The pre-amble to the up-coming Kings Fund 2023 Annual Conference reminds us in stark terms that:

 

The health and care system is facing profound challenges – severe staff shortages, services struggling to recover from the Covid-19 pandemic, record numbers of people waiting for care, and increasing financial pressures. Public satisfaction with the NHS and social care services is at an all-time low.

 

While money and effort are being spent on grappling with the answers to a staggering set of complex issues and effective service responses, those with the most to offer are still routinely left out of discussions and decision making. At a time when too many services are overwhelmed with high demand and lack of resources, we need the voices of service users and carers, now more than ever.

 

After decades of working in different guises in the world of advocacy, community development and user involvement, I have witnessed time and time again, the benefit that user voices bring. Leave a group of managers to come up with the answer to moving services forward (me included) and no matter how smart, up-to-date and dedicated they are, they will get it wrong. Not totally wrong – but wrong enough to see their efforts fall short of the mark. The plain fact is that none of us will ever truly know how our services help or hinder service users and their unpaid carers, until we need to use them ourselves.  

 

Setting up genuine effective user involvement is both an art and a science. I get it. It’s complicated to get right. But the price of getting it wrong has reached new heights. We need to learn from those places that have put user voices at the heart of decision making, resulting in real, lasting, positive change.

 

One of the reasons I wanted to work for tide is their commitment to putting carers at the centre of what they do. It was set up with the clear intention of supporting carers to fill their cup so full of confidence, knowledge and skills, that they would go out and change the world. Because it is a world that needs changing when it comes to carers of people with dementia. Deep, urgent and radical change. It is hard to think of one facet of dementia care that is working smoothly and unproblematically across the entire UK. Services from diagnosis, post diagnosis, day to day support to end of life care remain a postcode lottery. For the disease that is now the largest killer in the UK, with numbers set to hit over a million by 2030, the stakes get higher every day.  

It is also evident that we can’t continue with a reliance on singular voices. Yet this is how user input is often structured. Just one (or two if you are lucky) voices with direct knowledge of end user experience, speaking against the weight of largely professional views, with little support and probably without payment for their expertise. Sometimes the user view makes it through and goes on to make a difference to services. Very often the words end up on the equivalent of the cutting room floor.

 

As an organisation, we are approached on a regular basis to provide carers who are willing to talk about their experiences at a wide range of events. We are asked by large, well-resourced organisations with their respective services being used in numbers that far outstrip our own, relatively modest, network. We must ask why is this so? Why haven’t they put arrangements in place to involve carers systematically, as part of their everyday operations? And what does it mean for those organisations like tide whose purpose is to enable carers to speak out?

 

Quite simply it underlines the fact that organisations like tide are essential. Many recognise our track record and expertise in developing programmes, resources and the ability to instil levels of confidence in carers that often surprise them, when they put their new skills to the test. It does not happen by accident, default or magic. It is based on sound underpinning principles that always puts the relationship first. It requires coaching, mentoring, encouragement and feedback, which come at a cost. It is always affirming to hear carers talk about the healing and restorative aspect of advocating for others. They realise that their views matter and can make a difference. We ignore their views at our own peril – and that of future carers.

 

It is also difficult to observe the reduction in funders willing to support this type of work. There is a mistaken assumption that influencing work offers no supportive role to the carers’ mental, physical and emotional wellbeing. We have seen the opposite of this position be the case for many of the thousands of carers tide has worked with over the years; they flourish in the knowledge that they are giving something back and trying to make the world a better place for others who follow behind. Bizarrely, this work is also seen as ‘too political’, so therefore contentious and risky to fund – but someone has to speak out about how things could be better.