While many of us will struggle with our mental wellbeing at some point in our lives, for the majority, with the right support and treatment, we will make a full recovery. Most of our mental health system is based on this assumption.  But for a sizeable minority of the population living with an incurable mental health condition, the picture for mental health support is very different, and often insufficient.  

In the last few years, there have been so many positive changes in the way we respond to mental health issues. We are all talking about mental health more with our friends and families, and GPs have fantastic resources for helping people manage their mental health before symptoms become overwhelming. Schools and universities often offer mental health support, and counselling is now more accessible than ever, with online sessions available free of charge for a range of mental health needs.

Many NHS trusts have created pathways for accessing talking therapies more directly (IAPTs), and there are so many wellbeing apps available, alongside an improvement in access to support through employee benefits. The concepts of self-care and mindfulness have seen a boom in recent years, especially among young people.  

What happens when you can’t cure a mental health condition?

Around four million adults in the UK live with a mental illness that is unlikely to be cured, such as schizophrenia, bipolar disorder, or personality disorders. These conditions can cause people issues with: 

• Isolation: People with severe mental illness are likely to become isolated and drift from friends and family. 
• Work: Employment can be extremely difficult for people with a chronic mental health condition. Their illness, as well as side effects from medications, can leave people with clouded thoughts, racing thoughts, fatigue, a lack of interest in their job, and trouble concentrating. 
• Relationships: People with mental health needs may find it difficult to connect with others, or friends may drift away after a person has shown unusual behaviour. Some mental illnesses, such as borderline personality disorder, can make tumultuous relationships more likely. Mental health conditions also increase the risk of being a victim of abuse. 
• Self Esteem: Mental illness can damage one’s self-esteem and confidence. This is especially true if one has lost friends, is unable to work, or has a personality disorder. Stigma and a lack of understanding from others can play a large part in this.  
• Physical health: Some medications such as mood stabilisers and anti-psychotics, can cause physical side effects. These can include headaches, nausea, weight gain, blood disorders, digestive issues, and heart problems.  

These difficulties lead people with ongoing mental health conditions to be at an increased risk of admission to hospital, and even suicide. Each year, there are around 70,000 hospital admission related to mental illness. It can take many weeks for someone to integrate back into society and normal life after a hospital admission.  

Over 70% of people with borderline personality disorder will attempt suicide at least once, with 10% of sufferers taking their own life. Suicide is the biggest killer of men under age 45, and among people aged 10-34, kills more each year than traffic accidents. 

What does long-term support look like? 

Support for long-term mental health conditions generally takes place in the community. This prevents people struggling with their mental health becoming isolated, while developing the skills and resources they need to stay well and enjoy everyday life in the community. This is a far cry from the past, when people with long-term conditions were kept separate from the rest of society. Treating people in the community also helps challenge the stigma and misunderstanding people with mental health conditions often face.  

Simon, a Guideposts member who has experienced psychosis, runs a Hearing Voices group. He explained how members of his group benefit from the ongoing support.  

“We check in with each other each week. Because we see each other so often, everyone is comfortable talking about some really personal things that can be quite sensitive. We have a social element and talk about our hobbies too and the group can recognise when someone isn’t doing so well. 

“I don’t talk about my mental health with family or friends, so coming here, I feel I can talk. There is a sense of comradery and we find better ways to cope with our symptoms and make sense of our condition. It’s important to regularly check in with each other and talk about how we can make sense of things together, rather than being isolated and trying to deal with things on your own. Especially for men, who tend to lack an extended support network. Very few places offer long-term support like this, even though it works so well.” 

Similarly, a member of one of Guideposts’ outreach groups who has been attending the group for several years said

“This is the only place I can come to every week to get support for my psychosis. At other places, you are only allocated a certain number of sessions, and then the support ends. It feels like the support is too often just focused on helping people get well again, and then it is withdrawn, only for people to fall into crisis. I love the group here. It helps me keep on top of my symptoms and I know I can reach out for help before things get too bad and I end up in hospital.”  

Keeping people out of crisis 

With long-term mental health, the most important work is in prevention. Providing the support and tools needed to help people keep on top of their condition and recognise when they need to seek support, prevents hospital admissions, suicide and self-harm. This type of support is provided at Guideposts in the community.  

Justine Russell, Community Opportunities Manager for Hertfordshire, emphasises the importance of keeping people stable and ensuring they are equipped to deal with life in the community.  

“A complex mental health condition is generally not something people recover from. We try and give people the coping skills to ensure they stay integrated in the community with their diagnosis. Some service users are admitted to hospital, and to integrate back into community can be difficult. Rather than recovering, people learn to manage and recognise when they are becoming unwell, and understand how to prevent going into crisis.  

“We are here to keep people in a stable state and out of crisis. There has always been a stigma around mental ill-health, and working in the community with people with mental ill health helps stop them feeling ostracized or isolated, and challenges stigma.” 

Without this support, a cycle of hospitalisation emerges. People with mental illnesses suffer a crisis, are admitted to hospital until they are deemed ‘well’ enough, and, facing a lack of support, fall into crisis and hospital again.  

Aside from the fact people admitted to hospital for mental health issues often feel it sets them back and makes it hard to integrate back into ordinary life, community support is a much more cost-effective way to support people.  

Not all mental health conditions can be cured, and ongoing support is needed 

Despite the obvious, overwhelming and inarguable reasons why ongoing support is so important and lifesaving, it continues to be limited and needs expanding. All the mental wellbeing services at Guideposts operate a significant waiting list and the picture is reflected across the country, in both the NHS, private care, and charity sectors.  

Avril Ishmael, of Guideposts’ Complex Emotional Needs Service, says “without services like ours that offer ongoing support to clients with long-term mental health conditions, people are sadly much more likely to attempt suicide and ultimately require care in hospital.” 

How Guideposts Helps

There is a clear benefit in providing ongoing support to those living with enduring mental health problems, and through this support, people can maintain their mental wellbeing, and receive extra support if needed, rather than face struggles alone, and, ultimately, not receive adequate support until they suffer a crisis.  

Through online groups, arts groups, young people’s groups, specialist groups and more, Guideposts’ Henry Smith House has been leading the way in mental health care for 30 years. 1 in 4 people will experience a mental health problem at some point in their life, and ongoing support can make the difference between an independent, fulfilling life, and a life marred by crises.

Where Guideposts can support people back to full independence we do so, but long-term support is often necessary for people with long-term conditions. Some members at Henry Smith House have been supported for several years, through various life events including bereavement, trauma, and physical illness.

To support Guideposts’ work, please visit www.guideposts.org.uk/get-involved and discover how to get involved by donating, fundraising, and volunteering.