A Maddening Mess: One NI Mental Health Patient’s Diary

A member of our family has serious mental health challenges. This statement is a just a few short words, but anyone who has ever used this phrase, or similar, will understand that there’s something often unseen about everyday life for those who use these words.

And it needs to be seen by everyone.

It’s this: the exhausting task of swimming against the endless tsunami of ancient processes, red tape, disconnected departments, delays and jaw-dropping inefficiency blocking the path to treatment. It, too, becomes all-consuming in and of itself. It becomes a part-time job.

There are major, major issues with this fact affecting all of us. Not least the huge question of how anyone without the time, energy and support (both family and employer) to do so could be expected to tackle this ask. Not least while they’re very unwell.

This blog will talk you through one patient’s experience as well as explain why it should concern you, and concern you right now, whether serious mental health issues have impacted your family or not. It also explains why a delay for substantial psychiatric treatment stretching into years – yes, years – means people who are unwell are left to simply live with their condition for frightening periods of time.

Your patience is appreciated, there’s quite a few things to cover.

Here goes…

 

Stage 1 – An Introduction (And a Mental Health Emergency)

When: October 2021

What: Crisis point

First things first. My beloved wife, Terri, asked me to write this blog on her behalf. You might find the approach a little impersonal but it’s mostly an attempt to journal the facts with as much concision as possible.

Perhaps, we thought, it might help make sense of an ‘eventful’ few months. Perhaps, even better, it might help a family having the same experience or raise awareness of the current state of mental health services. It might even help more people in politics to take a break from the politics of symbolism and cheap theatrics and, instead, return to that ‘making a difference to everyday lives’ you’d like to hope they once craved. We live in hope.

An important note first: Terri was lucky enough to receive some level of treatment from superbly talented and knowledgeable medical professionals working in an overstretched and antiquated system. We realise that many, many patients looking for help – across a range of medical conditions of all kinds, adults and children alike – cannot say the same. We deeply, deeply support the NHS and support proper pay, proper resourcing, and proper recognition of our NHS medics.

So, with that said, it all began in October 2021 when, despite many months of treatment for depression, an extreme slump reached a point so urgent a gentle, calm ‘mental health triage’ medic in Dalriada Doctor On Call (we’ll never forget his patient and reassuring Derry twang) made an immediate referral to a crisis team at Holywell Hospital.

 

Stage 2 – Mental Health Crisis Team @ Holywell (Our Heroes)

When: October 2021 (0 days post-emergency)

What: Daily visits to Crisis Team, 24hr contact number, emergency medication

The patient’s experience: A godsend, supportive and reassuring with a sense that someone had ‘taken charge’ and was on top of the details. But signs of a creaking and disorganised bigger picture start to appear.

An immediate appointment among the maze of battered buildings at Holywell – think MASH, but bricks and mortar – and a long chat with a wonderful Mental Health Crisis Team medic gave a chance to explain what had happened. Most of all they talked medication, access to 24-hour support and daily (at first) appointments.

The causes of the emergency started to come to the surface: a combination of factors including recent withdrawal from very high-dose depression medication, major life stressors, charity counselling for a traumatic experience and a medical scare. An in-patient admission was offered (but declined) with the advice that the environment could cause more harm than good.

The Crisis Team medics also asked, on one of the very rare occasions for this to happen, how family were coping too.

A minor issue was presented by a continuous change of Crisis Team representative each time across the days and weeks, meaning Terri was asked to recount recent and past events ‘from scratch’ each visit. The result was that she almost had to be carried to the car due to the exhaustion and distress after some sessions.

The team clearly had some issues dealing with Terri’s GP practice and were at the whim of GPs for medication, as the prescribing process is arranged this way, flagging up a disjoint in the system we’d go on to find occurring again and again.

But all in all, the frequent visits to the superb, but clearly under pressure, service at Holywell as well as constant trips back and forth for medication (including an initial emergency prescription from Antrim Area Hospital) set the tone for the coming weeks and had the effect of keeping us busy. Perhaps no bad thing at this stage.

 

Stage 3 – Community Mental Health Team (Gatekeepers, With a 1950s Twist)

When: November (approx. one month post-emergency)

What: Initially bi-weekly meetings with a CMHT social worker

The patient’s view: Chaotic, exhausting and frustrating

A referral, after panel review, to a Community Mental Health Team social worker (note: not a medic) for support going forward and a (broken) promise that the CMHT would continue to oversee vital and urgent medication  turned out to be a very different experience.

Remember the trouble the Crisis Team had obtaining medication from the GP? This was now handed to Terri to manage.

Because the CMHT did not oversee medication, the sessions were reduced to rambling consultations with little apparent purpose aside from acting as an apparent ‘keep patients occupied and see if they go away’ gatekeeper for psychiatric services. Our contact would take days to reach by phone (the only means of contact available) when necessary, wrong appointments were issued twice and promises made never to be mentioned again. The efficiency, information flow and, at times, courtesy shown by staff was more reminiscent of a 1950s Civil Service outpost than a medical service. The sessions did, however, start to reveal that PTSD/ trauma could be at the core of the recent crisis.

It fell to Terri, having a good day, to press for an actual outcome from the sessions and – with repeated insistence on some kind of ‘cure’ rather than just a ‘possible diagnosis’ – an initial referral for an in-person psychiatrist session was made.

 

Stage 4 – First In-Person Psychiatric Assessment (And A Whole New Diagnosis)

When: February 2022 (approx. four months post-emergency)

What: Proper diagnosis, then a shocking discovery about the waiting list for treatment

The patient’s view: Clear answers, but more chaos, at last

An impressive session with a psychiatrist delivered a new diagnosis – complex PTSD as well as BPD – and, for the first time in Terri’s life, new medications matched to a correct diagnosis.

However that ongoing sense that no one was overseeing the medication, as opposed to it being left to the GP system, came to the fore in a big way.

One week after the appointment in a venue next to the GP’s surgery in the same complex, and with Terri’s remaining time off work from her extremely supportive employer disappearing by the day, the GP in the building opposite hadn’t received the prescription. It transpired it had been posted – posted! – by normal post between two buildings facing each other the Monday following the appointment.

It’s worth taking a moment to repeat that these two buildings are a little under 67metres apart in the same health centre complex. Also that a week of treatment as well as dwindling time off work needed for the medication’s long adjustment period was lost due to this bizarre process.

It also seems that, because one of the medications sat outside the normal systems, the system went like this: the psychiatrist writes to the pharmacist (waiting for the postal service to move a letter a few metres) who prepares the script for the GP who signs it off for the pharmacist.

And another, even bigger, issue: news that a waiting list of at least a year – perhaps two – to actually treat the PTSD was now ahead. So, as Terri explains it, she fought for a diagnosis only to be told to go home to and be quietly unwell for months and months.

Saying that, some Recovery College resources were recommended and these, albeit very basic, were appreciated.

 

Stage 5 – Now What?

When: ??? (approx. six months post-emergency and counting)

What: Post-diagnosis treatment

The patient’s view: Left in limbo

Now armed with the reasons for the mental health crisis, but not the cure, Terri faced a return to work despite spending hours awake due to trauma nightmares every evening and still working through the self-directed task of learning how to manage her conditions.

As a family, the highs and lows of navigating the, still incomplete, treatment process to get to this point were such that we felt the need to put this entire experience on paper.

And our experience leaves some big questions we’ll go on to cover below.

Our thanks to Terri’s employer, the GPs, the Crisis Team based at Holywell, the Doctor on Call mental health triage, the psychiatrist and the health centre pharmacist for their dedication and help. Many others, particularly non-medical staff whose work and working conditions we passionately support, were infuriating and/ or abrupt to the point of uncaring to deal with.

As a TL:DR, let’s summarise Terri’s experience at each stage, so far, in the emergency response and treatment process…

-Pre-emergency, charity trauma counselling, 2021: Appreciated, but brought traumatic experiences to the fore with no treatment or resolution.

-Stage 1, Crisis Team @ Holywell, October 2021: A superb team of over-stretched professionals working in an arcane and disjoined mental health response system.

-Stage 2, Community Mental Health Team, from November 2021: A chaotic battle, against inefficiency and archaic processes, to keep medication flowing and receive actual answers.

–Stage 3: Initial psychiatric review in-person, February 2022: The reassurance of a proper diagnosis with some more bureaucratic inefficiency and the uncertainty of years, for actual treatment.

-Stage 4: limbo, ongoing: A long, long wait for an unwell patient now left to navigate symptoms including months of sleepless nights, caused by constant trauma nightmares, while in the queue for actual treatment.

The upshot of the process to date?  It’s taken six months from a severe mental health crisis, not to mention decades of GP-level depression treatment, to reach a correct diagnosis. But, as Terri has described it, the mental health services process itself has been an incredibly difficult experience at every stage: doors would be opened, huge revelations handed to her with an instruction given to walk through. Except the door would then be closed behind her as the support walks away. Repeatedly.

Months later, this situation remains as we speak.

Another thing to note, while we are both passionate supporters of the NHS and have serious issues with the inequality of private medical care (the following would not apply to us in any case); a ‘The Priory’ type mental health facility as seen in England does not exist in NI and, therefore, does not have the effect of removing those from the system who can afford treatment outside the NHS.

An additional, very important, note at this stage too: turning to the more personal side of this timeline, there is another constant through the whole, unfinished, process: the pride myself and Terri’s family feel in her progress through the brutal weeks and months of her treatment so far. It has been the challenge of a lifetime for her and, for those who have supported her, it has been difficult but privileged experience to be entrusted with walking beside her through it with her.

Yes, this blog takes a cold look at the steps in receiving treatment. But there’s nothing cold about our admiration for the one person who has had to experience those steps at their most intense point…the patient.

 

Why Should You Care?

If the experience just outlined doesn’t drive you mad then it’s possible you haven’t thought it through.

Let’s look at it a different way.

A system where a family member needs to spend a vast chunk of their working day fighting for their loved one’s life-saving treatment while fretting about brutal delays and tackling bizarre inefficiencies has some big impacts on everyone reading this blog:

1, What if someone doesn’t have a family member of time in their working day?

It became very clear to us that those without the confidence, support and flexibility to work hard for their treatment may well be left to simply go through life in a seriously unwell state.

It also became clear that the hours of phone calls, chasing missing prescriptions or appointments and general work involved in advocating for Terri could be beyond the reach of anyone who can’t constantly do this stuff during the day for work reasons. Even worse, we could see no one way someone without family support could’ve carried out the legwork, endless phone calls and administration to make it to the stage in the process we have been lucky enough to reach.

2, What if this was you (or a family member)?

If you, or your family, don’t have a need vital mental health support to live (let alone work), it might be hard to emphasise with those going through the process described here. But the standard of care waiting if serious mental ill health was to impact your home should concern you. And it should concern you immediately.

3, How may seriously unwell people who are diagnosed are out there waiting for treatment?

Let’s be clear: every person waiting one year, maybe two years, for psychiatric treatment is living with a serious mental health illness and its impacts, such as constant nightmares and debilitating mental ill-health, day in and day out for months on end.

4, How many people are misdiagnosed at GP level and at home swallowing anti-depressant after anti-depressant with no end in sight?

It took decades to receive the correct diagnosis for Terri and it was only uncovered due to a mental health emergency and many months of dogged fighting against the mental health treatment process as described here.

GPs, understandably, will often issue anti-depressants. But how many of those patients have no actual cure in sight as their actual condition, ie not depression, hasn’t been diagnosed.

In short: how many people seriously unwell people manage to make it into never mind navigate an obtuse, time-consuming, inefficient and challenging system. Then do so to the point where they become well.

How many are waiting for treatment? And how many have received no treatment, beyond a box of antidepressants, at all? What impact does this have on work, society, services, addiction, education and more? What impact does it have on families?

The phrase ‘rearranging the deckchairs on the Titanic’ is overused. But it’s hard to see the sense in passing laws and debating gallery-friendly politics in Stormont when this – here’s another cliché – all-consuming elephant in the room is plonked down in the middle of the NI Assembly Chamber.

It makes it harder to watch, and harder to stomach, the performative, self-serving politics of manufactured drama and distraction infecting much of politics and the media in NI.

Bottom line? If you aren’t mad yet, you should be.

Please support our NHS and oppose those who would destroy it, please resource and pay our NHS medics properly, please fix the arcane mental health processes they work under and, most of all, please, please vote wisely.

Thanks for reading.

NB – As this is a personal, sensitive and emotive subject. I won’t be reading or responding to comments and appreciate your understanding around this decision.