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When it’s good it’s very very good #NHS
The last few days Gran hasn’t been very well, I spent an hour with her and Grandad yesterday evening and she was perky, but not herself. Grandad spent the whole time just looking at her, wistfully, worrying but like he was drinking her in with his eyes. They’ve been together since they were children and celebrated their 70th wedding anniversary last summer, I’m really not sure how one will exist without the other, they’re a complete and utter team.
Early this morning my Auntie and Mum decided that Gran needed to go to hospital, the ambulance was called and a rapid response unit was dispatched. They live down the bottom of a very steep hill (too steep for the ambulance to get down) so Gran was wheeled out of the house, up the hill and into the waiting ambulance on a trolley, and whisked away to A&E. Mum was blown away by the care that Gran (and she) got – Polly and Tom who took her in, the nurses who settled her into a room and cleaned her up, the consultant and doctor who examined her. She had a full MOT, a couple of ECGs, blood tests, x-rays, examinations and was put on a drip. I’ve just been up to see her tonight, she has been admitted onto a ward now, in a side room (the same one that Dad was in a couple years ago), and she looks exhausted but restful. With a bit of luck she’ll be sent home in the next day or two, she hates hospitals and hasn’t been into one except as a visitor since giving birth over sixty years ago! I hope that she makes it home, Mum was telling me that Grandad was distraught when they took her away this morning, sat in his chair crying (I’ve never seen him cry, he’s not of a generation that seems that comfortable with expressing emotion) and I hope for his sake, and her’s, that she get’s home. They’re realistic about their age, they know they won’t last forever, but I really hope she gets home to Grandad just once more.
The point of this post was to say thanks though. I’ve had one bad experience in our local A&E and it’s always at the front of my mind when I hear someone has gone in there. If nothing else the treatment Gran has received today has gone some way to making up for that experience. The staff were really kind to my Gran, looked after her and treated her with respect and dignity. I’m conscious that lots of people complain about the NHS (myself included when needs be) but my family have received more than our fair share of treatment in the last few years and it never ceases to amaze me how awesome a machine the NHS is, when it’s well oiled.
I suspect I couldn’t work in a hospital environment, I couldn’t handle the smells, the stress, the confusion, the desperation, especially in care for older people. I also know I wouldn’t be able to work on an ambulance, never knowing what you’ll turn up for, wishing away the final call of the night shift because you know it’ll eat into your sleep or day off. I am so grateful to each and every NHS worker who chooses to look out for other people, you really do make a massive difference to people’s lives. Thank you.
Dark days of depression: not bad, mad, crazy or weak, just ill.
This weekend has seen me tweet twice about football, an almost unheard of situation previously. Today, Gary Speed, the Wales Football Manager died suddenly at his home from a suspected suicide, an absolutely tragic loss to his family, friends and of course to the football community.
Yesterday I heard about a tweet that Stan Collymore had sent, describing his experience of depression, so I tracked it down. You can read it here. It is a deeply honest reflection, written with graphic detail and an eloquence that grabbed me. He talks about the benefits he has found from running:
The running I find really has helped massively, as i’m sure you guys that suffer who exercise find, the tangible release of calm, and “being on top of things” powers your internal dynamo, and keeps the black dog from the door.
Before moving on to explain the feeling when depression takes over, describing his latest experience as:
Around 10 days ago however, I started to feel anxiety, which grew into irrational fear, which in turn turned into insomnia for 3 days (little sleep, and an incredibly active, negative mind), that in turn over last weekend (Swansea v Man United) into Hypersomnia, whereby my energy levels dipped to zero,and my sleep went from 8 to 18 hours overnight … So fit and healthy one day, mind, body and soul withering and dying the next. This to me is the most frightening of experiences, and one fellow suffers i’m sure will agree is the “thud” that sets the Depression rolling.
Stan describes further the impact of depression on him (seriously if you’re still reading just go read the whole thing – it is powerful) and talks about how to support someone:
I’m typing and my brain is full, cloudy and detached but I know I need to elaborate on what i’m going through because there are so many going through this that need to know it’s an illness, just an illness. Not bad, mad, crazy or weak, just ill, and that with this particular illness, for its sufferers, for family and friends who are there but feel they can’t help, you can!
Patience, time, kindness and support. That’s all we need. No “pull your socks up”, no “get out of bed you lazy git”, just acknowledge the feedback the sufferer gives, get them to go to the GP asap, and help them do the little things bit by bit.
That may seem simple but in my experience, and currently as we speak, having a bath, walking for 5 minutes in the fresh air, making a meal, all things that days before were the norm, seem alien, so friends and family can help, just by being non judgemental, and helping in the background to get the sufferer literally back on their feet.
It’s hard to know what to do when you’re confronted with someone who is depressed, it’s hard to know what to say or what to do, but as is so often the case in any of these situations, the reality seems to be that mostly what people require (or at least what Stan is advocating) is time, support, patience and kindness. No judgement, maybe an ear to listen, and a helping hand.
It’s also hard to live with someone who is depressed. To keep trying to get it right, to worry about getting things wrong, to start to feel responsible, to not be able to help, to feel part of the problem as well as potentially part of the solution. Of course the reality is that when someone is depressed they are ill, a myriad of situations and circumstances conspire to make someone ill, it is never the cause of one person, or one circumstance. That said I know how hard it is to remember that, when you’re faced with depression or living with someone in the throws of depression, it is hard to hold onto things you take for granted at other times. I consider myself lucky to have felt depressed, but never to have suffered from depression.
I am very aware of some of the trigger points for my own mental health, and try very hard to keep my life in balance, to force myself to regularly exercise, to have a good diet, and to not get too absorbed into any one area of my life (although work seems to be the constant thing I need to challenge on this regard). That said if I thought I was depressed, or those who were closest to me thought I was at any point, I’d want to be encouraged to seek help and see my GP. I think we still have a long way to go in breaking down stigma around mental health and well-being in the UK, and I know that seeking help can feel like a huge hurdle to jump.
When I read Stan’s post I thought about how I felt when I heard that my Dad’s cancer had returned – and how hard it is for people to know what to say in that situation, I wrote about it here. The reality is, I think we probably worry ourselves so much about saying the right thing, or not wanting to make it worse, that we can skirt around the issue. Acknowledgement, a listening ear, support and patience – that’s what helps, you don’t need to have the right words, or a solution up your sleeve, you have to care.
If you are concerned about someone then try to encourage them to see their GP, and also let them know they can always talk in confidence to the Samaritans on 08457 90 90 90 or email Jo@Samaritans.org. Stan finishes his tweet with:
I hope that if you are suffering, or know someone that does, that a little insight into someone elses experiences might resonate with one or two and give them the comfort of knowing that there are millions out there like us that deal with this reality in our lives.
Remember the statistic, 1 in 4 of us will experience mental ill health – that’s 25% of all of us, depression is an illness and one that can be treated with the right support. If you’re reading this and worried about yourself, or someone you know, remember you are not alone, seek help and things will improve.
Sources of support:
(cc) on flickr by Tommarsh – Black Dog of Depression, St Patrick’s Day Parade 2011, Dublin
Reflections on #NCASC – let’s start with people
For the last three days I’ve been in London for #NCASC – the National Children and Adult Services Conference. A considerable focus of the conference was #integratedcare and the need for #health and #socialcare systems to work closer together, set within the current economic situation and reduction of resources. I think its fair to say that at times at conference you’d have been forgiven for forgetting that what we are all really interested in is improving life for people who need to use health and social care services. I guess that understanding is absolutely implicit, and the challenges are great at the moment, so much so that it would be easy to reach a state of being overwhelmed with the magnitude of the challenge, and disillusioned with what can actually be done.
So, I’d like to share a good news story.
While I was going about life at conference, back in sunny Devon unbeknownst to me (because my Mum didn’t want to bother me when I was working), my Dad was getting increasingly breathless. For anyone reading this blog for the first time, my Dad has cholangiocarcinoma (bile duct cancer), and he has a terminal diagnosis. Just over a week ago we had an appointment with his consultant (you can read the post I wrote the day before we went) where he told us that one of his tumours had shrunk slightly (and the reaction). This is great news as we’d tried to prepare ourselves to hear that the cancer had spread to his lungs given his difficulties to breathe and recover from the slightest of physical activity. We were told that Dad was anaemic, and the relationship between tumours needing blood supplies and the tumour shrinking was gently explained. More blood tests were taken, the possibility of an endoscopy floated, iron tablets and vitamins promised once the results were available.
On Thursday Mum decided they could wait no longer, Dad didn’t want to hassle (neither of my parents ever do) but Mum balanced up the possibilities of Dad’s health deteriorating sharply over the weekend (anyone who has had to rely on our health or social care systems knows not to get ill at the weekend) and the need to just gently nudge the system. One phone call from Mum to the Oncology Dept revealed that they had the results and someone would phone back with them. Hours later a chance inquiry into Dad’s health by their GP when dealing with my 93yo Grandad led to him getting involved and prescribing iron tablets and following up with Oncology too. A day later Dad has a course of iron tablets and a blood transfusion booked for Tuesday because his haemoglobin levels were so low. I’m confident that we have that outcome for two reasons, because my Mum didn’t wait until things got worse and chose to take action herself (in spite of how uncomfortable that makes her feel) and because our GP knows enough about my family to ask about my Dad when dealing with my Grandad. I’d like to think that his information recording computer system is good enough that when he looks at my Grandad’s notes he is able to see that he lives with his 91yo wife next door to their daughter and son-in-law who provide them with care and support, one of whom also happens to be terminally ill. I know I’m pipe dreaming but you know what I mean.
So what has this got to do with NCASC?
Well, as I sit here musing on Saturday, the words that made the most impression on me were from people who I know and respect, all of whom focused on people as part of the solution. These were Councillor Sue Anderson from Birmingham City Council who addressed a session on Health and Well-being Boards #hwb and focused on the need to focus on good relationships rather than bureaucracy. She wasn’t suggesting that the systems and strategy are not important, she was however stressing the need to start with relationship building and trust.
Next up on my thought provoking list has to be Richard Jones. The Director from Lancashire CC and former ADASS President took the floor in the Think Local Act Personal session #TLAP on the final day and challenged #socialcare to focus, arguing that we were getting caught on second order conversations about #integration and #resources and forgetting the people at the centre. Making it Real the new publication from TLAP will prove useful for anyone working on #personalisation to judge their progress against the end results that citizens have identified they need. Sue Bott also talked a *lot* of sense in the TLAP session, with a humour and personality to her delivery that few before her in conference had managed – she even got a room full of conference weary delegates to raise a virtual toast to Making it Real!
My final sense talker has to be Peter Hay, the Director of Adult Services in Birmingham and this year’s ADASS President who took the floor a number of times at conference. He joined the panel in the final session that focused on #integratedcare and the work of the Future Forum and again brought the focus back to those who use #socialcare services, reiterating a challenge from Lord Crisp at the conference opening to build services around #life not around #care or #health.
Isn’t that all a bit naive and over simplistic?
I’d like to think not. We are without doubt in need of large scale system change, #Dilnot challenges us all to consider our own future and how we will provide for our old age or social care costs, whatever your view on the Health Bill the creation of Health and Well-being Boards present an opportunity, our demographics are changing, as is our technology, our family life and our expectations. None of this is new though, not really, the likes of @RichardatKF can tell you all you need to know. Surely, we have known for long enough what works and doesn’t work with regards to integration and we must know by now that people just want to feel well and live their lives as independently as possible. Maybe it’s just me but I’ve yet to meet someone who cares which budget their support comes out of, people just want to live their lives.
So what can we do?
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]. I’m sitting here believing that change can happen, we have clear evidence around these challenges, we have enough people with enough experience to move on some of this. Personally I believe that this requires commitment and leadership, from those at the top of government (I too struggle to see how bin collections are more important than social care) to match those from the sector who I’ve mentioned above. As much as I welcome any attempts to engage people on the future of care and support (6 weeks left to contribute) I do wonder whether what we really need is a commitment to action.
The one consistent in all of these discussions and system challenges is the person who is trying to live their life. Start with the person, they (and their carers or family members) are the lynchpins in all of these systems and services. Let’s start improving services now, we can’t afford to wait.
NB: Just a thought, #socialcare readers of this might be interested in an earlier post What is Service Design? – the comments and discussion especially may help unearth some thoughts for how we can move on such large scale system redesign, without forgetting the end user or person who uses them.
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
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.
Out of the Box #box10
You know something is up when you get a blog post from me before 9am! Don’t panic, the world isn’t coming to an end, I’m not ill or anything, and I’ll even refrain from getting into some tangential debate about the cost of fresh air or the like…this post is to tell you what I’m up to today and to give advance warning of possible tweet overload; don’t worry I’ll not be offended if you unfollow me!
I’m on a train to Birmingham as I type, heading to Out of the Box a conference hosted by @patientopinion at the Deaf Cultural Centre. There is an excellent programme for today and as usual I’m struggling to know what to attend.
Box10 is exploring ‘how patients, service users and carers are using the web to change their lives and their services’. There are sessions arranged by theme. The themes for today are getting started, stories, connections and community. Within these four themes are sessions on:
- engaging communities
- reflective digital stories
- supporting people with dementia to use computers
- Big Society
- e-campaigning
- hearing more from people with learning disabilities
- using Facebook to address health challenges
- creating social capital
- using video to communicate via the web
- empowerment of isolated and vulnerable members of the community
- social networking for mental health
- opportunities in hyperlocal.
As well as these there are soapbox talks and a speed dating marketplace – two of my favourite things to see at a conference. You can see the full programme here and you can follow the discussion on the #box10 hashtag.
I’m really looking forward to today. I’ve set myself a personal challenge to try and figure out a way of ensuring that my attendance has both an impact for my own work but also is of use (hopefully) to other people who can’t be there in person. I’ve blogged a couple times about events that I was following from afar, most recently We Are Enabled By #WeEbD and #media140 in Glasgow last week. I’m particularly aware of how difficult it can be to genuinely engage with an event that you are not at, so this is in an invite to anyone to get in touch with me if you have your own question you’d like me to try and get an answer to, or an idea or reflection you’d like to share, or better still if you have any ideas for how I can share #thebox10 with you.
I am armed with netbook, camera, flipcam, iphone and blackberry, three chargers and two lots of cake, so I’m hoping I have enough ‘tools’ for the job!!
