What a lot of gaps there are for mental health service users to fall into! First, there’s the gap between symptoms developing and receiving a correct diagnosis (which will probably be at least ten years, if you have bipolar). Even once a diagnosis is agreed on, there is often a gap between what we think will help, and what our care team believes will help us. Even supposing we agree with clinicians’ ideas we sometimes find there’s a gap between the treatment that’s recommended, and what commissioners will actually fund (for example, the evidence base may suggest we need therapy, but we end up getting drugs; or national guidelines promote the use of therapy A, but only therapy B is available in our area.)
Perhaps the biggest gap of all is the chasm between services concerned with our mental wellbeing, and those caring for our physical health. Last year the King’s Fund and the Centre for Mental Health estimated that over 4 million people in England alone live with both a long-term physical health condition and a mental health problem. If you’re in that situation, I’m betting you’re already well aware of the gap.
If your initial diagnosis is a mental health problem, it’s all too common for doctors to view any physical issues as some sort of manifestation of your mental health problem. Sometimes, of course, physical symptoms can be caused by mental distress – for example, when highly anxious, I sometimes vomit repeatedly – but that doesn’t mean that every physical issue is rooted in our mental health. All too often, genuine physical symptoms, whether caused by psychiatric meds or simply an unrelated coincidence, are written off as “acting out”, “making it up” or “attention seeking”. Becoming acutely physically well is a risky thing to do in a setting where staff view your symptoms as “behaviours”, rather than indicators of a physical problem. Equally, being admitted to a medical or surgical ward could precipitate a psychiatric emergency if you are not provided with your regular mental health drugs.
The technical term for this is “diagnostic overshadowing”. If you are under the care of a mental health team, your mental health diagnosis looms so large in their minds that they are unable to see real bodily complaints as separate from your mental health. Meanwhile, those with long-term physical health problems can find their newer mental health symptoms written off as a part and parcel of their preceding disability. “When I went to my GP about my mental health,” a service user with multiple sclerosis told me, “he just said, well, you’re in pain – of course you’re depressed.” As a consequence, the GP saw it as more important to act on the pain than it was to investigate and treat the depression.
It’s clear to me that there is a very noticeable split in care, and it’s not just affecting people with long term physical health needs. My psychiatrist is great, but sees himself very firmly in the mental health camp. He does not appear comfortable dealing with my physical health issues – even though they are directly caused by the drugs he prescribes. Conversely, my GP practice (which I also think is fantastic) is brilliant about trying to address my medically-induced bowel disorder, but seems anxious about issues like lithium. Any change in my lithium blood serum, and I am asked what I am “going to do about it”, i.e. whether I intend to contact my consultant for advice. I don’t quite get why it’s seen as being down to me, the patient, to be the messenger between primary care and mental health care, but apparently that’s how it is.
Over the past few weeks it has been heartbreaking to read tweets by Sarah (@acarerseyes), who blogs at acarerseyes.wordpress.com about caring for her partner, Chris. Chris is currently in a psychiatric ward and appears to have physically deteriorated quite rapidly since he was admitted. Every time Sarah visits she is shocked at how ill he appears, and has witnessed him repeatedly vomiting, complaining of excessive thirst, seeming dizzy and even passing out. When Sarah arranged to meet staff via a ward round, Chris was told, “You are drinking excessive amounts of fluid to make yourself sick, we don’t know why but probably for attention.” It has taken great patience and persistence on Sarah’s part to ensure Chris gets medical testing and investigation, but sadly she is still no closer to getting any answers. And as she and I frequently discuss, what happens to a patient in Chris’s situation who doesn’t have a family member to advocate for them?
On the other side of the divide, another Twitter friend, @FemalePTSD (http://femaleptsd.wordpress.com), has been under the care of her local Home Treatment Team (HTT) for some time but recently found herself at A&E after taking an unintended overdose. She was checked over and because she was found to have tachycardia (abnormally high heart rate), she was transferred to the Medical Assessment Unit. F waited an unacceptably long time on a trolley, without being formally admitted to a ward, or given anything much to eat. During this time she repeatedly asked medical staff to contact her mental health care providers, justifiably afraid that HTT would believe she had seriously harmed herself and might even ask police colleagues to help break into her home. Her request was not carried out. Thankfully, she still has an intact front door, but anxiety about this issue hardly seems likely to have helped her heart rate return to normal.
So what’s to be done? The King’s Fund report makes a number of recommendations for better treatment of people with comorbid physical and mental health problems. Unsurprisingly, they are in favour of better integration between the two sides, and recommend that the new Clinical Commissioning Groups (CCGs), which came into being on 1st April, make this a strategic priority. One fairly common-sense suggestion is that all kinds of healthcare staff, whatever setting they work in, should be offered training about mental health conditions to improve “psychological literacy” (wonderful phrase) and should be equipped with some basic skills for dealing with people in mental distress. There are no specific suggestions for training, but I would think that something like Mental Health First Aid would be ideal for this.
Another useful recommendation is that mental health support staff should placed in primary care settings like GP practices or local health clinics (as midwives, health visitors and district nurses often are) or within chronic disease management programmes like pain services or diabetes clinics. This is already happening in some areas, with Community Psychiatric Nurses being asked to work in primary care. The report also notes that psychiatric liaison to general hospitals requires improvement – this will come as no surprise to anyone who has attended A&E or been admitted to a general hospital ward as a result of mental distress. Liaison services are also highlighted as an example of good practice No Health Without Mental Health, a guide for the new CCGs produced by Mind, Rethink, the Mental Health Foundation, the National Service User Network and a number of other mental health organisations.
It’s interesting that the report calls not for more resources, but for the ones we have to be delivered differently. In my view, the biggest block to these recommendations is likely to be staff resistance. People struggle with change, and those in specialist teams are used to working only with those referred by “gatekeeper” GPs and are likely to find working along a the less serious part of the mental health spectrum challenging. Similarly, training everyone from surgeons to GPs’ receptionists in basic mental health is likely to meet with scepticism, if not downright obstruction (I’m thinking in particular here of a number of acute sector consultants I have worked with!).
As a service user, it’s hard for me to know how to try and nudge members of my clinicians towards more of a team approach, but I’m going to have to raise it soon. Next month I’ll be meeting with my Consultant for the first time since February to discuss a planned discharge to primary care. It’s a step forward, a mark of real progress, so I’m pleased. But my major concern is whether and how my GP will speak to my Consultant if she has any concerns about lithium levels, recurrence of symptoms, and so on, without me having to play the go-between. Because I don’t want get lost in the gap.