Integrating mental and physical health: Insights from experience
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.
Why is the research being carried out?
We know that having a long-term physical health problem can take a major emotional toll. We are looking to understand people’s experiences of managing the emotional and psychological impact of living with these conditions. We want to understand whether and how people’s emotional support needs are recognised, whether they are met, and how we can improve this support.
Who would we like to hear from?
We want to speak to people whose lives are affected by long-term physical health conditions. By this we mean conditions that can be managed but often not cured, such as diabetes, arthritis, Alzheimer’s, some cancers and cardiovascular diseases, and many other conditions that are not as widely known.
We are especially keen to include people from groups that are sometimes under-represented in research, for example older people, people from black and minority ethnic communities, people who identify as LGBT+, and those from lower socio-economic backgrounds.
We would also like to speak to family members and partners of people living with long-term conditions, and health and social care professionals who support people with long-term conditions.
We would like to hear from:
- People who are living with one or more long-term physical health conditions*
- Family members and partners of people with long-term physical health conditions
- Health and social care professionals who support people with long-term physical health conditions
If you might be able to help with our research, please read the information below. If you have any questions or you would like to take part, our contact details are at the end of the leaflet.
How can people participate in the project?
We are looking to interview people by telephone about their experiences. The call can be arranged for a time that is convenient for you and it takes approximately 30-45 minutes. In the interview, we will ask you questions about the emotional impact of living with a long-term condition, the support you receive and the support you would like to receive. And, if you are a family member, partner, or health or social care professional, we will ask you questions about the ways you support people with long-term conditions, the impact this has on you and your own emotional support needs. The questions will be open-ended, allowing you to talk freely, and we hope the phone call will feel more like a conversation than a formal interview.
If for any reason you would find a telephone interview difficult but you would still like to participate in the research, there is the option of completing an online survey. There are three separate surveys and we would welcome your responses to any or all of the surveys for the groups you belong to.
Survey for people living with long-term conditions: https://www.surveymonkey.co.uk/r/GSMSF36
Survey for family members and partners: https://www.surveymonkey.co.uk/r/G3GYT33
Survey for health and social care professionals: https://www.surveymonkey.co.uk/r/GRKSVPJ
There is also an opportunity for people to provide audio or video recordings of themselves talking about their experiences. This is optional and something we will discuss with you in more detail when we are arranging the interview (or, if you complete the survey, at the end of the survey), when you will have the opportunity to ask questions and decide whether you would be interested in taking part.
What will happen if I decide to take part?
- If you are interested in taking part in the interviews, or just want more information, get in touch with Jo Wilton (her email address and phone number are the end of this leaflet). Jo will answer any questions you have and will arrange a time with you for the interview.
- At the start of the interview, we will read out a consent form and ask if you agree to participate. This isn’t a binding contract – you can change your mind at any time – it is just to say that, at this point, you are happy to take part.
- We will also ask if you are happy for us to make a digital recording of the interview. This is just to help us remember what you said. No one else will hear the recording and it will be deleted at the end of the research. You can still take part even if you don’t want the interview to be recorded.
- When we make recordings or take notes, we never include people’s names.
- If you would like to take part in the survey, all you need to do is click the link above. (If you have any problems accessing the survey, please get in touch using the contact details below and we will do our best to help.)
- In both the interview and survey, you are free to skip any questions that you would prefer not to answer, and you can stop the interview or the survey at any time.
- At the end of the interview and survey, we will ask if you would like to provide at a later date a short audio or video testimony about your experiences.
If you take part in an interview, then all your answers will be carefully kept from anybody but the people doing the research. That means they are private and not shown to people without your agreement. Your name will not appear anywhere in the write-up of the research and, again, if we quote something you say, we will take care not to include any details that could identify you. Your interview answers will be entered into a computer database without your name, so no one but us will know you took part or what your answers were. We will analyse that database by looking at everyone’s answers together. This information is destroyed at the end of the evaluation. We will write up the findings in a report and the report will be made available online.
The survey is completely private, we do not ask for your name or where you live. If we quote from one of your answers, we will take care not to include any details that could identify you.
If you provide contact details, these will only be used in the ways you have given us permission for; and, if you give an audio or video testimony, we will talk to you in more detail about how the materials will be used and make sure you are happy with this before we proceed.
What are the risks of taking part in the research?
It is possible that you could talk about things that you find difficult or upsetting during the interviews (although, again, please note that it is fine if you would like to skip any of the questions). We will do everything we can to support you if this happens, and we will help you find someone to speak to if you feel you need further help.
Who is carrying out the research?
The research is being carried out by National Voices in collaboration with the Centre for Mental Health, both of which are independent charities based in London.
If you have any questions or would like to arrange an interview, please get in touch with Jo Wilton, who is the researcher on this project. Her details are: email@example.com 07939 213215