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.
This week the BBC are screening quite a few programs as part of their ‘In the Mind’ series.
I will be tuning in to see the programs, and this weeks programs have also coincided with a ‘Taskforce’ report into the lack of good mental health care available and references to the ‘Cinderella’ service are widespread.
As a NHS trust Governor I am all too aware of the pressures within mental health care and only in the last year have I personally received good crisis care after being under mental health services for years. NHS Trusts are having to drastically change the way they offer services to save money and not only does this mean there is a postcode lottery about who is able to accessgood care but the system is so stretched that if too many people are accessing the service at a particular time then people living in the same area can have hugely different experiences.
On recent visits as a governor I have been encouraged by what I have seen which have also backed up my own experiences in the past year, but I realise that this is sadly not the case for the majority of people I meet and speak to. I am hearing everyday how in every part of the country people are waiting months for mental health care, receiving inadequate crisis support and inpatient care that is far from therapeutic.
So television series and media reactions to reports are all very well and certainly put mental health care at the top of the agenda, but how long for? How long will it be before this weeks television is a distant memory and the people that feature in documentaries are long forgotten about? Will the taskforce reports bring better care for those who need it most? So many questions that I have asked so many times.
Like many people I have been campaigning for improved mental health care for years and have sadly been on the receiving end of mental health care for 20 years. I have seen the increase in awareness raising of both mental illness and the lack of care avaliable but I have yet to see much change. Will this week be the start of something different and more positive?
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.
So on Monday I was discharged from the HTT team knowing that today I had an appointment with my care coordinator in the Short Term Intervention team.
To set the background story I was discharged from MH services last May after being in the system for 15 years. After a crisis last October I was referred back to services but only to the Short Term Intervention Team (SIT Team). It was made very clear to me that this was just until March ( this month) however I hadn’t really been thinking about this having been in crisis again following an episode and only just been well enough to be discharged from the HTT.
on Monday I was apprehensive about being discharged from HTT but I knew that the initial crisis had passed and felt that with the support of my care coordinator and GP I would feel supported – little did I know that the originally plan for discharge from the SIT team was being kept to, despite my recent episode and so I am writing this with absolutely no MH support at all.
I am still in shock and I was not up to challenging this decision and didn’t for a few reasons. Firstly I know that the system has very tight constraints and therefore my care coordinator probably was not able to change the decision that was made today. Secondly I am so paranoid and anxious that I didn’t have the confidence to challenge the decision and Thirdly I really think that because I work they don’t fully understand the crisis that I have experienced and how bipolar affects me day to day so challenging might make things worse.
This all comes back to the fact that the system seems to do everything it can to push people out of long term care and into short term care when they in fact have a long term mental health condition. I acknowledge that I do cope with episodes better than I did and therefore do not need the high level support I once did but I am positive that by keeping me in the system with some consistancy would aid the recovery from episodes and mean I get crisis support quickly and not have to wait for referrals all the time.
From another perspective I feel for my family and friends who have also had the reassurance that I was being supported, monitored cared for 2 days ago but now I am back with my GP and they are also without the support network that they had.
As a governor I understand some of the challenges but the total lack of flexibility shown in my case this week is staggering and I am hoping it won’t have a devastating effect long term.
Over the past week I have experienced and been on the receiving end of some pretty abysmal care. The list of things that I feel I would be justified to complain about are:
*Having to wait 48 hours to receive a call after my GP highlighted to services I was in crisis.
*Being offered an appointment with Crisis team only to be told 5 mins later that I had to see my care co-ordinator first at a different location that I couldn’t physically get to.
*I then had no choice but to make the distressing trip to A and E where even though I was seen by triage quickly I waited 4 hours to be seen by the mental health team.
*When we were seen I was asked where I had been as I had been apparently called an hour and a half earlier. We hadn’t moved the entire time and proof of that would be on CCTV. We weren’t believed at the time though.
*One of the things I needed was more diazepam which I requested at the initial assessment but this wasn’t passed on to the crisis team who I was referred on to.
*At my 2nd Crisis team appointment over the weekend a lone male came to see me when it clearly says in my notes that a female must be present.
*I was refused Diazepam that I had been promised even though it is on my care plan.
*When I asked to see a doctor about this this carried out a conversation in public in reception.
I also have seen some excellent examples of our NHS which give me hope and also need to be written about:
*My GP has been absolutely fantastic and kept in contact throughout, supported me and also the doctors receptionists have gone beyond the call of duty.
*At A and E the pre-triage nurse was absolutely brilliant and ensured the triage nurse saw me very quickly even if the mental health team then kept me waiting.
*I have now had 2 excellent crisis team appointments and the staff have really supported me and finally I am getting some support.
So whether I make a complaint is my next dilemma. I am a governor of the trust so don’t want to be a trouble maker but I think it is important for me to highlight the mistakes, and the excellent examples of care. I am thinking of complaining just about the points I can prove as I always get upset when it is my word against a professionals and obviously I am never believed.
Whatever I do I want it to be constructive and ensure it makes a difference.
Yesterday morning I made it to Church thanks to Mum for driving me. I also sung there and was so pleased as if I can have a good sing then that can sometimes help a but. This episode hasn’t given me symptoms of horrendous depression which I is unusual, but it has meant that things like singing are possible and I have noticed that I haven’t stayed in bed for really long periods of time. It has also meant that I think the desperation has been more intense so no less distressing an episode.
Yesterday afternoon I went for a crisis team appointment and although it started badly by one lone male nurse trying to see me on his own and a horrendous ‘appointment’ in reception with a doctor who refused to prescribe me what I am used to I did in the end see 2 female nurses who did their best to help.
Today I called my GP and she prescribed diazepam as normal and seemed completely happy that I am following my care plan regarding the medication correctly.
I was so reassured to speak to my GP and she promised we could revisit my care plan so that some of the communication problems can be improved and also decide if it is causing me too much distress seeking support with the mental health system.
I also went to work today and managed 4 hours which was just enough as I cleared a few emails, sorted some queries and slowly eased myself in. I then had my most positive appointment with the crisis team – only taken 6 days to get good support in place but they listened, understood my distress and most importantly didn’t judge me or jump to their own conclusions. It was the first appointment I had been seen fairly near the time allocated which makes a huge difference.
So I am now resting and think that I am definitely calmer, I am still sure I am doing all I can, I am not listening to those people that have been unsympathetic who should know better and I am still fighting. It isn’t great but I can see an improvement.
Last night one of the things I asked for at A and E was some more medication as the only thing that is really giving me any respite from the anxiety/paranoia is diazepam. I only keep a very small number of these as when I am well I might only take 2mg every couple of weeks or even less than that. When I called my GP last Wednesday she asked me what meds I had and if I had enough to take 5-6mg per day until yesterday as by then we hoped that the Mental Health Team support would be in place. Obviously by last night I was running low and now I only have 4 mg left.
Last night at A and E I explained this and the MH worker who I saw wrote down how much I was taking currently and that I needed some more. This wasn’t though passed on to the Home Treatment Team and so when I turned up today they knew nothing about it.
The other very weird thing is that they said they have no doctors within HTT over the weekend and therefore can only rely on the duty doctors on the psychiatrist wards in the same building. They did ask her to prescribe but because the mental health team aren’t my main carer’s there is no record of prescribing diazepam in the last 6 months because my GP does this.
I am pretty disgusted by this and just as I had found a small amount of stability I am putting this in jeopardy. My friend who was with me last has confirmed that we asked for the medication however the HTT even questioned this as well today. As a governor of the trust where I am trying to access support this completely baffles me and I am starting to feel that I am being targeted in someway although I realise that paranoia is so bad that I need to keep these thoughts to one side.
I am seeing the HTT tomorrow afternoon as having the contact and support is a valuable part of the support that I need but I am worried about coping till Monday with less medication.
My care coordinator called me earlier today after 48 hours from when I first called my GP. Not sure what the delay was but she said that she would refer me to the Crisis Team also known as Home Treatment Team (HTT). She then called me back and said that she had been told that she would have to see me first before the HTT could. I didn’t understand this & wasn’t happy to accept this because a) I couldn’t get to see my care coordinator when she could see me and b) I needed to just be assessed once and not twice which is what would happen. I couldn’t understand why they don’t realise that if I ask for help and kick start the crisis plan then I need to be taken seriously and certainly not given 2 assessments unnecessarily. The other problem of getting somewhere was also not understood which was frustrating.
I was therefore told that there was nothing else that could be done apart from a and e.
At 3pm my friend and I agreed that I had to go to a and e as so unwell but I was very frustrated by this. We were seen firstly by a nurse who points people to the most appropriate area and then we sat in a quieter area of the waiting room. I was seen by the triage nurse very quickly however she didn’t fill me with confidence. She called the mental health liaison worker whilst I was there and even said ‘I’ve got another one for you’! I just don’t understand why people think that is an acceptable thing to say – you wouldn’t say it about a cancer patient? She also commented on my anxiety and instead of being sympathetic she said I didn’t need to shake! Couldn’t make it up really!
By this time it was only about 3.40pm and it was stressful and exacerbated my anxiety & paranoia. We stayed in the same place the entire time and I probably lost concentration to have a panic attack but no one called us at all. About 6pm I asked whether there was any update and shortly afterwards the mental health worker (which we didn’t know who he was at the time) came and asked for someone calked ‘Helen’. It transpired that she had also got fed up with waiting.
Even though I was still waiting we witnessed the mental health worker having a good long chat and laugh with the security guard for over 10 minutes and then he disappeared. It was only when the original nurse that we saw when I walked in the door saw us still waiting and actually went and found the mental health worker that we realised what had happened. Apparently the mental health worker had been ‘looking for me’ since 6pm – it was now nearly 7.30pm. As usual it seemed that it was my word against his – thank goodness that my friend was with me so I knew he hadn’t.
I was eventually seen and he was quite an amenable man however it is so hard for me to talk to strangers and also he asked me why I had refused to attend the HTT team earlier today! I couldn’t believe that had been put in my notes when I hadn’t refused at all.
I now have a referral to HTT and they are seeing me at 5.30pm tomorrow and will be able to help with PRN meads and support over the weekend. Just seems a completely ridiculous and time wasting way of doing things. When will crisis care change.