Death and dying, not a laughing matter?

In my household this weekend we’ve been talking about what music we’d like at our respective funerals – we’ve even discussed that if we were to die during this pandemic it’s more likely that it would be a memorial service at some point in the future, because funerals can’t take place the way we’d like right now. I haven’t had such a good laugh in weeks!

Like many others, the current situation has made us consider our own mortality, and it’s obviously no laughing matter. On the other hand, why not inject a bit of humour into the conversation, if it helps us tackle what can be a very uncomfortable subject? (Besides which, having a laugh is apparently one of the best things we can do for our health!)

It won’t surprise you to hear that, as editor of the recently published My Future Care Handbook, I do actually have a power of attorney appointed, my will is written, I have a Mycarematters profile, an advance statement and an advance directive all in place. It would have been a bit odd not to have practised what I preach but I have to confess, it was done as much in the name of research as for the need to have these things in place.

But having gone through the process, there is something extremely comforting about knowing that my partner and daughters will not have the stress of trying to decide what I would have wanted, either before or after my death. I’d like to think it is a long way off, and I may well change my mind about some of the decisions I’ve made but that’s OK, it’s easy to do that now that I’m familiar with the various documents.

What I highlight in the Handbook is that there is no need to tackle it all in one go, but it’s never too soon to make a start. And if you are living with a life limiting illness like dementia or caring for someone who is, there are some tasks like appointing a power of attorney that can make a huge difference in helping life run smoothly in the future.

Whilst we laughed at some of our more extreme choices of funeral music I’m not going to pretend that talking about death is all fun, and I recognise that some people find it more difficult than others, that’s just the way of things. If you wish to start thinking about this, for yourself or a member of family, find a way that works for you. Perhaps it’s talking about what’s on your bucket list, or who’s going to feed the pets if you have an unexpected stay in hospital.

There are lots of decisions you can make regarding your future without a healthcare professional, but some, such as when it might be appropriate to reject further treatment or your preferred place to die, may need a conversation with someone such as your GP.

We all know GPs are busy people and never more so than now (though their current challenge is generally more about their numbers being depleted due to the need to self-isolate) but you can help them by thinking through the issues first and then call them for their professional advice and support. Face to face consultations are rare at the moment and it is difficult to have a wideranging discussion over the phone, but even addressing one or two key issues can lead to improved peace of mind for you and your family.

Order a printed copy of the Handbook here: https://www.carechartsuk.co.uk/store/myfuturecare/my-future-care-handbook/

The My Future Care Handbook is published by Mycarematters 2020 CIC, a not-for-profit social enterprise. 100% of any profit made is re-invested into developing and delivering services and products to help improve people’s experience of care.

This blog was written by Zoe Harris, carer for her late husband Geoff who lived with dementia, creator of the Remember-I’m-Me Care Charts, Mycarematters and editor of the My Future Care Handbook.

Report highlights person-centred care as key factor in treating depression

A joint report from the British Geriatrics Society and the Royal College of Psychiatrists has been published which showcases examples of best practice. The illustrations flow from effective interdisciplinary practice in treating depression in older people living in care homes.

The aim of the ‘Depression among older people living in care homes’ report is to explore the ways in which geriatricians, old age psychiatrists and allied health professionals are working together to overcome the specific challenges that arise when treating depression in older people living in this community.

Access the full report here…

What causes that frightening world of hallucinations?

Judith Pott’s mother, Esme, was terrified that the faceless people who sat on her sofa and the gargoyle-like creature that hopped from table to chair meant she had some form of mental illness. Neither her GP nor her optometrist had ever heard of Charles Bonnet Syndrome (CBS)…

Judith explains:

Charles Bonnet Syndrome (CBS) is a serious side-effect of sight loss. In a person of any age who has lost over 60% of vision (which is halfway down the optometrist’s chart) from any eye disease, stroke, cancer, diabetes or accident, it produces vivid, silent, visual hallucinations which range from disturbing to terrifying.

For far too long, ophthalmologists have been well aware of CBS but have dismissed it too lightly and not warned patients that it might develop.  It might not, but forewarned is forearmed and should a giant rat scurry across the floor, it helps a little to know that this is probably due to CBS.

No one warned my late Mother – Esme – and she, like so many before and after her, lived in silence in her frightening world of hallucinations, fearing that they might be due to a mental illness. When she did, finally, break her silence and described to me the faceless people who sat on her sofa, the tear-stained Victorian street-child who followed her everywhere and the hideous gargoyle-like creature who hopped from table to chair – plus the times when the whole room or garden morphed into somewhere completely different – I was conscious of the word ‘dementia’ hanging in the air.

With a huge piece of luck, I read a tiny paragraph in a newspaper, which could have been written by Esme. With great relief, I contacted her ophthalmologist – who refused to discuss CBS; her GP who had never heard of it – and thought it ‘unlikely’; and her optometrist – who was equally unaware of the condition. The internet seemed to be the only answer and there I found Dr Dominic ffytche at King’s College London who was – and still is – the sole globally acknowledged expert on CBS.  He explained to me that when sight is diminished or lost, the messages from the retina to the brain slow or stop but the brain – instead of quietening down – fires up and produces images of its own.  What is seen – people, children, animals, insects, rodents, vehicles, grotesque faces, landscapes, fire, water, patterns, colours, whole scenes – depends on which part of the brain is firing.  He helped me to work out some coping strategies for Esme, which – along with reassurance – are the only treatments available.  The strategies give temporary relief but, for the rest of her life, Esme was plagued by hallucinations. As yet, there are no medical consultants who specialise in CBS.

It was obvious that awareness of CBS and the negative affect it has on the lives of those who experience it needed a wider audience.  In November 2015 I launched Esme’s Umbrella(www.charlesbonnetsyndrome.uk) at the House of Commons, with Dr Dominic ffytche as my medical adviser.  It became apparent immediately that there were many more people in need of support than anyone had realised and my newly founded campaign was inundated with calls to the Helpline – 0345 051 3925 (which is answered, courtesy of The Help and Information Service, 24 hours a day every day) and emails (esmesumbrella@gmail.com). We now estimate that there could be up to three quarters of a million people living with CBS.

The calls and emails continue at an escalating rate and, last year, Esme’s Umbrella made some giant strides.  First of all, Fight for Sight (the only UK eye charity that does research into every eye condition) offered me a Restricted Fund under its auspices.  Donations can be made via Just Giving (https://www.justgiving.com/fundraising/EsmesUmbrella or by cheque, written to Fight for Sight with FOR ESME’S UMBRELLA on the back and sent to Fight for Sight, 18 Mansell Street, London E1 8AA.  All the money is guaranteed to be spent on CBS research only.

With the financial help of Fight for Sight and The Thomas Pocklington Trust, I was able to appoint a researcher.  Dr Greg Elder will work with Dr John-Paul Taylor (whose focus is already on CBS) at Newcastle University, both in conjunction with Dr Dominic ffytche, who continues his work at King’s London.

Esme’s Umbrella was given an official CBS Awareness Day on which Dr ffytche and I met a group of 40 people with CBS and heard their support needs. Out of this meeting came my mission for 2018, which is to find funders or sponsors willing to offer space and time, for Esme Room Support Groups. Eventually, I would like to include specialist nurses, counsellors and relaxation therapists too. Exchanging experiences over a cup of tea helps the isolation CBS causes.

Consultants at Moorfields Eye Hospital will host the first-ever CBS Patient Study Day in 2018.  This will bring CBS into the open as never before and no one will be able to dismiss it as ‘just a side effect’.

Lastly, at the invitation of the President of the Royal College of Ophthalmologists, I have been invited to speak at the Royal College’s Congress in Liverpool in May. I will be emphasising the need to give a warning about CBS  and encourage patients to confide about their hallucinations.

If you need support, please do not live in silence, contact Esme’s Umbrella.

                                                            JUDITH POTTS – Founder of Esme’s Umbrella

Please Tell Me… a new Life Story book

We are often told that nothing can beat our Care Charts for getting information in front of everyone interacting with a person, but that’s not to say the learning should stop there. Our charts provide a snap-shot, at-a-glance view of a person’s needs and preferences, but should not be thought of as a replacement for life story work.
Regardless of whether it is family or staff members who spend time with a person to collect their memories and what matters to them now, the process can be extremely rewarding for both parties. And that information can of course help carers provide personalised and appropriate care, either in someone’s home or in a care home.
So we were very excited to see John’s Campaign new book Please Tell Me… a place to help someone share a childhood memory, the words of a favourite song, what made them happy in their early years. It is designed to follow the chronology of the person’s life, and the open questions provide opportunities for conversations.

Available as single books or in packs of 10. Click here to purchase…

 

Care Homes can now join John’s Campaign

Why should care homes join John’s Campaign?

by Julia Jones, co-founder of John’s Campaign

It’s a perfectly reasonable question – John’s Campaign started as a campaign for carer access to people with dementia in the acute hospital sector. My friend Nicci Gerrard’s father, Dr John Gerrard, had been living well with Alzheimer’s for almost ten years when he was admitted to hospital to have treatment for his leg ulcers. It was a hospital with old-fashioned restricted visiting hours, which were further curtailed by a noro-virus outbreak elsewhere in the hospital and a knee-jerk “no visitors” restriction.  He went in, “strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house”. No one realised how his family support had helped him maintain these abilities. So no-one challenged the visiting restriction. No-one in the hospital though it odd that Dr Gerrard was simply lying in bed, passive, bewildered, almost certainly in a dangerous state of hypo-delirium because no-one in the hospital knew that he wasn’t always like that. They didn’t realise he could have been enjoying poetry or a game of chess. There were no rehabilitation beds available so they decided to keep him in hospital for longer.

Five weeks later Nicci and her family got their father home: “skeletal, incontinent, immobile, incoherent.”  He barely knew those around him and required 24 hour care for the rest of his life.  “Would we have left one of our children un-visited in hospital for 5 weeks?” Nicci and I asked one another. And so, after Dr Gerrard’s death in November 2014, John’s Campaign was born, insisting that the family carers of people with dementia should be welcome in hospital at any time.  Not just allowed but welcomed, 24/7 if necessary. Family carers (whether or not they are actually “family”) have a wealth of knowledge to share on behalf of the person who is no longer able to communicate reliably for him or herself. They are an essential part of that person’s team.

Superficially the situation in residential care feels quite different. Very often someone is moving into a home because they can no longer manage in the community, even with the help of their family. Family may be exhausted, despairing, guilt-wracked. Perhaps it seems kind to wave them away “Don’t worry, we’ll take it from here. You go home and take a break. We’ll let you know how s/he gets on.”

Alternatively you could think that families and friends are needed more than ever – but they are needed differently. They are needed to share information about the new resident, they are needed to maintain his or her sense of self-worth, to reassure them that they are still loved, they have not been abandoned. They are needed to bring “familiarity” to these strange surroundings. And, ideally, the shared responsibility with the care home can offer family members a chance to rediscover quality in a relationship that may have been damaged by illness, stress and tiredness.

I can imagine a care home manager sighing with exasperation at this point. “All this is true but we can’t MAKE the families come. There’s nothing stopping them but they just don’t bother!”

That’s a very good reason to join John’s Campaign.  Be part of a national movement,  put a certificate in the hall, write a letter to your families, and tell them that you’ve done this thing because they matter, you need them, their relative needs them, they need to stay part of the team. Families are the “third force” in residential care.

You can only join John’s Campaign if you know you welcome families at any time (with all sensible security arrangements, obviously). Then pledge your welcome in 50 words or less either by using the John’s Campaign pledge page or by emailing julia-jones@talk21.com .  You’ll be added to the Observer newspaper national list and to the interactive map on our website www.johnscampaign.org.uk

 

The Mental Capacity Act explained

Mental Capacity Act Guide

We were delighted to be invited by SITRA to collaborate, together with Carers Trust, on a new Guide to the Mental Capacity Act, funded by the Department of Health.

It has been specifically designed to support carers of people with dementia and was shaped by input from individual carers, carers groups, professionals and specialist support groups.

The Guide contains advice and support for carers in supporting those they are caring for to make decisions, or when they have to make decisions on their behalf, and gives useful information on when and how to get support and when to involve other people as well as on ‘best interest’ decisions and Lasting Power of Attorney.

It also contains a diary section to record key decisions or events.

“Wonderfully laid out for harassed carers to quickly navigate through.” Family carer

“I have found it such a useful tool to give to care workers as part of their MCA training.” Healthcare trainer

Click here to download a copy of the Guide.

Should you wish to place a bulk order please email enquiries@carechartsuk.co.uk .or call 01403 210485.

Introducing Mycarematters…

Mycarematters

It’s already been an exciting year for Care Charts UK, seeing the adoption of our Remember-I’m-Me Care Charts by hundreds more care homes and hospitals, and receiving lots of positive feedback about the beneficial impact achieved by these simple, cost-effective tools.

We’ve also made a start on a range of products to help with the care of people living 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 haven’t already done so.)

But there’s more to be done. I’ve been conscious for a while, now that we are working with increasing numbers of hospitals, of the difficulties faced by staff in collecting the information to go on a Care Chart. A number of hours, even days, might pass before nursing staff can build up a picture of the issues that matter to a person if they are unable to communicate these things for themselves. Even in that short time a person living with dementia might suffer trauma and discomfort purely because the information isn’t reliably available which would enable staff to allay concerns, meet a person’s dietary needs or understand what might look like inexplicable behaviour.

There is increased understanding of the value in treating the whole person to improve overall outcomes, and the power of Care Charts lies in providing quick, easy and reliable access to a person’s needs and preferences to assist in that aim. However, research suggests that nursing staff spend an average of 100 minutes per patient trying to collect the information that will help them provide that person-centred care.mycaredata note

So a few months ago I had one of those exciting lightbulb moments, with an idea that just seems so obvious I can’t believe it’s not already out there (not unlike my experience when I developed the first Care Chart for my husband Geoff). If we could provide a secure place online for people to upload their non-medical information, it could be made immediately available to all healthcare staff, cutting that 100 minutes by more than 90% and immediately improving the potential for better outcomes for both staff and patients.

In that moment Mycarematters was born, and in true ‘JFDI’ style (so often referred to by my friend Gill Phillips of @WhoseShoes’ fame), we’re about to start building the platform.

I want to reiterate the point that this is not about medical notes; there are others working on ambitious projects to digitise those, and they face many challenges. Mycaredata will focus instead on details like preferred foods and drinks, what assistance is required for a person’s mobility, why a particular routine is important and any other issues that matter to a person: reassurance for example that their pet is being cared for whilst they are in hospital, or that they need assistance to eat.

Uploading the information will be simple and straightforward, guided by a series of prompts, and it will be a quick and easy process for hospital staff to access it. We’ll be making use of the best encryption and data security software to protect the data (talktalk IT staff need not apply!) and the best news is that we’re going to try and keep it free for both individuals and hospitals.

If you would like to follow our progress you can do so at www.mycarematters.org and/or comment on any aspect of the project at info@mycarematters.org. I’m sure the end product will be quite different to what I was envisaging when I scribbled that first note to myself, but the aspiration won’t change: to improve the experience of a hospital visit for those people who struggle to communicate their needs, thereby improving their outcomes as well as those of the staff and of the NHS.

Supported by

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Founder awarded grant for product development

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We were delighted to hear that our founder Zoe Harris has been selected as one of 29 social entrepreneurs to receive funding from UnLtd as part of the The Coutts Foundation Solutions for an Ageing Society programme.

The competition was fierce, with the final group selected from over 250 applicants, and what clinched it for Zoe was the simplicity of her solutions, and her clear vision of what she could achieve with the grant on offer.

“The judges immediately ‘got’ the charts, and liked the fact that we have evidence to demonstrate they really do make a difference in a wide range of caring environments,” explained Zoe. “They also understood the need to address the communication issues people face when being cared for in their own homes.”

“The Fast Growth Awards are our opportunity to recognise people with brilliant solutions to the social problems we face as a nation,” said Cliff Prior, CEO at UnLtd. “Together with our partners, we help them scale nationally and internationally for greater social impact. We’re excited to see such a diverse group of entrepreneurs this year, tackling problems in a huge variety of sectors, and we look forward to supporting them as they scale over the coming year.”

This funding allows Care Charts UK to get cracking on a five part project to bring a range of home care communication tools to market. First stage is a questionnaire, where we want to collect the opinions and thoughts of carers who have been or are caring for someone in their own home (whether paid or unpaid), as well as from those who have been or are being cared for. Second stage will be a focus group brainstorming the ideas collected. Third stage will be developing prototypes to trial, fourth will be to conduct trials and adapt designs as required, and the fifth stage will be to make the range available nationwide.

This is a link to the questionnaire, which we would very much like all carers, both paid and unpaid, and those being cared for, to complete: https://www.surveymonkey.com/r/CCUKhomecare.

Care Charts UK Founder named as one of HSJ’s Innovators 2014

Care Charts UK’s Founder Zoe Harris is delighted to have been included in HSJ’s list of Top Innovators 2014, celebrating ‘those working in the NHS and the wider healthcare sector who have taken innovative approaches that make a tangible difference to patients, their colleagues or wider society’.

The judges worked around some broad criteria: significance, or how big the problem solved has been; impact, or what difference the innovation has made and to what extent it has worked to change things; and support, or how the innovation has fostered and led to other innovation and how it has given inspiration to others.

What the judges said: “In response to her and husband’s experiences, Zoe has invented a great product which is now used by lots of hospitals and care homes.”

Alastair McLellan, Editor of HSJ, said “Our list, we’re pleased to say, is diverse, encompassing everything from top-flight clinicians at the leading edge of their research fields through to frontline staff, patients, managers and simply free-thinking spirits, from within and outside the NHS, who have brought their imagination and creativity to bear. It shows how, for all the NHS can be at times big, unwieldy and bureaucratic, it should be applauded for still allowing space for innovation and “blue sky” thinking…”

Click here for the full list of HSJ Innovators 2014.