro to Dilnot here and a slightly dismayed reflection on it here. The dismay came from the same place.

The work of Dilnot, his commissioners, the DH staff supporting him, and of course us, the service users, carers and workers who have provided evidence and engaged with his work, will I hope, make a difference. I know that the government will publish a Social Care White Paper, they are waiting to respond to the Law Commission and Dilnot together – check out David’s coverage on that here:

I know that for a brief interlude tomorrow my world will feel a little brighter, those of us who toil in social care circles will step a little lighter, we’ll believe that we have reached new ground. Let’s not get complacent though, Dilnot is really only the first step of the next journey. We’ve a long way to go…and may I suggest that we start with the basics and focus on really engaging the general public with what social care is, what it does and why they need to care.