Around one in four people in the uk will experience a mental health illness each year. Whether mild or severe ,short or long term, these can be scary, upsetting and soul destroying . Especially if you can’t access help to recover from or manage it.
Five yrs ago , I was admitted to a psychiatric mother and baby unit to begin my recovery from a postnatal mental illness. I had such catastrophic anxiety that I couldn’t be near my child, dress myself without help and became partial to running into the street a la a wild animal screaming ‘I am trapped in the world I am trapped by the clouds take me away please’ . One of the worst memories of my illness however was the need to travel 200 miles across the uk to access treatment as no one in my area knew how to treat me and there were no treatment options available.
Thank god we did travel and get me into a specialist psychiatric mother and baby unit because if we hadn’t I would be dead. My son would have no mother. And this is not good enough. Getting treatment shouldn’t be a cruel game of lotto , depending on where you buy your ticket but it unfortunately is in the uk. It’s as though you need to ensure you aren’t hit with a mental illness that can’t be treated where you live . Maybe the government could make treatment scratch cards ? Three matching hospital icons and you’re a winner! The papers could come and take your picture with you dressed up in a hospital gown with your antidepressants in your hand . Ooh lifechanging !
Prior to me getting ill, the 89 year old local legend that was scooter lady, complete with gold lame jumpsuit , blue permed hair and a 50 yr old toy boy balancing on the back of said scooter was the local talking point as she zoomed around and then the lady who lived to the left of us who used to hang out of window between 11-1 everyday throwing frozen fish fingers into her garden for fun was a close second. But they were knocked off their platforms of fame by me , Eve , the girl who had a baby,who regretted it, took all her clothes off,tried to climb out of a window and then eventually was diagnosed with postpartum psychosis.
And I’m all singing and dancing recovered now. Which is a good thing as experiencing a mental illness is the single most terrifying thing I have ever and I guarantee will ever face in my little life. And this life is one I hold so precious as it’s one I seriously considered ending. The day I went into the unit is the day I announced to my partner john that I wanted to die and I meant it.i could not face the endless feelings of terror,not wanting to sleep at night because I feared the fear I would feel when I would wake up in the morning and I simply couldn’t cope with the prospect of battling these feelings forever.i couldn’t live for another 60 yrs feeling like this as I couldn’t even get through one day at that point.
I was very very ill.I wasn’t only scared of my son, terrified at the sudden realisation that he was here forever and there was no running away from that except through either adopting him or me ending my life but I was also confused. I thought I was floating , I woke up thinking I was in a coffin, I was convinced at one point that cling film was over my mouth stopping me from breathing. All while my newborn son was lying there needing me . This was the most important time in my life, his life and our families life and I was experiencing the worst possible time, so bad, you couldn’t make it up.
I needed help. Urgent help and so I went to the doctor a couple of days after my son was born to say I was feeling odd.i had flashes in front of my eyes and felt very scared of something. The doctor said, let’s wait and see how you are in a week. I went back this time with john who said I was acting odd, pacing up and down the living constantly and wouldn’t look at the baby. ThIs doctor said I must be tired as motherhood can be draining “sleep when the baby sleeps” was uttered to me and I was told to jog on in a more clinical , fake smile way which I think actually meant , you have just had a baby , deal with it , I have 57 more patients waiting to see me me bye bye.
For the next six weeks, I went to see a gp approx three times a week,joke I do not. I was honest about my feelings and john was continually saying ‘she is saying she has made a terrible mistake in having a child,she tried to climb out of the window to get away for the walls in the house,I had to carry her in the house after she ran into the road with no clothes on and she thinks she is trapped in the world’. Little game of mental health roulette here … Do you think the docs said a) what the dickens, get this woman to the hospital and some specialist mental health help straight away or 67) make a cake and put some mascara on and shown the door? Bingo bango, if you chose a – I appreciate that but it’s a shame as it was wrong. Doctors told me I was fine and to go home .
We hit the realisation that no one could treat me for my illness as it appears if you live where I do, there is no specialist perinatal support. That’s good isn’t it . So we got on the train and travelled the 161 miles to Nottingham, where we had found out there was a unit and where johns family live , complete with our five week old baby, me wandering around muttering ‘I can’t look at the baby,can’t look at the baby,can’t look at the baby’ and the pet hamsters, little elvis and turnip. As we walked into my in laws house I moved their armchair into the middle of the room. As much as I would love to say that I secretly yearn to be interior designer and I moved the seat to get the ultimate feng shui in the room , this is wrong. I wasn’t trying to ying and yang the energy to harmonise the room. I have no clue why I did it but I did and then sat in it and demanded an ambulance be called to take me away from the terror.
A week later, I woke up in the night and john found me sitting up in the dark,staring into space.I started scratching myself on the face and said I felt like I was in a coffin.i said I wanted to die and didn’t know what else to do. John phoned nhs direct who advised we went to an out of hours clinic to be seen. It was probably about 3am , john couldn’t drive then and the baby was crying. John woke his dad up, joe was bundled into his car seat and I sat slumped in the car in the front seat as I didn’t want to be near the baby.in my pyjamas and a pair of flip flops.
We waited ages and eventually were seen by a lady doctor. She didn’t look at me once during the consultation, spoke to john almost the entire time and just stared at her screen , tapping away on her keyboard. John blurted out everything I had been saying and doing and I was rocking back and forth. Face at the screen she asked if I had planned my own suicide as yet and I said no. Wrong answer, I didn’t win the mystery prize which I had hoped would be admission to hospital. No no no. The million dollar drop question had been answered incorrectly and she delivered her response. “As you haven’t planned your own suicide , you are low risk. Go home get some sleep,things will be better in the morning .” She opened the door and waved us out. Is this the time to take an ,ahem, mental note? Note to self, next time I am too scared to breathe because I’m frightened of living , I will sit down how I plan on ending things. Should I start researching ? What about if I show the doctor the plan and they critique it? What if they say, nice try but not good enough, there is no way doing that will end your life.come back with a better plan and proof you have tried to action it and now were talking! Back to the drawing board for me on that one then.
The next day is when I totally flipped my little lid and john had had enough of it. Not of me , though he probably had at that point , who could blame him, but with the total lack of anyone knowing how to treat me. He took me to psychiatric outpatients and refused to leave until I was seen. Within the hour I was admitted to a mother and baby unit and my recovery began.We stayed in Nottingham for a few more months while I got to the stage where I could be on my own with joe and then made a move back to London. I worked very hard to get better, I did everything that was asked of me . It wasn’t easy it was actually terrifying. I was scared to be near my own child and that’s the biggest thing in the world. But I worked hard- I had to spend thirty seconds a day on my own with him at first,then walk around the garden, then walk down the street with him. I had a few public meltdowns at the postbox ten steps from my in laws house as fear struck me . But, I did it and was so pleased to be going home. And I was proud of me. And rightfully so.
So, when the unit agreed I could go back to London, they wrote lots of very good explanatory letters to my local mental health team, saying they recommended therapy for me. Coming back however was problematic – as soon as the mother and baby unit discharged me from their outpatients and my care was taken over by the local mental health team in London, things turned sour.
I still to this day, over five years after my son was born, haven’t been seen as an outpatient at my local London mental health team.I was seen once after john called them to try and set up outpatient care but it was never set up.I don’t need it now, I’m better, but give me strength. This is ridiculous. This was my life in their hands. The mother and baby unit sent numerous letters asking for me to have outpatient care – but this never happened. I was very lucky that the mother and baby unit agreed to keep me on as an outpatient for a year due to the fact that the team in London basically filed all the letters about me in the bin but this meant I had to travel up there once a week to see the doctors there. This was a massive expense to us as a family , around £200 a week, but one that was essential to ensure I was fully supported while my recovery was on-going.
Before this happened though, on our return to London , I went to the doctors clutching my notes from the mother and baby unit. They had all the info on the doctors needed. “We recovered Evelyn is referred for CBT as soon as possible to build on the good progress she has been making while in the unit and on her discharge”. I saw a GP. I’ll call him Dr Baldy Head. I crept in with Joe and started talking. “I , erm, I haven’t been well. And erm, I felt really low when I gave birth and then started to have all these weird thoughts and feelings and basically cracked up. And I saw lots go doctors here and no one knew how to treat me because it turns out I had postpartum psychosis . So we moved to Nottingham and I registered temporarily with a GP there and went into a mother and baby unit. We were there for four months and we are back now and the psychiatrists there have written this letter to show you the medication that I’m on and to refer me for counselling”. Baldy Head took the letter off me, scanned it flicked it with his finger and scoffed. Actually scoffed and said “and you expect me to do what with this?”. I started crying. I didn’t want it but I felt so embarrassed. I’d just told him something that was really difficult to say and he just made me feel like a child on that god awful Super Nanny programme. I felt like I was sat on the loathesome naughty chair as he said ” who am I supposed to refer you to ? It says you are on tablets so wait for them to kick in”. I said but they have kicked in and how I am now is because of the meds. Four months ago I couldn’t look at Joe without feeling cold all over and cemented to the ground with fear. Now, I’m nervous and scared but I’m getting through the day.I just need to learn some coping techniques. That when he said ” women become mothers, that’s what happens young lady. Perhaps you should have thought of this before you got yourself pregnant”. He handed the letter back to me , laughed and said “refer you for counselling ,is that what I’m here for” and said we are done here. Thanks doc. Next time, I’ll cross my legs and chew on some smarties to ensure i never get myself in this situation again.
I talk about perinatal mental health as it’s what I suffered from but issues around treatment aren’t just in this field – it appears people with illnesses that fall into the mental health bracket struggle to get help more than if they were to have a physical illness.
There are currently 17 specialist psychiatric mother and baby units in the uk equalling 125 beds. If you think ,over 1400 women a yr in the uk get postpartum psychosis and this is deemed as a medical emergency and mothers can be treated in the units. Combine that with the amounts that get other perinatal mental illness that requires in depth treatment and you’ll see this isn’t a lot of beds at all. I got an e for gcse maths but even I can work out without the use of a calculator that we are a few beds down. There is no unit in Northern Ireland and over the last few yrs some units have closed. But there are still lots of ill women. Tis does not make sense.
There was a recent report from the Maternal Mental Health Alliance that revealed that “more 1 in 10 women develop a mental illness during pregnancy or within the first year after having a baby. If untreated, these perinatal mental illnesses can have a devastating impact on the women affected and their families and that In the UK, mental illness in pregnant and postnatal women often goes unrecognised, undiagnosed and untreated.”
They created a map which showed how ridiculously patchy the current provision of services is. The precise words about this are ‘This means a postcode lottery determines whether women receive the care they need or not’. Have a look. It’s not coloured in red because it’s a fabulous colour. It’s almost all red to show where there are no services – http://everyonesbusiness.org.uk/?page_id=349
This is beyond ridiculous. I have now joined up with charities and others with lived experience of perinatal mental illness to form the perinatal mental health partnership and we are creating an awareness campaign. As a result if my work in this, I now get to go to lots of conferences and see lots of medical bods saying how wonderful things are . Yes, having been to approx 47 mental health conferences this yr where I have met countless nhs chiefs and leads in suits nodding with a fixed smile , I am aware our government are cash strapped. I have a few in tact brain cells that refused to budge with the illness. I’m stubborn like that.i know we have no money as it’s all gone on duck houses and moats and pay rises to people who don’t really deserve it . However , have we really reached that ludicrous point where people actually have to plan their own suicide or fail at the deed working before we can offer them any help??? This isn’t masterchef , it’s not a gameshow,its not winner takes all but it feels like it. And I’m shit at quizzes, I always lose. Surely, in the midst of pathways and processes there could be a fairly simple overall, hello doctors, please don’t chuck a patients mental health symptoms in the dustbin and leave them to rot which will eventually mean they disintegrate into nothing. If someone says I am feeling so low I can’t see anyway out, do something.
If I went to the doctor and said erm, my vagina smells bad and I’m worried about it , I doubt the gp would say, ooh, why don’t you hang a sprig of lavender off it, let it breeze slightly in the wind,spritz it with a bit of air freshener and then say and we can’t help you anymore until you have reached the point where you have ripped said vagina off and flushed it down the toilet. Thankfully, this particular scenario hasn’t afflicted me and I’m not sure how to attach lavender to my lady garden , and how on earth would you do your jeans up but you know what I mean.
I was prodding my boobs one sunny day two years ago. They are massive anyway and have dribs and drabs of milk in them and seem like one big mammory as it is but I felt a lump previous prodding investigations hadn’t found. Hmm, this means I should book a doctors appointment I said to myself. I phoned the docs and was given an appointment that afternoon – “can’t take risks with these things can we darlin’ ” the receptionist told me. On seeing the doctor and her have a prod, she said , ya there seems to be a lump but I’m no expert on these things so we must send you to the breast cancer clinic urgently to get you seen. She wrote out a fax in front of me ( a fax , in 2013) and helpfully put the words “suspected cancer” in big bold black capitals at the top “so no one misses it”.
I was called into an appointment the next day and had all sorts of tests and spoke to lots of experts. I was given the all clear in a fairly short space of time and I left the experience feeling very thankful for our wonderful health service , which it is and the doctors dealing with a possibly awful situation so quickly. Even more startling though as this was six months after I had gone to hospital after having a relapse of really bad anxiety when I found out I was pregnant again. I was treated in such a slap dash appalling way that I had lost all faith and bang my head on the table of all the nhs chiefs who, after people kill themselves because of a mental health problem say “lessons will be learned from this”. Lovely words chief but I’ve heard them oodles of times. When will these lessons be learned? Maybe they should be learnt in school for the chiefs of the futures so it’s embedded in them.
I found out I was cheggars again one boring office afternoon when thought I had a wee infection and the gp wanted me to do a pregnancy test before I was put on antibiotics.i announced to my friend Julie who sits opposite me , I’m going to get a brownie from pret and then I’ve got to piss on a stick to make sure I’m not with child. Oh how we laughed! Pregnant , imagine , lol!!!
But oh how I wept when, brownie in mouth , pants round ankles, stick wet with wee , I saw two blue lines appear. My three years of recovery from anxiety from that very second kicked in again. Another baby , another baby,no no no. I can’t do this. I’m well, I’ve got used to having joe.
Within a week, I had developed such a terrible fear of being pregnant, John found me slumped next to the radiator talking to myself having called the Samaritans. Who were fantastic. I was back in the fresh hell I was in after Joe.I was in such a state ,I had been signed off work and was finding being near joe too much to deal with. In the midst of all this , we were then told the pregnancy wasn’t forming properly anyway and actually had to be removed . It took three attempts to remove it as it was growing in such an odd place and the three operations took six weeks altogether . By the end of this awful time of finding out I was pregnant,not wanting it, to finding out I couldn’t have it but knowing it was in me , growing to think actually I think I do want to have it ,to then having to have three termination attempts , I had completely lost the plot. And ended up in accident and emergency again.
What a fun day that was . We arrived at midday and I left at 4am the next day- having received no help. Casualty had no idea how to help me , after spending four hours there and sent me to the local inpatient local psychiatric unit. We saw lots of people with clipboards saying in whispers ” what are we supposed to with her” and the fixed smile brigade came out again. “Let’s go home and get some rest shall we Evelyn,will all seem a bit better in the morning , promise”. No no no no no no no no,I wasn’t leaving until someone helped me.
John had to leave at 5pm to get our son. He was in tears leaving me , I was in tears him going but was assured the duty psychiatrist would see me ‘soon’. I then sat on a chair of the foyer of the unit for twelve hours. Twelve hours.i am prone to exaggerate but there is no need to now as it was that bad. I was spoken to three times by staff , where they informed me they were sure I would be seen at some point and also to say “do you think you could stop crying , you are upsetting the staff”. I.do.not.joke. I had a lovely conversation with a young girl who had tried to take her life a week earlier – a beautiful clever girl who simply said ‘I don’t know why I tried to do it , I just don’t want to be here in this life’ and a man who told me he was Jesus. I wish he had been – he could have saved me.
The duty psychiatrist turned up 11 hours after I got there and spent less then five minutes with me. Was told they didn’t have the facilities to help me and they didn’t know who could but they would pay for my cab home. And that was it. I arrived home at 4.45 am and four hours later we were on our way to Nottingham again and went straight to casualty. Within two hours I saw a psychologist who arranged for me to have emdr therapy, I was put back on meds and my journey to full recovery started. Again , I had to travel to Nottingham every week for my emdr and thank god I did.it saved my life and it made me truly recover. Thank The Lord . The Lord who runs Nottinghams mental health services.
I was in the audience for the brilliant Victoria Derbyshire programme a couple of weeks ago about mental health. Check it out on I player if you haven’t seen it – almost two hours of brave people from all walks of life, all backgrounds, varying professions, discussing their mental health. While they were all doing this, I was adjusting my boobs as the photo above shows. I also delivered a gold medal hand up in the air performance. A common theme was the struggle for treatment that doesn’t seem to happen to people with a physical illness. And it genuinely seems to be because people think having a mental illness is literally all in your head . Broke an arm? It gets set in plaster to fix it. Small willy ? You can get it made longer! But problems in your head , oh , well getting help for that depends on the pathway of care your area offer and blah blah blah postcode lottery blah blah.or we could just all pull ourselves together couldn’t we ?
Thee was one amazing girl called Jo who made me and everyone else cry with her brave story . I am in awe of her determination and her openness. She had been diagnosed with anorexia and was around four stone. But wait for the bombshell . She got community care with her local mental health service pretty quickly, but it was not until her BMI had dropped below a certain low point that she was admitted for the care she needed. Might as well dear, sorry , I can see you are a bit on the thin side but not quite thin enough to get help. Can you starve yourself a bit more please? This is ridiculous! Jo says. “Why should I need to get as ill as that to need inpatient treatment?” And she is right.
I know there are all these lines around how mental health services are organised in each local area and how this may differ across places. As the NHS say on their webpage ‘This means some may not cover all mental health conditions, or only deal with people of a certain age’. This .must.change. I know resources are a problem, money is a problem but people have problems that need help. Surely treating things before people get to considering suicide is better than them getting to that point. Because if you have planned it , you might bloody well do it which is devastating . And once someone is gone , they can’t come back.
Simon Stevens , chief executive of the NHS says in the Achieving Better Access to Mental Health Services by 2020 report that “Mental health problems are the largest single cause of disability, representing a quarter of the national burden of ill-health, and are the leading cause of sickness absence in the UK.This makes it all the more indefensible that there is such a large “treatment gap” with most people with mental health problems receiving no treatment and with severe funding restrictions compared with physical health….That is why, achieving “parity of esteem” between mental and physical health services is so important for the NHS, and for the nation.
This document therefore sets out some of the concrete next steps we are committed to helping lead over the next five years. NHS England looks forward to working with our partners to deliver this critical agenda” and I hope this indeed plays out as planned.
Getting help shouldn’t be a flip of a coin decision. This isn’t like a supermarket saying sorry we have run out of flapjacks but our branch down the road has some , this is people’s lives and they deserve better.
I have made a vlog of my experience http://youtu.be/Kn6pgSUP5YI