Ten holiday reflections

I have just returned from a week’s holiday, a week doesn’t sound that long, but when life is as stupid busy as it has been of late, a week felt like a complete sabbatical. It was long overdue and very much needed. I had quite a lot of time to think while I was away and what follows are a few reflections:

1) Holidays are awesome! Stating the obvious maybe but was fantastic to get away from an everyday routine and turn the brain off for a bit.

2) Step away from the twittersphere – a whole week with no twitter was surprisingly liberating; as fantastic a resource as it is for connecting with people and learning new stuff, I think it took me a week away to realise how much noise there is at times, and how just staying aware of it all is quite draining. It was definitely good to step away.

3) A good cattery is a godsend – Mogs is a very sociable cat and I hate leaving him, as silly as I know that is. He is massively affectionate now he’s back and I rather suspect he enjoyed having a break from his routine too!

4) Cross country skiing is much more fun to try than to watch! I’ve been a big fan of the lycra clad athletes all season but wasn’t sure that I’d actually enjoy it when I tried it. The snow wasn’t the best (too late in the season, too warm), fear not I didn’t wear any lycra, but it was great fun – definitely worth trying if you ever get the chance.

5) Europeans have a very different sense of self-awareness to Brits (I know that’s a massive sweeping statement). If I was feeling more controversial I’d suggest they don’t have any self-awareness but I suspect they have just culturally learnt not to care about it! Whether it’s an aversion to queuing or lack of awareness in the sauna – they just don’t seem to bother about other people!

6) Travel insurance doesn’t cover terminal illness! I’m a last minute kinda gal and the night before travelling was desperately searching for travel insurance that would cover me to return home if I needed to but I couldn’t find a single insurer who would cover my costs if I needed to – my Dad has been diagnosed as terminally ill and of course it’s a pre-existing condition, so effectively I would have to cover all my own costs.

7) Train travel is a great educational experience – there are so many different nuances for international trains, whether it’s how to open the doors, where to buy tickets, or just the different experience of the different types of trains, I love it. Which is saying something given how much of my life I spend complaining about poor train travel in the UK.

8 ) European beer is much, much better than what we drink in the UK. Great fresh taste, no preservatives or funny stuff in it and consequently no hangovers.

9) Work is *not* the most important thing in life – I know this is such a ridiculously obvious statement, and one that should be a given, but if I’m honest I still struggle to find the right work-life balance. Taking time away from the office, thinking about family and friends, reflecting on the happenings in Japan and Libya, was all useful to rebalance my perspective. The challenge is to hold that over the coming weeks but I’m determined to give it a go.

10) It is great to spend time outside. It is really humbling to be in the foothills of mountains and surrounded by nature; to breathe cold and crisp air; to soak up some rays and listen to the birdies sing. At the end of the day we are all tiny, insignificant beings in the big scheme of things and it’s useful to remember that every once in a while.

The Price of Life #23weekbabies

Last week I came across Adam Wishart for the first time – he had produced a documentary about the cost of cancer drugs, you can view the film and read my blogpost about it here. Adam recommended the book he wrote about the history of cancer and his family’s experience of it, you can get the book, 1 in 3 on Amazon here. I devoured it this weekend – not quite finished but have learnt a lot about the history of the disease – alongside an affirmation of my own experience with my Dad’s cancer. Will blog about it once have finished the book and taken some time to reflect.

…then yesterday I turned on the TV to watch Andrew Marr and before turning it off caught sight of the billing for Nicky Campbell’s BBC Big Questions, you can catch it on iplayer here. The programme was debating, amongst other things, the cost of care (immediate and throughout life – medical and social) for babies born at 23 weeks. Today I found the trailer for the programme that you can view here:

 

I’ll be watching BBC2 at 9pm on Wednesday to see the film. This is an area that is close to my heart – my PhD looked at educational curriculum and provision for profoundly disabled children back in the late 90s – focusing on education in England, Wales and Ireland. Not all babies born at 23 weeks will have a profound disability, but lots of them will and the level of support that these babies will require if they live into childhood or adulthood, is in my opinion, far beyond what most people can comprehend without any prior knowledge or information. These personal challenges sit within a context of increasing demand on services, new challenges in the provision of support, more babies surviving and some with greater disabilities, alongside increased life expectancy for all groups – including people with disabilities. You can read more about the changing demands on adult social care in the Dartington Review on the Future of Adult Social Care published by research in practice for adults.

Watching the BBC Big Questions programme yesterday I was struck by how difficult and emotive a topic this is – there was a consultant of public health representing one side of the debate, and two parents of a baby born at 23 weeks presenting the other, at least that was how it was set up to appear; in actual fact the consultant was making an eloquent argument about the ongoing care and support needs that the NHS does not have resource (or remit) to provide, and the parents were sharing their experience and pride in their daughter’s survival and development. Their apparent frustration at the consultant’s view masked what I think was the connection between them, as I understood it they were all presenting the same argument, if babies born at 23 weeks survive, they are likely to require care and support throughout their lives, and currently this support is not readily available.

The parents believe that the decision about the level of support available to their baby was their’s to make with the medical staff; my sense is that few parents when presented with this discussion would have the emotional or physical reserves to engage with it fully so soon after childbirth, or that few could really understand the potential implications of their choice without impartial information and advice available to them. I’m sure this will be picked up and I’m looking forward to watching on Wednesday and to the inevitable ongoing discussion about how we make decisions about the price of life.

End-of life care

End of life care is something of a focus for me at present. For anyone who has not read my blog before my dad has terminal cancer, Dan a close friend of mine died of a brain tumour a year ago and I also have two elderly grandparents who at 91 and 93 (next week) are likely to need end of life care or support some time soon. In my professional life it has also been a focus of late as there has been a government programme focusing on End of Life Care, that launched in July 2008 and there have been a number of resources and publications aimed at improving standards across health and social care published recently.

Last night I steeled myself to watch the episode of Dispatches that had aired on Monday evening, Secret NHS Diaries – you can catch it on C4OD for the next month. It featured three people towards the end of their lives and the experience of them and their carers as they tried to have the death that they wished for. I’ll not go into great detail – would urge you to watch it yourself if interested, but I thought I’d offer a few reflections on the programme and the reaction it evoked for me.

Watching the programme just reminded me of what an epic experience we have ahead of us as a family! I saw my mum briefly today and she’d recorded the programme but didn’t feel able to watch it just yet. I’m not sure whether I want her to watch it or not really, my mum has a good grasp of what (potentially) lies ahead but there is something quite stark about watching someone going through the battle of learning to accept and let a loved one go. Lynn Pinner talked about how she wasn’t ready for Harry to die – even when he was tired and claiming he’d had enough. This was the point when I broke my seal and the tears started – it is agonizing to see her so desperately not want to let go and yet to also see her loving husband not wanting to let her down. I know that my mum wouldn’t in any way want my dad to suffer, she has said as much and they’ve discussed it – that said, I’m not sure at what point you give someone permission to stop fighting, to let them go. This was part of my argument in my last blog post about cancer treatments and patient milestones.

Lynn and Harry also seemed to get trapped in the bureaucracy of the system – Harry had a heart attack, was provided with morphine and care by the Ambulance Service and Lynn was left to contact and arrange a morphine driver with the District Nurse Team. Simple – or so you’d think, but the exasperation shown  by Lynn as she tried to arrange a visit from the District Nurses brought a really strong feeling of deja vu. In my experience District Nurses have always been fantastically caring, efficient and professional when I’ve come into contact with them….getting hold of them however is never that easy. I can identify many occasions where my mum or myself would have been waiting for the nurse to come visit dad, only for them to not arrive when planned; this would result in phone tag and more waiting and usually eventually someone would come. I have no doubt that the DN’s providing them with support were doing their best but to someone dying who needs pain relief the fact that the day/night shift was coming to an end is irrelevant – it strikes me as ridiculous that in this day and age when you can bank, eat and shop 24hours a day, you can only be fitted with a pump to give medication during a day shift!

I also shed several tears for Tamina Rasheed who talked and filmed the struggle to ensure her father, Ken, received the best care within hospital. Her story rang true to me, there have been several occasions where I’ve had to advocate for my dad; never have I doubted the ability or intention of the staff who provided him with care – just with their capacity to do so in an effective manner given how tight time and resources are. My experience in life, that also appeared to feature on the programme, was that one of the challenges for staff across the NHS is being able to communicate and make decisions with each other – I can only imagine that this is more of a challenge when everyone has more to do and less time to communicate.

The thing that struck me the most in the programme though was the way in which the patients and their carers or friends had to fight – you just don’t have the energy to fight a system when someone close to you is dying and you shouldn’t need to. For what it’s worth I didn’t think the programme was very balanced, it didn’t offer any experiences of people receiving good support at end of life and I know it exists, my friend Dan died a dignified death and the support his wife and three year old daughter received was brilliant; neither did the programme offer any explanation or context of the constraints on the professionals providing the service. It failed to really provide many answers – to be fair maybe that’s not the point of it – but as someone who is living this challenge at the moment I’d like to have seen some more balance or positives presented.

On that note the following resources published last week might be of interest to anyone working to support end of life care:

> evaluation of End of Life Locality Registers – locality registers allow key information about someone’s preferences to be recorded and accessed by a range of services

> a guide to achieving quality end of life care in domiciliary care

> a practical guide about achieving quality end of life care for people with learning disabilities

Internet-informed Patient #iip

I spent a little time on twitter tonight and a tweet about the forthcoming Internet-informed Patient symposium caught my eye – hat tip to @amcunningham.

It looks like a great day, the link above contains more info, it’s a symposium (to be honest with you I’m not sure what the difference is between a symposium or a conference – whether it’s just semantics or something structural) and it’s preceded by a hack day for developers and programmers.

The symposium looks to explore the increasing access that patients have to information via the internet and the impact that has on health care practice. It describes the focus  in the following terms:  ’Already we know that a significant proportion of Internet users use the network to search for health-related information, and that many of them use the information they find online to self-diagnose.  We also know that surprisingly few searchers check the reliability of the online sources that they consult’. Something I can relate to, personally and professionally.

The hack day gives a chance for ‘programmers and developers to meet to discuss and prototype a range of patient-focused applications for both the Web and mobile devices’ – am sure this will be a great opportunity, just can’t help but think that it would be better to hold the symposium before the hack day? I’m sure that this has been thought about already and there are certainly benefits to having the hack day before the meeting – just can’t help but think it might prove more useful to acknowledge the challenges worth discussing at the symposium and then to provide the chance for the developers and programmers to prototype some solutions. It will be interesting to see how things progress.

There is a form to fill out if you’re interested in attending the symposium, you can access it here. I’m not sure what my work commitments look like yet but way well apply for a place as I’m very interested in the opportunities to provide patients with information, the impact that has on them and their carers, the opportunities provided to improve, develop or challenge relationships between professionals and patients, and of course the more general point about how evidence use can inform the development of services. Looks like a promising event.



Photo (CC) Will Lion on flickr