Continuing our mental and physical health guest blog series, Sophie Corlett the Director of External Relations at Mind provides some perspectives from people with physical ailments who are users of mental health services.
Mind’s work is driven by people’s experiences and last year, we spoke to people across England and Wales about the care they received for their physical and mental health. One of the top issues they raised was that they wanted services that listened to them and believed them. We hear over and over from people[i] with mental health problems that they have struggled to have their physical health conditions taken seriously and not dismissed as a symptom of their mental health problem, leading to delayed care and sometimes tragic outcomes.
When I was in Cumbria I knew there was something wrong with my heart, I was getting funny pains, I was having funny dos and I didn’t know what on earth was going on. I just felt awful. I kept going to the doctors and saying, “There’s something wrong with my heart.” And he’d say, “Well how do you know?” It took me ages, a long time to say, “I need to see a heart specialist.” And I just got to see one up in Cumbria but then I moved so I had to go through the process again when I came down here and they were like, “Why do you want to see a heart specialist?” I said, “There’s something wrong with my heart, I know there is, I keep having these awful dos, I’ve never had them in my life, they’re nothing to do with my fibromyalgia or anything else, please believe me, I know there’s something wrong.” But the doctor just kept umming and ahhing, putting it off. Then last year when I was really, really poorly, I finally got the results of my scan back and I’ve got a hole in my heart and I need an operation. I had to say so many times how poorly I was and that there was something wrong with my heart because they didn’t believe me. But I just knew there was. I said, “I want to see a specialist, I want to know what’s wrong with it. I know there’s something not right.” It’s horrible when you have to be like that with your doctor. It’s upsetting. And you feel like it’s just because they know you’ve got mental health, that they don’t believe you. - David’s story.
Many of us will be familiar with the statistics: people with physical long-term conditions are two-to-three times more likely to experience mental health problems than the general population. We also know that people with severe mental illness die on average 15 to 20 years earlier, mainly due to physical health problems. Our mental and physical health are interdependent, and yet at Mind, we often hear from people who feel an unhelpful, even harmful, distinction made between their physical health and mental health.
We’ve been to some appointments where they’ve specifically said, “You can only come about one thing.” So if you come in and you say, “My pain is making my mental health worse.” They’ll say, “Let’s make another appointment to come back." - Ray
People want integrated services that treat the whole person. Again and again, we heard how people are forced to navigate a maze of services which treat one aspect of their health, which don’t communicate with each other, and fail to see the person behind the condition.
Gone are the days when everything was all under one roof – you knew where you were – nowadays you just bounce over multi-agencies, like a grenade with a pin removed, so I don’t know what the hell’s going on; I’m damn sure anybody else here doesn’t know what’s going on, because there’s no central point. - Sam
And finally, people wanted aspirational, goal-based care that is based on their own goals. They wanted clinicians to be more creative in their approaches, for example, using social prescribing to achieve goals for physical and mental wellbeing together or to tackle loneliness.
Well mine is loneliness. I’ve got nobody ... I go days without seeing anyone. I do a bit of volunteering and I do a bit of shopping that’s all and I’ve got my 3 stray cats. I can go days without seeing anyone. It seems everybody’s got somebody. I am lonely. - Chris
None of this is easy to achieve. Systems will need to work together to provide wrap-around support for people with complex conditions. It takes time and perseverance to build the sorts of relationships and trust required for services to give away autonomy, pool budgets or share plans, in pursuit of better patient outcomes in the longer term. But though this is slow work, where we have seen greater collaboration, people’s experiences of care have improved hugely.
And alongside changes to systems, we need to equip and support those at the front line of caring for our health. For example, GPs tell us that they want access to, and time for, more mental health training to build their confidence and similarly, specialist mental health staff can feel outside their comfort zone when dealing with physical health conditions on inpatient wards. And we need to relieve the unsustainable workforce pressures on those providing care so that they have the right support when they are struggling without fearing the consequences.
We know change is possible because we have seen it in pockets around the country. We want to see these exceptions become the norm, so that caring, confident, holistic treatment is available for all of us, wherever we live.
[i] All names below have been changed to provide anonymity.