New Year’s resolution…?

I’ve rather abandoned this blog whilst concentrating on the development of Mycarematters, and I’m not going to fall into the trap of promising to do better… and failing!

However, I haven’t gone completely silent (as if!). Here are a few links to other places I can be found online…

Mycarematters blog:

Mycarematters itself:

A blog post I wrote for British Geriatrics Society:

and another for John’s Campaign:

and on Twitter…


and on Facebook:



Scrabble – real or online: a chance for a chat

I stumbled across online scrabble this weekend… Mum would have loved it! She and my late stepfather would often have a game, the ‘real’ version that is, with the hardboard board whose two parts were held together with a faded canvas spine, miraculously intact after decades of use, and the yellowing letters in the cloth bag, equally miraculous that they still appeared to be a full set (I say appeared because I’m not sure anyone ever checked).

Then my stepfather died, and my visits to Mum were never long enough to think about starting a game of Scrabble. But she was an extremely sociable being, always making the effort to stay in touch with friends, and as COPD started to make it more difficult for her to get out, I can see the idea of combining her favourite word game with a good old chat would have appealed. In fact, the ‘chat’ feature might have been the bigger attraction, an opportunity to interact with old friends scattered across the globe and to safely ‘meet’ other like-minded people.

With my late mother in mind, a cautious user of the internet and email in her late 70s, I am increasingly convinced that as we develop Mycarematters we must include the facility for people to communicate with each other, to share ideas and knowledge, or just to pass the time of day. And to do it in such a way – and this is true of all online services – that it’s not about encouraging people to ‘get online’, but creating the safe and user-friendly environment and genuinely life-enhancing features that give them a reason and a desire to do so.

Is going paperless an appropriate goal?


What does ‘going paperless’ actually mean? Those that use the phrase undoubtedly have a vision of what a paperless world could look like and are using ‘going paperless’ as a kind of shorthand. But this choice of words risks clouding a proper understanding of what is actually a quite different goal. (Of course, there may be an environmental argument for reducing the amount of paper we use, but that’s quite a different debate.)

‘Increasing use of technology’ is just as bad. We use technology in our every day lives, such as the umbrellas we use to keep the rain off, or forks to help us eat. But even were this statement to be amended to digital technology or ‘hi-tec’, increasing our use of it is still not, nor should be, a goal in itself.

What people are really talking about, when they aspire to eliminate paper and urge us to embrace technology, is the very real need to find methods of improving communication, sharing knowledge, analysing data, raising standards, maximising efficiency… All worthwhile goals which should have as their outcomes a better standard of care for patients / residents / people and support for their families, a more productive and pleasant workday for staff and, hey, you never know, even reduced costs for the taxpayer. If, in achieving those outcomes we reduce the amount of paper used and increase the amount of technology, that’s great, though largely irrelevant.

That may sound odd coming from someone in the throes of developing a digital solution to enable people to share the information healthcare professionals need in order to provide person-centred care: Mycarematters. Or not so odd, given that I have also developed a range of paper-based charts to help share people’s needs and preferences and which are now used in numerous care homes and hospitals: Remember-I’m-Me Care Charts.

I am an advocate of both paper and digital technology, consider them both merely to be tools and believe there is value in each, often alongside each other.

A report published recently stated that care homes should  have care plans that were ‘personalised, able to be shared and ideally electronic’. Certainly let’s set out some standards for care plans, of course they should be personalised, of course they should be able to be shared and some data should definitely be stored electronically, but implying that an electronic record is a goal in and of itself does nothing to improve standards. In fact, I would contend that it risks doing the opposite, unless the information is going to be made available to everyone interacting with the individual. After all, I don’t imagine many care homes will encourage their laundry, maintenance and kitchen staff, or even their bank or agency care staff to access the electronic care plans and familiarise themselves with their residents’ needs and preferences, so printing or writing something out and sticking it on the wall might still be the best and most consistently reliable method of transmitting the information for EVERYONE interacting with that individual.

I was at a dementia training session recently, and got chatting to the community nurse sat next to me. She described how, until recently, she had used a mix of digital and paper records, printing out her day’s appointments and brief client notes at the start of each day, and updating the digital record at the end of the day. She is now not allowed to print anything out, and is expected to turn to her laptop for a reminder of her schedule, and to update her notes online at each appointment. She admitted that time constraints mean she does not always refer to her laptop before an appointment and relies on her memory, whereas a quick look at a daily printout would have ensured she was completely up to date.

For this community nurse, the technology employed is a hindrance rather than a help; a supposedly more modern way of working that throws up a barrier to working effectively.

In another conversation, a care home nurse bemoaned the fact that now all residents’ records are on the computer, security restrictions mean the visiting doctor had to find someone to give him/her access to the records, a much more time consuming process than taking a file off the shelf. The security issue is easily dealt with, but given the miriad of different digital solutions out there, is it practical to expect a GP to become familiar with the system of each care home they attend?

These comments I keep hearing from staff should not be seen as resistance to digital technology so much as a reflection of the limitations of the systems currently available. I suspect those designing the tools need to focus more on ensuring that their products fit well with people’s working practices rather than expecting people to adjust the way they work to suit the design.

Digital technology is moving forward all the time and offers some huge advantages over paper systems. But let’s be clear as to what our goals really are, and we might just have a chance of reaching them.

Reflecting on 2015, and why I’m so excited about 2016!

2015 was a year of extreme highs and lows for me. It was the year my mother died, having lived with COPD for eight years, and then a few months later I lost my best friend of almost 50 years to cancer. It did feel for a while that someone was picking off my nearest and dearest one by one, my stepfather having died in December 2010 (bowel cancer) and my husband in April 2011 (dementia).

When you add to that a three week hospital stay for my teenage daughter in 2014 I feel that I’ve had my fair share of visiting people in acute and community hospitals and care homes in recent years.

What those experiences gave me, of course, was an opportunity to see some wildly varying standards of, and approaches to, hospital and social care. As an ‘outsider’, I was able to see with fresh eyes what might make a difference.

The first idea I had, soon after my husband Geoff moved to a care home, developed into the range of ‘Remember-I’m-Me’ Care Charts, an initiative for which I’ve won numerous awards. More importantly, it is potentially making a difference to the lives of over 25,000 people in 900 care homes and hospitals.

Job done, I thought. Now that staff have instant access to a person’s needs and preferences there’s no need for any traumatic errors like the ones Geoff experienced (more on that here).

How little I knew! I am of course gratified that the typical phone call has gone from ‘oh, I don’t think the inspectors would like that’ three years ago to, in 2015, ‘can we have some of your charts please, we want to have them in place before our next CQC visit’. Gratifying indeed, but boosting an organisation’s CQC rating wasn’t the challenge I’d had in mind.

I have come to recognise that if the culture of an organisation does not acknowledge the importance of getting to know the whole person, of understanding the value of developing relationships between caring staff and those they are caring for, then you can use 20 different types of communication and relationship-building tools and none will have any impact on the quality of care.

Perfect timing then for UnLtd, the organisation ‘supporting Social Entrepreneurs at every stage of their journey with advice and resources’, to help me take a step back and look at how we could improve our impact. With their help we’ve been able to work on a number of initiatives and I’ll be in a position to talk about the results of that work later in 2016. (I should also add that, from the thousands of conversations I’ve had with staff in care homes and hospitals, it is clear that a person-centred culture does exist in many organisations.)

CCUK at home logo

We’ve also started to consider what adaptations are needed to the care charts to make them work efficiently  for people being cared for in their own home; we’re still looking for input on this from carers, both paid and unpaid, and those being cared for: please complete our homecare survey if you have not already done so, and my thanks to those who have.lightbulb no bckgrnd

But perhaps the single most exciting moment for me in 2015 was when I was mulling over a problem and a particularly bright lightbulb started flashing in my head. It was something that had niggled at me ever since hospitals had started to adopt the care charts; I could see that one of their challenges was collecting the data for the charts in the first place. I had attempted to address that with the Pocket Care Chart, as had the Alzheimer’s Society’s with their This is Me document, and there have been other other local initiatives, but they all risk getting left at home, lost or filed. So how does one transmit that information reliably? Answer: via the internet, obviously.

The second it occurred to me it became another one of those ideas that are ‘so simple I can’t believe it hasn’t been done before’. We need to give people a secure place online where they (or their carer, relation or advocate) can upload the non-medical information they want healthcare staff to know about them, and provide a quick and simple method for staff to access and download that information.

Further research revealed that hospital staff take an average 100 minutes per patient to discover dietary preferences, mobility issues, next of kin details and so on. That could be reduced to a couple of minutes where someone’s information is available on the web.

I’ve been beavering away on this project for a few months, but I couldn’t talk about it until I knew we had the funding to build the platform and get it to the stage where we could start trials. Bethnal Green Ventures totally get what I’m trying to do, have provided the initial funding and Mycarematters is out of the starting blocks!

This is a quick 20 slide introduction to Mycarematters (previously Mycaredata)…

I posted it on Twitter earlier this week and it’s been exciting to see such a positive reaction…


There will always be issues and challenges to thrash out, but right now I’m in ‘JFDI’ mode:

mycaredata noteI’m quite sure the end product will have gone through a number of evolutions since my first scribbles, but the aspiration won’t change: to improve outcomes for those people who struggle to communicate their needs to healthcare professionals.

Like the charts, Mycarematters is just a tool. If staff don’t see why it is important that they know about the whole person and not just their medical conditions, they will not understand why they should bother with Mycarematters. Which is why a significant part of my work this year will, in collaboration with some excellent organisations already working in this area, be to increase awareness of the importance of getting to know the whole person.

Need you ask why I’m so excited about 2016? Bring it on! Happy New Year everyone.

Why housing is such a crucial part of the debate on how we live our twilight years

“There is no way I’m going to live with a bunch of old fogeys!” my 77 year old mother mumbled through the mask that was covering most of her face. In hospital with another chest infection, she needed the mask because a lifetime of smoking meant her lungs could no longer supply all the oxygen her body needed without help.  In time this would be replaced by a simple cannula, a narrow plastic tube with two prongs that held it in place in her nostrils, and she learned to live, and live well for periods, with the inconvenience of being attached to an oxygen bottle 24/7.

I was trying to initiate a discussion about the need to re-think where she lived. Mum didn’t want to hear, reluctant to leave the chocolate box cottage and its beautiful garden she adored so much. And I sympathised, but how on earth was the cottage, miles from anywhere with it’s uneven floors, twisting staircase, not to mention the large garden which needed maintaining, going to be suitable for someone who was going to become increasingly immobile, less able to do things for herself until she would become bedbound? This would lead to even more frequent chest infections, my research had told me, one of which would eventually prove fatal. COPD (Chronic Obstructive Pulmonary Disease) is not a pleasant disease.

So how was I going to convince this fiercely independent woman that she needed to start considering alternatives to her beloved cottage? The OT was thorough in her assessment but was only interested in the here and now, and yes, there seemed little doubt that at that moment Mum could cope. Nobody, including most family members, seemed to think it necessary to act until circumstances forced us to. I appeared alone in my belief that doing something about it now gave her so many more options than waiting for a crisis.

But perhaps it was Mum’s perceptions of those options that made her so determined not to move. Before I’d even had a chance to explain my thinking, her defiant declaration made it clear that she assumed the next stage had to be a care home. What I actually had in mind at that time was a flat and an arrangement with carers.

What happened next probably happens thousands of times a year up and down the country. We set up a bed for Mum downstairs, arranged for someone to come in morning and evening to help her get up and back to bed, and for 3 or 4 days all seemed to be going well. Until she fell. She was trying to sit on the side of her bed, missed and ended up on the floor with, as the paramedic explained to me over the phone, a suspected fractured hip.

Back in hospital and within hours of being told she needed a hip replacement, the anaesthetist asked me to see her. She thought the anaesthetic would be too much for Mum and she would not survive the operation, so was advising against. The alternative was palliative care. It appeared that COPD was going to deny Mum an operation already offered to many of her friends that enabled them to get back to their full and active lives, and she faced instead high doses of pain relief and remaining in bed until the COPD claimed her.

In fact, I got a phone call the next morning to say they had decided to go ahead with the operation using local anaesthetic, and I managed to get there in time to be with her when she came out of the operating theatre. Those first few hours were an anxious period. Just breathing took all her energy, and for a while her SATs were dangerously low. I could see the fear and the effort in her eyes but she was nothing if not stubborn, gradually the fight to live became less of an effort and she could rest a little. After a week in intensive care and a few days back on the ward, it was recommended that she go to a local community hospital for rehab.

The conversation regarding where she was to live became even more urgent, and even Mum now recognised that the cottage was not the best place for her. What a shame it had taken a fall to force her into that realisation, and what a shame that none of us had understood until I did further research that an apartment in an assisted living facility might be within her reach. She did not own the cottage so she had very little capital and a very small income, and we had all assumed that such places would only be available to buy, or expensive to rent.

Mum lived out the rest of her days, from May 2013 until January 2015, in a delightful one bedroom assisted living apartment where the very reasonable rent was covered by housing benefit. This, even taking into account the three daily visits by carers, cost the local authority significantly less than a care home place.

Despite raising all sorts of objections (“I can’t possibly live on the first floor: I will get claustrophobic in the lift”, “There’s not enough room for all my things” and more), within a year she was Treasurer of the Social Club and had set up a Gardening Club with the support of the wonderful manager. She could be as independent as she wished and entertain her numerous friends whenever she wanted, whilst knowing that a hot lunch was available every day (cleverly included in the rent) if she didn’t feel up to making a meal for herself.

I can’t help thinking that if it was an accepted part of our normal progression through life to move to a home more suited to our twilight years with care available as required, Mum and thousands like her would not hold out for as long as possible in unsuitable properties, hanging on as much in fear of what lay ahead as the desire to stay put.

What I haven’t mentioned is the amount of work I had to put in to ensure that Mum was recognised as a priority and thus moved up the waiting list, and the luck that came into play when an apartment became available at the right time. I make no apology for fighting her case which undoubtedly meant others equally deserving were not offered this opportunity. The housing stock should be there for everyone to avail themselves of this option; removing the uncertainty as to where we might spend our final years is surely something to which we should all be entitled.

A worthy cause, or another layer of guilt for the carer?

There is a call to allow the carer of a person with dementia to stay with them in the event they have to spend time in hospital. My first instinct is to agree wholeheartedly with this sentiment. Having the carer on hand would do so much to help avoid those scenarios where an individual does not get the treatment, pain relief, food or general care they need, purely because they are unable to communicate. It would help reduce their distress at being in a strange place, and ease the challenge faced by the professionals as they attempt to care for someone unable to explain their symptoms.

But then I cast my mind back to the times my husband Geoff had to stay in hospital on a few occasions when his dementia was already quite advanced, and I have to confess that uppermost in my mind was the prospect of an uninterrupted night’s sleep. My situation was slightly unusual in that I also had children at home who needed me there, but had that not been the case, would I have stayed at the hospital given the chance? Of course I would, because that would undoubtedly have been better for Geoff. But what about me? I can’t imagine I’d have got any more sleep than a normal night with him at home, and if I had recognised that and said no, I was not going to stay even if the option had been there, all I would have felt was a sense that I had failed in my capacity as Geoff’s carer. More guilt, and goodness knows there was enough of that already at the lapses of temper, at the walking away when it all got too much, at the resentment of the situation in which I found myself.

I’m not suggesting hospital stays should be regarded as respite opportunities for the carer as official policy, but that’s exactly what they are, and there will be circumstances when the last thing a carer wants to do, or should do, is to be able to stay by their loved one’s bed 24/7.

Keep visiting hours as relaxed as possible, allow the carer to be there to help at mealtimes and when the doctors are doing their rounds, make sure all staff have access to information about the person’s needs and preferences, maintain a full and open dialogue to ensure the carer is kept fully in the loop and able to contribute. And DEFINITELY encourage the carer to be on hand for operations or other procedures. Hospitals must do all these things and more to improve their standard of care for people with a cognitive impairment, but don’t rely on the carer to do it all. Send them home to get a good night’s sleep, so the day they finally have to admit defeat can be deferred for a while longer.

Radical, really?

Observer collageWhen I learned a few days ago that Care Charts UK was to be included in The Observer/Nesta’s list of New Radicals I was both surprised and delighted, but I had no idea who the other 49 were. Having now seen the list in yesterday’s Observer, I feel so, so proud to be included amongst this group of impressive movers and shakers.

It is unfortunate that the word ‘radical’ now has connotations of extremist behaviour. We worry about people being ‘radicalised’ but, as Yvonne Roberts explained in the Observer in May this year, “We define “radical” not in the party political sense but in the context of challenging the mainstream, working outside orthodox frameworks and having the skill to put together often very familiar ingredients in a surprising way to meet a real social need: inventions for the public good.”

In trying to improve communication between carers and those they care for I have certainly used familiar ingredients (I often feel pen and paper are vastly under-rated, but perhaps that’s a topic for another day!).

Yvonne goes on to say, “Frequently, the instant response to the success of a project or service in this mould is: “That’s so obvious. Why didn’t someone think of that sooner?” Now THAT strikes a chord with me! I have lost count of the times I have heard exactly those words regarding my Remember-I’m-Me Care Charts (though I have to confess it does irritate me when people go so far as to say “I could have done that”).

It was a natural step for me to turn to visual aids when trying to ensure that my husband’s carers knew something of his needs and preferences. My career to date has included public relations, journalism, marketing, print and publishing, always using a mix of words and pictures to tell stories. Back in the early 2000s I was credited with pioneering the use of visual imagery to liven up otherwise turgid financial documents, another ‘no-brainer’ as far as I was concerned.

I was not thinking particularly profoundly when I developed the first Remember-I’m-Me Care Chart. I just wanted a way of ensuring that the information already in the care plan was made available to my husband’s carers. I looked high and low and found nothing. It was a relatively quick journey from my scribbled notes stuck on the wall to what is being used by thousands of people today: a series of symbols to enable carers to find the information they are looking for quickly and easily, space to write in the person’s needs and preferences, a laminated surface so it can be updated at any time. I was aware that there would always be other information not represented by the symbols, so on all versions of the chart there is space for further information and messages, and we also print prompts next to each symbol to help carers and family decide what information may be most useful.

But in the three plus years that I have been introducing these charts to care homes and hospitals I have done a lot of research, run trials and collected feedback, and it soon became clear that, despite being such a simple tool, it can achieve so much more than the simple transmission of information. First of all, it provides peace of mind for families that their loved one’s dislike of showers, passion for chocolate biscuits and a preference for wearing socks in bed, for example, will all be noted by those providing care. Secondly, it reminds staff that the individual they are caring for is still a human being with a family, interests, a past full of memories and still capable of feeling emotions like fear and happiness.

Knowing something about a person helps the development of a relationship between carer and those they care for, so the carer will experience a greater level of job satisfaction when the information provided allows them to personalise and enhance the standard of their care. Result? An improved quality of life for both the individual and their carers, as evidenced in trials where qualitative and quantitative evidence has been collected.

So, a big thank you to all those care home and ward managers who ‘got it’ in the early days, most of whom are still still using their original charts, and a warm welcome to the increasing numbers who recognise that the apparently simplest solution can sometimes also be the most effective.

A simple formula with powerful consequences

I was honoured to be asked to facilitate one of the events being run by Age UK and Age Concern recently to promote dementia friendly communities in West Kent. This series of 16 sessions used the WhoseShoes? co-production tool to spark debates and encourage attendees to share their knowledge and experience, and think about what they might do in their community to make life easier for people living with dementia.

Having cared for my husband Geoff whilst he struggled to cope with the debilitating effects of Alzheimer’s Disease, and seen how society chose to turn its collective face away, I loved the fact that previously taboo topics were being aired, not at some theoretical or academic level, but amongst ordinary people who would leave the session and go about their daily lives with myths debunked and a fresh appreciation of how they might be able to make a positive difference.

“Add a personal story if you feel comfortable with that,” suggested Gill Philips, creator of the WhoseShoes? tool (and, I was delighted to see, recently included in HSJ’s list of 50 most inspirational women 2014). I gulped. Sure, I’ve started writing about the impact dementia had on Geoff’s life and on those of us around him, but stand up and talk about it?

I was fairly confident enough time had passed for me to be able to cope without getting too emotional (Geoff died a little over three years ago) and I had already experienced the huge satisfaction of using what I had learned to benefit others in a similar position with the Remember-I’m-Me Care Charts, so talking about it did seem to be a logical next step.

The event I chose to refer to demonstrates clearly and simply how ignorance of dementia can have devastating consequences. It was in the days when Geoff and I both knew his memory was starting to let him down,  but he still wanted to live life as normally and independently as possible. We were living in Brighton at the time and he arrived home one day after a trip into town by himself, extremely tired and upset. It turned out he had walked all the way home, so I asked him why he hadn’t taken the bus. “The driver wouldn’t let me on,” he replied. “I suppose my bus pass has expired or something.” I asked him to show me his bus pass and he proffered his… B&Q card. Right behind it was his perfectly valid bus pass but he’d lost the ability to distinguish between the two.

We agreed to take everything out of his wallet that he didn’t absolutely need so as to minimise the likelihood of such an event happening again, but his confidence had been severely knocked and my heart ached for him. He never again attempted to catch a bus.

Having told my story, I invited the attendees to consider an alternative outcome. What if that bus driver had been on one of these WhoseShoes? events or had received some kind of dementia awareness training? Instead of chucking Geoff off his bus, might the driver have recognised that Geoff was confused and give him a helping hand? Or might one of the other passengers have recognised the signs and offered to help? I imagine the reality was that they felt unsettled and perhaps even fearful of an adult demonstrating slightly odd behaviour and pretended not to see what was going on. An outcome that had enabled Geoff to stay on the bus might have meant a few months more of independent living for him. It did not need a dementia expert to change the outcome, just a little bit of awareness.

Part of the WhoseShoes? philosophy is to encourage all attendees to make a pledge to do something as a result of what they had learned at the session. It might be nothing more than promising to talk about what they had learned to friends and family. In fact, I understand that across the 16 sessions over 500 pledges were made, covering a range of activities such as starting a memory box/book, sorting out finances, spending more time with their relative / friend, volunteering and raising awareness, and someone is even throwing a party for people with dementia in their area.

Having asked everyone else at the session to commit a pledge to paper, it seemed appropriate that I should do the same. An obvious task immediately came to mind and turned out to be easier to complete than I dared hope.

“The timing of your enquiry couldn’t be more perfect,” responded the customer liaison officer of Brighton & Hove buses to my query.  “We are just at the present time working with Dementia Friends to increase our knowledge base. Our head of Driver Training is in fact a Dementia Champion and all the driver trainers are Dementia Friends. I myself attended an information session last week to become a Dementia Friend.

“We are looking at ways to improve on our training and we are also just about to launch a new travel card to passengers that may require extra assistance. The card is free of charge and will hold an instruction to the driver of the passenger’s needs as well as, if requested, an emergency contact number.

“We already have very strict policies in place regarding passengers that may be considered vulnerable and free travel is given at these times. This includes children and vulnerable adults.”

Fantastic, just a shame it was too late for Geoff and, no doubt, countless others. Of course, the next challenge for such companies will be to ensure that dementia awareness (or should that actually be people awareness?) is embedded in their ethos, that it retains its place in their training programme for all new recruits. Dementia awareness is the flavour of the month right now and of course that’s very exciting, but we can’t allow it to be pushed to one side by the next fad. There’s lots more to be done.


A weekend well spent…

As always, I had a long To-Do list to tackle over the weekend, but when I heard the thud of two books land on my hall floor on Saturday morning I knew not much would be getting crossed off my list for the next couple of days. The books I had been waiting for were written by Kate Granger, a doctor living with terminal cancer, and I was eager to read her story, having ‘met’ her recently on Twitter and listened, via a link, to the speech she gave at the NHS Confederation annual conference earlier this month.

Most people reading this are likely to have heard of Kate, of her struggle to live as normal a life as possible under the shadow of a terminal cancer diagnosis, and of her inspirational ‘#HelloMyNameIs…’ campaign to encourage all health care staff to introduce themselves to their patients before delivering care. As she says on her website, introducing oneself is much more than just providing a name: it is making a human connection, beginning a therapeutic relationship, building trust.

Kate’s first book, ‘The Other Side’ is riddled with technical terms and medical-speak, making it quite clear as to which audience she wants to reach. Self-published, with all profits going to the Yorkshire Cancer Centre and orders being handled by Kate and her husband Chris so as to maximise the revenue for YCC, it reflects very much the author as she describes herself: ‘slightly bossy, competent but compassionate’ and no sign of the person she fears some will see her as: ‘that poor girl dying of cancer’. For us lay people, Kate has thoughtfully provided a glossary of terms, but one doesn’t need to understand the jargon to get the message. This is a doctor telling it how it is on the other side. Or, to put it another way, this is a patient with medical knowledge describing the progression of her illness, details of her treatment, and making it quite clear what worked and what didn’t in the huge variety of approaches and attitudes she experienced from her professional colleagues.

I read both books from cover to cover with barely a break, hauled in trepidation along Kate’s journey with a mixture of emotions, feeling her frustration when the medics got it wrong, delighting with her when she experienced compassionate, kind and intelligent care, reduced to tears when she, rarely, appears overwhelmed by pain and the desperate nature of her situation.

Being able to return to work allowed Kate to put into practice the things she had learned as a patient: proper communication – finding the right balance to avoid being patronising or confusing; getting the little things right such as getting on the same level as your patient when talking to them; remembering that you are treating a human being and not just a medical condition. It is clear from reviews and from Kate’s own comments that doctors and other healthcare staff have also adjusted their behaviour as a result of reading Kate’s books. I’d say they need to be on the compulsory reading list of every single health care professional.

There was one item that I did manage to cross off my list this weekend, and that was completing another module of the University of Tasmania’s excellent ‘Understanding Dementia’ MOOC (Massive Open Online Course). This week they were covering palliative care, and it dovetailed brilliantly with Kate’s impassioned plea for a better understanding of when to intervene and when to leave well alone… palliative care is one of her particular interests and she challenges society’s perception of all death as failure, when a peaceful, non-medicalised death should be viewed as a success.

Reading Kate’s descriptions of the challenges faced by hospital staff in attempting to treat elderly patients, many of whom have a dementia of some sort and are unable to communicate, brought back a flood of memories of the care my husband experienced when he moved to a care home for the last thirteen months of his life. It occurred to me that I never heard the words palliative care mentioned in all the time Geoff was there. At the time I would have understood it to describe the kind of care one could expect in a hospice, but what I have learned about the benefit of a palliative approach from Kate and the MOOC suggests it has a place much earlier in one’s journey towards end of life, and should certainly not be restricted to hospices. In terms of dementia care, embracing palliative principles might also help relatives to understand that dementia is not just a benign state that can continue for years, but that it is progressive, degenerative and terminal, and dementia itself can be a cause of death.

I had reason to research the availability of palliative care for another family member recently, and was told that funding allowed it to be delivered in the home only in the last 8 – 12 weeks of life. In other words, palliative care is still only seen as being appropriate for that very final stage. Surely the more appropriate response and more efficient for society as a whole, if a person is recognised to have an incurable illness that will result in death at some point, is to infuse palliation into every aspect of a person’s care much earlier. As I learned this weekend, a palliative approach is not about stroking a fevered brow, but being proactive in maximising quality of life, and this may even incorporate rehabilitation and semi-curative treatments. But it also encourages discussion of how and where one might want to die, and to avoid invasive procedures for which the burden outweighs the benefits. It requires care to be genuinely person-centred and for an holistic approach to be taken, avoiding the temptation of treating a given condition without considering the impact on the whole person.

So thank you Kate Granger and University of Tasmania for a most informative and thought provoking weekend. Now, where’s that list…


Hindsight, eyesight and the art of knowing when to do nothing…

Hindsight is a wonderful thing, they say. But when you are way out of your depth in a situation that requires some quick decisions, hindsight isn’t much use. Give me foresight any day. With foresight you have the chance to influence the outcome. Hindsight merely shows you where you went wrong, and how, armed with the facts, you might have chosen a better path. As we don’t have the ability to go back and change things, the only value of such an exercise, I suppose, is to pass on what you have learned for others to be able to make more informed decisions in their futures.

The situation I’m thinking of is the time my late husband Geoff was found to have a serious problem with one of his eyes. He was still living at home and I noticed he was having trouble judging the position of things. He kept reaching out for his mug or a light switch and grasping thin air. This forced me to acknowledge how profoundly disconnected he had become from his senses. Not only did he have a lack of insight as to what was going on with his inability to judge distances, but he also appeared not to recognise any problem with his eyesight.

(Just as an aside, this coincided with his starting to have hallucinations. I thought at the time this meant he might have dementia with Lewy Bodies, but I now wonder whether he was suffering from Charles Bonnet syndrome, frequently experienced by people with impaired sight and which, like Lewy Bodies, causes hallucinations, often in the form of small people or animals. Link provided below for further information.)

I was slow to link his latest problem with his eyesight, seeing it as just another cognitive function that he was losing. But, coincidentally, he had an eye test scheduled for that week, and the optician didn’t require any feedback from Geoff to see immediately that he had a detached retina. It is likely that he would have been seeing black spots and shooting stars, but he had given no indication that he was experiencing any kind of symptoms at all.

The system swung into action with great efficiency. Time is of the essence when repairing a detached retina in order to save the vision, and that evening we were seeing the specialist with a view to Geoff having the operation under local anaesthetic the next day.

I hadn’t needed to say anything to the optician or the opthalmologist for them to realise Geoff was cognitively impaired; he’d been unable to give them reliable answers to their questions when going through the various eye tests. So their automatic response was to exclude him from any of the decision-making. It didn’t occur to anyone to ask him whether he wanted this operation, or to consider what impact it might have in the light of his dementia. No-one stopped to think whether this was actually in his best interest. It certainly didn’t occur to me that an operation in a strange environment and a night in a hospital, with a requirement that he keep his head in the same place without moving for an hour or more, might be rather more traumatic for him than the average patient.

I have to confess that the mere mention of him requiring a night in hospital meant to me the possibility of a night of uninterrupted sleep for the first time in months, so my judgement was probably skewed from the outset. But, looking back, I have to ask why the professionals did not consider the bigger picture? This might be the best thing for the eye, but will there be a net beneficial outcome for the person?

I never could establish whether his eyesight improved. His ability to judge distances did get  better, though I believe that was through a process of readjustment and learning  (Geoff proved time and time again that people with dementia are still quite capable of learning new things). When I asked him to tell me how many fingers I was holding up he would treat it like a joke and not give me a proper answer.

When I went to pick him up from hospital he was terribly agitated and confused, and I was shocked that the staff appeared able to ignore this behaviour, wanting merely to make sure we understood what was required to take care of his eye before sending us on our way. Was it a daily occurrence to have patients exhorting their wives not to pay the bill (this was an NHS hospital), that they’d robbed him and cheated him? Driving home as he sat next to me talking wildly and making very little sense I was frightened to realise that I had absolutely no way of predicting what might happen next. Had he moved on to another stage? Either this was an effect of the anaesthetic and it would wear off, or the trauma of the operation had pushed him further along a one-way road.

That operation marks the moment from which it was no longer safe to leave Geoff on his own. His bouts of paranoia became more extreme and lasted longer, and I’m not sure he ever truly knew who I was again. We’d not long got back from the hospital and I said I’d put the kettle on. He came into the kitchen and said, looking at me, “I’m looking for my wife Zoe.” Already aware of just how muddled he was feeling, this turn of events didn’t catch me entirely by surprise, so I was able to choke back the obvious response, and merely asked whether he’d like a cup of tea. “No thanks,” he said. “My wife is making me one.”

He’d had brief moments of not knowing who I was before, but from that day we’d frequently have conversations where I thought he was fully engaged, only to hear him say “my wife does that” or “I must tell  Zoe that” and realise that he had no idea who I was.

Should he have had that operation? I really don’t know, but if the professionals had had a better awareness of the impact of their surgery on someone with dementia, there may have been a way to avoid the rapid decline that was so frightening for both of us. Sometimes doing nothing really is the best option.

Click here for more information on Charles Bonnet Syndrome:  Esme’s Umbrella