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300 days without depression…

~ katcopley ~ 3 Comments

To be honest if anyone had said to me on the 28th December 2015 that I wouldn’t experience any depression at anytime during the next 300 days then I just wouldn’t of believed them. 

Last year was a pretty difficult year for me and at times the depression I experienced as part of many prolonged bipolar episodes was deep and painful. At times I wondered if I would ever get through.

I am not saying that the last 300 days have been a bed a roses but I can honestly say that I am coping pretty well and every month I seem to be able to discover a new strategy or find someone to chat to who helps me see something in a slightly different way. I am still plagued with anxiety and recently over the last month or so this has been pretty unbearable. Panic attacks have woken me in the night and some days increased stress at work have meant too many escapes to the toilets to hide away from everyone.

I am often asked what is different? What has changed? How have I managed to stay so well for so long? In someways I would love to give an answer,to share the newfound wellness knowledge with everyone and maybe help 100’s of people have 300 days free from a depressive episode but sadly it isn’t that straightforward. 

Bipolar is an unpredictable illness, one which could quite easily catch me unawares at anytime, anyplace. I am sure that some of my coping strategies do help and that I can’t be 100% sure that if I stopped all the positive changes I have made over the years that I would have had such a stable period recently but I need to be realistic.

To be totally honest I am really scared about having a period of deep depression again and the recent anxiety and stress has caused me to worry more about this. I think that instead of dwelling on the possibility of getting really ill I am actually trying to strike a balance so that if/when this happens I can deal with it as positively as I can, although I am also aware that depression alters the way I think about everything and therefore postivity is often hard to find in these circumstances. 

I also want to, if possible, look forward to the next 300 days and the new challenges, life experiences and good times that might be ahead and if I can have the next 300 days depression free then that would be amazing but if I do become really unwell I will try not to give myself too much of a hard time about it, I want to give myself the time and space to recover and let people help where they can. 

One of the most important messages I have communicated to myself in the past year and to others is that mental illness is not a choice, sadly this is still a myth that needs to be dispelled in so many areas of society. 

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It has all gone downhill so quickly … But there is no mental health support to be found

~ katcopley ~ 5 Comments

So less than a week ago I wrote on my way home from a weekend away and things were difficult but not impossible. Today I drifted well into the impossible phase of this bipolar episode – however I certainly kept fighting. I find it frightening how I can wake up in utter blackness – it takes even longer than normal to see through the morning fog (Even when I am well I am not a morning person!). This morning it took 2 hours before I finally got out of bed and made tentative steps to work and to what was a fairly active if not difficult day.

I have contacted my GP who is my care co-ordinator as I am discharged from the community mental health team. She has upped some of my medication which I can take over the weekend to try and stabilise me and she will see me on Wednesday. There is no other professional support avaliable.  To me it would make sense to act now before I reach crisis point – but even then A and E is probably my only option and to be honest that is enough to exacerbate a crisis.

I am though, in the midst of the despair feeling truly blessed tonight and thankful that family and friends are providing me with so much support and love. This makes me think about those without a support network such as mine, those that are living alone with the pain of mental illness and those that like me have limited professional support but without the friends and family I am so lucky to have. 

Tonight I am angry – angry with bipolar, angry with myself as depression plays with my mind and so of course this must be my fault! But also angry with the system, the system that seems non-existent to so many, that doesn’t have parity of esteem with physical health care and the system that waits until a crisis before acting and stepping up to help. Even then it has severe limitations.  

All I can hope is that this particular episode of bipolar isn’t a long one and that I remember to take life in small chunks until I feel stronger again. 

Online Counselling – My story

~ katcopley ~ 2 Comments

Nearly two months ago I was pretty desperate and had been waiting 3 weeks for an appointment with the community mental health team (CMHT) after my GP had urgently referred me but I had heard nothing. I was very unwell and felt that my thoughts and feelings were building up like a pressure cooker waiting to explode. I really didn’t know where or who to turn to.  I am lucky as I have very supportive family and friends but it isn’t always easy to tell them my darkest thoughts and when I am in the depths of depression feeling a burden to them is always uppermost in my mind.

I was getting to the point where I knew I needed to get some professional help myself as not only did I need an outlet for my thoughts whilst in this crisis I also wanted to build on my ‘Wellness Toolbook’ for the future. I am lucky that through Twitter and my blog I have met some amazing people who not only offer empathy and support but also have a vast amount of knowledge at their disposal. One such person asked if I had heard of Online Counselling and recommended an organisation to me.  I was immediately interested and went about finding out more information.

The first thing that sprung to mind was the accreditation it had and whether the site was reputable and so I was pleased to see that it carried the logo for the British Association of Counselling and Psychotherapy. I spoke with my family and friends who were sceptical at first but after I spoke to my GP who was very positive I decided to give it a go.  I was impressed by the website, security features and also the options available for counselling which include Skype and Instant Messaging. 

I went about carefully choosing a counsellor and then had an introductory session which was very useful.  I opted for Instant Messaging mainly because the anonymity that it provided at a time when I was hugely anxious was reassuring. I was also very frightened of seeing someone face to face as was feeling completely let down by mental health services and worried that the anxiety caused by meeting a new professional for the first time might be too much for me so this sounded a good option. 

I didn’t want this to replace the CMHT appointment that I think I need and am entitled to ( I am still waiting nearly 3 months on) but I also couldn’t sit back and do nothing when I am so determined to help myself where I can. I wonder whether for some people ( and I realise this wouldn’t be a viable option for everyone) this could be offered on the NHS? I don’t for one moment suggest that it should replace services already on offer but with waiting lists so long this could be a huge lifeline to some people experiencing mental health problems. 

I would also add that I am paying for this treatment myself and well aware that I am in a fortunate position to be able to do so.  Many others I’m sure, would like to pay for treatment themselves due to the lack of NHS services and the long waiting lists but obviously could not afford to. 

This is my first blog on the subject and I hope to be able to help raise the profile of online counselling and the huge benefits for people like myself. 

Revisiting my #WRAP 

~ katcopley ~ 4 Comments

I have wanted to revisit my Wellness Recovery Action Plan (WRAP) for a while but as I have spent the best part of the last 2 months being quite unwell it wasn’t really a good time. I wonder if now is even too soon as I have only had 4 better days and maybe it is too early to look at how I can do my best to stay well in the future but I feel I need to do this.  

I use a fairly standard WRAP format and one which I have worked hard with my GP to put together. This WRAP includes both depressive and hypomanic symptoms due to my Bipolar diagnosis.

To start with I looked at my ‘Wellness Tools’ (Activities I enjoy or that help me feel better) which include:

Spending time with husband & family, Talking to Friends/Socialising, Mindfulness, Going to Church, Keeping a routine including going to work, Using my light box, Reading, Singing, Watching things on TV I enjoy, Listening to radio and music, Doing things I know I can do, Write a blog, Chat on Twitter, Online Counselling, Taking small amounts of medication to help anxiety symptoms, Monitor my sleep & use small PRN if needed even when well.

Closely linked to these is the ‘Daily Maintenance’ (Things I should try and do everyday) which include:

Keeping a routine, Eating 3 meals a day, Getting some rest, Taking regular breaks at work, Resting at home everyday, Reading for 1/2 hour everyday, Have a shower, Do something I enjoy, Keep my mind active, Mindfulness, Get out of bed everyday 

It is then important to identify ‘Triggers’ which for me are:

Tiredness, Emotional events, Seeing people that may of caused me distress in the past, Skipping meals, Too much stress at work, Spending too much time alone. 

I also need to remind myself that sometimes I can become unwell without experiencing any of these triggers. 

If any of these triggers occur and do affect me negatively or I think they might I try and implement a ‘Triggers Action Plan’ which is:

To try and stick to my daily maintenance plan, Call someone on my support list, Practice mindfulness, Remembering it is ok to care for myself.

‘Early Warning Signs’ are probably fairly crucial for me as it is knowing when to recognise them but not to panic about them before they arrive. For me these are:

Not sleeping more than about 4 hours per night, Slight paranoia, Anxiety in certain situations, Becoming very low, Spending too much money, Racing thoughts, Slight Hypomania, Not enjoying things.

If I notice these signs I then try and implement an action plan based on these which is now going to include calling my GP at this stage.  

I did call my GP when I became unwell in February and noticed the Early warning signs. This did help me feel more supported and also enabled my GP to refer me to CMHT – the fact I am still waiting for an appointment 2 months on is awful but if CMHT can get their act together GP intervention at this point is crucial. The other important things in the Early Warning Action Plan are asking for some help from support list to implement daily maintenance plan, Ask people for help and support, Try to have company where possible, Start using PRN – probably promethazine, Talking worries through with people.

When things are getting worse I will often notice some or all of the following symptoms:

Experiencing Depression all of the time instead of it coming and going, Wanting to sleep all day but not able to sleep at night, Anxiety getting worse & shaking some of the time, Not eating at all without prompting, Having thoughts of suicide, Hearing or seeing things that others can’t, Paranoia so bad that I can’t leave the house easily.

If these signs are present then again I try and implement an action plan: 

Call GP and update her that I am in crisis, Try and ensure I am not on my own, Talk with people who are able to offer support, Think about taking Diazepam to control symptoms, Talk to work about implementing flexible working and other reasonable adjustments, Discuss with someone about attending A&E as a last resort but ask for help from support network to do so,  Ask for support in monitoring PRN so that I am safe, Identifying where on the scale my suicidal thoughts are. 

This is obviously my own plan and is what works for me. I find it helpful to carry my WRAP & care plan from the GP with me to show to other professionals I might meet. This WRAP helps me to feel more in control which I find really important. I constantly re-visit this WRAP and share its contents with those involved in my care. It has also proved useful at work to ensure I am supported correctly.

When I do finally receive a CMHT appointment I will ensure that this WRAP is my starting point for discussions with them. I need their input to work with this plan so that hopefully earlier intervention can lessen the time I am unwell and the need to attend A&E. 

So I went to A&E & saw the most amazing nurse … a fairly positive visit…

~ katcopley ~ Leave a comment

As during previous mental health crisis’ I made the difficult decision to go to the local Accident and Emergency department yesterday. It seems pretty ridiculous that this is the only way for me to access crisis support when experiencing a bipolar episode but sometimes I can’t see any other way. I had also waited nearly 2 months after my GP refered me urgently in early February and I had experienced the toughest weekend.

We decided that yesterday morning might be a sensible time to go but it doesn’t take away the huge anxiety that is associated with that place and also reminds me every time of the most horrendous recent experiences that I have had there.

On arrival there is now a process of ‘streaming’ to ensure that people are directed to the relevant department. One thing that I immediately noticed here was that the ‘streaming’ nurse didn’t say hello or introduce herself.  It is a shame that one of the large London hospital trusts (not the mental health trust) haven’t signed up to ‘hello my name is….’ or if they have that staff aren’t using it which is a shame especially for those facing patients walking through the door.

She spent less than a minute with me, just writing down my surname, date of birth and handing me a piece of paper to take to the main desk. After checking in we waited in a slowly filling up waiting area which I would find anxiety provoking at the best of times for about an hour before seeing the accident and emergency triage. The nurse here was actually supportive and explained that the mental health nurses would be contacted from the other trust to come and see me. She was slightly more friendly than the ‘streaming’ nurse but did have that ‘lets get you out quick’ approach! 

We then waited for what normally is an eternity to see the mental health team. After only half an hour we were pleasantly surprised when a nurse appeared and as we were walking to a consultation room she greeted us warmly, introduced herself and another nurse and was just amazing from the moment we met her.  As usual though she had been given a totally inappropriate room to conduct her assessment in – it had a bed and 1 chair. My friend and I decided to help them out and sit on the bed and they managed to beg a chair from the hospital staff (another problem of having to go to another trust to see mental health staff). 

Once sorted in this rather strange room I was immediately reassured by the mental health nurse and given my currently state that is some achievement. Instead of going through a laborious checklist assessment she talked freely with me and completed different parts of the assessment as she went.  This approach immediately puts me at ease and staff concerned get a much better overview of where I am at the moment instead of just concentrating on receiving one or two word answers to sometimes irrelevant questions.  The other member of staff made notes and asked a few questions which weren’t at all helpful but probably she felt she had to ask something! The senior staff nurse not only grasped quickly the severity of my crisis but also grasped the type of support I so desperately need. She didn’t appear shocked and at every opportunity reassured me and treated me like a fellow human being.  

After about 40 mins she left to speak to a doctor and when she returned she explained that unfortunately the crisis team or home treatment team that it is sometimes called had no capacity.  She had though noticed that I had a Liason Intake Assessment (LIT) on Friday and was pretty sure that they would refer me to the Short Term Intervention team (SIT) so she was able to do that for me there and then and therefore I wouldn’t need to go to the probably rather pointless LIT appointment on Friday. 

I am now waiting for the SIT team to contact me and hoping they do very soon as it is a little frustrating to go through the accident and emergency process only to be still without the support I so desperately need. I am hugely grateful to the nurse who saw me yesterday and proud to be a governor for the trust where she works and impressed that they and obviously she are using ‘Hello my name is ….’. I just hope this isn’t a one off and that the system is slowly improving and that the people I will see during the next few days and weeks will be as equally supportive and professional. 

Received a letter confirming CMHT Appointment – wished I’d never opened it!

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As promised I received a letter from the CMHT today confirming my appointment that had been given to me over the phone for 27th March.  This is nearly 2 months after my GP referred me urgently as part of the crisis plan I currently have.

The first thing that I read is that I have an appointment to see the ‘Liason Intake Team (LIT) Duty Worker’.  I have never received a letter with an appointment that doesn’t name the professional I am seeing.  I find this hugely anxiety provoking and in the many years I have received mental health services they know I need to have appointments with females but yet on many occasions I will be given an appointment with a male either in writing or with the crisis team which always delays treatment further.  Not knowing the gender or name just adds to my distress. 

Action number 1 tomorrow is to clarify who I will be seeing and ensure that they recognise I need to see a female duty worker.

The second issue is the location of the appointment. Under the trust’s policy I know that patients can request to be seen at the nearest mental health centre to them.  This is because the trust made a decision to move services around and therefore the staff have to travel. When I was first refered I made it clear that the appointment needed to be at my nearest centre as I am unable to travel by public transport and there is no parking at the other centre.  Yet again I have been ignored and the appointment is not in the correct place.

Action number 2 tomorrow is to ask again for the appointment to be held at my local centre as requested.

The letter itself comes with a leaflet outlining the services that the LIT team offer. The leaflet makes it clear that this is an assessment. As I have said previously I really don’t feel that an assessment is the most suitable solution for me or in fact anyone with a long term mental health condition who requires ongoing support.

Action number 3 tomorrow is to explain again that I know what support I need and what would be helpful to me. 

The leaflet also talks about ‘developing an initial care plan’. I already have a very comprehensive care and crisis plan which I work hard to follow.  Part of the care plan was to contact services via my GP if I felt I needed them – the delay in getting the required help has had a huge impact but doesn’t mean my care plan needs re-writing.  

Action number 4 is to ask them to read my care & crisis plan which is on my notes before I attend any appointment.

The whole process is completely unsatisfactory and has made me so anxious at what is already a very difficult time. The LIT team should not be used for people with long term mental health needs that need some extra support in addition to the GP support every once in a while. I was promised when discharged from services that if I needed support in the future that it would be quick to access and relevant to my needs.  I am struggling to see this promise in action. 

I am seeing my GP tomorrow morning and hoping she can advise me what to do and help restore a little faith in the health service I am faced with.

Another assessment is not what I need …

~ katcopley ~ 1 Comment

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?”

Referred back to CMHT …. Here we go again

~ katcopley ~ 3 Comments

Saw my GP today and she suggested that a referral back to the CMHT would be a good idea. I am not sure what to make of this – in one way I know I need more support however this referral is no guarantee of getting any.
I can’t really describe how I am feeling but what I do know is that I feel like my head is currently unable to counteract any of the negative thoughts that I have battled so hard to overcome.
I am trying to stay positive even though I feel quite a failure for having to agree to the referral. I am not terribly depressed but worried that I am heading that way and so today was probably something I needed to do sooner rather than later.
I have though decided that I cannot place all my hope in the system. I know how it works. I might not get a assessment for weeks and then there is a chance they may refer me straight back to the GP. I also realise that by continuing to function, work, keep busy it will be even harder to explain how I really feel and that communicating is probably an important key to getting the right kind of support.
I also need to remember to keep communicating with the people around me – that includes my GP as she has said she will be in touch especially whilst I am waiting for the CMHT to call.
I realise that the faster care access option is accident and emergency but that is completely out of the question for me and whilst this may seem the wrong decision to some people I have to keep some element of control as my head certainly isn’t helping me to feel in control at all.
I am hoping that even though I can’t write exactly what is happening inside my head I know and can hold onto the fact that lots of people care and I am so grateful for that – it is keeping me going.

The Blame Game

~ katcopley ~ 2 Comments

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.

Some of my thoughts on writing a complaint to a health care trust as a patient

~ katcopley ~ 1 Comment

I have been thinking that I should put together some of the things that I consider and try to do when making a complaint to my local NHS trust regarding poor care. Please note these are my own personal thoughts but some people may find some of this useful so I thought I would blog! These thoughts also relate mostly to complaints made about poor mental health care.

1. I normally don’t write a letter of complaint until I am more stable than I had been during the time that the poor care took place. This isn’t always possible as sending a letter within a certain timeframe might also be a factor but it is worth thinking about.

2. I try and write some positive points about the care I received as normally because such great people work in the NHS I often am on the receiving end of some excellent care. It is vital to me to mention this as these comments can be passed on and I am a great believer in sharing good practice and hope that trusts would do the same.

3. I once went on a course about using Non Violent Communication effectively and always make sure I use these techniques when writing any complaint. The basic principle is using the ‘Fact, Feeling, Need, Request’ method of communication. State the facts, state clearly how you feel (without too much emotion), say what you need and what the request would be to meet the need. This approach is not easy and I might not of done it justice by my description here but I really swear by it and use it to help colleagues in difficult work situations as well.

4. I have a couple of good friends who often read my letters before I send them. This is mostly because I want to be factual, correct and not too emotional. Yes I want them to know how I have been affected but also not get carried away and so having someone to read through what I write is vital for me.

I would be interested to hear other tips people might have about complaining. It is vital that our voices are heard so that trusts can learn from the mistakes that are sadly all too often made.