The complaint process is something I am currently going through and it has not been an easy ride. I was unsure of whether to complain at all because I didn’t want the hassle on top of everything else and neither did I want to make it awkward between me and the staff member I was making the complaint about. Then I realised that actually I matter and this matters. It’s important that the issue is raised and the staff member is educated otherwise her comments could haunt me for years to come. You are entitled to, and have a right to complain about the care you are given. If you would like to make a complaint about the care you have received then contact the service and ask for their complaints procedure.
Stigma surrounds our society. It means that something perceived as different is seen as unacceptable and this leads to prejudice. There is stigma around the LGBT community and mental health among many other issues our society deals with. Stigma can be devastating because it isolates people and makes it harder to reach out for help and support. It prevents people from socialising, visiting GP surgeries and can even lead people to suicide. “The effects of stigma and discrimination about a mental health problem can be worse than the mental health problem itself” says Louise Penman from Time To Change.
This is why it is so important that people speak out about mental health in general and people share their experiences of mental illness because we need to get rid of this stigma from our society. Imagine a society where people could discuss their mental health easily and openly rather than keeping it as some deep, dark secret. Wouldn’t that be a breath of fresh air?
Three years ago my family and I packed our bags and moved from Northamptonshire to Wales. It was terrifying. I was dreading the move because it meant leaving everything that was familiar behind. Whilst my care had been rather rubbish back home, it was what I knew and leaving that scared me. Knowing I’d never see that receptionist’s face again upset me. I had my special place, the middle of a field where I’d often be the only person for miles and leaving that was hard. Everything was going to be new and whilst new can be exciting, it can also be stressful and lonely.
I remember trying to find the GP surgery for an emergency appointment, we walked up and down the same streets several times, walking complete circles of the block just to end up where we began and all alone time was ticking. We were going to be late, and being late sends my anxiety soaring.
I didn’t know anyone other than my mum and dad. I find it hard to put myself out there but I went to a local young people’s centre in the hope of finding friendship and I did but that doesn’t take away how utterly terrifying it was to walk into that centre for the first time. Definitely going to a local group or class helps when moving to a new area. It is so important not to become isolated as this often is not good for mental health. Volunteering is also another way to get to know people and the area you have moved too. Social media was so important to me in the first days, weeks and even months after my move. I was able to keep in touch with friends and family back home as well as emailing and phoning my old counsellor who’s support was pure gold dust. She probably didn’t realise just how much I needed her voice and reassurance then. Mind also run an online community called Elefriends and this could be a good way to connect to people and feel supported.
The GP plays such a vital role when it comes to eating disorders. They are the key holders to all other services and provide referrals to eating disorder services and community mental health teams as well as referrals for the physical effects of eating disorders such as bone density scans.
The GP is the foundation upon which the rest of treatment is built. They often monitor the patient’s weight and do regular blood tests. They are often the first port of call for the sufferer. This is why it is so important that GPS have training and understanding in eating disorders.
I had been ill for years but when I went to the GP to ask for help I was terrified. It shocked me to see the words ‘anorexia nervosa’ on my notes and I so desperately needed help. Despite the low weight and terrible mental state I was told to come back in a month. A month is a long time for someone so desperate and poorly. I couldn’t see how I could get through another month and out of sheer fear and desperation I took an overdose which hospitalised me and resulted in a CAMHS referral and a referral to the eating disorder service.
Usually GPs continue to support the patient whilst they are under the care of mental health services monitoring both weight and bloods and it is important that GPs know how to support and talk to the patient in a way that is supportive and full of understanding.
I just had a meeting with my psychiatrist, nurse practitioner and eating disorder nurse and I think it was positive. I felt supported by them and safe in their care and I felt listened to too. They have a multi disciplinary meeting about me every Friday so most decisions will be made tomorrow.
They wanted to weigh me and initially I refused because I believed I had gained loads of weight but then I allowed them to. They said it had dropped but I believe it maintained. I feel a bit less panicky and suicidal now I know my weight and it isn’t what I thought it was in my head. It just goes to show how much anorexia confuses the mind.
They’ve increased some of my medication but most of the decisions around ensures and leaves etc will be made in an MDT meeting tomorrow.
They also discussed the possibility of moving to a different hospital until I go to cygnet in May but I would rather stay where I am.
I also put requests in to see my dog and go out for my birthday. There’s a guide dog on the ward at the moment and it’s so nice to be able to be around and fuss a dog again.
I’ve really struggled the past few days but after our meeting I’m feeling a lot calmer and more okay about everything.
Right now I’m laying in a hospital bed with an NG tube up my nose. I have no choice in it, it isn’t just an NG tube but an NG bridle meaning it’s tied to the bone at the back of my nose so I can’t pull it out. I have no choice but to be fed, I’m on a Section 3.
Five times a day the nurse comes in with a bottle of feed and syringes it down my tube whilst two people hold my arms. I feel out of control, as though recovery and weight gain are being forced upon me…which I guess they are.
I dread feed time, the moment I see the bottle my heart races. Watching her pour the gloopy, milky liquid into the cup engulfs me with panic. Then seeing that liquid being sucked up the syringe makes me nauseous. I want to runaway, I want everything to stop. Then the syringe gets attached to my NG tube and the thick liquid glides through the syringe, through the tube and into my stomach. I can’t feel it. I can’t taste it. It makes me want to tear my skin off. It makes me want to be sick. I hold in my tears throughout the whole process.
Afterwards I feel so uncomfortable, I can feel the rolls of fat on my belly and my double chin, my thighs thick as tree trunks. I fear the weight gain and I have no choice but to sit there and go through it. There’s nothing I can do about it and that’s what scares me most. I’m not in control.
Okay so it’s been a while, I spent 8 months in a secure unit with my weight dropping and my mental health declining, then in December an eating disorder nurse from my home team came to see me at 8am in the morning. I remember being woken at 7am and having a shower on a chair because my legs would not stand and then being whisked off to the relaxation room to see her.
The nurse wanted to admit me to a general hospital for refeeding but I refused as it was so close to Christmas and I just wanted to be where I felt settled for the festive period. That night I was driven back to my home county and admitted to a general ward. I felt like I was living in a nightmare. I had an NG tube inserted and was started on a feed straight away, drips were in my arms and blood tests taken.
A month later, here I am, still in the same bed, still being fed through a tube and struggling enormously. I feel fatter with each day, the sips of ensure are getting harder and not easier. The plan from here is to go to an eating disorder unit in London which I’m super scared about. I don’t know any more. This battle is hard.
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.