We thought statutory services would fix things for us. Surely this is why they exist? What we weren’t prepared for were the challenges we would have to overcome. My brother was once a number, a head count and part of many different tick boxes. His care didn’t see him as a person or what mattered to him – it didn’t contribute towards him having any kind of future, it was just allowing him to exist.
Mark’s injuries didn’t just affect him. On that day in April 2012, we didn’t only lose a brother, son and uncle. My parents lost their careers whilst they cared for him, we experienced financial loss, physical health problems and all of us have been through counselling at some point.
I want to highlight what changed for us – a personalised approach built around knowledge, confidence and valued relationships – and the people who supported us on our journey. Plus, what we learned about why many of the current systems and processes need to transform in order to meet the changing environment ahead.
We realised there had to be another way, with fewer tick boxes and more conversations. Mark needed less input and better efficiency. We had to figure out how to achieve this working with statutory services rather than against them.
I remember the turning point. We met two different health professionals from two different boroughs of Greater Manchester who listened and believed in us. Our opinion and knowledge mattered. We had conversations which led to something positive but more than that, their approach spurred us on and gave us the confidence to carry on for another day.
Never underestimate how it feels to be heard and actually valued. We knew then that values, community, conversation, knowledge and relationships were keys ingredients. They had been missing from our journey so far but we knew they were the key to success going forward.
We got out into our community and gathered good information. We learned from the voluntary sector and our peers. We sought support from local and national charities. We connected with the people in statutory services who thought like we did – together we were stronger as we learned from, and inspired, each other. We took a pro-active approach to Mark’s health conditions. We knew that prevention was better than cure.
It took a lot of work but without it I believe in my heart that my brother wouldn’t be around today. Mark went from existing to having a future. A guy who was told he would stay in bed all day and amount to nothing now has his own home, an annex attached to my parents’, a Wheelchair Accessible Vehicle and is working to develop his own business. He needs good support to achieve and maintain this life – we employ a team of carers through his Personal Health Budget and we have built amazing relationships with the Clinical Commissioning Group, District nurse and GP – but he is happy and has lots to look forward to.
We have much less medical and service level input because we have better relationships and meaningful conversations.
Hopefully, our story will encourage others to take control, explore solutions and learn from each other.
Greater Manchester has a real opportunity to make change happen for many more people like us. Let’s build on the amazing work which is already changing lives locally within our own communities.
The Community Well Being conference, that took place at the Lancashire Cricket Club in Trafford on 19 July, brought together colleagues from the NHS, local councils, and the voluntary, community, and social enterprise sector to discuss the importance and value of a person and community-centred approach to health care.