So today after a hugely difficult week culminating in a ridiculously tough 24 hours I finally heard from the community mental health team. I only heard from them today due to the fact that my amazing GP surgery chased them directly again, a month after the referral which was marked as urgent.
The CMHT called me and let me know that they could give me an appointment but the next available appointment is not until Friday 27th March – 2 weeks from now. Once again they didn’t ask me how I was and didn’t even discuss any crisis services even though I know that my GP had contacted them because I was in crisis.
I feel ungrateful but I can’t even be relieved I have an appointment, I can’t even be thankful that they called because 2 weeks in my current state of mind is an eternity and they have no idea how absolutely awful it has been and continues to be. If my GP hadn’t called them today I doubt I would of been given the appointment on the 27th March and I can’t help think what might have happened if I had been seen 2 weeks after the referral.
For now I am doing an hour at a time. This morning I struggled to get out of bed, I grabbed a pair of jeans as work attire and clothing decisions were completely out the question. I only made it to work for 2 hours. The anxiety made me physically sick, my eyes were playing tricks with me and the depression physically hurt me, every bone in my body ached and I just wanted to stay in bed. The guilt and sense of failure at having to leave work after 2 hours was huge but I had battled for over a month with not one day off sick and I just couldn’t do it today. I am hoping that a weekend of rest might help a bit.
So an appointment and so called help is far too late and so far in the future that it isn’t worth thinking about. My focus at the moment is the next hour and hoping for some rest. I am lucky as have enormous support from family and friends – what about those people who have no one and where the system is failing them too?
Nearly a month ago my GP re-referred me to the Liason Intake Team part of the Community Mental Health Team (CMHT) in my local trust. Even though I am bipolar and have been receiving mental health treatment for 17 years I was discharged a couple of years or so ago and therefore my GP coordinates my care. As I have mentioned before she is excellent but felt last month that I needed further support.
I was promised previously that if I needed CMHT intervention that it would be easy to access, that I wouldn’t need to wait for ages or explain to loads of people a summary of the past 17 years. Each time I need a referral back to CMHT I come up against similar challenges so this referral is sadly not a great surprise.
A month on in this referral I am no nearer any support and in fact a conversation I had with the CMHT yesterday just left me exasperated and added to the mental distress that I am currently experiencing.
What is incredible is that when I called yesterday to chase the referral I was given no update, no apology or understanding regarding the wait and worst of all no one asked if I was ok or how I was getting along. They couldn’t get me off the phone quick enough – this is far from quick easy access to the CMHT.
In addition to that, I know I will have to go through an assessment before any further support is offered and the likelihood is that there could be another huge gap between assessment and any support being implemented. Even worse is that after assessment and all of this uncertainty I could be referred straight back to the GP without any on-going support.
I am no better than a month ago and the poor mental health care does have a huge negative impact and certainly increases my distress. As I get slowly worse I find it harder to speak to people I don’t know and so the well organised approach from my doctor of referring when I reached the point I did will slowly become useless. It also means that I am more likely going to end up accessing crisis care services in unequipped Accident and Emergency departments possibly in acute mental distress.
I have done what I can to help myself, especially over the last few weeks including paying for some online counselling to try and get some consistant care. I hope that when well this will become another useful tool in my Wellness Recovery Action Plan (WRAP) toolkit but at the moment I am just grateful for the support even though I am paying for something the NHS should be providing.
If any healthcare providers read this can I ask you to ask the question “does someone with a history similar to mine really need another assessment and surely some support could and should be implemented quickly?”
I have blogged a few times on my personal experiences when attending accident and emergency departments in a mental health crisis. Every time I have attended, the experience has been hugely unhelpful and in some cases worsened (if that was even possible) my mental health distress.
This week I have seen again many cases of people on Twitter who have been turned away at accident and emergency, spoken to people who have no knowledge of mental health or even sent away with tablets whilst being suicidal.
As I understand it not all accident and emergency departments have liaison mental health teams attached to them and there is also the added problems of different NHS Trusts operating different services in the same area. In my trust for example the accident and emergency is run by one trust and the mental health services run by another. This setup only seems to add to the poor experience and creates a culture of relinquishing responsibility by both parties involved.
I don’t really have any answers but a few things I try and do when I am out in the impossible position of having to go to accident and emergency are:
1.) Try if possible to go with someone – I do though understand that this is often not possible and so apologies that this is just another unhelpful suggestion.
2.) We have triage system at our accident and emergency – I always try and ask at this point what the mental health liaison care is and also whether there is a dedicated area to wait. It is important that the staff realise how distressing it is to wait in this environment when mental health distress is so high.
3.) I ask for a waiting time – they will know one if you went in with a broken arm so this should be no different.
4.) if possible I always take with me a copy of my crisis plan which is useful when by the time I get to see someone I am past being able to coherently manage to communicate much.
5.) During this last episode I have made the decision that I am not going to go to accident and emergency unless it is absolutely necessary so therefore my GP has referred me back to CMHT services. It is worth getting to grips with the system within your trust so that maybe some other care options can be investigated.
Sounds simple!!!!! BUT …….
The problem with all I have said above is that by the time the need for accident and emergency arises the possibility of being able to calmly put in place any or some of the above is pretty small. This therefore illustrates my point that the system as it stands isn’t right. It is putting more lives at risk, hugely endangering patient safety and going nowhere to improve parity of esteem which is supposed to be a priority.
The staff in accident and emergency often do try and do their best but don’t have the knowledge, resource or time to be able to help. With Mental Health beds being cut so drastically this situation can only get worse. Even after 4 hours or so in accident and emergency this hasn’t always led to me getting to a place of safety. In some cases even the crisis or Home treatment team I have referred to have been full and therefore I am left in a worse place than before.
I am unsure of where to go from here in drawing attention to this situation but for my sake and thousands of others something needs to be done.
Not a question I often ask myself and probably not one I should be spending time thinking about when I am not in a great place. However my head is playing tricks with me, putting the worst case scenario at the forefront of my mind and maybe writing this will help in some way.
Tonight I am truly frustrated. I had been seeing a tiny bit of hope and glimmer of light in the darkness. Things were difficult but I had been getting slightly better nights, hadn’t had so many desperate thoughts and was able to enjoy more than I had done in a while. I wasn’t as hopelessly terrified as I had been either.
This seemed very short lived as my panic attacks have increased and I have taken what seems the compulsory 3 steps backwards after 2 going in the right direction.
Thoughts keep coming to the forefront of my mind where I find myself never getting any rest from the illness, not having the long periods of wellness that I have been used to and the possibility that maybe someday I will have to contend with continuous symptoms of some degree without any rest or wellness. This is absolutely terrifying me and whilst it is probably not productive to be thinking of this right now I have always tried to be realistic and so feel I need to think things through.
I worry that I will have to rely more on people and I find this hard as feel a burden as it is. I like to be able to help others and get concerned that this won’t be possible in the future.
I currently manage to work full time, I enjoy working and don’t want to have to give up and with that comes the prospect of having to take more medication – regular medication is something I don’t use due to the fact I want to continue to work. I have such poor tolerance to medication and bad side effects that it makes it impossible for me to work and take it. Therefore I use meds only when absolutely necessary and am lucky enough to have reasonable adjustments in place to manage this when it occurs.
I know that at the moment I am coping as well as I can do and I hope that the CMHT referral might give me an opportunity to discuss these fears. I am trying to hold on to the moment right now, keep as positive as I can and not look too far ahead – if only my head would try and remember that too!
TW – talks about feelings of desperation, please be careful if you are likely to be triggered by this.
About a week or so ago after a great couple of weeks I started to feel the waves of anxiety again, the desperation was mounting as I fought the feelings and thoughts that I was becoming unwell again. I had been so well during the early part of January, work was great again, I have so many lovely family events coming up – things were looking good, I was enjoying life.
I keep going over and over in my head what had changed – what had I done wrong? All I knew is that I wasn’t depressed as such, just horribly frightened and anxious and what was scary was that I didn’t want to be around to find out if I was getting ill again.
I am aware of my feelings so much more than in the past – I am not sure whether this is always a positive thing or not! It means I can put my crisis plan in place much more quickly, start taking useful medication etc… However it also means I tend to worry more and maybe overthink my feelings and the anxiety has been quite a factor in this recent episode.
As the anxiety has increased I have also become quite low, I haven’t experienced the very painful depression that I did at the end of last year but I have been very low indeed.
I am also so angry, angry with the mental health system as what I need most is some consistent support so that I can talk to someone that knows me well without going into a massive long history. I am feeling so guilty for worrying family and friends that I bottle things up and if I had a mental health professional to talk things through to this would definitely help. Yes my GP is supportive but 10 minutes every 2-4 weeks and maybe 5 minutes on the phone in an emergency is not ideal. My GP is also reluctant to refer me to services as the system is so stretched and I have had such negative experiences in the past and my GP is doing what she can to keep me well.
A and E is also my crisis option however there is no way that this will be an option I would choose as just too frightening a prospect – it makes me so cross that the options available to me are in fact likely to make me worse.
I recently visited some amazing examples of mental health care within the trust where I am a governor and whilst being such a positive experience this also made me sad as I so badly need just a small amount of support like this.
I am also very angry with myself and blaming myself for feeling like this. More recently I have been able to be angry at the illness or even the system, but being angry and blaming myself seems like a huge step backwards.
I am angry that I have let myself look into the future too much and not concentrating just on the next day or even hour. And yes I am angry with myself for having destructive thoughts, ones which have frightened me so much.
I am trying this evening to concentrate more on the positives and take things a little more slowly and remember that I have felt like this before and changed – it is just so hard and scary especially when I am doing all I can to stay well.
So today was the day I went back to work after Christmas – not just after a 2 week Christmas break but also after a depressive episode and one which meant I hadn’t worked full time since early November.
Work has been massively stressful due to many different issues and I can actually say that very slowly some of the difficult situations are getting resolved and today I enjoyed some aspects of my day. I can’t remember the last time I could say that I enjoyed part of a day at work. These stressful circumstances only helped to exacerbate the depression I had sunk into.
It had been hard over the last couple of days – it certainly wasn’t completely plain sailing – I experienced awful anxiety the night before and my sleep was affected by this. I also had nightmares and the snippets of depression that were still occurring came slightly more regularly and were more intense.
I struggled to get up this morning but I did it and decided that the only way I was going to get through the day was by taking an hour at a time and by continually telling myself that I was ok at my job.
I suppose that today wasn’t very taxing – not many staff were around as they were involved in training, email traffic wasn’t sky high …. however it was a good introduction and most importantly gave me back some confidence and a boost and proved that I was getting back on top.
I suppose that over Christmas I had started to get well again but I knew that today would be the deciding factor to see how far I had come and I think I did ok!
I realise that it won’t be plain sailing and that it will be a bumpy return to where I was say in the summer – but I have turned the corner and I am so grateful to all who have helped and supported me.
I am sure that many people have been moved to write a blog about the very sad news of the death of Robin Williams as writing things down can definitely help people and it certainly helps me.
From a personal view point as someone who lost a very close friend to suicide less than 2 years ago it brought back many painful memories. I also know what it is like to be suicidal and have tried to take my own life during some very dark moments. The pain of depression is something I struggle to put into words but it is an illness and needs to be recognised as one much more than it is at present.
One thing though that has struck me about today’s news is the amount of people who have commented on what Robin had to be depressed about, or what a shame that he didn’t seek help earlier etc…
The truth and sad reality is that it doesn’t matter who you are, how much money you have, how famous you are, how wonderful your life seems to others – depression and other mental illness can affect anyone at anytime in their life. It might be a long hard struggle over many years, an episode as a child or young person and then nothing or it can hit someone later in life.
The other important thing to remember is that high profile stories like today’s tragic news make headlines but many people lose their lives to mental illness everyday and with on going cuts it mental health services this hasn’t got much hope of improving.
Rest in Peace Robin Williams and all those who have lost their lives from mental illness.
Just to clarify this obviously doesn’t apply to all psychiatrists as I know there are some excellent patient focused professionals out there but this has happened to me twice and I am hearing more and more stories where this is occurring.
In my experience I have only found out about the change in diagnosis by receiving a copy of a letter which was being sent to my GP. Each time I have battled to get the diagnosis reversed and been successful but I shouldn’t have to do this and neither should anyone else.
I realise that sometimes patients may be distressed and therefore in my opinion it is even more important to ensure this sort of subject matter is communicated at the right time and if necessary while the patient has appropriate support.
The most common occurrence of this seems to be in patients who have a bipolar diagnosis and then suddenly with no warning they find themselves with a personality disorder diagnosis. In some cases this might be correct but in quite a few this isn’t and I have felt in the past that I was given a new diagnosis as an excuse for being discharged from the system.
As I said I was able to get my diagnosis changed back but others aren’t so lucky and therefore people can be left without vital treatment and support during really difficult episodes.
The other alarming factor in this is that people who are bipolar and able to argue their case or stand up for themselves are seen to be obstructive and unnecessarily angry and this can be what a new diagnosis is primarily based on. This in my opinion is very short sighted and in some cases dangerous.
I would like to hear from people who have experienced this and also from professionals so that awareness of this can be raised.
Lets fight to ensure high levels of patient communication within mental health.
So far the summer of 2014 has been kind weather wise. Long hot days and an opportunity to wear some of those clothes that might not venture out of the wardrobe for 48 weeks of the year! I love the sun, it does help my mood and I also love wearing summer clothes but I dread the questions and stares about my self harm scars. I started self harming when I was only 14 & only stopped a year or so ago and I have many scars on my arms, legs and even my stomach. My legs are actually not that noticeable but my arms are and so I often wear long sleeved tops in certain situations when it is really too hot to do so. If I do wear short sleeves I am constantly worrying about answering difficult questions, offending people or triggering others.
I run a Brownie pack and never wear short sleeves and often boil as a consequence but children are inquisitive and I have had enough of difficult questions.
Over the past few years I have become ‘braver’ but at work I always wear a cardigan or a jacket and most of the time this is because I don’t want others to feel uncomfortable but probably I am embarrassed even though I know this is part of who I am. Maybe a question would get a conversation going and help someone else in the future?
I suppose with time the scars will fade more and I will become more comfortable and hopefully there will be summers in the future that won’t be so difficult.
As some of you may know I am dealing with huge increased stress at work at the moment and obviously with a diagnosis of bipolar I am scared I am getting ill or may get ill in the future. I am though lucky that at the moment I am very well and so I have been able to put some strategies in place to safeguard myself and to also go someway to stop being so frightened.
One of the most important things I have done is to recognise the symptoms of stress and deal with these as they occur. I have felt my anxiety rise which is probably the most frightening symptom as I often experience horrendous anxiety when I am ill. I have used the same coping strategies as I do for any anxiety I experience and given myself praise for coping with the anxiety (something I wouldn’t do if I was ill)!
I have recognised that stress is serious and just because it isn’t a bipolar episode I still need to take care of myself and recognise the symptoms. I have kept in constant contact with my doctor and asked friends and family for their reassurance, advice and support.
I have also drawn on support at work. Whilst certain people or situations have caused stress I also know that the organisation have procedures and policies to assist where necessary. I have done everything I can to make the time at work easier and drawn on HR support, team support and support of my close colleagues where I can.
I have used my WRAP which really comes into its own in times like this and it is even more important to take care of oneself and the mundane eating, sleeping etc are vital. Last week I wasn’t sleeping that well because it was hot and so I took something to help me sleep after just a couple of days as I knew and recognised that sleep was even more important during this period of stress.
Last weekend has also given me huge confidence and something to remember during the week that has followed. I took 16 Brownies to the Zoo, helped lead a Church parade and Messy Church and I felt fantastic! If I was ill the whole weekend would of been a massive struggle and at difficult times during this week I have remembered this. I have found that because I have a diagnosis of bipolar certain people have said I must be experiencing a bipolar episode when I have raised concerns over the stress I am under. When this has happened this week I have been able to remember last weekend and even tell people what I did and how I felt which has given me and others the confidence that I am not experiencing bipolar symptoms.
It hasn’t been easy and I am exhausted, emotional and sometimes physically unwell but I am taking a day at a time, doing all I can to take care of myself and can draw strength from the last few weeks.