Most if not all patients, service users or carers, as in my case, get involved in health and social care services or research because of their own personal experience, often termed ‘lived experience’, of a health or social care condition or problem. We give many different reasons for getting involved but probably the commonest is to give something back for the treatment, care, support or services we have had experience of either personally or in caring for or supporting one or more people close to us.
Our personal experiences are a strong motivational force for why we get and stay involved. We develop our own areas of interest in health and social care services and research based on those initial experiences and our experience of getting involved itself. If my own experiences are anything to go by we sometimes get so immersed in what we do that our original reason and motivation for doing so may slip to an extent from our minds and we may get a bit carried away by what we do. I am not saying that everyone does this or that it is a bad thing necessarily because it demonstrates a strong level of commitment to our cause of interest. However, I raise it because from time to time I get reminders of what originally motivated me to get involved and it helps me to check back with myself that I am doing what I do for others and not for myself. And it helps to confirm how much it matters.
Most of us who get involved in services or research end up getting to know others with similar interests and motivations to get involved. For me that is one of the most important aspects of what I do. The examples of others, which are always inspiring and often humbling, help me stay focused on helping the people I get involved with do as good a job as possible for the benefit of patients and the wider community. And it is one of the really enjoyable aspects of getting involved too. To be part of a community of like-minded people from a wide range of backgrounds and interests is a privilege and a pleasure but important too for helping us all do what we do as well as possible.
The reasons I think that being part of a community of people is important is that it opens us up to other ideas and broadens our knowledge of the area of health and social care we are interested in. But there is another important aspect to it that was brought home to me very recently. From time to time people in our communities will experience more of the condition they have either themselves or through the people they care for. The impact of that will naturally vary depending on what the condition is but the most extreme of course is death. And as part of the cancer research patient advocacy community I have mourned quite a number of wonderful people over the years who have died from their cancer or complications of it.
Each time there is a death in our community it reminds me that there is still a very long way to go to ensure the best possible outcomes for everyone who gets cancer. And that it is vital that people affected by cancer get involved in helping to develop the best possible services to treat and care for people with cancer and in helping to design and conduct the best possible research that is relevant to the issues we face and will make a difference to treatment and care. And the same sort of thing will happen in every community of people who get involved in services and research and will have a similar effect. And it really matters that that happens even if it can be hard to bear.
Recently three people in the cancer research community I am part of died in the space of a few weeks, which was a huge shock. It has been one of the most difficult times for me emotionally since my first wife died of cancer twenty one years ago. All three people were inspiring and amazing people who it was a pleasure and a privilege to know. But losing three of them in so short a space of time has been especially tough for many of us. As one of our number said we know that we will lose people from time to time but three at once is just wrong. However, none of those three people would want any of us to get disheartened by their deaths. They would want us to carry on using our experiences and skills to keep on doing what we do for the benefit of others because it matters. It matters in the same way it did for each of us when we first got involved and it serves to remind us that what we do is not about ourselves but about others.
So to all of you who get involved in services or research please take some time every now and then to reflect on your own experiences and those of others and on why you do what you do. It doesn’t have to be promoted by bad news of others we know but when you do it will reaffirm your motivations and focus. So please keep on doing what you all do. It really matters.