Tag Archives: public services

Dementia: The One Stop Guide – an essential handbook for everyone with an interest in dementia

Dementia: The One-Stop Guide: June Andrews.

I wish I’d had this book when I first came across dementia. In plain English and a lovely human down to earth style, Professor Andrews has written a practical guide that will be an invaluable resource for everyone affected by dementia. I love the practical focus: how to stay well as long as possible and avoid going downhill faster than you need to. That’s the reality of the challenge of dementia for people who have it, who worry about having it, carers and professionals.

Dementia brings many questions and many challenges. Have I got dementia? How can I stay in my own home and live independently as long as possible? I’m worried about my Mum’s memory, what do I do? For many of us, it’s a lonely journey, lurching from crisis to crisis, making it up as we go along, feeling lonely and unsupported. This book will help us get through, to take control and help us stop seeing dementia as the end of a useful and meaningful life. It doesn’t have to be.

Dementia: The One Stop Guide brings together science, practice and the lived experience of dementia to guide the reader through many of the ups and downs that living with dementia brings and provides practical realistic suggestions for what to do.

Quotes from people living and working with dementia made me laugh, made me cry, made me grind my teeth with frustration and, most importantly, helped me realise I wasn’t alone. Hearing the voices of people who have dementia is particularly powerful, giving an insight into what dementia is really like, starting to break down the stigma and barriers that can be as damaging as the disease itself. Helping us see a person with choices and options not the helpless victim or sufferer.

You can see how to reduce your risk of dementia and how to take control and start making plans if you get a diagnosis. Of course none of us know the moment or what lies ahead, so reducing the risk and planning for our older age are things that are worth doing whether you’ve got dementia or not. Theres information on things from getting Power of Attorney (which everyone should do, none of us know the moment) to how to make your house dementia friendly so you can stay there longer (simple suggestions that won’t make your house look like a primary school).

If I had this book I know I’d have fought harder to stop my Dad getting anti psychotics and I’d have been much better equipped to stop the hospital admissions that we all want to avoid. Trying to get my parents out of hospital when they no longer needed treatment was incredibly hard and as a result of their protracted stays, my  Mum and Dad went downhill much faster than they needed to. This book will help you challenge decisions and sheds some light on the real drivers of ‘bed blocking’ in the NHS which is so unfairly blamed on older people.

The bit on working out the system is a bit frustrating – every part of the country, every areas seems to be different, it’s hard to see the logic behind the way things work. But that I’m afraid simply reflects the way the system works. It does help to know that it’s not just you being thick and there are useful hints about how to keep your head above the choppy waters of our health and social care system. Our politicians and policy makers should read that section and work out a better way of doing things – please.

With the help of this book, you can plan ahead; get practical ideas that will help you or the one you love or support live happily and independently for longer with much less stress all round. For people with dementia and carers it will help you have more confidence dealing with professionals and it does help to know you’re not alone in feeling confused, invisible or frustrated. It will help you take control and keep control.

If you’re a professional or volunteer working with people with dementia, their carers and families, this will help you too. It will show how important you are to making life good for people living with dementia. How the way you treat them and their carers can make a massive difference. It can also help you raise awareness and support people better too.

This book is a resource for everyone and if I had my way it’d be in every library, every surgery, every day centre and care home and every one living with dementia would have their own copy. Simples.

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How smiles can change the world

How well we’re treated has a significant impact on whether public services are effective or not. That’s not news, but is does make you wonder why there isn’t more focus on making the human interactions that underpin all our services the best they can be.  A recent study on the effectiveness of services for people with personality disorders illustrates very clearly why we should take this more seriously.

Professor Mary McMurran from Nottingham University was  the second speaker at the British Psychological Society Scottish Scientific Meeting. Her research on Early Engagement in Therapy: Lessons from Research in Personality Disorder showed that non completion of treatment is a major problem in services for people with personality disorders. For many of us in the room, it was pretty obvious that the issues she raised apply to a whole range of services for a whole range of people.

Professor McMurran outlined the scale of non completion:

  • A  fifth of patients failed to complete their treatment
  • The rate of non completion for people with personality disorders was even higher at over a quarter
  • Non completion was associated with poorer clinical outcomes which in themselves were more costly
  • Ten years after treatment, non completers cost £144K per person more than people who completed their course
  • Non completion was associated with reduced service efficiency and demoralised staff and clients
  • Levels of non completion varied a remarkable 37% to 80% across different services

Professor McMurran spoke with a wide range of experts – clinicians and service users – to identify what lay beneath these findings. Her study showed the critical importance of getting early contact and preparation right. This mean paying attention to:

1. The individual’s situation – their internal world, their motivation, their acceptance of having a problem, whether they have memory or concentration problems, all factors which can impact on their ability engage with and benefit from a programme. People have lives, there may have other events and priorities in their life. People’s ability to access the service, transport, timing, literacy, emotional literacy, whether they get support from friends and family all of these make a difference to success or failure. This is why we need person-centred services, why we need to be human. And

2. How services work  – how they communicate and build relationships with the people who use them. The nature and quality of relationships mattered too.

To build a service that maximises the chances that your client/patient/user will get involved and enhances the chances that it works requires that we:

  • Prepare to succeed.  Ensure clients/patients are clear what the treatment is about and what they can expect; work to build a therapeutic relationship and negotiate treatment goals; and  actively support people so they are empowered, confident and have the competencies required to make best use of the programme.
  • Value, respect and welcome participants.  A welcoming and pleasant reception and therapeutic environment; a warm and enthusiastic  greeting; encouraging appointment letters and clear information about what happens next. Following up why people haven’t attended and looking at how barriers to attendance can be tackled together.
  • Build a therapeutic, authentic, human relationship. Where client and therapist work together to convert the client’s problems into goals using goal-based motivational interviews, helping people chase positive outcomes  – much more motivating than avoiding negative events.
  • Stick with it. Renegotiate goals during treatment, persist when there are slips and slides, build a long term relationship of mutual trust all help promote success.

None of this should surprise us, these are the steps we take when we want to succeed in sport or almost any human activity, why should be it be different when people are making any life change? Why do we think our clients/patients respond any differently than we do ourselves?  Is this yet another example of the ‘them and us’ thinking that pervades far too much of our public service thinking?

Over the last wee while I have had experiences that have made me feel unvalued, unwanted, not in control and somehow wanting:

  • Several scary, almost rude, formal letters ordering me to attend for X or Y – even if  accompanied by a friendly plain english booklet, the message about who’s in control was very clear.
  • Staff who ignored me and Mum when we walked in for appointments and only acknowledged us when our number came up on the screen and it was our turn to be processed
  • The assumption that me and Mum can attend any meeting anywhere, any time in places we’ve never heard of and that neither of us have anything else important to do

So many of us just put up with it and hide our responses. Mum’s Alzheimer’s means she can’t do that. Mum’s response to poor service is tangible. Her memory might not work but she can see through the false smiles and the averted gaze and the disinterested comment. Mum can pick up all the things that people try to hide and she will become anxious, sometimes downright frightened; she worries she’s a nuisance, concerned that people are in a hurry and she’s holding them back. She trembles, stumbles, gets anxious and upset, gets breathless and sick. Mum’s emotional intelligence is acute, maybe it’s compensating for her memory, and she responds accordingly. The whole experience is difficult all round and I know has led to her condition being seen as more serious than it is.

Compare and contrast with what it’s like when  we’ve been warmly welcomed with a smile and a ‘hello’; where people checked we’re okay and not lost or needing a hand and taken time to reassure Mum.  Mum is relaxed, she can follow what’s going on, she can follow instructions. One of my favourite times was taking Mum to the opticians in North Berwick. She loved answering the questions and getting them right, she was totally on the ball and never panicked once. All because of the way Mum was treated.

It makes a big different to me too. I love it when I go into Mum’s Care Home or our local Day Centre and I’m greeted like a friend, a part of the team, a member of our extended family by people who know and care about my Mum. I love it when the staff and volunteers ask how Mum is even thought she’s not been there for a while and are genuinely pleased she’s well. I feel I’m part of a circle of care and that those words actually mean something. This is what co-production, if you want another buzz word, feels like.  It’s when Mum, me and Mum’s carers work together and she knows that. Mum loves it when we’re all friends and she sees us talking together, it makes her happy and safe,  life is simple and makes sense.

If you’ve got Alzheimer’s life can be very confusing and upsetting when there’s lots of different people doing different things. In the Abbey, Mum doesn’t need to worry about roles, job titles or even names, we’re all people care for her, together. Believe me that makes life infinitely better for everyone and you know what? it doesn’t cost a penny. You know what? It’s good for everyone, Mum, the staff and me. Professor McMurran’s research suggest it is also likely to save us money.

So why doesn’t this happen everywhere? (a key challenge raised for us all  by the Christie Commission).  I don’t know anyone in the care system who doesn’t want to make the world a better place, so what’s going on? What  is it about our systems that change decent, hardworking human beings (us) into ‘them’?  No one benefits.

Of course if there were easy answers, the world would be a different place, but there are things we can all do that will change the world. It all starts with a smile, eye contact, a warm welcome. If we could greet every patient, every client, every carer with a warm welcoming smile we’d have made a really important start and we’d all feel much better for it. And who knows what exciting changes might come next.

Go on, make everyone’s day!

Take care and 🙂

Sue

 

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February 25, 2014 · 3:56 pm