80 representatives from the community and voluntary sectors attended. The issues raised at the event seemed to strike a common cord with those who attended, some comments from feedback forms included:

‘Very informative and inspiring - inspiring in that ordinary people can influence decision making and the great passion there is to bring about change for the better’

‘Well done on the report – it is excellent’

‘A very thought provoking and well constructed event’

‘The speakers were excellent – it was very moving to hear their stories’

The first part of the event gave group members the opportunity to highlight some of the issues they had encountered in the process of supporting families going through Serious Adverse Incident Reviews and the struggle they had with the Health Service to make small, but important changes to this process. These changes hopefully will enable other families to have a better experience of going through this often painful process in the future.  The group followed on from this by reviewing progress on their ‘card before you leave campaign over the past year.  The main lessons from both these examples was that real participation of service users in decision-making leads to better outcomes and use of resources. Change did not come easily – the group had to use a range of tools to ensure their voices were really being heard such as participation indicators, requesting a right to speak at a public meetings of a Health Board, and getting support from political representatives to name but some.

Now that the group had seen that some progress made by the Health Service in engaging service users in a meaningful way – they called on all groups engaged with the health service to monitor their involvement in their own campaigns for change.  Only through this monitoring will we all know if the changes the group have been able to secure are actually sustained changes.  The group does not want other groups to struggle for as long or as hard as they did.  Fighting for our voices to be heard is an ongoing struggle – not a battle yet won.  Progress has been made - but it is up to everyone who recognises that sustained improvements in the health service will only happen if patient and carer voices are heard  - to take action.  By that we mean – recording the evidence of your involvement in bodies set up to create change and using a range of tools including those explored at this event – to make sure both your involvement is meaningful and results in better services on the ground for those who need it most.

The importance of this action was reinforced when the group presented the results of the research they have done with 58 patients and carers on their experiences of attending A&E with a mental health crisis.  From the results the group concluded that nothing much had improved and in some cases had got worse.  The group called upon the Minister to engage with them on these issues as soon as possible.  From this group’s experience – change will only come through active and meaningful engagement with government by those directly affected by these issues.

To download the full report click here.