In the shoes of… Barbara Hodkinson | Founder of the Butterfly Scheme – 10 years on

I am delighted to publish this guest blog by Barbara Hodkinson, Founder of the Butterfly Scheme, to mark the ten year anniversary of this important contribution to personalised care for people living with dementia. I think Barbara will be thrilled to see this photo of the lovely graphic by Sandra Springett at our Whose Shoes? workshop in Sevenoaks last night which depicts how dementia friendly hospitals play a key part in creating truly dementia-friendly communities.

Sandra Springett - Dementia Friendly Communities close upAnd yes, we did manage to run a well-attended workshop on a warm summer evening… with England playing in the World Cup. We must be doing something right 😉

Barbara has written two previous guest blogs, the last one just over a year ago. I am impressed by the systematic and realistic way that Barbara is analysing improvements so far and breaking down what still needs to change into manageable chunks. Let’s hope that by 2024, and preferably long before, the four action areas that Barbara identifies in her vision at the end of the blog are embedded in everyday practice…

Butterfly Scheme reflections

Barbara Hodkinson P1000160Anyone who’s passionate about the improvement of dementia care is bound, at some stage, to have felt frustrated by the apparently slow pace of change. When you can see practical possibilities and how they can be achieved, you want them to happen now, today – and preferably by this afternoon! Like many of you, I tend to prefer to look forward, not back, but it’s worth taking a retrospective view now and then in order to acknowledge that – albeit not as quickly as we’d like – we really are making progress.

This month is significant for me because it marks the tenth anniversary of the creation of the Butterfly Scheme. Ten years ago, my mum was in hospital having a much-needed knee replacement. The operation was a great success, but that hospital stay – which extended from an expected 5-to-7 days into 22 days due entirely to inappropriate dementia care – was the catalyst which transformed six years of mystification about why the healthcare system wasn’t being tuned into the needs of people with dementia, into a determination to do what I could to make that happen.

I should point out at this stage that I had a teaching background; you’ll spot a born teacher a mile off, because they invariably try to teach their way out of every problem life throws at them! That’s why I rang the local hospital to announce that I wanted to change dementia care in hospitals and was inviting them to work with me. (I shall leave a pause here for you all to smile at my naivety).

So: please could I speak to the person in charge of dementia care at the hospital?


Erm … the person in charge of dementia care, please.

??? No, we don’t have anyone with that role

You see, to me it was obvious that someone needed to be in charge of dementia care at a hospital. Not so obvious to hospitals back then, apparently.

Lots of things I thought were obvious were far from being obvious to hospitals ten years ago – such as that anyone who met patients in the course of their work needed to be given dementia care skills.

What – all of them? No, that wouldn’t be achievable, even if it was desirable

Carers needed to have a way of providing notes about personalised care so that these notes were available to – and used by – staff caring for the patient.

No, you couldn’t have carers providing notes to be used alongside existing notes – you have to understand that these are important nursing and medical notes!

People living with dementia and their carers wanted hospital staff to know who to offer that and insightful skilled care to, so they’d like the chance to self-identify – i.e as someone living with dementia.


Actually, this was met with such incredulity that there was talk of consulting lawyers to see whether it was even permissible! I asked them to also check whether it was permissible to deny people the right to self-identify; that seemed to sort that one out.

So – how far have we come in the intervening ten years? We’ve made some fantastic progress and there are many, many examples of best practice, but let’s reconsider those questions:

Do we have someone in charge of dementia care in hospitals?

Well, do we? There may well be someone who is nominated to take a lead or an overview on dementia within the hospital, but is that the person’s permanent main role? Should it be? Typically, the leadership role is taken by someone who has a related substantive post and they take the lead on dementia alongside that. They do their day job and then, often with great passion, try to coordinate all dementia care-related progress along the way.

Now then, I’m glad we’ve got to the stage of having that leadership role, but am I alone in thinking that with such a significant proportion of hospital patients needing dementia care (or the same skilled care response as needed by people with a dementia diagnosis) this surely merits a role in its own right? Please note: a dementia lead is not necessarily the same as a dementia care lead. If we all agree there is plenty of progress we still need to make in dementia care, then that progress will require dedicated hard work and to be embedded into practice and maintained – doesn’t that sound to you like a role in its own right? With an estimated 25% of hospital patients requiring this kind of care, doesn’t that merit a dedicated role to achieve it?

What I also find very worrying indeed is the tendency to create temporary roles in order to meet the requirements of dementia-related CQUINs. The people who step forward for these roles are generally people with a passion for dementia care. They have to find their feet in their new role, plan towards achieving their initial goals, start to embed new practice and … possibly even start looking for a new job for the following year by the time they’re only halfway through this one-year post. If that’s building a better future for dementia care, I’m suggesting we’re building on sand. I find it hugely distressing to see impassioned staff being returned to their substantive posts (or looking for a job) at the end of a temporary post, knowing that the progress they’ve made is destined to slip backward – either because there is no follow-on or because the person taking the next temporary post has to start again from the beginning.

Are all patient-facing staff being given dementia care skills?

Are they? Are we really acknowledging the massive positive impact that not only qualified staff, but also domestic teams and other ancillary staff teams can deliver? Let’s presume for now that we are (although we should reflect on that one).

So, what is it that we’re trying to achieve? What are people being taught? How are they being taught? Does the person teaching them have known teaching skills? Surely, our initial aim should be to enthuse all staff about their potential role in dementia care; to enthuse people, you have to give them insight and increase their confidence by providing them with appropriate core skills. As soon as people recognise that their new-found skills are having a positive effect on patients, they have an incentive to learn more – but if we don’t prioritise enhancing their confidence in the earliest stages, they are unlikely to embrace dementia-related education in the future.

Each and every one of us knows what it’s like to witness inspiring teaching – and there’s not one of us who hasn’t also emerged from a so-called teaching session completely uninspired. Are we really giving all our hospital staff the best chances of improving their dementia care?

Do we routinely have systems in place so that carer notes inform personalised care?

The great news is that there are now large numbers of hospitals gathering carer input towards personalisation of care; that’s huge progress since ten years ago. So, is there a system in place to alert staff to the presence of that carer sheet? When carers’ hints and tips are used, we know everyone gains – but how often does that precious carer information languish unused on a cabinet? That’s not only a wasted opportunity for staff and a missed opportunity to better support the patient, but also a waste of carers’ time and – perhaps even more relevant – carers’ emotional investment in transmitting those crucial nuggets of information they so want staff to know. When carers write something for staff teams, they expect staff teams to make use of it.

I also worry greatly about leaving gaps for long answers on carer sheets, because carers trying to sum up this patient’s care needs will fill every bit of space you give them – but staff have limited time to read that information. To be useable, the information needs to be as concise as possible. It also needs to be easily-located; how easily can staff find the specific piece of information they need at any given time? It’s been very interesting to hear the results of trials of various carer sheets, where hospitals have tested up to three different versions; what’s been most interesting is that the version preferred by staff tends to also be the one preferred by carers …

Are patients self-identifying in order to receive an appropriate  care response?

My experience of the opt-in process is that virtually 100% of patients (or, where appropriate, carers) given that choice do opt to display a symbol which represents their request for a specific care response. Those who don’t are so few and far between that staff immediately become aware of the need to ensure that those patients and carers have the chance to chat about their concerns. I would never allow hospitals to simply identify patients with dementia without that opt-in; that would constitute labelling.

As I explained earlier in this blog, when I first suggested self-identification, there was incredulity – but once the scheme took off, it was soon seen to be working; great, you might say, but I fear that in some cases the message taken from that was misinterpreted. Suddenly, people linked identification with better care, but not all of them realised that it was the care response – the “Scheme” part of “Butterfly Scheme” – that improved care, not the identifier itself. I looked up “scheme” in a dictionary: the definition was “systematic arrangement in operation; plan of action”. Nowadays, we often hear the word “scheme” used alongside the name of symbols – but is there really always a scheme attached to the symbol? Identification can only ever be a means to an end, and that end should be appropriate care; identification alone doesn’t improve care and could easily have a negative impact. This is why I never allow the Butterfly symbol to be used where the care response is not taught and maintained; the symbol remains locked to its associated care response – via the scheme.

To sum up then, we’ve made great progress in certain areas and there are specific important points of principle which have moved firmly from an astonished reception into the realms of acceptance and sometimes into being embedded into practice. As long as we keep reflecting on what improvements we might now make to those new practices, we’re on a promising path.

So, what comes next?

In ten years’ time (if not earlier), I’d like to be reflecting on the following changes:

  • Dementia Care Lead posts as standard in our hospitals. 

 These would be substantive posts held by impassioned individuals who have systematically introduced enhancements to dementia care, embedded them and continued to maintain them whilst continuously seeking to further improve dementia care. Because this is their permanent role, there is continuity and a balanced, consistent approach to dementia care across the whole hospital.

  • Admiral Nurses (Dementia Specialist Nurses) being available to everyone with dementia – and therefore also to their carers. 

When specialist nursing care is provided, family carers are better able to care for longer; the person living with dementia lives better with their dementia; hospitals are avoided or, if needed, staff are supported.

  • The phrase “dementia patient” gone from our vocabulary. 

 If we use the phrase at all (and I really hope we don’t), it’ll be to describe someone who has become a patient in order to be treated for their dementia; other patients with dementia are simply that – patients who also happen to have dementia.

  • People living with dementia in care homes or in hospital being provided with activities by an activities coordinator as an essential part of their daily care. 

People living with dementia can find it extremely difficult or even impossible to self-entertain. Without positive activity, they can become anxious, or possibly enter into pursuits which may be harmful to them. The value of emotional well-being must be recognised as essential to overall health; we must be certain that we are not simply keeping people alive, but also ensuring that their life is fully-lived. I believe that we will look back, as a theoretically civilised society, and be appalled that we ever failed to achieve that.

What, only four wishes on my wish-list? No, not really – but, as ever, I like to keep aims achievable and, once achieved, select the next set of aims. Do these four aims seem achievable to you? Can we achieve them – together? I’ll hope to let you know by 2024 … at the very latest!

So we are looking forward to helping Barbara and all the other wonderful passionate #dementiachallengers to keep plugging away and building dementia-friendly hospitals and communities. Our West Kent project is flying by and the sessions are coming thick and fast – I can’t keep up with the blogs, there is now so much feedback and so many photos pouring in!

I am looking forward to next Thursday when I am going down to facilitate the final session (for now, at least!) with Ken Howard, my wonderful partner-in-crime. We only advertised it a few days ago and places are going fast so be quick if you want a place – I think there are a few left.

Diagnosed with Alzheimer’s eight years ago, Ken is living well with dementia and breaking every stereotype in the ‘Little book of dementia stereotypes’. He is a biker – and continues to enjoy riding his Harley-Davidson, which he has re-built himself.
“Wow!” , I hear you saying… 😉

We have a new game – the #dementiachallengers’ version of “Where’s Wally”… Can you spot Ken?

About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives.
This entry was posted in Blogs, community engagement, compassion, dementia, education, Guest blog, personalisation, well-being and tagged , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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