Moving is good for us, even with a serious diagnosis

Founders of The Exercise Clinic, Emily Curtis and Chris Cottrell, share a passion for exercise and its health benefits for people who are living with cancer.

Chris was diagnosed with an aggressive form of prostate cancer in 2011. Quite early on he was encouraged to start a structured exercise programme, at which point his PSA progression slowed enough for him not to require further treatment for the next two years.

He has continued to exercise and firmly believes that structured resistance training and cardiovascular exercise has had a positive impact on the management of his disease and the side effects of treatment. He would go so far as to say that exercise has not only been life changing, but life saving as well.

Emily has been working as a clinical exercise specialist since gaining a BSc in Exercise and Sports Sciences from the University of Exeter, leading exercise training sessions for individuals diagnosed with cancer and cardiac disease.

The combination of Chris’ and Emily’s experience has given them a unique understanding of the challenges faced by people living with cancer and their families, and how exercise can be coached and monitored for maximum benefit.

Emily met Chris whilst working in a specialist cardiac rehabilitation centre, which was branching out to work with other clinical conditions, most significantly within cancer. They worked together for a period at the clinic and, and then set up the Exercise Clinic in 2016.

Because of Chris’s direct experience, they focused on prostate cancer. They wanted more people to have access to safe, effective exercise and long term holistic support that enables people to engage with safe, effective exercise over a long period of time. For all of us, what makes a real difference is challenging, or stressing, your body appropriately, over a long time. So it’s really a little bit, often and over a long period that makes a real difference with regard to health outcomes.

They became involved in a research project with the Royal Marsden which then led on to them running their own pilot with the hospital.

They were gathering evidence from participants as to what elements they found engaging, what really helped them. Prostate cancer was the main route of referral, but many of the people they saw had multiple clinical conditions: arthritis, hypertension, and cardiac issues as well.

Everyone reported how much more energetic it made them feel, how it improved their mood, how well they’re moving, their ability to function, to do daily tasks. The programme was highly praised by participants, who valued the virtual delivery, behavioural support and peer support elements. Self-reported improvements in physical, psychological and social wellbeing were substantiated by preserved scores in quality of life, wellbeing, activity levels, waist circumference and physical performance.

For Chris, exercise has become what he regards as being a vital component to his cancer treatment. Exercise helps him to focus in terms of what he can do to help himself because he knows it is helping. He is less focused on his next blood test or the next result of a scan, which helps him both physically and mentally.

The first thing Emily stresses is the importance of long term engagement: enjoying it and finding ways that are helpful for you to adhere to some form of exercise regime is important. For some people that might be doing more walking and keeping track. For others, it might be gardening with friends, or going to the gym and having a more structured approach. Finding something that you enjoy is really important, and some way to either track or monitor that or work with others to help you keep that going.

They encourage people to do up to 150 minutes of cardiovascular exercise a week and try and do some strength exercise on at least two days a week which is consistent with the national guidelines.

When people are a bit older there might be some other goals that they have in mind, it may be more about moving well through good range, good mobility, and testing your balance and coordination in certain positions.

They have experience of working with people with quite extensive disease that might be within their bones or spine, so they’re very careful around things like impact and certain extreme motions  like flexing and extension of the spine, It is about educating people about those things so that they feel empowered to know or can start to identify where their right level is for exercise.

All exercise was originally delivered face to face until COVID came along, and they moved online. They’ve largely stayed online because they found that you can reach a greater number of people who don’t have to pay to get to the gym or to get to the fitness centre or the local village hall, making it more convenient for them. The whole Marsden programme over the last three years was entirely online.

It means there really is no physical barrier, providing you can use a computer or a laptop, or even a mobile phone (though a larger screen is better, because you can see better, and they can see you). You don’t need to spend lots of money on equipment, people join with either no or minimum equipment.

They found that once people get through the door, their fears and inhibitions just disappear virtually immediately. And at the end of the first session they say how valuable it was, and how they are looking forward to coming back next week.

When the pilot project with the Royal Marsden came to an end, a lot of people wanted to carry on. So they set up Muscles Count, group exercise sessions that they run Monday and Friday afternoons, and Emily produces a video every week for people to access online.

Chris has been working with Emily as a client for the best part of 10 years, as have others. As he says, once people realise the importance and see the benefit that they’re getting from this, they’re reluctant to give it up, because it’s doing them so much good, both physically and mentally.

They are very open to having an initial conversation if people want to talk things through and just want a bit of advice. Get in touch by email or phone.

The Exercise Clinic Ltd – https://theexerciseclinic.co.uk/

Tel: 07437 518907   Email: emily@theexerciseclinic.co.uk

This article is an extract from a conversation we had with Chris and Emily. The full recording and edited transcript has been sent to members of the My Future Care Community. For further information on how to join the Community email info@mycarematters.org.

Supporting Sandwell to provide ‘priceless advice’

Each month we pay a visit to one of our trained Buddies to find out how the My Future Care Buddy Service is helping them make a difference in the lives of the people they support.

This month we spoke to Deb Pierson from Thinking Differently About Dementia, a 3-year National Lottery funded project delivered by Agewell and Dementia Pathfinders, which provides community support for people in Sandwell with mild or moderate dementia and their family carers.

What kind of support does Thinking Differently About Dementia provide?

We support people in their own homes on a one-to-one basis as well as at our two meeting centres, our DEEP group and our DeCafe. All these settings provide a safe and supportive place for people who are in the same boat.

At our meeting centres, people with dementia can enjoy the company of others and join in with a programme of physical, social, creative and cognitive activities.

At our DEEP group we support equal opportunities for all voices to speak and be heard on what matters to them. Our DeCafe is a relaxed café for people with dementia, family and friends to come together for lots of chatting, advice and fun and games.

How is the My Future Care Buddy Service helping you to meet people’s needs? 
I have held several sessions at a local extra care facility where I gave a presentation and shared insights about the My Future Care Handbook.

I have also provided a number of one to one sessions with the family members of people living with dementia using the Handbook as a guide.

What difference is the My Future Care Buddy Service making?

These are words of a lady I supported, whose father has Alzheimer’s and vascular dementia.

“I was approached by Deb and invited to look at the My Future Care Handbook. I had a couple of sessions with Deb where she gave me priceless advice on how to fill it in with my Dad.

“Over a period of time, when my Dad was having brighter days, we went through it together. Some of it I found daunting and if I’m honest I didn’t like some of his answers as I would not have made the same choices, but they were my father’s answers and reflected what he wanted. I learned a lot. We persevered and worked through the book.

“Not long after the book was filled in, Dad was taken ill and hospitalised and then had to have 24 hour nursing care in a residential home. I was devastated and overwhelmed by the questions that needed to be answered.

“All of the answers were in the My Future Care Handbook. I let the hospital and then the care home copy the book so they had full access to my Dad’s likes, dislikes and wishes. The book let them know who my Dad is. It’s been a godsend. “Having this book has taken away the difficult choices and the pressure of
remembering all of his likes/dislikes/preferences etc. It covers everything everyone needs to know.”

Thank you Deb for sharing your experience and this powerful story! 

 

Choice, control and planning: a conversation about death and dying

I am acutely conscious of how precious time is for Wendy Mitchell, so I was already grateful to her for taking the time to speak to me about her thoughts on death and dying recently. I feel even more so now, having seen the unbelievably busy schedule she has got, promoting what she describes as her final book: One Last Thing: How to live with the end in mind. My copy arrived the day we spoke so I did not have a chance to read it beforehand but I already knew, from our previous conversations during my research for the My Future Care Handbook, that she was an ardent supporter of not only making plans for later and end of life but also of talking about it with the important people in your life, in her case her two daughters.

For those who may not know, Wendy received a dementia diagnosis at 58, almost nine years ago, and has spent her time ever since raising awareness of the disease and demonstrating first hand how there is life after a diagnosis. She has given hope to thousands who were allowed to believe their life was effectively over. Admittedly, the majority will not have gone sky diving, wing walking or abseiling or written two (three?) Sunday Times best sellers to prove the point, but Wendy, together with organisations like Deep, have highlighted to a worldwide audience how people living with dementia can continue to play full and active roles in society, with the right support.

Nevertheless, Wendy is well aware that dementia will catch up eventually. She tells me her bad days are becoming more frequent, hence my reference to time being precious, though I know she agrees we should ALL be living life on the basis that each and every moment is precious and not to be taken for granted. Whether or not we are living with a life limiting disease we are all going to die eventually, we just don’t know how or when. “Doctors would remind me that dementia is progressive,” says Wendy, “but nobody knows in life what’s going to happen – life itself is progressive – so you’ve got to live for every day.” And when the day comes, as Wendy says, “the more we have been able to plan and share our wishes, the more chance we have of a better death”.

When researching their book, Wendy and her co-author Anna Wharton interviewed, amongst many others, a man who was proud to tell them that he had all his paperwork in order. “He’d completed everything, everything you could think of, he was so pleased with himself. And the one thing we said at the end was, so what do your sons think? And he hadn’t told them. He never even thought of it. He thought by doing all the paperwork, that was enough… it was a light bulb moment for him… you could see his mind working: ‘Yes, I must. Why haven’t I done that?’

Picture the scene…

Doctor: I see your father has given you power of attorney. As you know, that gives you the authority to speak on his behalf. He has reached the point in his care where I’m not sure that further treatment is necessarily in his best interests. What would he want us to do?

Son: Er, I have no idea, we never talked about it.

“That’s what we need to get over to people,” Wendy continued, “it’s no good completing all the masses of paperwork if you don’t have a conversation… I thought the book would be getting people to talk about death, but actually it’s getting people to just have a conversation.”

Of course, both are important, as Wendy says: “you really cannot have one without the other.” The man in question might have written in full detail what his wishes were in such circumstances, and I would be the first to highlight the importance of putting your wishes in writing; people’s memories of conversations can differ, a conversation on its own is not enough. However, the paperwork on its own is not enough either, if you expect loved ones to understand and respect your wishes. As Wendy says, “the greatest gift you can give your children is to talk about the future and death.” A conversation is a two way thing, those speaking on your behalf and eventually left to settle your affairs should have a say in this too. You may not want a funeral, but should you not take into account what they might get out of a ‘good send-off’?

During our conversation we touched on the realities for people without family members to advocate on their behalf. Whilst there is no magic solution, we did agree that in these circumstances, writing down your wishes and ensuring they are available to any healthcare professional supporting you is just as – perhaps even more – vital.

It is of course no surprise that how to have a good death is increasingly on Wendy’s mind but I had not previously appreciated how strongly she felt about having the right to choose when we die. It is telling that the longest section in Wendy’s book, and the topic to which we kept returning when we spoke, is on assisted dying.

“The matter of quality of life is so individual; it always comes back to choice.” Wendy’s deal breakers, the things that for her make life worth living, are mainly physical: going for long walks, taking photographs, typing and of course her two daughters. She has already made it clear that she is not to be admitted to hospital under any circumstances, even if it risks shortening her life.

Wendy and Anna present a thorough scrutiny of the varying attitudes, laws and options available to people in different countries regarding assisted dying and it is difficult to argue with Wendy’s position that ultimately it should come down to personal choice. It also seems obvious that we should be listening very closely to those people living with a life limiting diagnosis; death is far more real to them than to those of us for whom it is an abstract event that will happen at some unknown time in the hopefully far distant future.

There is so much more in Wendy’s book that I want to explore further… about identity: are we the same person when we are deemed to have lost capacity through a condition like dementia, in other words should the choices we make prior to losing capacity take priority over anything we may indicate to be our wish subsequently? About control and choice: we want control over, and choice in, our lives, but how far can that go: we can’t control whether or not we die but should it be acceptable for people with a terminal diagnosis to choose and control when, with medical support?

Lots to mull over. One Last Thing is an informative, at times heartbreaking yet hopeful read, and a book I shall be returning to for top-ups of Wendy’s clarity, wisdom and honesty.

One Last Thing is available from:

The Book Room https://thebookroom.uk/product/one-last-thing/

Waterstones https://www.waterstones.com/book/one-last-thing/wendy-mitchell/9781526658753

Amazon https://www.amazon.co.uk/s?k=one+last+thing+wendy+mitchell&crid=1M0OBSAWWPM45&sprefix=One+Last+Thing%2Caps%2C139&ref=nb_sb_ss_ts-doa-p_1_14

Plus other book stores.

And the ‘great resource’ Wendy mentions (thanks Wendy!): My Future Care Handbook can be purchased here:

 

 

 

 

Overcoming reluctance to talk about the future

Every month we run an online Buddy Support session where we discuss a specific topic, sometimes with specialist speakers, to further strengthen our knowledge and to share our learning and experience. We tend to record any speakers for those who can’t attend to watch later, but not the discussion so people can feel relaxed about participating fully in a safe space. These sessions are open to anyone who has completed our My Future Care Buddy training.*

In May our topic was how to encourage people to do some later life planning when they are reluctant to do so. Nancy has had a lot of experience of this as our most experienced Buddy and she shared some of her experiences and how she saw people, initially reluctant and unconvinced of the value or relevance to them, go on to fully embrace the project. I spoke about some of what I’d learned during the five years I have been researching this topic and we had a rich and constructive conversation amongst our attendees.

These are some of the points that came out of the discussion…

  • Don’t think about the conversation you want to have as being about dying well, but living well. It immediately becomes a whole lot easier if the focus is on things that allow a person to live their best life possible.
  • Start small. Think grab handles not funeral plan. If someone has made it clear they don’t want to talk about or make plans for their future, it is not unreasonable to ask if they have left a spare house key with someone in case something unexpected happens. Find something that is easily achieved, is relevant to them and might offer a stepping stone to other topics.
  • Pick the right time and place, though this might require a bit of creative manoeuvring if the right time and place prove so elusive the conversation looks unlikely ever to happen!
  • Be curious – read between the lines, try to understand what it is that is not being said. Use silence, really listen. Reluctance to plan may be a fear of the unknown, a lack of understanding of the options and decisions available.
  • Use personal experience or stories of other people’s experiences to explain why this matters to you, why you feel so strongly about the importance of making plans. Ensure that any experience or story you share is relevant and will resonate with them.
  • Talking about a stay in hospital rather than end of life might reveal a person’s preferences for their last days or hours without broaching the subject of death directly, if they find that challenging.
  • Secure their trust, find ways to demonstrate you are raising this because they will benefit from what you have to say.
  • Life story work may be a practical and gentle way to open the subject.
  • Consider whether there is someone else they might prefer to talk to, to overcome any cultural or language barriers.
  • Finally, there must always be a judgement call as to how hard you push someone to have the conversation if you have tried everything above and they are still reluctant. It is of course entirely optional as to whether a person makes plans for their later life and for some it may be so distressing that it is not in their best interests to continue pushing the subject. Having said that, we have not yet had anyone we have supported say they felt worse as a result of getting some plans in place, and most are pleasantly surprised by the sense of achievement and peace of mind gained.

*If you support people who might benefit from making plans for their later and end of life and you’d like to help them with that but feel you don’t have the skills or expertise to do so, we offer training, ongoing support and, within certain criteria, free Handbooks, providing you with a source of information and structure for the conversation. Email us for further information.

My talk at the Alzheimer’s Show March 2023

The talk I gave at the Alzheimer’s Show is available to listen to via their website but you need to pay (price includes all other talks) so for those who’d like instead to read what I had to say I have tidied up my scribbled notes and added the slides…

Hello everyone, thanks for joining me this afternoon. My name is Zoe Harris and I’m the founder of My Care Matters, a not-for-profit social enterprise with a mission to improve people’s experience of care in all care settings.

The project I am going to talk about today is our My Future Care service, supporting people to make plans for their later and end of life. I’d like to start by giving a bit of background as to how it came into being.

The inspiration for this work was my late husband Geoff who lived with dementia. I cared for Geoff for about 5 years until he had to move to a care home for what turned out to be the final 13 months of his life. During that time I saw how mistakes would happen because the people caring for him knew nothing about his needs and preferences, the things that mattered to him.

So I developed a wall chart, that went on to be called the Remember-I’m-Me Care Chart, to share the things that I knew Geoff would have talked about if he’d been able. All I was trying to do was help busy carers support Geoff, and to help them develop a relationship with him which would be impossible if they knew nothing about him. But when the care home manager saw that first chart and asked for some more for her other residents, and I realised this simple tool had the potential to help thousands of other people in a similar position to Geoff, unable to communicate and being cared for by people unaware of their needs and preferences.

Long story short, variations of that original chart have gone on to be adopted by over 1,400 care homes throughout the UK.

It also attracted the interest of hospitals but as much as I could see how vital it was to ensure a person’s needs and preferences were available to hospital staff, we needed to find a way to ensure that it was available immediately, not just when family members came in to provide the information to go on the chart.

So we developed an online tool, the Mycarematters Profile, where people can input information about themselves, or on behalf of someone they care for, and make it available to anyone with their unique Mycarematters code, name and date of birth. The reality is that printing it out has the best chance of it being seen for now, but at least if that goes missing the information can be viewed online and can of course be reprinted, also updated or amended whenever necessary.

We were trialling that concept with an NHS Trust in Cambridgeshire where they were also looking in to how to increase the number of patients with advance care plans and wanting to understand why those conversations weren’t happening. Because the two projects were running at the same time, it soon became clear that inviting someone to complete a Mycarematters Profile also helped kickstart the conversation about advance care planning. It also demonstrated that making plans for the future should not just be about preparing to die well but also how to live well. One of the questions on the Mycarematters Profile is about pets. Not knowing whether their pet is being looked after is one of the most frequent sources of stress for people who are in hospital. So it is an opportunity to ask people what plans they have in place to ensure pets are cared for during their stay in hospital. This can expand into a conversation about the other practical issues that need to be considered, for example in an emergency when the person is unable to communicate. Another question asks about the important people in a person’s life. So that is an opportunity to ask whether they might like one of those people to speak on their behalf, again if they are no longer able to communicate. In other words, would they be a suitable person to take on power of attorney.

But why does any of that matter? As one person said, when enquiring about the My Future Care service: I can just let my family decide about all those things. But is that fair?  One of the most frequent reasons people come to us for support to make their later life and end of life plans is because they’ve been put in that position by family members being expected to make decisions on their behalf, when they felt unprepared to do so, even if they have power of attorney, and they don’t want to leave their family members in that position when the time comes.

That was confirmed by research done around advance Decisions. An advance decision, full name Advance Decision to Refuse Treatment, is a legal document setting out the treatments you would not want in certain circumstances. Even if decisions have been made, they may not have been discussed with family members. Plus this concentrates on a very narrow set of questions about the circumstances in which a person might choose to refuse treatment, when a much wider conversation is needed. We need to ensure that our family members know what our wishes are, even if that conversation can be a challenging one for some or all of those involved.

So it matters because we don’t want to increase the stress our family members are already under when we are unwell. And it also matters because it can give the individual some sense of control over their future and therefore lead to improved mental wellbeing. That is something we measured when evaluating the My Future Care Service, and I’ll say a bit more about that in a minute.

But first, when is the right time to start having these conversations? There is a saying, that it is always too soon, until it’s too late. We always think we have time to sort things out, until suddenly we don’t.

 We have to remember that none of us knows what’s round the corner. I’m not sure you should be too worried about this particular scenario, but there is one thing that we can be absolutely sure of, and that is our life is going to come to an end. We may not know how or when but, as Benjamin Franklin said, “in this world, nothing is certain except death and taxes”.

There are other things we know: we know for example that we are extremely likely to have at least one hospital admission in the year before we die. But we shouldn’t be waiting for our last year of life to think about, write down and share the things that are important to us, and who’s to say whether or not we have entered that final year. You want to know that your wishes and any decisions you’ve made have been written down and discussed with the people closest to you, to avoid medical interventions you don’t want, to be cared for in your preferred place where possible, to ensure anything related to your religious beliefs is respected, and so on, so that it is there, ready for the time, temporarily or otherwise that you are unable to communicate your wishes. So whenever I am asked when is the right time to do these things there is only ever one answer I give, and that’s ‘Now’.

And yet some of us still find it incredibly difficult to make those plans, and after those trials in Cambridgeshire we went on to run some workshops and do some research to see why those conversations aren’t happening.

These were the barriers we identified:

  • Lack of clarity about options available, what it is we should actually be doing, and that goes for healthcare professionals as much as the rest of us. That was a key factor behind the reluctance of staff to initiate the conversation.
  • Confusion as to what document does what – one of the classics is understanding the difference between an advance statement and an advance decision.
  • Reluctance to discuss death and dying. As we all know, it’s not true that talking about it makes it more likely to happen. But that reluctance might be on the part of the individual, or perhaps it comes from family members.
  • The longer it’s left the more difficult it becomes, and by that I mean emotionally, it seems the closer we get to facing our own mortality the more difficult it is for some of us to acknowledge it and make plans.

The work we did with that Cambridgeshire Trust led on to a couple of years of further research on the topic of later life planning, understanding why it matters and the difference it can make.

During our research, we had found a lot of great materials both online and in printed form, but none that brought it all together.

So we produced the My Future Care Handbook, a one-stop-shop for all things related to later life. It has been described as a gentle walkthrough of the decisions we should all be thinking about, and the intention is to encourage people to think about and make decisions around their future care and end-of-life much earlier than tends to be the case.

The approach we have taken is to make it relevant even to those people who may not feel that they are ready or need to discuss later life care, so we talk as much about living as we do dying.

You can write a bucket list of all those things you still want to do, produce a play list of the music you might like to listen to if you’re unwell, it explains how to do things like writing a will and sorting out power of attorney, it includes blank Mycarematters profiles for people who don’t want to complete one online, it prompts people to have a contingency plan to ensure, as I mentioned before, their pets are looked after if they have an unexpected stay in hospital.

We use colour coding to help prioritise the tasks that may be most appropriate or urgent according to a person’s situation.

And then there’s a variety of Factsheets with tips on healthy living, the different kinds of housing and care that’s available for people in later life and we touch on financial planning as well.

By making it relevant even to those of us who have yet to recognise and face our own mortality, it encourages us to start thinking about these issues, as I say, much earlier than is normal practice.

It is deliberately a printed document as opposed to being online, which is not to say we shan’t take it online in the future, but we get lots of feedback that it’s a pleasure to have a tangible document to hold and work through. People talk about getting drawn in almost without thinking about it, we provide a pen with each Handbook, so you can just open it up and make a start. For those willing and able to use the internet we also include QR codes which take you straight to various online resources.

And then of course, just as important as the conversation itself, is recording and sharing your decisions.

My late mother had COPD and as it started to get worse she made plans. How detailed some of those plans were I wasn’t aware of until after she died, and I shall forever be grateful that she left a full list of people to inform and their contact details, and the kind of funeral she wanted, including her choice of hymns and readings and what she wanted us to do with her ashes.

The only thing she could have done better was leave those instructions in a more obvious place. She had told me she’d written it all down so I searched high and low in her flat until I finally came across some scrappy bits of paper in the back of her previous year’s diary.

So it’s really important that people not only think about these things and write down their preferences, but that they are accessible when needed! – the Handbook is full of forms and planners to help record someone’s wishes and decisions and also has advice on where documents can be stored.

But, as user friendly and easy to use as the Handbook is, even that isn’t enough to get some people to shift from a position of thinking about it to doing something about it. Lots of us are expert procrastinators, finding convincing reasons for not getting on with it, and we need a nudge.

I learned a great word for this recently: what we are doing is quiddling, busying ourselves with trivial tasks as a way of avoiding the important ones. We are all such good quiddlers!

There were lots of people who were very generous with their time and did some in-depth reviewing of the first version of the Handbook in 2020, but I noticed that many of them only made a start once we had a date in the diary to speak about it. Then there was an urgency, a deadline, that meant they needed to get on with it. They admitted they needed that nudge to open up the book and make a start. Sometimes they’d get stuck at a particular point, and I’d need to give them permission to move on, do something else, maybe come back to that later.

So that’s what inspired our Buddy Service, offering people an opportunity to have a friendly chat, via Zoom or on the phone, with a trained volunteer Buddy. We use a coaching style to help people think through plans for later life, perhaps give you the gentle nudge you need to put your thoughts into action.

Thanks to some grant funding we’re able to offer it as a free service and that includes a free copy of the Handbook. If you don’t need or want the Buddy Service you can always choose to buy a copy of the Handbook (they’re available on our website), but the funding is all about providing that extra support.

We offer up to 4 sessions by phone or video call to give the Buddy and their client an opportunity to agree an action plan and then time to see it through.

The Buddy is there to support you to identify and meet goals. Think of it as a bit like working with a personal fitness trainer. They’re not going to do the work for you, but having an appointment in the diary means it would be rude not to show up, and if you and your Buddy agree a set of actions that are going to be done before your next conversation, it’s more likely you’re going to do them!

We don’t offer advice but we can signpost to services as appropriate, when a greater level of support and advice might be necessary.

So a couple of quick case studies…

Working with John started out as a bit of a challenge. He was persuaded by his wife to have an introductory session with a Buddy but his first words were along the lines of “What’s the point?” During the session he came to realise that this wasn’t just about him but the impact it would have on his wife if he didn’t make plans and he was proud to share with his Buddy two weeks later how much he had achieved.

Yvonne lives alone and isn’t in touch with any of her family so just being able to chat about the various issues with her Buddy, as she says, took a weight off her mind.

Chris attended sessions with her husband and they were initially quite anxious about having the conversation with each other. By having a Buddy in the room so-to-speak it took the pressure off and it sounds like they had a thoroughly enjoyable time!

So we’ve had some good anecdotal feedback, but because we ask everyone to complete a questionnaire before and after using the service we have been able to measure the number of documents people have produced and also any change in their wellbeing.

Unsurprisingly, virtually everyone ends up with more decisions made and documents created than they had before using the service. You may not be able to see these so from left to right they are… funeral plans seems to be one of the topics that people are able to engage in most enthusiastically. I’m not sure we’ve worked out why that is.

The percentage of people saying they had a poor quality of life before using the Buddy service was 57% and reduced to zero after. And the percentage saying their quality of life was good increased from 7% to 43%.

And from the questions we asked that enabled us to measure people’s wellbeing, the average score went up from 48 to 78.

Good mental wellbeing is not just some fluffy nice to have outcome. Positive feelings bolster the immune system and lead to fewer cardiovascular problems, whereas anxiety and depression are linked to poorer health behaviours and other conditions such as inflammation.

But we can only support a limited number of people that way, and an online service doesn’t suit everyone. So we are working with organisations, training their staff or volunteers as My Future Care Buddies so they can support their clients themselves. The Handbook means they don’t have to become advance care planning experts, and they’re free to provide that support in whatever way suits them best, whether that is running group sessions, drop-ins or 121 meetings.

So we currently have funding to provide free online training, free Handbooks and free access to our ongoing Buddy Support Programme to small organisations and groups, and we ask larger organisations to buy the Handbooks and we have the option of more in-depth face-to-face training as well.

They say knowledge is power. Informing ourselves of the options available to us and making some decisions can give us power and a sense of control over events in the future when we may have lost the capacity to speak for ourselves.

We’re also going to enable the professionals caring for us to do their best to give us the kind of end of life we want, and reduce some of the stress our family members might otherwise feel, not knowing what we would have wanted.

I’d like to leave the last word to Dr Lucy Pollock who has written a book I highly recommend, called The Book About Getting Older. This is just one of the pearls of wisdom to be found in the book: “When these questions are kept locked away they weigh us down with unhappiness, anxiety and anger. Bring them into the light instead, and we can discover reassurance and new-found confidence.”

The My Future Care Story… so far

It’s Dying Matters Awareness Week so it seems like a good time to take stock… and not for the first time in my life am I looking back and saying, I didn’t expect to do that! I suspect a lot of people can say the same, having started out with one idea and ending up with something entirely different.

This time it is the My Future Care Handbook and Buddy Service. In 2018 we received a small grant to develop what we thought would be an advance care planning (ACP) toolkit for non-specialist healthcare professionals. Not specifically to add to the paperwork and forms already out there – there are plenty of those – but to encourage people to initiate the conversation by strengthening their skills and knowledge. One of the barriers to people creating advance care plans, we had discovered, was a general uncertainty amongst non-specialist staff as to what ACP entailed.

But two years, numerous workshops, surveys and interviews later it seemed much more important to put the information in the hands of the individual, give them an understanding of the options available to them and encourage them to take the lead.

We’re the experts on our own lives, after all, so why expect a professional to take the lead on something we know best, when all we need is an understanding of the options and decisions available to us?

So we produced a resource that talks as much about living as it does about dying, eliminating the ageist aspect of later life planning (every adult should at least understand what their options are and preferably have things like a will and power of attorney in place – none of us knows what’s round the corner) and making it relevant for people who think a conversation about death and dying has no relevance for them.

The My Future Care Handbook has received some wonderful endorsements, like this one from Wendy Mitchell…

“I found the Handbook very easy to follow, in a logical order and it covered everything… People in the earlier stages of planning should find this to be exceptionally informative and a prompt for useful guidance and discussion.” Wendy Mitchell, best selling author of 3 books on living with dementia.

… but as easy to use and straightforward as it is, even the Handbook isn’t enough to shift some people from thinking about it to doing something about it. Lots of us need encouragement and support to think through our options, to have an initial conversation – not necessarily with a family member, and then a nudge to get on and put plans in place.

So we developed the My Future Care Buddy Service, partnering people with trained volunteers to create an action plan and see it through. This being 2020/21 with covid virtually eliminating any scope for face-to-face support, our only real option was to speak with people by phone or video call. Thanks to further grant funding we were able to provide this as a free service, offering people up to 4 sessions of up to an hour each, to think through their options, develop an action plan and see it through.

The huge amount of positive feedback we’ve received makes me think we’re on the right track…

“It was very good to have these discussions, to air out thoughts and discuss the positive planning that can be done.”

“I don’t have any family or anyone else to talk to about this so it was really nice to chat it through with you, thank you so much, you have taken a weight off my mind.”

“It brought up a lot of things I wasn’t aware we needed to do. I thought we had already taken care of everything. After working through this with you, I think we can say, we’ve got most of things done now!”

“It’s given us peace of mind. Thank you for making this easier than we expected. It was nice that we were able to laugh and share stories with you and not make it all so serious.”

… but we were only ever going to be able to support a relatively small number of people with our own volunteers, so the next obvious evolution of the My Future Care service was to train staff and volunteers of other organisations, whose members / patients / clients might wish to make plans for later and end of life.

Again, grants have enabled us, within certain criteria and geographical areas, to provide the training free, plus free Handbooks for the trainees and the people they go on to support. And we have partnered larger projects like the Thinking Differently About Dementia project in Sandwell and provided face-to-face training for their Dementia Navigators and Advisers to use the Handbook as part of the support they are providing to their community.

We are not prescriptive as to how support is given, merely that people are not given Handbooks and told to go away and get on with it. Experience has shown most of us need more support than that to get things done. But whether organisations offer one-to-one support like Selsey Community Forum, run groups like Broadstairs Town Shed or a hybrid of the two, we are facilitating an exponential increase in conversations and decision-making around later life, death and dying by enabling non-specialist staff and volunteers to initiate the conversation, using the Handbook as a source of information and structure for the conversation.

Attendees have found the My Future Care Buddy Training useful, enjoyable and thought provoking…

“Loved being able to share and learn from others from different backgrounds/groups.”

“The number of attendees was just right to create that safe and cohesive space where we felt able to share and discuss ideas and concerns. Nancy is a consummate facilitator by creating flow and progression whilst allowing for input and exploring of ideas. I thoroughly enjoyed the training and learnt a lot through the process.”

“A very thought provoking and useful course expertly led by the facilitator.”

…and we have also received some valuable constructive suggestions for improvement which has enabled us to continue to refine the sessions.

And so to the final element of the service… so far! We realised that no amount of training could cover every eventuality or scenario that might arise between Buddies and beneficiaries, and also that acting as a Buddy can be challenging, sometimes even overwhelming. So everyone who completes the training is invited to join our ongoing Buddy Support Programme, with one-to-one access to a highly experienced Buddy, monthly talks by expert speakers with the opportunity to discuss and share knowledge and experiences and to become part of a community of people linked by their passion to improve people’s experience of later and end of life.

So there you have it… the My Future Care story so far. We’re now actively seeking new partners, whether support groups: for carers, people living with dementia or cancer and others, coffin clubs or death cafes, hospices, memory assessment services, social prescribers… you get the picture. In many cases we can provide free training and ongoing support and free Handbooks.

Contact us by email if you’d like to know more, or if you’d just like to buy a copy of the Handbook they can be purchased here. Bulk prices are available.

By the way, Buddy Connect is the newsletter sent to everyone who has completed the Buddy training each month; interested organisations and individuals are also welcome to subscribe.

And the Buddy Companion newsletter is sent to everyone who has expressed interest in making plans for later life or has already made a start: read past issues and subscribe here.

My Future Care is a project run by Mycarematters 2020 CIC, a not-for-profit community interest company.

Buddies in the Spotlight

Each month we pay a visit to one of our trained Buddies to find out how the My Future Care Buddy Service is helping them make a difference in the lives of the people they support.

This month we spoke to Linda Edwards from Selsey Community Forum (SCF) – a partnership of local voluntary organisations which, in cooperation with the statutory and commercial sectors, seeks to identify and meet local needs. Over the past ten years, the Forum has been involved in starting and sustaining over one hundred new activities and organisations.

We asked Linda to tell us more.

What kind of support does Selsey Community Forum provide?
We support our community in many ways. Our Dementia Action Alliance of local organisations meets monthly and promotes Selsey as a Dementia Friendly town. We also offer Dementia Friends training to all our the businesses in Selsey. We provide weekly “Together Time” activities for carers and loved ones who have dementia and these are sponsored by local businesses. We organise a monthly Film Club and lunch to stimulate happy memories, and our partners at the four churches in Selsey take turns hosting “RESBITE” Sunday Teas with activities including singing and quizzes.

How will the My Future Care Buddy Service help you to better meet people’s needs? 
The training delivered by My Future Care has enabled our small group of Buddies to understand how they can tailor their support for people on an individual basis – whether they live on their own or with a partner, whether they are carer for a loved one or not and whether or not they have dementia.

For example, I visited one of our groups for carers and met a gentleman whose wife had dementia and was finding it difficult to come to terms with the disease. He and his wife had always had a very close relationship but she was not good with strangers.

The gentleman wanted to ensure everything was in place for his wife to be cared for in case anything happened to him. He already had a few things completed like their Wills and Lasting Powers of Attorney but he was interested in the ReSPECT document and some other items he hadn’t thought about. 

I arranged for him to meet me at The Selsey Care Shop where he collected My Future Care Handbooks for himself and his wife. I followed up through several phone calls on Wednesdays – when his wife went to their daughter’s. The husband worked on the Handbooks and saved his queries for our phone calls. He finished both of their books in about 2 months and also completed the ReSPECT document with help from one of our trained members of staff. 

He is a changed man and it seems the cares and worries have been lifted from his shoulders and he can devote all his time to enjoying life and the activities he and his wife do together. 

Would you recommend training as a My Future Care Buddy?
We would recommend the training and support we receive from My Future Care. The support and advice is invaluable when helping different types of people arrange their later life for themselves or their loved ones. 

Everyone is different – some people may need a variety of support to complete the steps in the My Future Care Handbook. Others just need a guide to help them start and complete their plan – with a minimum amount of contact. 

Live-in Care: How to Find a Safe, Skilled, Kind and Reliable Live-in Carer

Thanks to Julia Arnold of Home Care Companions for explaining the different options available, and what to look out for, when finding a live-in carer.

Live-in care is carried out by carers who move into their client’s home and sleep overnight, either long-term or on a rotational basis. They usually work 12–14 hour days with a two hour break during the day.

Carers can be recruited through a care agency, through a care introduction agency or independently through word of mouth or advertising.

Care agencies are regulated by the CQC but clients have limited, if any, control over who will be allocated to them or how experienced or skilled they may be.

Employing a private, freelance or independent carer is an increasingly popular alternative option for those who want more control over who is looking after them.

The benefits are that private carers tend to be more experienced and are often more skilled and capable of running a home and looking after a client without needing supervision by a manager.

Although this is an attractive option, and usually much less expensive than going through a care agency, it is important to ensure enough checks have been done and the right structures, processes and contracts have been put in place.

A good introduction agency will find the very best private carers, check them thoroughly and skilfully match them with their clients, depending on their personality, strengths and suitability for each client. They will then negotiate a fee that both parties are happy with, and provide contracts, structures and processes that will ensure a professional engagement that is likely to be long-lasting, happy and successful.

A good introduction agency should work diligently to ensure they only introduce carers with proven skills, experiences and background checks. Clients should be provided with carers’ full credentials, training certificates, CV, DBS certificate (police check) and references and should interview them either face to face or on video link before making their choice of carer.

If the relationship doesn’t work out, for any reason, or the carer is unwell or has to go away, a good introduction agency will introduce equally professional replacement, cover and peace of mind.

The benefits are that you can have a suitably matched carer who is more skilled, experienced, kind and capable, usually for much less money than a care agency. Once happily matched, a client can keep their carer without the worry of them being ‘moved on’ by the agency and strong bonds can form between client and carer.

Introduction agencies are not regulated by the CQC and there is a risk that some services don’t check their carers properly or match them with suitable clients. This of course applies to care agencies as well; CQC registration does not guarantee a quality service.

The key to peace of mind is to know what questions to ask and to ask lots of questions.

Anyone looking to hire a private, freelance or independent carer can get free advice from Home Care Companions on 01403 711 639 or via their website: https://www.homecarecompanions.co.uk   Home Care Companions is a leading introduction agency that covers England Scotland, Wales and Northern Ireland.

If you find your own private carer and want advice on putting thorough checks and processes in place to protect your loved ones, Home Care Companions offers a 10-point background checking service.

 

‘Shedders’ use the My Future Care Handbook to make plans for later life

We recently started to offer training and ongoing support to organisations wishing to help their members / clients / patients make plans for later and end of life.

We have already trained staff or volunteers of over 20 organisations throughout the UK, all using the My Future Care Handbook as a source of information and structure for the conversation. Thanks to grant funding we’ve been able to supply training and ongoing support free to many of them, including free Handbooks for the people they go on to help.

One of the first organisations to sign up was Broadstairs Town Shed (Shed of the Year 2022 no less!) which offers older people, of all genders, a space to work together on woodworking projects, where they can learn, share skills and socialise together.

We asked them to explain how they’d be using the My Future Care Handbook with their members.

Who does your organisation support and what kind of support do you provide?

By creating a safe, welcoming space which is focused on woodwork, carpentry and craft, our members are able to get out of the project what they need. For some the project is a place to drop in for a cuppa and chat. For others it is a lifeline, helping them reintegrate into the community after a significant life event such as bereavement, stroke, PTSD or a mental illness. We offer a no time-limited programme of help and support – we are here for our members when they want to come.

One of the key benefits of the Shed project is that people feel that their skills are being used and appreciated. It helps our Shedders retain the role of productive and valued community members, combating loneliness and that sense of invisibility.

How will My Future Care Buddy training enable you to better meet the needs of the people you support? 

As the Shed has grown so has the support we offer our members.  By working with local community groups and health providers we have created our Nourish & Flourish wellbeing programme.  The Shed is a ‘family’ with a wealth of lived experience, where everyone is there to support each other, especially through difficult times.  We’re mindful that many of our Shedders are Carers, looking after loved ones, as well as a membership demographic who need to be considering their future care needs.

Through group sessions, professional presentations and one to one drop ins we’ll be working through the My Future Care Handbook.  From the initial presentation, introducing the Handbook, the response to be involved has been overwhelming with over 70 signed up and more asking to join the programme.  This is early days for us, as we’ve only just embarked on the journey, but we’re excited to see where it leads.  As we work through this first phase, we’re looking ahead at the possibility of becoming a community hub for others to access this service.

Would you recommend the training to other organisations? And why?

Absolutely.

Sadly, you only fully appreciate the significance of the My Future Care Handbook when you speak to those who weren’t fully prepared for the complexities, and the emotional impact, of decision making awaiting them, but too late to ask.

Through tackling this with a group dynamic our Shedders are free to move at their own pace but know that their friends are going through the same process.  They’re there for each other, with the buddy system support, to have these much-needed conversations and share their thoughts.  As a group it takes away any taboos and facilitates an environment of support: no one’s alone.

Life Celebration Books – a gift for your family

We’ve always said that making plans for your future is a gift for your family. Here’s a way to do that whilst creating a fantastic book for future generations to see.

Life Celebration Books are a wonderfully creative way of approaching later life planning. They’re designed to record your best bits- the stories you’d want to share in your eulogy. Lists of your top music tracks, and readings that hold a special meaning. Pictures of favourite flowers. Photos and video clips of how you’d like to be remembered.

The creative process of making your book offers immediate well-being benefits. Then, once your book is complete, there’s a great satisfaction in knowing that loved ones will have everything they need to make funeral planning easy. They’re also a fantastic gift for future generations- a chance to preserve family history and lovely way of sharing words of wisdom- your views and values.

These Life Celebration toolkit makes creating these books easy and enjoyable. You’ll be matched with a Life Story writer who will meet with you online, guiding you through the process. They will then handle all the design and printing, arranging for your finished Life Celebration Book to be delivered to your door.

For more information call Rachel on 07583 297432 or see their website, www.presentingyourpast.com