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East of England Patient Leadership Event – 23rd November 2017

Today I had an absolutely amazing day at the Patient Leadership Workshop Event run by Health Education East of England, East of England NHS Leadership Academy and The Eastern Academic Health Science Network. It was an event to bring together patient leaders with professionals to network, share learning, pool ideas, work together to understand the role of patient leader and understand the benefits and difficulties of patient involvement and to pull take apart the topic of patient leadership and patient and public involvement, to understand how it works and how we can get the best from it and also ideas for developing, improving and integrating patient leaders in the NHS. 
[If you don’t know what a patient leader is, check out my blog from 2016 – click here.]
We had speeches – of which I gave one, table-based workshops, open discussions, panel Q&A, networking, teamwork, idea-sharing and more. 

A truly fantastic event, I’ve met some amazing people today, shared my story and my thoughts, answered lots of questions, came up with ideas which were unanimously agreed with by the group I was working with and also the attendees as a whole when we shared these with the room, and I have also been requested to do some other speeches by a few professionals at the event today. 

In my speech I touched on my work and my roles and what forms my work takes; my hard work at networking to ensure I represent the views and experiences of many people I am required to advocate for and not just represent myself and my own views/experiences; that people, especially young people, with complex needs are the least represented group in patient involvement/patient leadership and that involvement groups and activities are often not accessible or prepared for the high level of needs and disabilities these people have; patient leadership is exciting/rewarding and challenging in equal measure; and that my work is my life, it keeps me going, keeps me striving into an uncertain future, it has taught me to have goals and keep aiming high and to not be afraid of plans changing, and my work has given me experiences and opportunities beyond my wildest dreams, it gives my life meaning and purpose, but also that I would’ve qualified as a junior doctor this year had I not deteriorated, become disabled at 14 and progressed to the point I am at now, but I am often told I’ve made far more of a difference as a patient leader than I probably ever would have as a doctor – I certainly wouldn’t have received an MBE at 22! 

Some key points:
– “You can’t advocate for what you don’t know”; that networking is vital to being a patient leader. 
– Accessibility is vital for involvement, as is diversity to ensure you are open and accessible to all and create a group that is representative of the community. 
– We need to get more young people involved, especially reaching young people who are hardest to reach; those not accessing services, those most in need or at risk, and/or who have disengaged with health services following transition. 
– The NHS and all its bodies – and social care – need to invest both time and funding into patient leadership/involvement, in order to make it a success. Often there’s the debate around patients being paid to give their time, which we tried not to get into, but also having staff within the organisations who have the time to invest in the patient leaders and groups, who can support them especially given we can share some very negative and upsetting experiences and it’s good to have someone we can turn to for support, but also to have the staff time to invest in marketing opportunities, reaching patients, going out and ‘recruiting’ and so on. 
– Patient Leaders need to be involved at all levels, no tokenism, to be truly integrated into the running, development, management, improvement (etc) of services and for the NHS and organisations to recognise the part that charities play in supporting patients into roles as patient leaders and in patient involvement groups. 
And more, I won’t bore you with anything else. 

It was a fantastic day, I’ve come away energised and determined and ‘buzzing’ so to speak. So many ideas running through my mind. 

Molly also enjoyed today, getting lots of attention – she really was centre of attention at times! She does love events and meeting people, I am so lucky that she is so adaptable and that she enjoys her job so much. She’s a dog in a million. We were also educating people about Dog A.I.D. and people were amazed that Molly was a pet who became an Assistance Dog and that I trained Molly myself with help from a trainer from the charity. So the event was nothing to do with Assistance Dogs and nothing to do with charities but it’s great that we can educate wherever we go. Molly is just a star. 
Today has been a great day. I am so lucky to be able to attend events like this and be offering the chance to speak at such events. To be able to share my story and affect change. To impact upon others. I love my life! 
Here’s some photos of slides & artwork from the event. 

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