Wellbeing Our Way is about enabling people to manage their health in ways which matter to them. We work through community and voluntary organisations.

Wednesday 2 September 2015

Dear <<First Name>>,

"I used to think I could do it all myself. I can't" @sm_partnership

"Accepting doesn't mean giving up - it just means making the most of what matters to you" @anyadei

"I'd quote the narrative statement: 'to enable people to live the life they want to the best of their ability'" @SarahClareB

For me, these reflections get to the heart of supporting self management as a partnership between the person living with long term health needs and those working alongside them - regardless of whether they are clinicians, health coaches, peer supporters - or any of the diverse roles working to enable people to live well with their long term health needs.

On average, a person living with long term condition(s) spends 8757 waking hours a year managing their condition or disability and betweeen just 3 and 7 hours with a health professional. If we want to enable people to manage their health needs and live in the ways which matter to them, we need to be offering support which enables people to develop the knowledge, skills, confidence and motivation they need to make the most of what they're managing well, and to make and maintain changes where appropriate.

This issue of WOW Now includes a range of perspectives around what supporting self management means - to people living with long term health needs and to those working to support them. It offers a wealth of online resources including approaches specific to working with young people and those living with dementia, as well as opportunities to get involved with Wellbeing Our Way.

As ever, huge thanks to those of you who are contributing your experience and expertise to Wellbeing Our Way - I was struck at our recent POW WOW both by the range of support for self management which is already happening, and also by the aspirations of those working within charities and community organisations to develop more creative and inclusive ways of supporting people to manage their health.

If you work within a charity or community organisation and would like to get involved with Wellbeing Our Way, please do get in touch.

Best wishes,

Natalie Koussa
Programme Lead – Wellbeing Our Way

@nataliekoussa

P.S. Please see our #SelfManagement storify for highlights from our POW WOW and twitter chat.

POW WOWs

Wellbeing Our Way’s POW WOWs (shared learning workshops) bring together people working in charities and those with lived experience to develop approaches which enable people to live well. They are a great opportunity for shared learning between staff working directly with people with long term health needs, as well as those who are developing these approaches.

“Good mixture of attendees led to full and interesting discussions"

- Workshop participant

On 26 August, Wellbeing Our Way held its Supporting Self Management POW WOW which focused on using coaching techniques to enable people to manage their long term health needs; supporting young people to self-manage; and self management in relation to the specific needs of people living with dementia. Please click here to see the agenda for the day.

Many thanks to Barbara Babcock (Transverse Myelitis Society), Lucy Moore, Chloe Kazantzis and Dan Trew (self management uk) and George Rook (Shropshire Dementia Action Alliance) for facilitating such diverse workshops throughout the day.

Barbara opened the day by exploring supporting self management from a coaching perspective. The 'Wheel of Wellness' was offered as a practical and reflective framework to enable people to work towards their own, individual goals. Barbara also shared findings from her research into using coaching with people living with transverse myelitis. You can see Barbara's slides here.

The ‘What are we already doing? What are the challenges?’ session gave an opportunity to share the existing ways in which organisations support people to manage their long term conditions, alongside aspirations and challenges in this area. Please click here to see the table notes.

self management uk's session focused on some of the specific ways in which young people can be enabled to develop the confidence, skills and knowledge needed to manage their long term health needs better. Chloe and Dan offered powerful reflections on their self management journeys, and the ways in which support for self management has enabled them to live their lives in the ways which matter to them. Click here for the slides.

Through an emotive combination of personal experience and examples of good practice, George considered what it means to live well with dementia, and how people can be enabled to do so. George's slides are here.

The first meeting of the Supporting Self Management community of practice will be held at 2-4pm on Tuesday 29 September. The community of practice aims to make real headway in developing some of the ‘more than medicine’ approaches we know can enable people to manage their health needs and live well. Please get in touch with Natalie if you would like to join the community.

Supporting Self Management POW WOW on 26 August.

Upcoming POW WOWs:

Wellbeing Our Way's series of POW WOWs is now well underway, with workshops being held on care and support planning, peer support, demonstrating impact and supporting self management. There are still opportunities to get involved in our remaining POW WOWs:

14 October - Developing person-centred information and helplines
11 November – Enabling people to influence

Read more and register here. We will confirm places as soon as we are able.

If you are a person with lived experience who would like to attend one of the POW WOWs, please see our Reward and Recognition policy for details of travel expenses and fees available.

WOW How: self management uk

WOW How is a regular feature which highlights some of the great work already existing within the community and voluntary sector. This edition's WOW How is from self management uk, the UK's leading charity in self-management education, training and support.

“This self-management course has opened my eyes to how much I had lost sight of living my life…This course made me realise only I can take control of myself.”

self management uk is the UK’s leading charity in self-management education, training and support. Since 2002, we have been working with patients, carers, healthcare professionals, clinicians and commissioners, providing self-management interventions for those living with one or more long-term health condition.

Our training is delivered by peer facilitators, who either have a long-term condition or look after someone who has. Our tutors have been through a self-management course and have volunteered to be tutors in order to share the life-changing benefits of self-management training. By engaging volunteers, our programmes have a wider impact on local communities.

We offer support for self management which is tailored to specific needs. For example, we have worked with Kent Association for the Blind developing a programme suitable for the partially sighted using volunteers who have limited sight; we run a young carers course specifically for 12-15 year olds tailored to their unique challenges of juggling school with family, friends and caring responsibilities; and we are piloting large scale group “lite” sessions in Leeds where awareness of self-management is raised and community support groups are available.

We have found that the benefits to people living with long term health needs are significant: increased self-confidence; increased control over own health and wellbeing; better able to participate in shared-decision making; reduced time off work; better symptom management, with reductions in pain, anxiety, depression and tiredness and improved clinical outcomes in people with arthritis, asthma, diabetes, hypertension, heart disease, heart failure, stroke, cancer and other conditions.

Participants say:

“This self-management course has opened my eyes to how much I had lost sight of living my life…This course made me realise only I can take control of myself.”

“I remember one instance where I was taken to A&E and the triage nurse was amazed at how quickly I was able to describe my symptoms and tell her about my medication. She told me she often spent 20 minutes on the patient’s medical history. She said it would save the NHS a fortune if everyone could do what I did that night.”

“A person who is better informed about their condition becomes a better self-manager.”

“The course promotes respect and empathy for doctors and the pressure they are under to supply answers quickly in short consultations.”

“Now that I’ve learned to self-manage, it’s an ongoing process. I’ve learned skills that will serve me for the rest of my life.”

Benefits of supporting self management for the health and care system

With increasing numbers of people living longer and also living with one or more long-term conditions, the costs of treating these individuals are estimated at 70% of all healthcare spend.

According to NHS England, only 5.4% of people with a LTC have a written care plan and yet proactive and collaborative care planning can help save on average £452 per patient per year from within this population.

Additionally, effective support for self management can assist with systems resilience, alleviating the pressure at times of crisis:

50% reduction in hospital services overall
16% reduction in A&E attendances
10% reduction in outpatient visits
7% reduction in GP consultations

For more information, please see http://selfmanagementuk.org/

@SelfManageUK

If you would like to share an example of promising practice for inclusion in future editions, please get in touch with Natalie. We would be particularly interested in examples around ways in which organisations are providing person centred information and helplines.

Tell us something about yourself...

Chloe Kazantzis is 20 years old and lives with cystic fibrosis (CF). Chloe was diagnosed with CF at 6 months old and diagnosed with CF related diabetes when she was 14. Chloe loves yoga and is passionate about painting, drawing and making art.

What inspired you to be part of Wellbeing Our Way?
I'm very interested in self development and finding ways of improving - I read articles and books on the subject all the time. Being involved with self management uk has inspired me to promote health and wellbeing, and I am very keen to get young people's voices heard.

What’s your number one tip about how you live well?
Take time out each day to do something for yourself! When I have time I like to cook a meal for myself, have a bath, or paint.

What has happened to make you feel most in control of your health?
I have become very self aware and mindful of my health through talking about my experiences as a volunteer tutor for self management uk. Being a tutor motivates me to take care of myself, and being more confident gives me control over my life.

What change would you like to see in how charities enable people to live well, in the ways which matter to them?
More emphasis on the importance of talking and sharing experiences with others, and making support groups available in the community. Support from others really helped me feel less isolated, and make sense of my condition and confused feelings. I felt like I was a part of something greater than myself.

Tell us something surprising about yourself.
I like to always keep busy, and find that I am more productive and energetic when I have less sleep, I only need about 4 hours.

@cgkazantzis

Latest Blog:
Self Management - or why I shouldn't trampoline

Carol Pearson is a retired chartered accountant. When her full-time career was cut short by complications from severe endometriosis, she had to re-create herself and she now works as an audit chair for NHS Crawley Clinical Commissioning Group. Carol helps as a research assistant at Royal Surrey County Hospital, is a trustee for Endometriosis UK and co-leads endometriosis support groups in Brighton and Guildford. In 2013, Carol shared her story in a talk entitled ‘Rewriting Red Riding Hood’ at TEDxBrighton.

In her blog, Carol explores what self management means to her, and reflects on her most enduring challenges. Here's a sneak preview...

I’ll come clean about this – I don’t particularly like the term ‘self management’. Every day as adults, we have to manage all aspects of our lives – our jobs, families, homes and finances. Why should our health be any different? Because somehow, it is easy to forget that we need to take responsibility for that most precious resource – our own physical and mental well-being.

Read the rest of Carol's blog here.

@Carol_J_Pearson

Click here for the latest WOW blog

Meet the Steering Group

Patrick Wood is the co-ordinator of SUST, a network of mental health trainers with lived experience of mental health issues, and a member of the SCIE Co-production Network. He was recently appointed as a Mind Engagement Coach.

Here, he talks about the importance of co-production and suggests that taking a co-productive approach to developing support and services helps people to self-manage their longer-term health needs.

What sparked your interest in getting involved with Wellbeing Our Way?
I've worked for VCS organisations since the early 1990s and I'm passionate about co-production, peer support and engagement and involvement. My experience and values fit well with the Wellbeing Our Way programme, particularly its commitment to modelling co-production and its aim of supporting VCS organisations to actively involve people in managing their health and identifying and working towards their personal goals.

Read more here.

@pwtc_wood

Useful Resources

General Supporting Self Management Resources
In our Supporting Self Management evidence review, National Voices compiled information from 228 systematic reviews. We provide accessible and accurate information so commissioners, health professionals and service-user groups can see what works best and how to invest time and resources.

Men’s Health Forum’s How to engage men in self management support aims to encourage the development of self-management support programmes that men will want to join.

Nesta’s People powered health: health for people, by people and with people shows how healthcare can combine the best scientific and clinical knowledge with the expertise and commitment of patients themselves.

The Health Foundation’s Person centred care resource centre: Self-management support includes information around implementing self management support and improving systems and processes.

Talking Mats is a social enterprise whose vision is to improve the lives of people with communication difficulties by increasing their capacity to communicate effectively about things that matter to them.

QISMET is an independent body developed to support self-management providers and commissioners to achieve the highest possible quality service for people living with long-term health conditions. QISMET has a database of self management support across England.

Helen Sanderson Associates has useful templates for one page profiles. A one-page profile captures all the important information about a person on a single sheet of paper under three simple headings; what people appreciate about me, what’s important to me and how best to support me.

#HelloOURaimis offers an Aim Plan which aims to support shared-decision making and care-planning within one conversation.

The Pain Toolkit offers support for people who live with persistent pain and healthcare teams who support them.

Know Your Own Health is a social business with a mission to ensure people can easily access the knowledge, skills and confidence they need to manage their own health so they can live their lives to the full. Their Patient Platform is a living workbook, bringing together care planning, decision aids, relevant and specific information, goal-setting tools and peer support so people can access them wherever they are and link them to any structured support they may be receiving, whether that’s mentoring, coaching, telehealth or other clinically prescribed support.

A Better Plan is an online care planning tool, for people with long term conditions.

Measurement Tools
The Patient Activation Measure identifies where a person is within four different levels of activation. This gives providers and health coaches insight to more effectively support each individual.

The Health Education Impact Questionnaire (heiQ) is an Australian-developed health education impact evaluation system. It consists of 40 questions, organised into eight scales. Each scale is an independent questionnaire and together the 8 scales provide a comprehensive profile of the intended outcomes of health education / self-management programmes.

The Outcomes Star™ is a unique suite of tools for supporting and measuring change when working with people.

The Health Foundation’s Measurement and Evaluation outlines some key approaches to demonstrating the difference self-management support is making.

Resources focusing on Coaching
My Health My Way is a personalised health coaching service based in Dorset.

I nearly didn’t do it… Sam Peaceful-Day lives with Transverse Myelitis and is supported by Anya de Iongh, her self-management coach. In this blog, Sam and Anya reflect on the difference health coaching has made for Sam’s life.

Resources focusing on Children and Young People
The TalkLab is a conversational experiment, exploring three way conversations between adolescent patients, their doctors and their parents/carers.

Me first is dedicated to improving communication between healthcare professionals and children and young people.

Ready, Steady, Go is a tool to support planning for young people’s transition from children’s to adults’ services.

Monkey Wellbeing’s stories enable children to understand their health care and better cope with new and challenging situations.

Resources focusing on Dementia
To Know Me has been designed for people living with dementia. In addition to the mini-biography and personalised care guide, the book contains specific information on the ways in which the condition may affect the individual and aims to help to support the person living with dementia, as well as those caring for them.

See What I Mean is an app which translates words into pictures. The instant translation of word to image has been found to be effective at stimulating memories, improving communication, mood and levels of engagement amongst people with dementia.

Nesta’s living map of innovators is a quick guide to some of the most exciting things happening in the world of ageing at the moment.

The Cornwall and Isles of Scilly Dementia Roadmap provides high quality information about the dementia journey alongside local information about services, support groups and care pathways to assist primary care to support people with dementia and cognitive impairment, their families and carers.

The Alzheimer’s Society has a wealth of information about living with dementia.

Gnosall dementia co-ordinators – an example of a primary care-based older people’s mental health service.

Each Step Blackley Dementia Cafe – an example of a monthly dementia cafe for people who live with the condition and their loved ones.

Bigger Boat interviewed over 50 pioneers across the field of Ageing and Dementia care to discover: the world through their eyes; their understanding of the challenges they face; as well as the vision they hold for what is possible. Their findings are summarised in A Bigger Boat for Ageing and Dementia.

Living Well With Dementia – George Rook’s blog offers a reflective and challenging perspective on what it means to ‘live well’ with dementia.