What do you buy a dying man for his birthday?

I can’t quite believe I am writing this, my Dad has been terminally ill for over a year now, quite some feat in itself, I never would have thought I’d write this blog post. Last year I explained my dilemma to anyone who was reading, my Dad had a birthday coming up but didn’t want for anything. All Dad has ever wanted for his birthday is ‘three well behaved children’, so last year he got a tray of double chocolate brownies and I held a Macmillan Coffee Morning to raise some money for Macmillan.

This year, all bored of being well behaved and not around for The World’s Biggest Coffee Morning I have made a more conventional choice for a birthday pressie. My Dad served in the Navy and loves travel and has many tales about his time around the world so I’ve bought him a beautiful book, Atlas of Remote Islands: Fifty Islands I have not visited and never will by Judith Schalansky. I’m delighted with it, it is an atlas of remote and lonely places; the product description on Amazon says it better than I can:

Judith Schalansky lures us across all the oceans of the world to fifty remote islands – from St Kilda to Easter Island and from Tristan da Cunha to Disappointment Island – and proves that some of the most memorable journeys can be taken by armchair travellers.

The other thing I’m hoping to do is use Dad’s birthday as a chance to get some support for a mobile app I’ve put forward in the Department of Health #mapsandapps campaign. The app suggested is Picture Prompts, in my head it’s a directory of simple drawings and diagrams that can be shared with patients, carers and staff when explaining anatomy, procedures and treatment. You can read more about my thinking behind this app – essentially I think it would have helped a lot when Dad received his diagnosis of cholangiocarcinoma (bile duct cancer) and I’m sure there would be many other uses for it.

The way the campaign works, an idea needs votes to push it up the table – I’ll be honest with you, this is a little faffy and requires people to create an account (should only take one email) *but* that five minutes of your life, could make all the difference to someone else’s quality of life, if this app was ever developed.

So please, do go give it the thumbs up. Thanks.

Holiday reading recommendations for Kindle please

In five more sleeps I’m heading off on holiday, I’m very excited and very relieved that no-one has got ill yet. You can see a piccie from my destination here on an earlier blog post. There’s not a lot there, except sand, sea and sun. I didn’t want to take my work iPad with me (didn’t seem appropriate) and there is a strict wait limit on the Sea Plane so I can’t take a case full of books, so I splashed out and bought a Kindle.

So I need your help, I’ve cashed my Nectar Points in for Amazon vouchers and would like to download some reading before I go away. I’d really appreciate any recommendations, any good books, fiction or non-fiction, don’t mind. Please add a comment and let me know the name of the book and maybe one line about why I should read it and/or what it is about.

Thanks in advance.

Recommendations received via twitter as follows:

Emerald Street – Books you must read overview document.

If on a winter’s night a traveller by Italo Calvino

1984 by George Orwell

Fry Chronicles by Stephen Fry

Hare with Amber Eyes by Edmund de Waal

The Immortal Life of Henrietta Lacks by Rebecca Skloot

The Shift by Lynda Gratton

Drive by Dan Pink

Program or be Programmed by Douglas Rushkoff

The Shadow of the Sun by Ryszard Kapuscinski

The Best of Everything by Rona Jaffe

 

Talking with sofas for #Interrogate2011

Not your average Friday today…

At lunch time I jumped in my car and headed over to Torquay, Torre Abbey to be precise, to meet a lady with a sofa! Not your average sofa either:

As you can see the sofa is advertising the Interrogate Festival which is taking place at Dartington in a fortnight. I posted about it last week, you can read it here. The festival aims to put income equality centre stage and is structured around a different theme each day – Friday focuses on causes, Saturday the effect and Sunday the response – what action we can all take to respond and address the challenges of income inequality.

Since last weekend the team behind the festival have taken on board feedback they have received and have opened the festival on Sunday to anyone who can attend, free of charge. The need to respond is considered to be so important that they want to give everyone a chance to come, contribute and action plan. Tickets are also now available to purchase to attend individual events, so you don’t have to attend the whole weekend, although I suspect once you look at the programme you might choose to.

It was fantastic to get outside in the fresh air at lunchtime today, to talk to people and start a conversation about income inequality. Unfortunately I’m off on holiday a week today so won’t be there but I hope some of the people who seemed interested do get up to Dartington – I can’t think of a more beautiful setting to have some very needed, challenging conversations. It’s an inspiring place Dartington, with a long history of curating ideas to address challenging situations so I hope Interrogate conditions with that tradition – and I hope several of you get to enjoy it.

NHS Maps and Apps – my ideas

The UK Department of Health is currently running a campaign to crowdsource people’s ideas for ‘maps and apps’ and to gather feedback. They are interested in what apps people currently use and what they would like. From where I sit any campaign by the DH to listen and engage with people is a good thing, so I’m all for this. Check out the website to see what people have submitted and commented so far.

I had an idea tonight while talking with Lesley @nibby01 on twitter. She was recalling a story of how she’d sneaked a peek at her own chest x-ray and been really concerned about the two ‘growths’ on her lungs. When she got the chance to ask a doctor she was reassured that the growths were actually her breasts Come on, own up, who else has done that – tried to sneak a peek at the xray or notes, I know I have. I’m fascinated by that sort of thing – who wouldn’t be.

(cc) Photo by ryochiji

This got me thinking though, I have spent hours in hospital rooms and at the ends of beds, while my father has been ill with bile duct cancer. I have spent time looking at his charts and notes when they have been lying around. My Dad has had excellent care and the medical staff who have supported and treated him have nearly always responded with interest and enthusiasm when I’ve asked difficult or probing questions. That said, on the whole, I’ve always felt like reading the notes or charts was a little wrong, in fact my Mum used to panic that we’d get caught doing it – although she soon got into the habit of doing it herself, even if you don’t understand what you’re looking at over time it is easy to see whether something is unusual especially temperature, pain relief score or blood pressure.

I’m rarely afraid to ask for more information but even I used to sometimes feel like it was rude to be reading my Dad’s notes – even with his permission.  I think the physical design of our hospitals, especially having notes clipped to the end of the bed, by a patient’s feet which is pretty much the hardest part to reach if you can not get out of bed without assistance, while invariably making the medical staff’s lives a tiny bit easier (knowing where they are, quicker and closer to access) leads to a power and control imbalance. The notes are the recordings of your health – as a patient why can’t you have access to that? More to the point there must be more reliable ways to record and monitor that data than on pieces of paper, clipped to a clipboard at the end of a bed. So how about an app for recording stats, preferably with a easy interface that patients understand – why not go crazy and give the patient the option of recording, inputting or monitoring this data. I know it wouldn’t work for everyone but I’m sure some would be interested.

My second idea, sorry I’m on a roll now, is about having access to reliable information – both within hospital and once you return home. This isn’t as simple as having reliable information – which is hugely important, but it’s about having accessible information that you understand and can share with people. My Dad is dyslexic and in stressful situations he can find it hard to process a lot of information or words. In fact the dyslexia is almost irrelevant, as a patient, family member or carer hearing lots of information for the first time, it is hard to process. My Dad’s consultant drew a diagram of a bile duct on the back of my Dad’s folder of notes and would often refer to it when talking to us, on another occasion a more junior doctor did the same thing, to help her explain to us Dad’s latest complication she drew it. As far as I’m aware doctors often draw pictures and why wouldn’t they, it seems a sensible way to share information. Certainly my Dad’s notes have a few drawings and diagrams in there – I have a sneaking habit, I explained before. So how about an app that includes simple diagrams that you can flash up on an iPad or tablet and show to a patient when sharing information with them. Better still, an app that you can share with the patient so they can access it and use to share information with their family and friends.

Which brings me onto my third suggestion – a simple, plain and easy, information sharing portal. This is not new, it is not rocket science, for all I care it could just share the functionality of facebook, in fact for all I care it could just be a facebook group or page – if support staff were enabled to write there too. When my Dad was (or is) in hospital it is hard to keep in touch with him. As a family member or friend it isn’t unreasonable to want to know how someone is doing, and luckily for most of the time Dad has spent in hospital he has had a mobile so he could text and keep in touch with us. That’s not always reliable though, and Dad doesn’t always retain the right information, or ask the questions that Mum or I would have asked if we had been there at ward round. We wasted hours of our lives, hanging around in the hope that we would catch someone on ward rounds when if there had been a virtual space that we could have logged into and seen a basic update – a daily tweet would do, it doesn’t need to take loads of time or have stacks of information in it, we would have been more comfortable leaving Dad to it. My Dad had a lot of treatment in Plymouth which is about an hour from where my parents live, so the daily two hour drive to see him got quite draining after a while (not to mention expensive) – I am confident that we would not have visited every day if there was a reliable way of getting an idea of how he was doing. To be fair when Dad was in intensive care it was usually easy to get this information by ringing up, but quite understandably that’s not possible once you move to a larger ward.

So an app that was updated with a status update daily would be great – in my dream world it would include an area for patients to rate themselves and how they feel and record their own observations, a place for the nurses or doctors to record, and of course an area for relatives or friends to ask questions, lets stretch it and include a photo sharing area too! The icing on the cake for this app would be if it had the functionality to allow users with the correct permissions to collate the info into a summary document and share more widely that would be fantastic. When a family member has an illness for a long time it can be incredibly draining to have to ‘fill in’ all interested friends and family members. You know that you need (and want) the support of all your friends and family, and you don’t want to offend anyone or leave anyone out, but it is hard work having the same conversations on repeat. Some way of creating a place where people can visit for updates, that takes the onus off the family member, friend or carer who is the liaison would be great.

I’m going to stop now, I didn’t expect to go on this long, but there are three ideas for starters:

1) An app for recording notes and observations – preferably that the patient can control if they would like

2) Simple diagram/drawings app with reliable information

3) Information sharing network portal

I guess, all of these could roll into one super-app, from my perspective it’s all about the information and giving patients more control of their situations. Bring it on.

ps I am delighted to report that the NHS have already developed the facebook-style info sharing system and there are several answers to patients record on the DH site already. I’ve added the picture/diagram idea – if you think it’s a good or a bad idea, please go give it a thumbs up or down http://departmentofhealth.ideascale.com/a/dtd/46021-15482 Thanks

Not enough or not equal enough?

I don’t know an awful lot about poverty or income equality, but I have got more interested of late as the Interrogate Festival has gained momentum at Dartington Hall.

If asked about poverty I would usually think about income, and inequity, between what people have and have not got. I might also think of the impact of poverty, in terms of health factors, quality of life or social needs. One of my favourite people who talks about health, income and statistics is the Swedish Professor of Health, Hans Rosling. You can watch Hans Rosling in a number of TED talks, including The Best Stats You’ve Ever Seen:

He is also one of the founders behind GapMinder, a fact tank, a non-profit venture focused on ”Fighting the most devastating myths by building a fact-based world view that everyone understands’. The GapMinder World Map shows the health and wealth for all countries of the world – this is the sort of explanation of poverty I’d usually be familiar with. I’ve embedded it below:

However, back in 2009, The Spirit Level was published that challenged this approach to poverty and equity. It claims that the real challenge is not so much about income equality between countries, but income equality within society.

I’ve been browsing through the book this week and it definitely makes a compelling case, based on really solid evidence. I also came across The Equality Trust, an organisation established by the books authors, Richard Wilkinson and Kate Pickett, to progress the evidence based campaign working to reduce income equality to improve quality of life in the UK. The campaign has a relatively simple message behind it:

People in more equal societies live longer, have better mental health and are more socially mobile. Community life is stronger where the income gap is narrower, children do better at school and they are less likely to become teenage parents. When inequality is reduced people trust each other more, there is less violence and rates of imprisonment are lower.

If we want to build a better society, it is essential we take action now to reduce the gap between rich and poor. The Equality Trust is working with others to build a social movement for change. We analyse and disseminate the latest research, promote robust evidence-based arguments and support a dynamic network of campaign groups across the country.

If you’d like to know more about the book, check out this overview by puppets!

If you’d like to engage more in the debate you can visit The Equality Trust website, or better still, take a look at the Interrogate Festival which is happening at Dartington later this month – there are still tickets available so you can go along to the festival and join in the debate. There’s an excellent line up including a debate with the authors of the Spirit Level, comedy from Mark Steel, and if you’re more interested in your music then don’t miss Saturday night’s performance from Spiers and Boden, the founders of Bellowhead. It should be a great weekend.

Dance and equity

This is Brogan McKay.

Brogan is 10 years old and is from Derry. She is one of the stars of Jig, a documentary about Irish Dancing that was shown on BBC2 last night and is available to view on iplayer for the next week. Jig follows competitors in the 40th Irish Dancing World Championships, through a year of preparations for 6 minutes of competition. I’ve always been a little interested in Irish Dancing and found the documentary compelling viewing.

Brogan absolutely stole my heart, she was an intelligent, dedicated and compassionate young girl. My favourite point was when she was asked about whether she gets private lessons, she replies as follows:

‘Oh no, I don’t get privates, because we’re so together, we’re like one big family at the McConomys’

Her teacher goes on to explain that ‘The reason we don’t do private lessons is because we’ve got 90% in our class who just couldn’t afford it’

Brogan concludes quite simply with ‘It’s not fair for any of the other children, because if I got privates, like my friends in my age group, they wouldn’t get it, so it’s just not right, we don’t do that’.

I don’t want to spoil the film for anyone who wants to watch it so I’ll not tell you the outcome, suffice to say Brogan is some plucky and equitable young lady. You’d be proud if she was your daughter, student or friend.

I think Brogan’s words particularly struck a chord for me this week, as I’ve been reflecting a lot about equity and poverty in the run up to the Interrogate Festival at Dartington Hall. For those of you who haven’t heard about it yet check out the website, there is a fantastic line up of debate, film, performance, comedy and art. There are a whole range of tickets available, still some stewards places for people who wish to volunteer (I think) and the team behind it are hoping to live tweet the festival on #Interrogate2011 so go take a look – again, I’m confident you’ll not be disappointed.