Fighting the #Stigma battle

Maybe triggering – please take care…

Last night saw the inspirational, sensitive and excellent documentary aired on Channel 4 – ‘Stranger on the Bridge’. It told the story of how Jonny Benjamin, after a huge hunt found the stranger who helped him on Waterloo Bridge one morning when he planned to take his own life.  

I would recommend people watching this if they haven’t already as it was brilliantly put together and as someone who has lost a friend to suicide and have been suicidal myself I found it very helpful.  It was though very moving and could also be hugely triggering so please take care if you are fragile at present.

I thought that the whole story gave a very powerful message in the fight against Mental Health Stigma.  This is something that is very close to my heart and when I am well I do my best to talk about mental health and try and break down some of the misconceptions and challenge stigma that I come across in my day to day life.  Normally the stigma which I challenge is amongst people I have met before and more about helping people to realise that talking about mental health is ok and can be so positive for all concerned.  

One thing I have tried not to do is challenge the huge ‘celebrity’ (I use this term loosely) voices that seem to take great delight in doing whatever they can to damage those with mental health illnesses further.  I am acutely aware that these people thrive and feed on publicity of any kind and probably sadly make their money by causing hurt and upset to many vulnerable people. I was though angered by a certain tweet regarding the ‘Stranger on the Bridge’ programme and felt I needed to challenge this.  

I decided to tweet a reply but to an employer of the person concerned and whilst this hasn’t had a huge impact an online paper did write an article on the subject and quoted my tweet in their article.  This made me sit up and think and remind me that we do have a voice even when others seem to do what they can to destroy this. 

So today I have talked to others about suicidal thoughts, explained what this is like for me and let more people in to some quite difficult experiences from my past.  In return I have felt comforted by the responses I received and buoyed by people’s understanding and in some cases a change of view point.  

It also made me realise that the simplest of acts can sometimes have the biggest impact – just like the stranger on that bridge……

Online Counselling – My story

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. 

A very positive few days…..but

After returning to work full time this week I knew that it would be a sort of test for me to see how I really was coping and feeling. I have been feeling much better for a week or so and after 2 months of pretty desperate times it has been a huge relief. The last couple of weeks I have had quite a bit of annual leave and also not been working full days so I knew this week was a different challenge of sorts. 

Work has gone well this week and I have coped ok with quite a busy time and also managed to get the balance right so that I am taking things gently when I can. I feel back in control, able to make decisions and even have snippets of feeling positive about my own abilities! I can’t say that I haven’t once felt depressed or that the anxiety hasn’t at times felt like it was taking over but these feelings are no way near what they were.

Tonight though I experienced the dreaded feelings of worrying about getting ill again.  They sort of came in a huge wave of emotion and made me realise just how fragile I am and also how frightened I am of feeling how I did just 2 weeks ago.  It is hard for me to separate what is ‘normal’ emotion about a very sad situation and when I should be concerned that I might be getting ill.  Before I know where I am I feel anxious, very upset and just want to hide away and stay in bed. Ok this didn’t last long but I am left with the worry that wasn’t there this morning and hoping it will be better when I wake in the morning. 

Revisiting my #WRAP 

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. 

A glimmer of light & preparing for small steps forward …. and maybe some backward ones too

Today for the first time in goodness knows how long, I noticed a small shift in the black cloud of depression. I ignored it at first, mostly because I am fairly unwell still and my head seems to do nothing but play tricks with me. Over the last few weeks I sometimes haven’t even known what is real or what isn’t. There was no way that I could even try and believe that the reason it was slightly less difficult to get going this morning or that I didn’t break down in tears before leaving the house was because of a small positive change in mood. 

I went to Church and it then became apparent that I felt a bit better from this time next week.  It was the first time in weeks that I had been able to do a comparison like this and actually see a change for the better. 

It was whilst at Church that a couple of people noticed that I had a bit of a sparkle back in my eyes and that my eyes seemed a bit lighter. I can’t count the number of people who have been automatically concerned over the last few weeks by how I have looked, an Oscar performance has been hard because the depression and exhausted seemed to show in my face. 

So this evening I am certainly still extremely depressed but the desperation isn’t constant and I think I can believe it is real. However I am absolutely terrified of this just being a glimmer of light and then no more. At times like this it is vital for me to continue a day or even an hour at a time although the temptation is always to worry so much about what the future holds.

So tomorrow won’t be easy peasy and I might have periods of the day where the depression will hurt like never before but I can hang on to the fact that today I had a REAL glimmer of light. 

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

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!

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.

2 weeks – can’t even think that far ahead

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? 

Another assessment is not what I need …

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?”

The inadequacy of A&E in a mental health crisis …..

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.