National Voices is collaborating with the Centre for Mental Health to better understand what helps the emotional wellbeing of people with long term conditions, and those who support them.
Centre for Mental Health’s research has highlighted the gaps between mental and physical health support in the NHS and demonstrated the case for investment in services including liaison psychiatry, perinatal mental health care and psychological therapies for people with long-term conditions. National Voices’ membership has identified the mental health support needs for people living with physical health problems as a top priority and held a members’ workshop which outlined some key insights that need to shape our ongoing work in this space. We are working together to address this issue because in partnership we bring in depth research and policy expertise, understanding of mental and physical health and longstanding commitment to putting the voice of experience first.
Having a physical health problem takes a major emotional toll. From first symptoms and diagnosis onwards, people experiencing long-term illness consistently report emotional and psychological distress that is rarely acknowledged or supported. At least a third of people with a long-term physical illness also have a diagnosable mental health problem (Naylor et al 2012). Many more face emotional strain, stress or low mood while dealing with pain, fatigue, body image, loss of mobility and independence or social connectedness. The result for many people is poorer health (physical, psychological and emotional) and worse outcomes. The consequences of this often undiagnosed and unrecognised distress also account for some 10% of all NHS spending (Naylor et al 2012).
This issue was recognised in the NHS Long Term Plan, which set out proposals to expand IAPT provision to more people with long-term conditions (NHS England 2019). This is a welcome move, but it will require significant levels of system, culture and behaviour change to realise the benefits.
This project is funded and supported by National Voices members.
Aims and objectives
We want to understand from the experiences of patients, family members and, importantly, health and care staff (including in VCSE organisations as well as the NHS):
About the emotional impact of having a long-term condition (or multiple conditions)
About what helps or hinders disclosing distress and responding appropriately
About what makes it easier to get access to effective help
How health and care staff themselves cope with working in an emotionally charged and exhausting environment, dealing with a lot of emotional distress
Our aim is to understand a range of perspectives from people with different long-term conditions, and the people who support them, what helps or hinders their emotional wellbeing.
We will carry out a series of consultations, through a mixture of 1-1 interviews, focus groups and discussions, with people with long-term physical health conditions, family carers and people working in health services seeking their experiences and views.
We will work alongside organisations that support people with a variety of long-term conditions and their families in order to identify both common themes and differences. We will also purposively seek the views of people whose experiences are less widely heard or understood, including those from BAME communities, LGBT people and those with disabilities.
By bringing together evidence from different perspectives we should be able to build up a picture of the current system and its challenges as well as identifying examples (small or large) of what makes a difference.
We will bring our findings together in a report and gather during the course of the project stories and where possible video or audio recordings to produce testimonies that may help to generate more understanding and through that stimulate thinking on how to better practically and tangibly support people with long term conditions and the people who look after them.
Our aim will be to follow this project up with further work to develop and test practical resources that will bring about improved support and that can be used widely across different long-term conditions, settings and services.
Please get in touch with firstname.lastname@example.org if you would you would like to be involved in the project.
We are hosting an introductory webinar for National Voices members on 24 April, please join us to find out more