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.
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!
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.
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.
After 2 weeks off work which have contained a lot of good times and also given me a chance to really rest, I am tonight panicking about returning to work on Monday. Not only have I had 2 whole weeks off but I am going back full time after over a month on reduced hours due to a depressive episode.
I am therefore trying to do the following things to try and stop the panic, as one thing I do know for sure is that going in on Monday having got myself in to a state won’t help me in anyway at all.
1. I have reminded myself that I can do my job! The situation has been horrendous at work but it is improving and slowly more support is in place.
2. I am reminding myself that I am in a much better place mentally than I was even 2 weeks ago. The break has certainly done me good in that respect.
3. I can be reassured that I am on hardly any PRN medication now so therefore it will be easier for me to work longer hours and concentrate better.
4. I have double checked that I have a doctors appointment in place so that if I need more support or need to look at my hours again I have that safety net setup already.
5. I have organised a lot of home things so that I am up to date with household and other jobs so that I can rest when I get home from work more as I will be tired.
6. I have been setting a alarm for the last few mornings to slowly prepare for Monday. Mornings have been very difficult for me recently and the depression has often been unbearable first thing and so being unprepared for next week isn’t sensible.
7. Most importantly I have to keep reminding myself to just take a day at a time – in order to be well on Monday I need to stay well today – that is what I am trying to hold on to.
So Christmas is over for another year!
As I was so unwell during the month or so before Christmas I was very worried about how I would cope and whether I could even enjoy myself and build on my positive Christmas memories that I had been doing so well to create over the last 5 or so years.
As a Christian I also wanted to be able to participate in the Church Christmas programme which included singing and helping to lead the children’s Christmas Eve service which I enjoy so much but that can be so hard when I am unwell.
I also had the added difficulty of experiencing awful anxiety and panic in shops and other crowded places which means shopping and some social occasions also were out of the question.
So with a few very supportive family members and close friends and the trusty internet I prepared for Christmas practically and with the prayers, support and love of those at the Church I managed to participate fully in the Advent and Christmas services and with my amazing family I also enjoyed and have treasured memories of a lovely Christmas Day.
Yet this has also come at some cost. I have written before about an Oscar winning performance and how in some ways it is massively important for me to keep going with things, put on a brave face and to some people pretend all is well but on the other hand I have to get the balance right as the consequences can be hard to cope with if I don’t.
On Christmas Day evening about 10pm I felt this wave of panic and exhaustion. I put it down to overindulging and tiredness and I had such a lovely day that it didn’t spoil it in anyway. It did though mean I was worried and woke up a couple of times that night in a panic and when I woke on Boxing Day I wouldn’t of been able to pretend to anyone. I was depressed and every part of me felt like it weighed 20 stone. I was so relieved that I had made no plans as getting out of bed took hours and leaving the house was a no go area. I couldn’t even get dressed but I battled to do a few jobs, setup my new laptop and did cook a meal but everything took twice as long as normal but I tried to convince myself that exhaustion can have this effect.
Yesterday was not a lot better although I achieved jobs in the house but I couldn’t step outside and realised I had not got dressed since Christmas Day evening. The thought of seeing anyone apart from my husband or my mum was frightening.
This morning I knew I had to break the cycle for my own peace of mind and so I got up and went to Church where once again felt so pleased that I had done this and fought the illness in my own small way. Yes I sometimes smiled when I really wanted to cry but it gave me confidence that I thought I had lost. I even managed a trip to little Waitrose and cups of tea at Mum’s & a close friends.
I some ways the Oscar performance both before Christmas, Christmas Day itself and today meant that I came down with a crash but it also gave me a boost when I really needed it and that will probably help in the long run. I now have a week before I return to work and I hope the small positive steps continue and the depression lifts for longer each day.