I’m sitting on the end of my bed in hospital. Numb but in pain. I don’t understand anymore. Utter confusion. Dreaming of a future like a child, imagining I’ll be a vet or a teacher but seeing reality like an adult…I am just a psychiatric ward patient….I probably don’t even deserve the word ‘just’ in front of that. I’m a nothing, a no one. Three months locked away has completely detached me from the world around me. I belong nowhere and with no one. The world outside the window doesn’t feel like mine. It’s like I don’t remember what the rolling hills look like, nor the supermarket aisles or petrol stations. My ballet shoes disintegrated when my life turned into compost. Maybe new flowers will grow out of the soil but I doubt it. It feels like I’ll never feel the sun on my skin again and that my heart will never vibrate with the bass of loud music. Will I always be gone? Will I ever find me again?
Primary care could be so useful when helping those with mental health problems. GPs, practice nurses and pharmacists are most peoples’ first point of contact and if that care was spot on then it would have a significant and positive effect on patients. Unfortunately there are a lot of difficulties with primary care and it is very much a post code lottery as to the quality of care a person receives.
When a patient breaks a leg they are classed as an emergency and get treatment on that day but when someone’s mind breaks they are often left untreated for a very lengthy wait whilst the mind becomes more and more damaged. The first difficulty with primary care is access. It can be very difficult to access a primary care professional because of the wait for an appointment, in some parts of the UK there is a 6 week wait at a GP surgery. It can be particularly difficult for certain groups to access a GP surgery such as those that are homeless and haven’t got an address to register and the same with young people who may move around a lot due to being a student and therefore have to keep registering with services. Young people may also not have the confidence to book an appointment and go along to the surgery.
Once a patient has made an appointment with a GP then the appointment itself has difficulties, for example the consultation can feel quite rushed if the GP is running late and the patient may not feel listened to or understood. I have found that my GP has been quite dismissive, particularly as I have an eating disorder. Any symptom I have is automatically connected to my eating disorder but actually it is possible to have a mental illness AND a physical illness.
Sometimes the patient may not feel that they have a lot of choice in their treatment, for example if their GP is only offering them medication and not talking therapy then the patient may not feel they have any other option. If that patient does get a referral to a service such as IAPT then the waiting times are yet another difficulty. Some people have waited 18 months with very little support from primary care professionals, the waits are so long that people are worrying that they have dropped off of the system. Patients with existing or emergent mental health conditions should not be living in fear of falling through the gaps in the system.
Primary care could be incredibly effective in helping those with mental health problems. It could provide early intervention and help people before the illness turns into a long term health problem or requires inpatient treatment or years of therapy. It could be effective not only in terms of minimising suffering but it could also be financially effective as patients may be able to remain in work and require short-term treatment.
I have had some positive experiences visiting A&E because of my mental illness, however that is not acceptable, it shouldn’t be some experiences that are positive, it should be all. I shouldn’t feel surprised because it was a rarity that a nurse spoke to me like a human being when in A&E because of my mental illness. It should simply be that all patients feel cared for regardless of whether they are there for mental health or not.
My most detrimental experiences of A&E often involved the triage nurse. It used to take me a while to talk, I would eventually but it might take a few minutes for me to be able to open my mouth and answer the question. I was trying to process the question in my mind and break through the anxiety that often silenced me when I was told to hurry up and not mess about because she has people with real illnesses to see. I felt guilty for being there and ran out of the hospital and didn’t get treatment for my overdose. Another triage nurse asked me if I’d had an accident, I said no and then she asked, is this an emergency? Are you struggling to breathe? I answered no and she told me that I shouldn’t be there then. I was very unwell with mental illness at the time. It isn’t right, the experiences I have put me off attending A&E for mental health or physical health problems relating to my mental health. Health care is supposed to be available to all, it shouldn’t be selective of groups of which they feel they should or shouldn’t treat. Everyone deserves to be treated with dignity and respect. Everyone’s health is important.
An experience that really opened my mind with A&E care was when I turned up with a deep cut that wasn’t self-harm, it was actually inflicted by another person. The A&E staff assumed that it was self-harm and I was left in the general waiting room with no privacy, they treated me on a chair and were speaking to me in a rather harsh manner. When they asked what I had used, I explained the situation to them and they gave me a female nurse instead of a male nurse, allowed me to wait in privacy, a nurse held onto my shoulder comforting me and they spoke to me like a person, we had conversation and laughed as they lightened the mood. The difference in the care and interaction shocked me, as a mental health patient they wanted to get me back out the door, as a physical health patient they wanted to make sure I was okay. It was shocking.
There seems to be this view in A&E that mental illness is not ‘real’ illness and is not deserving of emergency care. Mental illness is as real as physical illness and if we look at it this way, a mental health crisis is more threatening to an individuals’ life than a broken leg. There are often comments of, “You did this to yourself”, I mean “deliberate self-harm” what a horrible phrase, nobody decides that their life aims are to self-harm, no one wants to feel that way and do such horrible things to themselves. The patient is not just ‘another self-harmer’, people self-harm for different reasons. For one patient they may self-harm for control but it goes too far and they end up in A&E it may not be a suicide attempt or a cry for help but for others that may be the case. A patient who breaks his leg snowboarding is not the same as an elderly patient who fell and broke her leg. Each patient is an individual. Mentally unwell patients shouldn’t be grouped and generalised by staff.
A&E staff should not be telling patients that they chose to be there when they are attending A&E for mental illness. If someone with a mental illness has chosen to be there then so has nearly everyone in that waiting room, a snowboarder chooses to snowboard and knows the risk, it could be argued that they chose to be in A&E by choosing to do a risky sport. Nobody chooses to end up in A&E, no one wants to be unwell or sit in a waiting room full of ill and injured strangers for hours on end.
A&E care shouldn’t be exclusive, it should be there for all and no matter what the illness or injury is, the care and interaction should stay at the same level. Patients with mental health problems should be treated the same as anyone else in A&E and should not be made to feel like they cannot attend the department in times of need. Stigma should not exist within the health care system.
I think that when we are talking about crisis care we need to recognise that a big part of problem is the care that people experience prior to their crisis because maybe then some crises can be prevented and people can go through less distress rather than ending up at the point where emergency services are required and hospital admissions are needed.
Firstly, I feel that GPs need more training in mental illness so that they can better understand patients who present with mental health concerns. Often people don’t want to go to their GP about their mental health difficulties when they first appear and so when they do make an appointment it is usually out of desperation. We all know how hard it can be to get a GP appointment these days, my surgery has a 6 week wait for an appointment at present. If someone walks into their GP surgery and says that they are struggling with mental health related symptoms then this must be taken seriously. I had been living in remission of my illnesses for almost a year when a huge relapse hit me and I had to go to a new GP surgery, I was drastically underweight and thinking of taking my life and my GP told me to book an appointment in a month and if I was still struggling he would make a referral then. I was in general hospital the next evening on drips and oxygen. Often it takes a lot of guts for a patient to turn up to an appointment and admit to a professional that they are unwell, GPs must realise that and act immediately on what the person is saying whether that be making a referral to a counsellor, the community mental health team or discussing medication. Help needs to be offered. Four weeks is a long time to be unwell and/or suicidal with no support.
The next problem with ‘pre-crisis care’ is the assessment process at community mental health teams. People may have waited weeks, or even months, for their assessment with the CMHT. I have known several people who have clung onto that assessment for dear life. It has been their glimmer of hope but at the assessment they have been told that they will be discharged back to the care of the GP and if things escalate then their GP should re-refer them. I think this is unacceptable and often leaves people feeling very hopeless and like there is no help for them. When I first moved to Wales I had an assessment with the mental health team before my notes had been sent over. I explained my history, my current struggles but was told that primary care (my GP) was appropriate for me and when I received the letter with a summary of the assessment it said that they felt the relocation to Wales was my primary difficulty. This was despite me explaining my history of anorexia nervosa, depression, avoidant personality disorder and previous inpatient admissions. I feel that they are under so much pressure practically and financially that they are using all the excuses they can to turn people away but this is life threatening. I fought hard and ended up with some support and then when I ended up detained under the Mental Health Act I finally got the help I needed. It’s just a shame that things were allowed to get to that point. Unwell, vulnerable patients should not have to fight for help when they are fighting for their lives. When depression is leaving you housebound and/or you are having psychotic episodes how are you meant to push your GP and mental health services to help you?
Next, I come to waiting lists. Where I live there is a two and a half year wait to see a psychiatrist if you are a non-urgent case…I imagine after two and a half years of an untreated mental illness the patient will be an urgent case! If the patient isn’t an urgent case then they are going to need more treatment to get well than they originally required, two and a half years of being ill is a long time! There is a 9 month wait to see a psychologist, the eating disorder specialist…people can die from their eating disorder in that time. I was in treatment for my eating disorder when the funding changed and as I lived on the county border it meant that my treatment had to go to the other county. I was discharged mid-treatment and put on the waiting list for the other county. I ended up waiting 18 months and spent that time in and out of inpatient care meaning that I lost my place at college. I was in recovery and doing well but being placed on that long waiting list made me unwell, cost me a lot in terms of life and by the time treatment came around I was so ingrained in anorexia that I couldn’t engage with the therapy.
This brings me on to therapy limits. When I began the therapy mentioned above my BMI was classed as ‘severe anorexia’ and the treatment team gave me 20 sessions. 20 weeks…that was it. I couldn’t even gain the weight I needed to reach a healthy BMI in that time and they wouldn’t start the therapy until my weight was healthy due to cognitive function. It was never going to work. How can you put a time limit on someone’s recovery? Everyone is different, someone might be back on track in 6 weeks, someone else might take 2 years. You cannot expect someone who has been unwell for 17 years to get better in 20 weeks.
I have reached crisis point several times, I have experienced personally how appalling pre-crisis care can be, or pre-hospital should I say. It shouldn’t take for a person to need a lengthy hospitalisation for them to receive the help they need. Some of my admissions could have been preventable, as could my detentions under the Mental Health Act. It’s quite scary to think that I have been admitted to hospital 7 times and only two of those times was I admitted without the police detaining me under S136 first. That’s 5 admissions where the NHS ignored my pleas for help, brushed me off and I ended up in a life threatening situation.
- I had spent weeks speaking to my GP and CMHT and was told to “go to the library and study.” I gave up speaking to them and tried to cope on my own but deteriorated and ended up being detained under a S136 after the police were called by concerned college staff. I was admitted for a very short admission but as soon as they could they discharged me.
- Following the above, I tried to pick myself up for two weeks. I wasn’t prescribed any medication or given any support. College called the police again after a friend had seen me in town in a bad state and persuaded me to go to the nurse. I was detained under S136 and spent the night in a cell due to no ‘places of safety’ being available before being transferred on to an acute psychiatric ward.
- I was not on any medication at the time and had recently gone through a trauma. I don’t remember the weeks leading up to this day but I had been to see my care coordinator that morning and I told her I wanted to die, she took the mick out of my voice and I left in tears. The police intervened and detained me under S136 before I was admitted to a ward.
- After my failed treatment with the eating disorder team after I was only offered 20 sessions after an 18 month waiting list I believed life was over for me. I thought I’d never get better. I tried to take my life and scarily nearly did. I was found barely conscious by police after being reported missing. After a stay in a general hospital, I was admitted to a psychiatric hospital and spent the admission being passed from ward to ward as no beds were available near my home.
- I had been speaking to my mental health team constantly, saying how strong the suicidal thoughts were getting, how I was struggling to take my medication due to the side effects. I was convinced someone was trying to kill me. I was terrified, hopeless, caught in depression and trying to cope with the weight I’d had to gain in hospital. I was given an urgent appointment at my CMHT and wasn’t taken seriously. I was crying and told to leave the room as someone else needed it so I went into the toilets to compose myself and was told to leave the building as they needed both cubicles. Later that day the police stopped me from taking my life.
‘Pre-crisis care’ requires a lot of change. Crisis care is important and life saving and we absolutely must get that correct but if we are to truly help people and help the strain on crisis services then we must get the care right in the first place before the patient experiences horrific and life threatening distress. I survived, but I often wonder how many people haven’t? How many people have died because they haven’t been able to get the care and treatment that they need? It’s a scandal and it needs to change.
I often feel that being young is a bit of a curse when it comes to having mental health problems. In the early stages of mental illness in a young person it’s often seen as a phase. A young person will start obsessively calorie counting, cutting out food groups and losing weight and it will often be seen as a phase until it reaches a dangerous point. Self harming is worryingly seen as a ‘teenage thing’ that people will grow out of. Low mood and depression are seen as hormones or being a grumpy teenager.
Looking back to when I was in school, my mental health problems weren’t seen as mental health problems. The most it was recognised was an ’emotional problems’ mark next to my name in the register. My overdoses would get me in trouble, throwing away my lunch had my parents called in. School took me to my doctors once and my gp just brushed over it as a teenage phase, never mind the fact I had been having eating problems since primary school.
In general hospitals I’ve had a lot of “Oh you’re so young and beautiful, why do you do this to yourself?”and “you’ve got your whole life ahead of you.” Comments that just made feel guilty about the way I felt and the thoughts that went on in my head. I was never taken seriously, I guess the way I was wasn’t seen as illness. It was just seen as behaviour and a teenage blip.
It’s definitely a curse to be a young person in adult mental health services. Let’s talk assessments first. My mental health has been judged on the way I am dressed and presented in every single assessment I have had. As a young person I have a wardrobe from shops such as Topshop, ASOS, Miss Selfridge and so on. The clothes in my wardrobe do not disappear and get replaced by ‘mentally ill’ outfits just because I am unwell. So yes, I do turn up to assessments in relatively fashionable clothes but that does not say anything about the illnesses in my brain. Maybe if I borrowed my mum’s clothes for these assessments they would take me more seriously. The outcome of assessments has been ridiculous in the past and I know other young people who have had similar outcomes. I have known people who have been very unwell and have waited 6 weeks for an assessment just to be told to go back to their GP if things get bad. I had an assessment when I moved to Wales, bear in mind I’ve been unwell since childhood and in and out of hospitals. Their outcome was that I was a young woman who felt low in mood because of a recent life change as I had just moved to the area. It was like NO this is not because I’m young, this is not because I’ve moved house. I have severe and enduring mental health problems. They now realise this but it took a lot of persistence in order to be listened to and given support.
In inpatient treatment I found it particularly hard to be a young person on a ward that was very focused on older people. The activities on the wards I’ve been in have been gardening, knitting, bingo, newspaper group. They’re just not very young person focused and the staff don’t always know how to deal with young patients. I also feel quite awkward being young on a ward full of people older than my parents. I shared a room with a 60 year old when I was 18.
The general public don’t always understand young people with mental health problems. They are hidden illnesses, just because you think that someone is young and fashionable it doesn’t mean that they’re not severely unwell. With anorexia, I’ve been very unwell to the point it’s affected my memory, my eyesight, I’ve been weak and cold and unable to walk very far. It’s been physical agony as well as mental agony but a lot of the time when I’ve tried to explain to people how I’m feeling the other person has laughed and said “wait until you’re my age!”
I think it can be very hard to be listened to, heard and taken seriously as a young person with mental health problems. I think that stigma and stereotyping is slowly being reduced in adults and older adults with mental health problems but there tends to be an awful lot with younger people not only in society but also in mental health services.