I am 84, my wife 83, who I'm slowly losing to dementia. I know the road we are going down will be very difficult but you should hear how it is affecting me.
It is the very little things that I miss. We have been 60 years married, and have made fun, nonsense, and laughed at each other all through that time.
But now she takes everything serious you cannot make a quip any more. Everything is the gospel, you have to bite your tongue before saying anything and it slowly destroys you as well. This is double illness - the patient and carer - and so many people don't know that.
From Lammie on Patient Opinion - story no 76330
Living alongside someone as they slowly walk into the mists of dementia is hard. As Julia Williams, assistant director at Coventry and Warwick Partnership NHS Trust says in her thoughtful reply to Lammie on the Patient Opinion site: “The illness of one becomes the illness of all involved.”
So it’s worth thinking about how the latest information policies and innovations might help Lammie and his wife.
Possibilities of paperless
Would on-line access to his GP record help? Since Lammie has already told his story on line he is clearly on the right side of the digital divide.
But although access to his own record may help at the margins, it is access to his wife’s GP record that is more likely to transform his life.
Negotiating such access for someone ‘without capacity’ is entirely possible and hopefully being worked into the governance arrangements.
(Along the way it is worth noting that such access may lead to some surprises – “You never told me about that abortion/STD/suicide attempt dear!” – but that’s another story.)
What about going paperless by 2015, as the new national director of patients and information, Tim Kelsey, recently promised?
If we can do it, then Lammie might well be a beneficiary. Fewer lost notes, more coordinated care. He would probably like easier access to making appointments and ordering repeat prescriptions, too.
Tensions in telemedicine
Padding round some conference exhibitions recently it struck me just how vibrant the telemedicine market has become. Every other stand offered a new way to monitor some dimension of some chronic illness in someone’s home.
So what has telemedicine got to offer? Perhaps a nice little box winking in the corner could keep a beady eye on Lammie and his wife, and along the way help his care coordinator to keep costs down. Maybe we could even get his son to pay for it, since he, too, may find it reassuring to know that dad is doing OK.
Telemedicine is clearly a good thing but edges easily into something ‘we’ do to ‘them’; a medicalised version of CCTV. Would Lammie welcome such surveillance? Hard to tell.
If his wife still had her sense of humour, you can imagine them giving the box a name and making jokes about it. But as they walk their difficult road together, who knows whether he would find its winking constancy comforting or oppressive.
The Orwellian tendency buried in telemedicine becomes clearer when compared with similar kit being built by the public themselves.
Stuart Arnott wanted to keep his ill mum in touch with her newly born granddaughter. A deft hack enabled him to display the day’s baby photos from London on a digital photo frame sitting by mum’s bed in Edinburgh for less than £100.
Out of this came Mindings.com, which sells digital photo frame technology to help families keep in touch with relatives who find it difficult to use the web.
You can add text (“Here’s Alice at the zoo yesterday” or “Don’t forget your appointment with the GP today”) and change the photo next to dad’s chair at will from your PC or mobile.
‘Co-production’ is a great idea, but its centre of gravity is often firmly set on the NHS’s side of the conversation – “How can we get you lot to take better care of yourselves (and help us save money)?”
Of course building kit that monitors the population to meet clinician ends is good as far as it goes, but Mindings.com and other start-ups show how the real benefits may come when you begin meeting citizen needs with citizen networks and then add-in what clinicians want.
Holding onto love
Finally a crazy thought strikes me – maybe the relationship between staff and the NHS is more like that between Lammie and his wife than we care to admit.
Just like Lammie, we, too, have been our 60 years married to the NHS. Perhaps it’s nostalgia, but in earlier years the relationship between staff and their work seemed easier.
Now, like Lammie’s wife, the NHS is more demanding - now she takes everything serious, you cannot make a quip any more. Everything is the gospel, you have to bite your tongue before saying anything and it slowly destroys you as well.
Great care depends on great information. It also depends on staff feeling supported and, at some level, loved. Despite important moves towards the first it seems to me we are farther away than ever from the second.
About the author: Paul Hodgkin is chief executive of Patient Opinion, a website on which patients, service users, carers and staff can share their stories of care across the UK. Patient Opinion is a not-for-profit social enterprise based in Sheffield.
Until 2011 Paul also worked as a GP and has published widely including in the BMJ, British Journal of General Practice and the Guardian and the Independent.
Paul Hodgkin will be speaking at EHI Live 2012 next week.Tweet #ehilive
Making changes to health recordsMike Clark 121 weeks ago
Yes Paul, I agree with your point about 'annotating' rather than actually altering an existing record made by a doctor.
The discussion does also raise an interesting point about whether the health and/or social care professional is notified that an individual record has been annotated or updated in some way.
Responsibilities would need to be clarified, for instance, where a worsening condition or medication side effects had been added to a record system by a patient - does the doctor, nurse, hospital receive a notification and are they expected to act on it? Under certain circumstances can a family member or carer annotate the record to be seen by a GP/social worker eg 'my partner with dementia is now leaving the house and wandering at night, the medication is not working, they have left the gas on - what should I do?'.
Additionally, some annotations may make observations on the doctor's approach, diagnosis or treatment plan.
As well as typos, I suspect also that a few doctors may want to replace some inappropriate acronyms and subjective observations in their records.
As regards adoption of technology, it can typically take 15 years for healthcare to adopt a new technology. We can see that there is only limited use of e-mail with patients and service users let alone use of social media, apps, patient portals, Skype etc.
The drive will come from 'industry and consumers' but we need to remember the vital importance of human contact and interaction in health and social care and make sure that the balance of Tech/Face to Face works effectively for each individual patient or service user.
Mike Clark (@clarkmike)
We will get it fixedJon Hoeksma 121 weeks ago
Richard we will fix it. we have done before and for frustrating but stubbornly difficult reasons now need to again, but will make it a priority as soon as EHI Live is out the way.
Until then thanks to contributors for their patience. Pasting copy as plain text is a good way to avoid escaped characters though...
Moving.CertaCitrus 122 weeks ago
Thanks you for your article.
My grandmother passed away last year and that was been the only time I really wanted to have access to a family members medical record. Not for checking up on any organisation/person but to help (mostly my mother who obviously wasn't at her best at the time).
Thinking about my parents, ideally it would be a good time to sit down with them and discuss future access to medical records. I wouldn't be interested in seeing past history, maybe just medication or just even recording the fact they would be happy for a health professional to share information with me and my brothers.
This isn't an IT idea (although it would most likely be one), it'd be just organising a family confidentiality policy for use by all NHS and council social services wrt my parents and their care.
Difficulty reading display of comment posted on 30 OctoberMike Clark 122 weeks ago
The comment posted on 30 October is substituting for dashes and apostrophes - see below - on Chrome and Safari Browsers - makes it difficult to read. Mike Clark
Access to GP records what could be of more value is an integrated health and care record. Although there are promises to make GP records accessible by 2015, this may not necessarily be a joined up health record and I don't yet see the support for an integrated health, housing and social care record that can be updated by the individual. The issue of accessing someone else's record is likely to prove challenging could this be done in the early stages of dementia diagnosis? There could well be some surprises but how realistic is it for electronic health records to fully detail someone's earlier life. The real gains could be from more coordinated care, local service directories/advocacy and e-mail/online conversations with experts/peers/carer groups for advice and support.
EHI - please sort out "%u213", "%u219".timbenson 122 weeks ago
I had expected that this problem would have been sorted years ago. It really spoils the enjoyment of this site, for anyone using a modern browser. Surely EHI can do better than the NHS!
Great blog - some thoughtsMike Clark 122 weeks ago
Great blog - A really enjoyable read. Here are a few thoughts.
1 Access to GP records - what could be of more value is an integrated health and care record. Although there are promises to make GP records accessible by 2015, this may not necessarily be a joined up health record and I dont yet see the support for an integrated health, housing and social care record that can be updated by the individual. The issue of accessing someone elses record is likely to prove challenging could this be done in the early stages of dementia diagnosis? There could well be some surprises but how realistic is it for electronic health records to fully detail someones earlier life. The real gains could be from more coordinated care, local service directories/advocacy and e-mail/online conversations with experts/peers/carer groups for advice and support.
2 The reference to telemedicine is a little confusing. Telemedicine normally refers to clinician to clinician consults generally with a patient present and usually at some form of health establishment eg a person with a mole on their body in a GP surgery on a Scottish Island is linked via HD camera and video-conferencing to a dermatologist on the mainland. There is also general confusion over the range and scope of tele-things such as telehealth, telecare, mhealth, ehealth etc. In its simplest form it is health, care, medicine etc at a distance - in its practical form it is digital and assistive technologies that work and make a difference for individuals and their families. If the box in the corner (most likely in the future to be your phone, tablet or TV) winks at you and it is an NHS service (eg helping to monitor BP, SPO2, weight etc), then the person with dementia may also have COPD, diabetes, heart failure which may benefit from telemonitoring. There should not be a charge for an NHS service. An important aim of this type of monitoring is self-management in time, once stabilised, the service may not even be needed. If it is a concern about leaving the gas on, flooding the bathroom, fire safety, exiting the home and getting lost, getting up at night and falling etc, then some form of telecare system with a phone/pager alert or control centre link may be of value. These services could be chargeable via social care but could be included in a personal budget (if eligible). There are a wide range of options available out there including exciting innovations such as Mindings (mentioned in the blog - http://www.mindings.com). There is plenty of evidence of carer and user benefits and the ethical issues of telecare and dementia have been well-explored by SCIE and Stirling University Dementia Centre. I would not be worried about surveillance from these devices/services as you have a choice to keep them in or take them out (unless they are implanted pacemakers and defibrillators). Device and service configurations are likely to need to change as the dementia progresses. By 2020, most electronic devices in the home will have an IP (Internet Protocol) address Internet of Things enabling you to decide what you want to interact with and any level of home monitoring or personal monitoring that is appropriate. There are increasing numbers of mobile options for outside the home. if you are worried about 'surveillance' then your mobile phone knows where you are, so do certain social media applications and in future, smart meters (every home by 2020) will be monitoring energy use.
3 Co-production will be important particularly if personal health (and integrated?) budgets take off. It will be vital that people have access to health apps, devices and a range of services that will link to their personal health and social care records (eg e-patient movement in the United States, Kaiser model). This consumer pull will also hopefully encourage more innovation to meet the health and well-being needs of the whole population not solely those whose lives currently revolve around digital technologies such as smartphones, tablets and gaming. As for the staff of the post Health and Social Care Act NHS world there are some major challenges. With the money available we cannot continue as we have been in England, ?70bn (around 70%) is spent in the NHS on long term conditions we have to do things differently, we need to be more personalised, we need to improve outcomes. Digital technologies offer some great new opportunities and require clear leadership and support for health, housing and social care staff through a difficult transition. The trick is to find stuff that works (evidence, cost-effectiveness), stuff that engages people (accessibility) and is not threatening - and that applies to staff as well as individuals, patients, carers and families.
Looking forwards to more discussion.
Mike Clark (Twitter @clarkmike)
Telemedicine and telehealth - what might Marx have had to say?Paul Hodgkin 121 weeks ago
Thanks for your thoughtful coments Mike - I really appreciated them.
On access to GP records I think this is very much an evolving situation. For example you mention the advantages of being able to update one's own record which is both true but raises immediate issues about the legal status of records and what has been recorded. It is easy to imagine situations where this increased clinical uncertainty rather than decreasing it especially perhaps in urgent care situations. Annotation may be a better option than updating.
(Interestingly as an ex-GP I think that GPs will initially be much more bothered a much more mundane problem - the number of typos in their free text entries. Most GP systems do not have spell checkers so GP records are littered with typos. Up until now there has been no incentive to correct these in the middle of a busy surgery. But they can make your records look deeply unprofessional!)
Your comments about telemedicine vs telehealth are well made. And I agree that as the Internet of Things get going all this will become routine. Two things really interest me:
- will professional needs dominate the way that these tools come to be embodied in our lives? Or will 'lay needs' as embodied through the commercial market be the major force?
- the wider aspects of transparency and how these affect our sense of ourselves.
This merges in to your last point about co-production where I think we more or less agree.
Although I do always wonder what Karl Marx might have had to say about 'co-production' - who's production? for whose benefit? who controls the means of production? All very pertinent questions.
Tele Health Care and Medicinedesperado 122 weeks ago
A thoughtful piece, and key to remember the carers, especially where both partners are supporting each other in their later years, before either falls ill.
I heard Paul speak at a recent meeting, and there were several other talks that I saw, mostly I felt around Telehealth rather than Telemedicine.
In our patch, we are trying to use Telehealth to empower and educate patients in their own longterm conditions (not currently dementia). Telemedicine is about relaying information for clinical "expert" review. Telehealth does this too, but feeding the readings directly to an interested patient and/or their carer should help them to feel more in control, supported but independant.
And Telecare or Assistive Technologies is more the aids to daily living, often led from social care. These distinctions are important.
Holding onto lovemrtablet 122 weeks ago
Thank you for a thought provoking article. As a clinician now working full time in healthcare IT, it leads me to question whether I am part of the solution or part of the problem.
I see within healthcare IT an epic struggle between those intent on giving the surgeon a better scalpel and those whose 'vision' is to replace the surgeon with a cheap automated scalpel that can only give the illusion of an operation well done.
The NHS has systematically moved away from a position where named professionals had personal relationships with patients. It's not only cost cutting which has driven this change. To some degree specialisation and reduced working hours necessitate some of this. However healthcare IMO should not be reduced to an impersonal production line operation.
The Zeitgeist dictates NHS patients be corralled into stereotypical care pathways administered by teams made up of modular clinicians. These care pathways are to be supplied under one-size-fits-all contracts. At the same time clinicians are often substituted by less experienced or assistant grade staff - after all there are few degrees of freedom for decision making left anyway.
Are NHS staff fated all to become faceless bureaucrats clicking check boxes on on-screen forms? Each professional seeing or talking to the patient as little as possible to cover their back - the next shift will sort it out?
Against this bleak background Healthcare IT is plainly expected to somehow put the 'soul' back into the NHS machine. I fear that is not within the power of the technology.
What it means to 'care'Paul Hodgkin 121 weeks ago
Thank you for your thoughtful comments which I think are spot on. But to get the measure of this problem I think it is worth thinking about it as more than just a managerial or an IT issue.
For me it turns on what it means to 'care' in a 'health care system'. For years I struggled with this - what, as a GP, did the care part of my job really mean? Eventually I came across two definitions that really helped:
Firstly Mintzberg's definition of professionalism as 'the exercise of discretion on behalf of another in the face of uncertainty'. This means that the most important thing in being professional is the exercise of of discretion (judgement) on behalf of another. It is not linked to any particular role or status so a porter noticing that someone they are wheeling down a corridor is suddenly deteriorating is acting professionally. Equally a clinician who is following a protocol without thinking, reflecting and where needed using their discretion is being a technician rather than a professional (and some times of course we do need to be technicians).
Secondly it really helped me when I came across Val Isles's definition of 'care' as 'acts of work and courage that help increase another person's health or growth'. This is great because it values those acts of work and courage that litter great clinical care but which are almost invisible to the transactional care typically recorded on computers or paper.
(See @paulhodgkin for tweets that try and highlight this kind of care - or its absence - as exemplified by patient stories published on Patient Opinion.)
Shared values and idealsGlen Griffiths 121 weeks ago
Thanks Paul - nail,head,hammer,hit once again where you quote re: professionalism
'the exercise of discretion on behalf of another in the face of uncertainty' ..I think in a healthcare setting it is something only clinicians who see so much but can say so little can fully comprehend.
With increased performance management, the clamour to pigeon hole, code, demarcate that mrtablet describes so well (often masqueraded as patient-centredness) is an attempt at industrialisation that is patently doomed to fail IMO. It is so important to differentiate between industrialisation and the use of technology which as we both know has huge potential for good when used wisely and in my view can also uphold and support 'professionalism'.
- what I appreciated from the moment you setup patient opinion is the qualitative nature of the interaction that you facilitated through narrative that has huge potential to inform and transform compared to the quantitative approach being heralded elsewhere.
The general trend towards people power / patient power and so on I find hard to fathom as it's not the language that patients themselves use FME. That language naturally creates 'them' and 'us' and your point about Marx and control of the means of production is of course well made - I still don't truly know what co-production means and I work in this stuff.
We entrust doctors and other health and care professionals to do the right thing - we should empower those individuals to be able to feel more certain about uncertainty and not to be driven or judged solely by numbers.