Thanks to my followers for sticking by me even though I haven’t blogged for ages.
During November last year I very quickly became depressed and also experienced horrendous anxiety. During the last few depressive bipolar episodes I have been frightened by the pace that I have become unwell. This episode was no different and I very quickly developed awful paranoia, debilitating suicidal thoughts and the black cloud was heavier than ever.
Although the symptoms seem to come on more quickly than they did a few years ago, I am grateful to my GP for also acting just as quickly. She upped my PRN medication, referred me back to the community mental health team (CMHT) and helped to facilitate reduced working hours as part of a reasonable adjustment. My employers were amazing and acted quickly on my doctors recommendation, ensured I had enough support and probably most importantly for me allowed me to carry on with my job which is hugely important during an episode if at all possible.
It quickly became apparent that the referral to the community mental health team wasn’t going to be as quick as it had been in the previous year. I was hearing from other contacts and healthcare professionals that patients were waiting weeks in all areas to be contacted even when the referral was marked as urgent. I was surprised that the number of referrals had increased so much that the waiting time for someone who was actively suicidal had increased from 1 day in late 2015 to at least 7 days in late 2016.
One of the consequences of this delay is that the local accident and emergency department takes the brunt of the loophole. Those people who are not quite in crisis when referred by their GP end up crossing that line into crisis and often end up in accident and emergency before they are seen by the community team.
I am hugely grateful to my family and friends who supported me whilst waiting for the CMHT to respond and even though I reached crisis point during that wait I wasn’t a statisitic in Accident and Emergency because of the network I am so lucky to have around me.
In a weeks time I am meeting with the trust to look at this serious loophole, discuss possible solutions and most importantly see if the issue regarding Accident and Emergency not being a suitable place for people in a mental health crisis can be addressed more successfully than it is at present.
I want to know why prevention doesn’t seem to be at the forefront of professional’s thinking in so many mental health areas and why there seems to be a reluctance to provide any consistency in care for many experiencing mental illness. I am also interested in the role of the crisis team as I am hearing more and more how the support from some crisis teams is not what it should be.
By Christmas I had thankfully turned the corner and the care that I received from the CMHT once I was contacted was helpful. As always I dreaded January but it has been a really positive month and the hope that I found at Christmas through my faith and the love and support of those around me has strengthened me even further than I dared hope for 2 months ago.
So today was a huge first in I don’t know how many years. Yesterday afternoon I received a call from the community mental health team. The call was an acknowledgment of the referral by my GP only 36 hours before, so to say I was stunned and impressed was an understatement.
The call yesterday was fairly brief but had a few simple aims, firstly to establish my safety, secondly to ensure I had contact numbers of support if I needed them and lastly to arrange a time to call me today for a telephone assessment.
Today the same person (note the consistency) called to assess me. This followed a fairly typical mental health assessment format but was so different to ones I have experienced before. It was carried out with understanding, empathy, support and also helped on a practical level as well. I have to admit I was very sceptical but then who would blame me after the last few years of one bad experience followed by yet more bad experiences. I was able to be completely honest with the person on the phone, I was able to tell them my deepest fears and even though they felt they hadn’t done much at all I was eternally grateful for this support at what seems an impossible time.
The other thing that made such a difference was the honesty of the person I was speaking to. Never has a mental health professional said to me: ‘I will try and call you back today after I speak to the doctor, but if I don’t it may be due to an emergency or not being able to speak to the doctor but I will call on Monday’. A typical scenario is that they say they will call back and don’t and then deny ever saying that!
Well he did call back (yes the same person)! He checked again I had all the numbers I needed and understood my fear of going to accident and emergency and seemed to join me in a determination to try and stop this from happening. He had spoken to the doctor and has some ideas and for the first time in years I am even willing to discuss a possible new medication.
He is calling me on Monday and we are reassessing the situation then. In the meantime I am so grateful for what he has done over the last couple of days to help shine a bit of light and hope in a rather bleak situation. It is very rare for the professionals to be the bearers of light and hope – this is often only generated by my amazing family and friends!
Not only is this a first in so many years during a crisis situation but also I was properly listened to by a professional. I wasn’t judged because I work or because I could articulate what was happening to me. My distressing symptoms were acknowledged and not once was any aspect of my illness belittled. It will obviously take a while to gain my full trust, after so many years I have learnt to protect myself and to be cautious but feeling like I do, this support is hugely significant.
So yes the small things do matter, I ensured that I told the mental health worker exactly that today. Sometimes things can get over complicated and the wrong help given as a result but today I received what some would consider a small amount of support but it made the world of difference.
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?”