16 June 2021
People living with long-term physical illnesses need more help and understanding from health professionals to support their mental health, according to a report published today by Centre for Mental Health and National Voices. The publication heralds a new campaign to ensure the recommendations of the report create effective change.
Ask How I Am is based on interviews with people living with a wide range of long-term conditions, including diabetes, arthritis, cancer and heart disease, and looks at the part that the Covid-19 pandemic has played in adding yet more pressure. The report explores the effect that a long-term condition has on a person’s emotional health, the types of help they receive, and what they actually require to develop and maintain good mental health.
People with long-term conditions are twice as likely as people without long-term conditions to have a mental health problem, including depression and anxiety. People spoken to as part of the report said their mental health was negatively affected by having to come to terms with a long-term illness, that their relationships suffered, and they detailed the burden ongoing treatment and procedures place on people.
The research shows that Covid-19 exacerbated these conditions for a great number of people, including for those who have been shielding for many months, lost social networks and missed medical appointments.
The report finds that people with long-term conditions have too few opportunities to ask for help for their mental health. Short appointments, over-stretched services and stigma all make it hard for people to say they are struggling. Many felt anxious about the future and felt a sense of loss as a result of their illness, often time and again for those with progressive conditions. This was made more difficult for people who had money worries, difficulties getting benefits, and those who experienced racial discrimination.
Approximately half of the people spoken to had received support for their mental health, most commonly either a talking therapy or medication. They described mixed results. Being offered talking therapy with someone who understood their physical condition was most often felt to be helpful, and peer support and help for family members was also valued.
As well as mental health support, people said that having a good relationship with the healthcare professionals supporting them with their physical illness was important for their mental health. Small gestures of care, being kept well-informed about their condition, and being able to get help between appointments also made a difference.
The report concludes that compassionate care must be at the heart of supporting people with long-term conditions. This means all healthcare practitioners need to know how to ask people with long-term conditions about their mental health and how to respond helpfully. It means they need more time, so that appointments aren’t rushed and opportunities aren’t missed. And it also means mental health support must be there when it’s needed, tailored to the person’s needs.
In an interview for the project, one participant responded when asked what would help them during medical appointments: “Just simply ask how I am feeling [and] coping with my mental health on a regular basis. To know someone cares means a great deal and can be immensely supportive.”
The following is a summary of the recommendations made in the report:
- All health and care workers who work with people with long-term conditions have a sound basic knowledge and understanding of mental health, and of the emotional impacts of having a long-term illness.
- General practices should receive funding as part of the GP contract to provide an annual holistic health and wellbeing check for people living with long-term conditions.
- NHS England should explore options for increasing appointment times for specialist long-term conditions consultations and providing improved access to specialist advice and help between appointments.
- NHS England should review the IAPT Programme for long-term conditions to determine whether its current approach and structure is able to meet people’s needs adequately.
- The Government should ensure that the implementation of the COVID-19 Mental Health Recovery Action Plan addresses the mental health needs of people with long-term health conditions.
- The Department of Health and Social Care should use the Health and Care Bill to ensure Integrated Care Systems will be held to account for providing adequate levels of mental health support to people with all long-term conditions.
- NHS England should ensure that there is equality of access to effective emotional support for people with long-term conditions across all protected characteristics, and especially for people from racialised communities.
- Integrated Care Systems should secure adequate provision of mental health support to people with the full range of long-term conditions as an integral element of their responsibility for population health management.
- Acute and community health service providers should ensure that all specialist care for people living with long-term conditions includes at least one mental health practitioner as a member of their multidisciplinary teams.
- Primary Care Networks should take the opportunity to offer mental health support close to home to people with long-term conditions.
As a result of the report, National Voices and Centre for Mental Health are launching a new campaign, #AskHowIAm, calling for a greater focus on compassionate care for people with long-term conditions. The campaign aims to give health professionals the time and the skills to ask people how they are and to ensure they get the right support when needed.
Centre for Mental Health Chief Executive Sarah Hughes said: “Millions of people live with long-term conditions, often for life. Living with a long-term condition takes its toll on your mental health. Being supported with your mental health makes a big difference to people’s physical condition. Yet this is often left to chance. This has to change.
“The COVID-19 pandemic has placed enormous pressure on health services and on people living with long-term conditions. So now we need to put compassion first. This can be as simple as small gestures of care during a consultation. But it needs system change, too, to create the space and the support we need and should expect for our mental health.”
National Voices Head of Policy Dr Rebecca Steinfeld said: “We are launching a campaign that asks for all people living with long-term conditions to be supported in their emotional health by all healthcare professionals in all healthcare settings.
“We know in some places it happens already - many healthcare professionals already provide compassionate care, and many more want to but are frustrated by a system that can make this difficult. We need to ensure that compassion is universal.
“The campaign is called #AskHowIAm, and aims to ensure all healthcare staff really find out how people are on an emotional level, and that the system provides the time and tools for them to have those crucial compassionate conversations. We are calling for people to get involved in the campaign by pledging support publicly, promoting the campaign on social media, and raising awareness of these issues in any way they feel able.”