Change Agent

Shaun Webster

CHANGE is a leading national human rights organisation led by disabled people that promotes choices, rights and inclusion for people with learning disabilities. CHANGE’s mission in all of its work is to achieve equality, change attitudes and end the discrimination people with learning disabilities face.

CHANGE pioneer and promote inclusive employment. CHANGE works with organisations to change attitudes and achieve equal access. People with learning disabilities co-lead and co-develop all of CHANGE’s work, working with equal pay and status alongside someone without a learning disability.  In addition CHANGE produce award winning easy read literature, all of which is co-developed and quality checked by people with learning disabilities.

Read more here:

http://www.changepeople.org/

Shaun Webster, International Project Worker, CHANGE

Background

Shaun is a grandfather from Yorkshire who has a learning disability.  He is an International Project Worker at CHANGE. He travels all over the world to train professionals in inclusion, accessible information and independent living. As part of his work he works in partnership with children’s rights charity, Lumos, working as a mentor to young people in Eastern Europe who have lived in institutions, providing support and building skills and confidence.  He is such an international statesman these days that catching up with him was a problem. He was on this occasion just back from addressing the Zero Project Conference on independent living and political participation at the United Nations in Vienna.

Shaun began working with CHANGE in October 2003; he has worked with parents with learning disabilities across the UK, to produce Training the Trainers Course for parents with learning disabilities to train education, health and social care professionals.

He has worked on an employment project where he trained employers on how to create supportive environments and roles for people with learning disabilities that are inclusive and have real impact on their organisations.

He has been influential in campaigning with CHANGE for the UK Government to produce and introduce Good Practice Guidance for professionals supporting parents with learning disabilities and their children. He has delivered training within the UK and across Eastern Europe on Inclusion, good communication and support and making information accessible. Shaun is also currently working with Care Minister Norman Lamb, Simon Stevens of NHS England and others to look at improving employment opportunities for people with learning disabilities and giving more power and influence to self-advocacy organisations.

Shaun is a role model for young people with Learning Disabilities, using his skills and expertise to put the messages about Human Rights and Inclusion on an international platform. Actually I see him as a role model for all of us who by virtue of a label have more difficulty in getting our voices heard

I met him at NHS Innovation Expo in 2014 making some barn storming comments and made such sense. He is a true Change Agent who is walking the walk as well as talking the talk….

Tell us a bit about your work as an International Project Worker at CHANGE

I am working at the moment with young people with learning disability in Eastern Europe who have lived in institutions – building their confidence so they have a real say in how services are run and can do what they want to do in life.

Every time I go over I see how their confidence is growing. The first time we meet, they tend to be very quiet and timid. Then as I spend time with them I see them becoming more aware of everything around them and their confidence starts to grow. I get them thinking. One of them came up to me and said ‘I want to be a role model like you Shaun” and that is exactly what she has done. All I did was pass the torch onto her. Those kids are all achieving things now – they are advocates, peer supporters – whatever they want to be

What are you particularly proud of in terms of the changes you have been part of making?

I am very proud of the work I did in Moldova to give the young people with learning disability a voice and the confidence to express themselves. They told me before they were crying and they are not crying now – which says it all.

On my last visit to Moldova of my visits there I was training them in public speaking. Two of the girls were quite shy but asking me loads of questions. Then some time later I heard from them again but this time actually preparing to visit London. They asked if I would support them during their visit and in the end, they didn’t need my support much at all, they were so confident now. They even met the author of Harry Potter and founder of Lumos, JK Rowling, and had their photo taken with her.

This work is all about breaking barriers and the only way to do this is through inclusive education. This is the only way for it to work.

As you know Sir Simon Stevens pledged for NHS Change day to help drive through change for people with learning disabilities”. What pointers would you give him in how to do this?

Don’t get me started. I could talk all day on this! There’s a lot that needs changing.

Here’s an example. I went with my mum to the hospital for some tests. It took us 20 minutes to find where we had to go (Mum has LD as well). There was no accessible signage with pictures so that we could understand it, no staff to help us. Mum doesn’t usually lose patience but she was getting really upset. There was no colour coding like they have on the London underground to help us get to where we had to go.

To Sir Simon I would say you need to involve us at all levels to sort this out. This includes involving us in training doctors and other staff in how to communicate with people with learning disability and start by getting rid of jargon so that services are really accessible. At the moment they are not.

Here’s another example. I was diagnosed with diabetes. I wanted to do the right thing with my diet and so on but found I could not understand any of the information I was given.  Catherine also from CHANGE was the one who helped me. She has diabetes as well as a learning disability and was able to support me by telling me how to spot the signs of problems with my blood sugars and explaining to me about diet in a way that I could understand. This is the kind of peer to peer support that we need to do more of

What they could do in the NHS is use those people who are already working there with a learning disability to give advice on accessibility. In a hospital for example there might be a porter with a learning disability who could help. If there are NO workers with a learning disability in the organisation then that needs to change as well.  Simon Stevens should ensure that the people we first meet when we come to a hospital or clinic know how to communicate with people with learning disability. For example it is time to make sure receptionists, the people who send out the letters, who meet us when we first arrive all get proper training and that we are part of delivering that training.

There is so much I could tell Sir Simon but really it is about making sure we are in the room when they are all talking about accessibility starting from the basics such as signage. There is no point in that happening on its own without those of us who know what it is like round the table too.

Any other changes you would like to see?

Definitely to stop lumping us together with people with Mental Health problem. It is NOT the same thing. I talked to the politicians at a conference and it happened there. I am really passionate about politics and all I could think of was “they are running the country and they don’t know the difference”. They should be working with us before they even become MPs and that way they might learn how to communicate better with ordinary people and particularly those of us with learning disabilities.

Give us an example of Shaun the Radical in action.

Just last week I was given 9 minutes to talk at the Zero Conference at the United Nations in Vienna. I left it right to the end to ask why there is not one person with a Learning Disability working at the United Nations. I am not sure they expected that one. I notice things you see.

 

Michelle Hudson

hudsonWho are you? What do you do?

I am a Care Maker (Chief Nursing Officer’s Ambassador of the 6Cs) and a 3rd year student nurse (adult) at Teesside University.

What has been your most notable radical accomplishment or experience?

I like to challenge things in a positive way and believe it’s the small things that really make a difference. During one short placement I helped identify some key areas for change following an experience when caring for people with Dementia.  I am particularly proud of this achievement as I had to find the courage to not only to identify the change but to ensure that real positive change followed. I am passionate about protecting those who are vulnerable and making sure that they are treated with respect and dignity.

At university I developed and led our first patient safety conference #tupsc14. The idea was empowering students as change agents to be at the forefront of leading our culture of safe, compassionate care. We covered areas such as dementia, pressure ulcer prevention, keeping people with learning disabilities safe and medication errors. I was supported with an excellent team of other students who were also passionate about patient safety. The event was supported by NHSIQ and featured some first class speakers consisting of both service users and professionals, who were experts in their fields. It was huge success and I am particularly proud that current second year students have come together to plan #tupsc15.

When did you first realise that you are a health & care radical?

It’s all about people and relationships. I have always been a people person. When I first heard out about Care Makers I knew instantly it was for me. What’s not to love about a group of like-minded people, supporting each other, committed to changing health care and challenging the status quo? I read about the importance of resilience. I was particularly inspired by Helen Bevan’s talk that I had watched at university and her phrase ‘rocking the boat and staying in it’. I love my job and the people I work with so I want to work with them to improve our services and culture and not be seen as a troublemaker. I’m still working on the resilience part but I am getting better!

What advice do you wish someone had given you earlier in your career?

You know more that you think! Other life experiences bring so many benefits and added value. It enables you to see things in a different light. I worked in IT and sales for 18 years before becoming a student nurse. My advice to other student nurses embarking on their studies would be – you are a student nurse, not ‘just’ the student nurse. Be proud and be the change. You have the power!

What is your favourite radical characteristic?

The ability to make emotional connections and build relationships. We are all in this together.

What is your favourite question?

Why?

What one clue tells you you’re affecting positive change?

I would say the underlying culture is testament to positive change. It’s also great when a colleague or service user reinforces this and gives you some positive feedback. I love getting thank you cards. It makes me feel warm inside!

What do you think is most important for people to understand about radicals?

Radicals thrive on a base of positivity. We may get the odd knock will always rise to the challenge, pick ourselves up and carry on rocking that boat where needed!

What’s your one word piece of advice for radicals?

Dare!

What’s your one word piece of advice for non-radicals?

Challenge!

Where do you think radicals are most needed today?

Everywhere. “Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead

Who is your favourite radical from the past 100 years?

There are so many people who I admire such as Rosa Parks. Her courage and conviction regarding civil rights changed the world. Within healthcare Kate Grainger MBE is my favourite radical. The #hellomynameis campaign has not only taken the NHS by storm but is now supported by political leaders, football clubs and corporate organisations. Kate is true transformational leader of compassionate care.

What’s the one thing you should never say to a radical?

But we’ve always done it this way!

How do you rate yourself as a radical?

Work in progress! Always changing and learning.

Michelle Hudson – @catmichelle76

 

Jane McGrath

JaneWho are you? What do you do?

Filmmaker and public relations consultant, university lecturer.

Mental Health Activist.

I was so astonished by my dreadful experience of secondary care mental health services that while I was able to walk away from the treatment to protect what little sanity I had left –  I have been unable to walk away from the problem.

 

Since 2008 I have been working with West London Mental Health NHS Trust to improve patient experience. I have been a paid service user consultant delivering authentic co-production practice since 2013. The projects include ‘eliminating the need for control, restraint and seclusion’, ‘shared decision making around medication’ and developing an ‘independent user voice’.  Our work on restraint has been featured on Radio 4 and we are hosting a sold out co-produced conference on shared decision making with international speakers this week.

 

I have also been speaking internationally on our co-production projects in both Australia and New Zealand. I am a Winston Churchill Fellow, a Millennium Award winner and a current CLAHRC fellow.

What has been your most notable radical accomplishment or experience?

The West London Collaborative.

I eat, drink & sleep the Collaborative. Its about to become a legal entity. It’s an innovative model for a health and social care community interest company – a radical, citizen led consultancy that’s serves commissioners and providers. We will cover the 8 London boroughs of North West London and our membership and workforce will be local people who have experienced first hand the local health and social care services. That’s the hospitals, GP’s, children’s homes, various care pathways, urgent care, crisis care and social services.

As a collaborative will work in equal partnership with professionals and teams, to design, deliver and evaluate services, co-produce policies and where invited, hold organisations to account. We will argue, innovate, question, debate, challenge and crucially actually resolve big health and social care problems – together.  We bring local knowledge and say it as it is – as long as we keep solutions focused.

We also partner with national and international academics, innovators, mavericks, activists, artists and artisans that push us to think way outside our own experience and comfort zones.

The Collaborative invests all profits back into our community via an ‘assets based community development’ model.  This will grow our community resilience, remove dependency on creating unnecessarily medicalised services and prevent people having to use ‘services’ if avoidable.

We will create spaces to grow active citizenship, creating dialogues about our communities and the nature of power – replacing tedious top down monologues. We will challenge and pose questions such as “just who is dependent on who?”

Empowering citizens and creating real dialogue should not be radical – but it is.  Citizens are a hugely untapped resource for working in authentic partnership to create the kind of grass roots change our communities so desperately need.

When did you first realise that you are a health & care radical?

Once upon a time… about two years ago in the same week;

Saturday night; Shepherd Bush – 10.30 pm – all my friends tucked in at a local pub. I’m stuffing conference packs with promotional junk as a trade off for my conference place on Monday.

Tuesday morning; 11am, I’m slumped in the mud in Richmond Park, weeping and wailing with my bewildered dachshunds as yet another text tells me that the Indian High Commission has rejected my application for a film visa on yet another technicality.  (It took 11 attempts, a face-to-face interview and 16 months for me to get permission to make a film for my Churchill fellowship about recovery in an Indian research hospital – but I GOT IT!!)

NEVER, NEVER, NEVER GIVE UP!

Thursday late afternoon; I’m standing on a sardine packed and very delayed train all the way from a conference on restraint Derby, loudly arguing the case as to why my proposed cake celebration for World Mental Health was empowering and liberating and not a security risk…As I dramatically shout “this is about challenging stigma…about our civil rights & our human Rights!!”- the tightly packed & weary commuters break out into cheers…then giggle…then fits of laughter.

What advice do you wish someone had given you earlier in your career?

Slowly, slowly catch the monkey.

I’ve been rather impatient and easily frustrated by short sighted dullards or those risk-averse laggards but now I’m older I understand people will only move at their own pace.

What is your favourite radical characteristic?

Having ideas and brainwaves… and finding fabulous new things and inspirational people…

What is your favourite question?

What shall we do about that?

What one clue tells you you’re affecting positive change?

When I am really, really challenging or have just deconstructed the meaning of the entire health care system – and people are still happily talking to me.

What do you think it’s most important for people to understand about radicals?

That my silence does not constitute agreement with you, some times I am just tired…or bored…

Or have learnt to live to fight another day.

What’s your one word piece of advice for radicals?

Shine.

What’s your one word piece of advice for non-radicals?

Dream.

Where do you think radicals are most needed today?

All institutions, especially universities, government & hospitals.

Who is your favourite radical from the past 100 years?

I have changed the question:  Who are your three favourite radicals from the last 100 years?

John Lydon.

Guy Debord,

The whole Zapatista movement from 1994

What’s the one thing you should never say to a radical?

Shut up.

How do you rate yourself as a radical?

A fledgling.  Still learning to fly.

Tapas Mukherjee

tapas-mI am a respiratory registrar and education fellow at University Hospitals of Leicester.

What has been your most notable radical accomplishment or experience?

A couple of years ago I did an audit revealing only 60% of medical staff were aware we had guidelines to treat acute asthma and only 40% used them. I updated the guidelines so that they were easier to find and use, but crucially I tried something a bit different – I sang them on a YouTube video, filming the whole thing with a smart phone and editing it on my home computer.

Staff loved it, and awareness improved to 100% with usage increasing to 80% over the next 2 months. The video was awarded the Innovation in Education Prize by The British Thoracic Society and now has over 75,000 views.

When did you first realise that you are a health & care radical?

It was a long time after that video, when it started getting awards and attention from BBC, ITV, TIME magazine and so on. I realised this was something that people thought of as ‘innovative’. I never considered entertaining medical YouTube videos to be ground-braking – I suspect a teenager with a decent MacBook can make one nowadays, the NHS needs to get on board with it as a credible way of communicating with people!

What advice do you wish someone had given you earlier in your career?

It’s okay to sometimes not to follow what others do, but be aware making your own path is incredibly difficult, and I’m not sure if I will succeed in turning my ideas for further music videos into a successful vision, but I won’t get this opportunity again, so I won’t give up yet.

The NHS way of working doesn’t encourage you to question the world around you. It expects you to accept a sub-optimal way of working because ‘that’s how we always do things around here’ or ‘there is no money’. We need people who have the determination to make changes. If you have a good idea, have the courage to see it through…Unless it involves nakedness, in which case it’s probably not a good idea.

What is your favourite radical characteristic?

Imagination. Enthusiasm. Determination… and a bit of luck. Sorry that’s four things…

What is your favourite question?

I don’t think I have one. But I do like it when people say ‘there are no stupid questions’ it makes me immediately feel conformable with them.

What one clue tells you you’re affecting positive change?

Getting national attention from major organisations, awards, publications, good feedback from friends colleagues and patients all helps, but ultimately I think you know inside yourself if you’re doing the right thing.

What do you think it’s most important for people to understand about radicals?

They may appear to be a bit crazy. But remember Einstein said insanity is doing the same thing again and again and expecting a different result.

What’s your one word piece of advice for radicals?

People might think you’re crazy for trying something new, bear this in mind when you’re asking them for money / help / advice / references. You need to show them why you are worth something in a way they find exciting, because not everyone will share your passion to try something new, and some people may go out of their way to stop you.

What’s your one word piece of advice for non-radicals?

These people don’t need advice, they’re happy to follow the well-travelled path that leads to a safe life and prestigious job. I am quite jealous of them.

Where do you think radicals are most needed today?

Where people have given up hope of changing things for the better.

Who is your favourite radical from the past 100 years?

I’m not sure he was a radical as such, but I thought the way Gandhi managed to take on the British Empire without weapons, and win was quite an achievement.

What’s the one thing you should never say to a radical?

You probably shouldn’t encourage them too much. No real work would get done otherwise. They need people to ground them every so often I reckon.

How do you rate yourself as a radical:

I’m not sure what the rating system is here. If the top achievement is a ‘free radical’ I would describe myself as ‘simmering’ at the moment. The next step would be ‘bubbling’, and then maybe ‘fizzing’, so I think I have a long way to go yet.

You can follow Tapas Mukherjee on twitter @321Tapas

John Walsh

Who are you? What do you do?

I am John Walsh @JohnWalsh88 and I work at York Street Health Practice. We are part of Leeds Community Healthcare NHS Trust. York Street is the medical team for people who are homeless and in the asylum system. I have worked 20 years with homeless people. My new role is as practice manager / operational lead.

What has been your most notable radical accomplishment or experience?

The greatest thing I have seen is transformation. By this I mean where human beings really become aware of who they are, what they are and what they have to offer. This can be clients or staff or carers. This process is something that starts to change everything. I think we often just work on the surface – changing a structure, writing a new policy or creating a new role. These can all be good things but its the deep work that really changes people and creates new realities.

johnwalsh

When did you first realise that you are a health & care radical?

I have seen people with awful life experiences move to healing, recovery and freedom through the years. This has really impacted me. Also a few years I wrote the model for the service. This is not what we do but how we do what we do. It is an inner model focused on positive spaces, relationships and compassionate values. It came from hours and hours of trying to find the words to describe to visitors what York Street is all about at it’s best. The words became a presentation. In these times of trying to articulate our service identity doors opened for me of what our work was all about. Recent work with Maxine Craig has convinced me that this model can be used in teams and with lots of very different people.

What is your favourite question?

Either ‘What difference can you make?’ or ‘What power, possibility and choices do you have in this situation?’

What one clue tells you you’re affecting positive change?

Feedback. Emails, tweets and personal sharing from others tells me that I am getting it right sometimes.

What do you think it’s most important for people to understand about radicals?

I think the enemy of positive change and innovation is the belief that people can’t change and things won’t change. I would like people to see that authentic transformation is possible and does occur. I have seen it. When we find ourselves everything starts to fit.

What’s your one word piece of advice for radicals?

Hope

Where do you think radicals are most needed today?

I think we need people committed to transformational practice everywhere. I think we will have a real problem if we do amazing work in the NHS and this isn’t occurring in Social Care and Housing and the Third Sector. We are all in this together. We also need to support and promote an alliance between patients, staff and carers for best culture and care. We can learn so much from each other and find new ways to see, think and do health and care.

Who is your favourite radical from the past 100 years?

Dr Viktor Frankl. The reasons are focus on personal responsibility, the power of goodness, that we can choose to be the best in the worst conditions, how hope supports us through the darkness and the importance of inner work. These facets are to me transformational work. The great news is that we all can do these.

What’s the one thing you should never say to a radical?

‘You’ll never do that’

How do you rate yourself as a radical:

To be honest I use the word transformation or transformational. The reasons are (1) this best describes my own journey – which I still have a long way to go with (2) for me it best describes how people and services can see, own and release their gifts and energies. (3) It is universal. We all have great gifts and qualities. In transformation we find the inner treasure. We become who we already are at our best.

I don’t think I can rate myself. I’d probably get it wrong anyway. I’ll leave that to those who know me to make that call.

Carol Read

What has been your most notable radical accomplishment or experience?

“Developing the brand of My Trusty® from a moisturising cream made in a hospital pharmacy to a range of products sold via mytrusty.co.uk, Amazon, Hospitals, GP practices, pharmacies and retailers. The values of the brand fit with my ethos as all profits go back to patient care and formulations are carefully designed to reflect the research undertaken on current trends such as natural products.

Why am I proud of this accomplishment and experience? Because people said it could not be done, it’s a full on team effort (thank you to all involved) and the support every day that comes from NHS staff, customers and retailers who believe in the products.

The two new products from the My Trusty® range (Body Butter and Face and Body Oil) are special as they are my innovations utilising clinical nursing knowledge, aromatherapy and industry research.”

When did you first realise that you are a health & care radical?

“When I presented on the WebEx for School for Health and Care Radicals and launched my Flipboard magazine on line #CuttingEdge. The combination of both and feedback made me feel inspired, genuine, humble and part of a bigger social movement worldwide of change agents.”

What advice do you wish someone had given you earlier in your career?

“Be authentic, inspire, challenge, listen and model the change that you want to happen. I was probably given that advice, but as a careful rebel it takes courage to be authentic, dig deep and let that positive rebel out full time.”

What is your favourite radical characteristic?

“Passionate belief in the value of doing what I do.”

What is your favourite question?

“The one I answer well.”

What one clue tells you you’re affecting positive change?

“Feedback, an understanding that people recognise a shared purpose and a willingness to engage.”

What do you think it’s most important for people to understand about radicals

“Being a positive radical is a good thing you really want one on your team. They question because they care!”

What’s your one word piece of advice for radicals?

“Believe!”

What’s your one word piece of advice for non-radicals?

“Question!”

Where do you think radicals are most needed today?

“Positive radicals are needed to challenge the status quo. We live in extraordinary times of ground breaking technology and social media connection yet compassionate care and being part of a supportive network is still what matters.

Who knew that we needed a new product, pathway, campaign?…someone did, took the risk and put it in place! Radicals notice things that make a difference and inspire others to do something. Good healthcare examples are #Hellomynameis and #NHSChangeDay.”

Who is your favourite radical from the past 100 years?

“Many radicals/rebels for different aspects of my work and outlook. Their common aim being to challenge the status quo, stimulate new thinking and bring about greater understanding.”

What’s the one thing you should never say to a radical?

“It’s not possible.”

How do you rate yourself as a radical?

“I sometimes rock the boat if it needs rocking to bring about positive change and inspire others.”


You can follow Carol on Twitter @CarolLRead

 

1 2

Font Resize