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

Monday 7 December 2015

Dear <<First Name>>,

2015 has been an eventful year for Wellbeing Our Way, with the following highlights:

We held a lively series of POW WOWs (shared learning workshops), each facilitated by people with lived experience alongside people working within voluntary organisations. 97% of attendees rated the events as ‘very good’ or ‘good’ opportunities to develop their understanding of the particular topic; and 100% rated the events as ‘very good’ or ‘good’ overall. Thank you to those of you who have contributed your ideas and expertise to offer challenging and at times provocative discussion.
Our communities of practice are bringing together small groups of voluntary and community organisations who are ambitious about developing more effective ways of enabling people to take control of their health and wellbeing, in the ways which matter to them. The communities of practice are focusing on the following priorities:
- Care and Support Planning
- Supporting Self Management
- Peer Support
- Engaging people in shaping health and care support
- Person-centred information and helplines
- Demonstrating Impact
Wellbeing Our Way was longlisted for the Change Opinion and Westbourne 100 awards 2015. We were nominated in the engagement category, which means we were judged as industry-leading in terms of meaningfully engaging with stakeholders and changing business practices as a result.

2016 is shaping up to be an even stronger year:

Our online WOW community will be launching in January. This will be a space to share examples of promising practice across the voluntary sector, of the kinds of ‘more than medicine’ approaches we know can help people live well. The examples will be searchable by WOW priority (e.g. supporting self management, peer support etc.) and population group. Please do look out for the launch of the WOW community; I hope that you’ll find this a valuable resource, and will contribute your own examples of developing these approaches.
In February, the care and support planning community of practice will be publishing its policy and practice paper: What is the role of VCSE organisations in care and support planning? The paper aims to spark conversation around the contribution of the VCSE sector in care and support planning, and to act as a catalyst for developing the role of VCSE organisations in this approach.
We will also be strengthening the communities of practice, progressing initial plans around regional workshops, and developing Wellbeing Our Way as a collaborative force for change in enabling people to manage their health, in the ways which matter to them.

Some of you have expressed your belief that we are developing a social movement. For me, this speaks volumes about the commitment, shared ambition and tenacity of those involved in Wellbeing Our Way; thank you for your contributions.

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

Wishing you all a restful and enjoyable festive break, and looking forward to continuing working with you in 2016.

Natalie Koussa
Programme Lead – Wellbeing Our Way

@nataliekoussa

'Enabling People to Influence' POW WOW

Wellbeing Our Way's final POW WOW in the series brought together people with lived experience, alongside staff and volunteers from a range of charities and community organisations, to explore how people with lived experience are influencing the development of charities and community groups. Please click here to see the programme for the day.

Carol Bridge opened the day with an emotive account of how she is using her personal experience of end-of-life care to represent the views of patients and carers through her role as a Marie Curie Expert Voice. Carol posed challenging questions around the potential barriers facing people with lived experience who may like to become involved in influencing charities’ work. She also shared the development of Expert Voices as an example of how people with lived experience can play a powerful role in strategic leadership. You can see Carol’s slides here.

Angela Style and Carol Pearson shared an overview of the many ways in which women living with endometriosis can get involved in shaping the development and delivery of Endometriosis UK, for instance through their support network, influencing the campaigning strategy, contributing to the patient advisory group and getting involved in newer volunteer roles that enable them to have wider influence. Please click here to see the slides for this session.

Suki Westmore (Mind Engagement Manager) gave an inspiring and comprehensive overview of how Mind is changing its organisational culture around engagement; ensuring that engagement becomes embedded at all stages of the organisation, including governance, planning and day to day operations. Suki’s slides are here.

The closing session was an opportunity to develop priorities and next steps for Wellbeing Our Way’s Engaging People in Shaping Health and Care Support community of practice. If you work within a charity or community organisation and would like to find out more about the community of practice, please get in touch with Natalie.

Demonstrating Impact POW WOW on 23 June.

Meet the Steering Group

Scottie Gregory lives with three long term conditions and is a carer. Scottie has particular interest in end of life care, and brings experience of working with a range of health and care organisations to her role as Wellbeing Our Way steering group member.

Here, Scottie shares her ambitions for how people are enabled to live well.

What sparked your interest in getting involved with Wellbeing Our Way?

I personally suffer from three long term conditions, so have experience both of the excellent service offered by the NHS and sometimes, the not so excellent care. For over 20 years I have been a carer for a person who suffers from bipolar disorder, so have been very much aware of the deterioration in the provision of mental healthcare services over that period.

I was also the main carer for my mother who came to live with me for the last three years of her life, dying at the age of ninety three. She did not want to die in hospital, so I kept her at home, caring for her inexpertly, I fear, with little support, but following her wishes. I am therefore especially interested in end of life care.

I now work as a Champion for Dorset County Council’s Partnership for Older People Programme (POPP) where my brief is to ensure that the needs of older people are provided for in the services they use, to ensure that they may remain in their own homes as long as possible, if that is what they wish.

In attempting to end isolation and loneliness (shown to damage health as much as smoking 15 cigarettes a day!), I help people in north east Dorset villages set up Lunch Clubs, Social Clubs, Neighbour Car Schemes and anything else which will provide opportunities for over 50s to get out and about and join in.

You can see the rest of Scottie's profile here.

Click here for one of the most popular WOW blogs in 2015

One of 2015's most popular blogs:
I nearly didn’t do it…

Sam Peaceful-Day lives with Transverse Myelitis and is supported by Anya de Iongh, her self-management coach, to manage her health needs and live well. This happens through My Health My Way, which offers personalised support for people in Dorset to help them live well and feel better whatever their condition.

In their blog, Sam and Anya reflect on the difference health coaching has made for Sam’s life. Here's a sneak preview...

My new doctor gave me a leaflet. I ignored it, just like I had ignored the depression I was in, due to years of pain and fatigue caused by Transverse Myelitis which makes me one in a million! It was a rare virus that affected my nervous system. But like millions of others my days had become disorganised and shorter - my life mostly put on HOLD.

Read the rest of Sam and Anya's blog here.

@anyadei

WOW How: Mind's Qur'an and Emotional Health project

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 shares Mind's pilot Qur'an and Emotional Health project which aims to spread good practice and knowledge to better engage with local Muslim groups and meet their emotional needs in a culturally appropriate way.

Working in partnership with Suffolk Mind, the pilot aims to spread good practice and knowledge to better engage with local Muslim groups and meet their emotional needs in a culturally appropriate way. This is mainly done through the development and promotion of a booklet called The Qur’an & Emotional Health: An Introduction, coproduced during a year-long journey working with Islamic scholars, psychologists, Imams and practicing Muslims.

The first phase of the project ended in March 2014 with a public event in Rochdale to launch the latest of eight bespoke local versions of the booklet The Qur’an & Emotional Health: An Introduction produced in the previous 12 months. The event also opened phase two of this project aimed at making the resource available nationally and deliver a programme of support for health and social care professionals seeking a better understanding of how to work with people from Muslim communities.

During phase one we engaged with Muslim communities across England and Wales and built capacity of mental health services at local level. Nine local minds have been involved in this period:
1. Bedfordshire and Luton Mind
2. City and Hackney Mind
3. Dudley Mind
4. Mind in Bradford
5. Newport Mind
6. Rochdale & District Mind
7. Solent Mind
8. Suffolk Mind (project partner, lead deliverer)
9. York Mind

Their staff were trained and supported to deliver engagement events in their local communities. A total of 303 people have been engaged in the process and had a chance to express their opinion on the booklet. Feedback from local Muslim groups has been overwhelmingly positive, which makes us confident about the choice of scaling up the pilot by moving to phase two, focusing on developing a national version of booklet The Qur’an & Emotional Health: An Introduction booklet. This national version will be promoted widely, together with a training package that will help health and social care professionals in engaging with faith communities (Muslims in particular) and use the booklet to support their emotional health and wellbeing.

Why did you decide to engage people in this way?
Most of the engagement activities took the form of public events because there is still a lot of misunderstanding about what mental health is amongst Muslim communities, therefore it was important to tackle this from a community perspective. Individuals would have struggled coming forward on their own because of the fear of being judged by the rest of the community. Holding public community discussions about mental health proved to be very beneficial to engage in a positive way.

How has engaging people with lived experience benefited your work?
Engagement has been at the heart of the project from the very beginning, including the development of the content of the booklet, which was co-produced with local Muslim people. Engaging with people has allowed the project to genuinely meet the needs of this community; people felt it was an organic process they were truly part of. They felt empowered and are now enthusiastic about the results achieved together.

What have you learnt? Are there things you would do differently next time? Why?
It is really important that people we engage with feel genuinely part of the whole process. There was a high risk that people would have felt ‘used’ by a big charity like Mind so it was really important for us to make it clear that we were not looking for visibility or publicity but we were there with the only purpose of supporting them. This sense of ownership had to take prevalence on things like Mind brand, up to the point that the booklet does not look like a normal Mind publication; if it did Muslim communities would not have engaged with it. The downside was that this disconnect with our ‘normal’ way of doing things made it harder for other Mind departments to support this project (in particular with regards to using it in our external relations). If we want to effectively meet the needs of marginalised and multiply-discriminated groups we must be able to adapt to a way of engaging and operating that is culturally competent and inclusive (e.g. most of the time it will not be appropriate to ask for individual stories from the project as people will not feel comfortable coming forward. Whereas being able to talk about the project in general terms would encourage other people from the same group to connect with it).

How did the engagement activity benefit those involved?
Facilitating public discussions about emotional wellbeing in Muslim communities really helped people from the community to develop an understanding of what mental health is and how to access support. A very important role in the engagement process was played by Imams who gave reassurance that mental health has nothing to do with possession (Jinn) and that it is important for people to talk about it. What support did you offer? People were offered the chance to engage in a facilitated discussion about mental health, to meet local Mind staff members, obtain information about services available in their area and engage in follow up activities (e.g. workshops).

What tips do you have for other Mind staff?

don’t be afraid to step out of your comfort zone
challenge your assumptions: always ask and be ready to listen to others
our ultimate goal is not to champion Mind’s brand but to effectively support people who need it: this means we need to be flexible, culturally competent and adapt to the context
work from within the community’s model of reality, don’t try to impose yours!
don’t be scared to get it wrong: if you establish a positive relation and trust, people you engage with will be helpful and supportive as they’ll know you are there for their benefit
be aware of expectations: be clear about what you offer and agree on common objectives

With thanks to Alex Storer – Equalities Improvement Manager

Useful Resources

Engaging People in Health and Care

Involve me – How to involve people with profound and multiple learning disabilities (PMLD) in decision-making and consultation – Mencap
People with profound and multiple leerning diabilities are some of the most excluded in society. Most don't use formal communication such as words and symbols so people often assume they have nothing to say. This guide shows how everyone can start involving people with PMLD in decision - making and consultation.

Engaging the public in difficult decisions about health service change – NHS Clinical Commissioners
The need for transformational change in the NHS is frequently discussed. So too is the need to involve the public in difficult decisions about that change. However, advice on how to successfully engage a range of public stakeholders has often been less forthcoming. This paper from NHS Clinical Commissioners is an attempt to redress that.

4Pi National Involvement Standards – National Involvement Partnership
The 4Pi framework has been developed by mental health service users and carers. However the framework has universal relevance: it is simply a means to enable services, organisations and individuals to think about how to make involvement work well.

People not process: Co-production in commissioning – Think Local Act Personal (TLAP)
This resource is for anyone affected by the Care Act including people who use services, families, carers, organisations who provide services and people who commission services. It explains all the things that councils should think about to make sure they are working in the way the new Act says they should.

Beyond the Usual Suspects: Towards Inclusive User Involvement – Shaping Our Lives
This report explores why some groups tend to face significant barriers to being involved in opportunities to influence, and how they may be fully and equally included in the future.

Beyond Engagement and Participation: User and Community Coproduction of Public Services – Tony Bovaird

‘Story telling’ resource hub – NHS England
This webpage includes resources around enabling people to share their experiences of health and care support.

Reward and Recognition Policy for people with lived experience – National Voices
This document explains the expenses and involvement recognition offered by National Voices. Please feel free to use and adapt this policy within your own organisation.

Diversity and Equalities Monitoring form – National Voices
Please feel free to use and adapt this form within your own organisation.

The Manchester Community Engagement Toolkit - The Manchester Partnership
The toolkit gives practical information on best practice for community engagement.

Transforming Participation in Health and Social Care – NHS England
This guide aims to help clinical commissioning groups (CCGs) and other commissioners of health and care services to involve patients and carers in decisions relating to care and treatment, and the public in commissioning processes and decisions. It may also be of interest to voluntary sector groups and organisations with an interest in patient and public participation.

People in control of their health and care; the state of involvement – The Kings Fund in association with National Voices

Smart Guides to Engagement – NHS Networks
The Smart Guides to Engagement series is for everyone working in or with clinical commissioning groups (CCGs). The guides have been written by experts to provide straightforward advice on all aspects of patient and public engagement in an easily digested format.

In case you missed it, here’s a round-up of the most popular resources in 2015...

Wheel of Wellness coaching template – Compasspoint
This framework was shared by Barbara Babcock in her 'Coaching: Physiotherapy for the heart, mind and soul' workshop during the Supporting Self-Management POW WOW. You can see Barbara's slides here.

Inspiring Impact Hub – New Philanthropy Capital
This one-stop shop for impact resources and tools pulls together the widest possible range of resources relevant to improving impact practice, and enables users to search and filter results according to their needs.

Peer Support – What is it and does it work? National Voices and Nesta
The peer support literature review analysed over 1000 research studies on peer support from around the world to find out who is involved in it, the type of support provided and why. The findings showed that peer support can take many forms, such as informal telephone calls, group get-togethers, online forums or structured training. The review found evidence that peer support can help people feel more knowledgeable, confident and happy, and less isolated and alone.

Peer Support case studies – National Voices
Following on from the peer support review, National Voices published a series of case studies highlighting some of the ways in which charities are facilitating peer support, and the benefits for people living with long term health needs.

electronic Holistic Needs Assessment – Macmillan Cancer Support
Macmillan’s approach to electronic Holistic Needs Assessments (eHNA) uses an electronic questionnaire as a starting point for a person living with cancer (or other long term health needs) and those supporting them to develop a care and support plan based on the person’s own priorities for their life.

Paths to Personalisation in Mental Health – National Development Team for Inclusion (NDTi)
Paths to Personalisation is a practical document which supports everyone with a stake in the mental health system to bring about the positive changes and outcomes personalisation can achieve.