Social media for social care – let’s not forget personalisation

This is going to be a short post, I promise, it’s also a little thrown together as I’m finding 140 characters just isn’t enough space to try and explain what I mean! This post builds on two previous posts of mine Social media is not the answer written in January, and a post from the end of October about measurement of impact Social media metrics: reach ≠ quality and three excellent posts all written this week, The role of social media in a social worker’s continuing professional development from @mgoat73, Use and application of social media in social work and social care education from @jaxrafferty, and Social Media and Social Care/ Work Education from @Ermintrude2. All of these posts discuss the role that social media can play and it’s relatives benefits and limitations. I’ll not repeat what they say here.

Before we go any further, do you know who this is? You’ll find out by the end of the blog if you don’t!

I just wanted to make one small point. For a sector that has spent the past few years struggling (and continues to struggle) with developing a personalised approach to support, those of us currently using social media to discuss social work or social care, seem to have forgotten (or be in danger of forgetting) about the need for personalisation. Social media can certainly be a useful tool, in my experience it has opened doors, formed and supported connections and relationships, provided a viewpoint I wouldn’t otherwise have, given useful context from many worlds I don’t regularly inhabit or have access to.

The benefit of social media as a support for broadcast or information share is well established, even in social care. Well maybe not well established, but it’s logical and easy to explain to someone, and I’m confident we could find examples of it being used in this way. I don’t believe we’ve even scratched the surface on its potential as a tool for collaboration or crowd sourcing, for creating content and sharing ideas across the sector.

I also have yet to see any evidence of social media making much impact as a support for those wishing to access and use services, I’m sure there are one or two notable exceptions, but I’d hazard that these anecdotes are just that. Those of you in the social care sector who are familiar with personalisation will almost certainly have heard the anecdote of the guy from the north, who bought a season ticket for the football/rugby/cricket with his personal budget*. Social care is full of these examples, genuine stories from service users that get borrowed by politicians or civil servants and before you know it they become part of the folklore, and yes I deliberately put in the vague notion of what the season ticket was for because I’ve heard it claimed as so many things in recent years, a classic case of Chinese whispers!

So my plea, because I promised to keep it short. Let’s not forget about the true meaning of personalisation, about giving choice and control to the end user. To do so that means a range of methods for learning, sharing and communicating. A range of approaches for doing our business and providing support. So let’s talk about the benefits that social media provides, let’s dream expansively about the possibilities, but let’s not claim it as a panacea.  It has huge potential, within a range of approaches, but let’s ensure our end users get to choose to use it, rather than those of us who are converted trying to convince them it is the most appropriate choice!

*The season ticket holder (shown in the piccie above) was Gary Croft from Oldham, you can read about his story here.

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:

Depression Alliance

Mental Health Foundation

MIND

Samaritans

SANE

(cc) on flickr by Tommarsh – Black Dog of Depression, St Patrick’s Day Parade 2011, Dublin

Abuse and Neglect – do we love animals more? The Sequel.

Back in June I wrote a blog post comparing the public response to two current news stories – the first about Winterbourne View, the scene of institutional abuse of people with learning disabilities, and the second about two Metropolitan Police dogs who suffocated when their handler left them for too long in a vehicle. These stories were both equally horrific, but the public response to the animal cruelty was far greater than to the abuse of people with learning disabilities.

Tonight when I checked the BBC news site I was appalled to see the headline story of a local woman who had abused a kitten. This story was reported this evening and has so far (at 21.30pm) been shared 2800 times.

The news story I was looking for was about a new report from the Equality and Human Rights Commission (EHRC) that has found home care for older people is so bad at times it is breaching their human rights. This story was the headline this morning, was reported on the site just after 8am and over 12 hours later has been shared 1300 times.

As I argued back in June, both of these situations are horrific. I’m not advocating that abusing humans is far worse or far better than abusing animals, I’m just surprised at our reaction to it. Still surprised.

Signposting

RSPCA Cruelty Line 0300 1234 999

NSPCC HelpLine 0800 800 5000 and ChildLine 0800 1111

Action on Elder Abuse Helpline 0808 808 8141

If you are concerned about a vulnerable person (adult or child) suffering abuse and don’t know what to do about it contact 999 if it is an emergency or a crime or contact your local council or police force for other concerns. Usually if you Google ‘reporting adult abuse’ and ‘the area where you live’ you will usually find what to do.

Cancer survival – the good, the bad and the reality

The Good

New research published today by Macmillan Cancer Support has shown that in most cases the length of time people survive after a cancer diagnosis has improved dramatically over the past 40 years. Back in the early 70s if you were diagnosed with cancer, the median survival rate (worked out as the time it takes until 50% of people diagnosed die) was just one year; by 2007 this had increased to almost six years (5.8years).

The graph that follows, taken from Macmillan’s report Living after diagnosis: median cancer survival times, shows the change in median survival over the past forty years:

The other thing to consider is that these are median rates, so the time taken until half of all people diagnosed die, therefore many people (the remaining 50%) will live longer than these averages. The good news doesn’t just stop there, some types of cancer have shown massive improvements in survival rates, for example Colon cancer (17-fold increase), Non-Hodgkins Lymphoma (10-fold increase) and Rectum (7-fold increase).

As you can see from the graph above, Breast cancer survival rates doubled in the 70s and in the early 90s it joined six other cancers with median survival rates of more than ten years (since the early 70s) – Testis, Uterus, Larynx, Hodgkin’s Lymphoma, Melanoma and Cervix.

The Bad

It’s not all good news though.

Nine of the cancers looked at had median survival rates of three years or less. Some cancers showed very little or no improvement, with Stomach, Oesophagus, Pancreatic, Brain and Lung Cancer all having a median survival rate of less than a year. Macmillan also point out the limitations of focusing on survival rate as a standalone measure, we obviously also need to be mindful of quality of life.

The Reality

My Dad was diagnosed with Cholangiocarcinoma, Cancer of the Bile Duct, over four years ago (when we were told he was likely to live for three months depending on the success of treatment). Dad was told he was terminally ill last autumn. You’ve probably never heard of Bile Duct Cancer – there are only about 1000 cases diagnosed in the UK each year. Given how rare the cancer is, and how hard these things are to judge, his consultants have always been vague about Dad’s chances of survival, tending to work with estimates and talk has nearly always been about his chances of meeting milestones, e.g.whether he’d reach one or five years.

Dad’s odds of survival have varied throughout the past four years but one thing we’ve always known is that we couldn’t take anything for granted. His determination and fight has been crucial to him living as long as he has – that and the skills and care of the professionals who have supported him. Dad is away on a mini road trip this week, and tonight I popped round for dinner with my Mum and my brother and his girlfriend, in a strange way it was a little like a window into the future. The last time the four of us sat down to eat together without Dad was when he was hospitalised four years ago; as I drove to Mum’s I remembered how horrendous the first year after Dad’s diagnosis was. It’s almost easy to forget how difficult it is now we’re so familiar with cancer, the language, the reactions it gets from people, the options, the frustrations and the opportunity it presents. On balance I think we’re lucky, lucky to have the opportunity to prepare ourselves for the reality of what’s ahead.

I hope this report from Macmillan gives other people hope and perspective. There isn’t very much cancer good news around and this report should prove a cause for optimism for the many people, families and friends who will be touched by cancer. If nothing else, if you’ve stumbled across this post by accident, take hope from our family situation and my Dad’s own exceptional ability to outlive everyone’s expectations. Medians are after-all just average statistics, and someone has to be in the 99% group.

Innovation and a curry – what’s not to like?

The return of #innopints is upon us – tonight a few of us are meeting in the innovation hotbed that is Newton Abbot, for drinks, curry, social and a bit of chat, some of which may well be about innovation. A few of us have met once before and decided we’d like to meet up again – so there we have it, the return of #innopints was born.

The plan is to meet at the Eastern Eye at 7pm. It’s stumbling distance from the train station, come out and head towards town (that’s on your right as you leave the station) and it is about 4mins walk on your left hand side – you’ll probably smell it before you see it as there are several curry houses on that stretch. There should also be parking on the road outside, or there is a car park a few minutes away. To make it easier for people to find I’ve made a little map – the icon for the venue is green, the car park blue and the train station should be obvious.

The people I have down as attending are @martinhowitt @carlhaggerty @psweetman @JohnWLewis @robjglover and @phillirose with a possible from @dalekdoctor @samnixson @fergusbisset and Adrian Wood. I reckon if we meet at 7pm we can hold off ordering mains until 7.30pm  to allow as many people as possible to get there – if you’re on this list and know you definitely won’t make it please can you let me know so we don’t wait for you! Even better if you’re not on the list but would like to be, shout now and I’ll get a bigger table.  Looking forward to it.

(cc) Photo by WordRidden on flickr – this wasn’t taken at the Eastern Eye but I’m sure it would be just as good!

A week of remembrance

This week has been a week of remembrance for myself and my family and I thought I’d take some time to reflect on it.

Last Sunday Dad and myself went down to the Remembrance Sunday Parade in Torquay. One of the many conversations we had that day was about how little either of us had expected Dad to see this year’s parade. Dad, for anyone who doesn’t know, is terminally ill with cholangiocarcinoma (Bile Duct Cancer). He has had this cancer for four years now and we were told not to expect him to live when he was first diagnosed, this has been repeated many times since and this time last year we did not expect him to live to Christmas – in fact my blog post from a year ago explains my feelings at the time. Dad is my definition of a fighter, he knows he isn’t ready to give up  his fight yet, and a recent blood transfusion has given him lots more energy and as much as I never assume anything these days, I’m quietly optimistic he’ll make Christmas 2011.

The photo is Dad (on the right) and his best mate Pete.

The remembrance didn’t just stop on Sunday though. Thursday saw myself and Mum travel to Wales to watch 1 Rifles receive the Freedom of Chepstow. My brother-in-law was one of the hundreds of soldiers who returned from their tour in Afghanistan in recent weeks and my earlier post Swift and Bold sums up some of my thoughts about my little sister, and all the other wives, husbands and partners who are left behind. About 500 members of 1 Rifles marched through Chepstow and there was quite a crowd gathered to acknowledge their efforts:

The Parade through Chepstow was followed by a Medals Parade back at their barracks, followed by refreshments, before Sounding Retreat and a Fireworks Display. One of the highlights of the parade had to be the Band and Bugles of the Rifles playing Lady Gaga’s Poker Face – if you click on the photo below you’ll be taken to the Audio Boo site where you can listen to this awesome performance:

All of that said, this post was meant to be about remembrance, and we found time to do that too. 1 Rifles lost five men on this tour of duty, one of them left behind a widow, Carla, who was pregnant at the time – she was at the parade with her beautiful young baby, who was born on L/Cpl Jon McKinlay’s birthday. Jon, was the former husband of my cousin, and Dad to her two children. He was also killed on this tour, and Megan and Oliver have raised nearly £2k in his memory. Thursday provided an opportunity to celebrate the safe return of the many, while remembering those who paid the ultimate sacrifice.

I found myself thinking a lot about military life this week, and the sorts of people who choose that life path. I really admire them, I often think about how different my own life might have been if I’d gone down a similar path instead of opting for university and research, that said I don’t think I’d have coped particularly well with the discipline. I think the ability, and freedom, to question is pretty core to who I am and I don’t think I’d last long in a system where that wasn’t the norm. That in itself leaves me feeling even more in awe of those who do choose to join our Armed Forces, and the friends and family who support them to do so. The irony of that statement isn’t lost on me either – I know my own freedom to question, is upheld by the actions of those who have fought to maintain peace and freedom over the years.

On a lighter note, it also leaves me loving a new rendition of Lady Gaga – if you didn’t listen to it earlier, go on, click here, it’s worth it.

If only canteen food always tasted this good

This weekend I headed to River Cafe Canteen at Axminster. I’ve been a couple of times now and keep coming back – so something must be good. I thought I’d blog this time, mostly because I’ve got some piccies of the food that I thought you might enjoy.

First up the actual canteen space. I love it, the perfect mix between a proper nasty old school canteen, and a fabulous nice cafe; blackboards, bunting, wooden tables, can’t go wrong.

Next up starters, we had one Pork and Bacon Terrine:

Cornish Blue and Roast Butternut Squash:

River Cafe Ham and Shredded Red Cabbage:

and one Crab on Toast:

In a party of six, we had four people tempted by the Sausage, Lentils and Salsa Verde:

Mussels cooked with Bacon and Cider:

Cottage Pie with Greens:

with a side order of Chips:

The two desserts that proved popular were, Apple Crumble with Vanilla Custard:

and Chocolate Mousse with Brandy Cream:

All of this was accompanied by a couple drinks and coffee and a trip to buy some coronary clogging delicious cheese and bread on the way home. So, what’s the verdict, well I’ve been to the canteen three times and will definitely be back again. That said I thought they were understaffed in the canteen, which meant that service wasn’t as attentive as it could be. For example, I really don’t mind standing in a queue, but when I get to the front of it I’d like to be acknowledged and told how long I will be waiting for a table. Again, there was gorgeous looking bread up near the counter, we weren’t offered any (maybe we should have asked) but if our waitress had a little more time I can’t help but think she’d have offered some or explained whether bread was or wasn’t included. So, the food was fantastic, the atmosphere was great, the wait was bearable (and well worth it), the service was good but it felt like they could have done with another pair of hands on the canteen floor.

That said, I’d definitely recommend a trip if you’ve not already been – you can judge for yourself then.

GMC Consultation – Good Medical Practice 2012

This weekend I did my good turn for humanity by responding to the General Medical Council Consultation on Good Medical Practice. This draft guidance encourages debate about what good medical practice should look like in the future. This post isn’t likely to be of interest to many of you, but if you are interested (and can make your way through the appalling formatting – apologies) then please feel free to see my responses that I submitted – and better still discuss/debate/disagree with me – I do love a good online debate! Thanks.

Section 1: Continuity of Care

Q: How important is continuity of care? (Options: Very — quite — fairly — slightly — not)

A: The single most influencing factor in my experience of the NHS has been continuity of care – I reference this as influencing because it has had significant positive and negative impact. When continuity of care is well established, professionals talk to (and respect) each other, work well in collaboration and are able to easily pass information between those involved with providing care – this makes for a top notch customer/patient experience.

When continuity of care is not well established, when computer systems don’t ‘speak to each other’ and different professionals provide you with conflicting messages, when professionals don’t treat each other with respect, when local and professional politics are played out in front of patients, it can add further stress at an already stressful time.

Q: Do you agree that doctors should take action whenever they see poor care?

A: I think all staff, and patients, should take responsibility for taking action when they notice poor care.

Section 2: advising patients on their lifestyle

Q: Do you agree doctors should give patients advice about their lifestyle choices?

A: If we expect doctors to treat patients holistically, and if as a patient I complain when a doctor does not consider me as an individual, then I’d fully expect a doctor to advise me on my lifestyle choices.

Q: Would you be happy for your doctor to advise you in this way?

A: Yes

Section 3: Supporting and encouraging research

Q: Should doctors encourage patients to take part in a research study that is relevant to their condition?

A: I think doctors should provide information, inform patients of the benefits or risks of taking part, and support patients to make their own decision.

Section 4: Doctors’ personal beliefs

Q: Doctors must tell patients of their right to see another doctor if they object to providing treatment themselves. Do you think that’s fair?

A: Yes

Section 5: Openness

Q: Doctors must be open and honest with patients if things go wrong. Doctors have a duty to: 1) put things right if they can 2) offer an apology and 3) explain what has happened and its effects on the patient’s health. We say doctors must do this when patients have suffered harm or distress. Should doctors always follow this guidance when something goes wrong?

A: Doctors invariably know more than their patients, they usually hold the power (and responsibility) in the doctor-patient relationship and therefore it would seem essential that they follow this guidance. I would also expect that patients would follow it to and would be comfortable with a doctor-patient agreement that both signed up to.

Section 6: Doctors treating themselves and those close to them

Q: Do you agree that doctors should, wherever possible, avoid treating themselves?

A: Yes

Q: Do you agree that doctors should, wherever possible, avoid treating their close family members or others close to them?

A: Yes

Q: Do you agree that doctors should be registered with a GP who is not a member of their family?

A: Yes

Section 7: Vulnerable Adults

Q: Do you think that doctors should tell the police or social services, even if the patient doesn’t want them to?

A: Yes. I think *everyone* has a duty to protect and speak up for vulnerable adults or adults at risk. Doctors are in a position where there concerns are likely to be taken more seriously than some other members of society and therefore I’d like to see all doctors taking a more active role in the protection of this group.

Section 8: Maintaining trust

Q: Patients must be able to trust their doctors. So we think that doctors should not do things that could undermine a patient’s trust in them as a doctor, or society’s trust in the medical profession, even in their lives outside their medical practice.

A: I completely agree, however I think this is quite a value laden judgement. I suspect I have a very different view to my parents, for example, about what would undermine my trust, and about what I consider to be professionalism.

If this criterion is important then I think it needs to be made explicitly clear what these standards are considered to be – as a patient I do not wish for the professionals treating me to treat me with disrespect or abuse the trust I place in them. That said, I also think that the GMC, and the public, need to be realistic about what can be expected of doctors – they are after all only human, and need to be treated as such, with real lives in which they may make mistakes.

Section 9: General

Q: Anything else you want to say….

A:  I’m sure that it would be considered implicit in the other sections but as a patient, not a professional, I’d like to see something explicit about communication and an acknowledgement of the patient’s role within the doctor-patient relationship.

In my experience when doctors have treated patients as equals, when they genuinely listened to and responded to what the patient shared, it has led to better clinical, professional and personal outcomes for all. I’m not inferring that the patient always knows best, in fact I don’t believe they do. However, I do believe that much of health is linked to a patients experience of the health service/doctor – not just to their medical treatment, and therefore I’d like to see something that explicitly references communication between professionals and patients, and acknowledges the power balance between them.

So what do you think?

Seagull safety

Snapped this at the weekend and enjoyed it so much thought I’d share it on here.

I particularly like the dash to add suspense between please and do.

Honestly – just do it!

Just over a year ago I ran a half-marathon in Cardiff and I’m a bit ashamed to admit I’ve barely run since. Until eventually last week I snapped and decided I’d had enough of not doing enough (or to be more accurate, doing anything).

So I’ve been for three runs in the past week: two for 20mins (1.8m) and one for 30mins (2.7m). As you can see it wasn’t fast and it definitely wasn’t pretty. That said when I woke up this morning I actually wanted to go out for a run. Yes, you read correctly, I wanted to.

So for anyone who is sat there considering doing it, just get up and go, honestly, just do it. I convinced myself that even ten steps is ten steps more than I’d do if I was busy sat on my arse. Go on, I promise you’ll not regret it.