Jumping Through Hoops

Yesterday I reached the end of my tether with the NHS mental health services.

For the last ten years I have attended appointments, taken medication as prescribed, engaged with services and been completely open and honest with every healthcare professional I’ve been referred to.

I’ve repeated my history, answered all questions truthfully and shared things that are almost too painful to admit to myself over and over again until I can barely see for the tears that fall when, time and again I dredge up things that I’d much rather forget.

I’ve been seeking help, in one way or another for the last ten years and yet here I am in no better state than when I first saw my childhood GP and begged him for help.

I have jumped through hoop after hoop and I have almost nothing to show for it.

Yesterday I had an appointment which I thought might actually help to get me some support that actually worked. It came about as the result of my GP referring me to the Primary Care Liaison Service (PCLS) for the third time in two years. At the end of the appointment the PCLS nurse put down her pen, looked at me and said ‘You’ve been very unwell for a very long time, haven’t you?’

It was like a light bulb had finally switched on.

I left the appointment feeling exhausted and wrung out but also validated. Here was someone who recognised how much I was struggling and who wanted to help; not because I was pregnant and they feared for the baby’s safety but because I was ill and I deserved help.

I was full of hope, buoyed on the potential of a combination of new medications, an appointment with the community psychiatrist and the potential that I might be bipolar investigated.

That was two weeks ago and in that time I have got exactly nowhere, despite all the avenues that were going to be explored and services put into place.

I’m still on a medication that seems to be doing little other than making me irritable and angry and is doing nothing to help my intractably low mood.

I still can’t get to sleep at night or get up in the morning unless I absolutely have to because there’s no one to look after Squidge. If he’s at nursery or the Northern One isn’t at work I simply can’t see the point of getting up most days.

The only thing I had to hang on to was a letter that arrived in the post detailing an appointment with ‘the community mental health team’ who were coming to see me at my house. The word ‘team’ gave rise to all sorts of possibilities about what could be achieved.

During my pregnancy I was under the care of scattered healthcare workers from different sites, trusts and even professions doing the best that they could under very difficult circumstances. I am eternally grateful to them for getting me through my pregnancy without permanently harming Squidge or myself. But because they were so widespread it made communication with each other difficult and I found myself repeating myself and informing each different person what everyone else had done.

Maybe it was naive or misinformed of me to think this was the case but I hoped against hope that the ‘team’ would make all the difference.

So yesterday I dragged myself out of bed, put on some clean clothes and waited for the team to arrive. When the doorbell rang it quickly became obvious that the ‘team’ consisted of one person, a community mental health nurse to be precise.

These nurses are designed to be a focal point for all mental health services supplied to an patient; a trained individual who keeps track of all the services that are currently being accessed and makes sure that they’re all communicated effectively with each other to provide the best possible care.

Except I wasn’t actually receiving any support from any services.

It was at this point that I snapped.

I refused point blank to go downstairs and talk to the nurse and instead shut my bedroom door, got back into bed, put my pillow over my head and tried to block out the internal voices telling me how much better off everyone if I had the decency to just die.

With hindsight I can clearly see that this wasn’t the best course of action and I am embarrassed by the way that I behaved. I put the Northern One on the spot, I wasted the nurse’s time and I’m no further towards getting any sort of help. It isn’t her fault or the Northern One’s fault that this is the way mental health services work but the thought of having to explain everything to yet another person was more than I could cope with.

Not two weeks earlier I’d explained everything to the nurse who’d made this appointment, I’d watched her take three A4 sides of notes and yet here I was with another person who wanted me to start at the beginning. Equally if I had to listen to one more person say ‘I need to go back and talk to my team’ or ‘I need to make another referral’ then I was going to start screaming and never stop.

I’m quite happy to accept that not every mental health worker is able to adjust medication or gain access to taking therapies or psychiatric help.

I understand that the NHS is overworked, understaffed and underfunded.

I know that services can’t be put in place for me instantly; that there’s a certain amount of waiting time and others whose need is greater than mine.

Yet even if I had patiently sat yesterday and talked to the nurse I would still not be any closer to getting the help that I need than when I sat in front of my GP a month ago and told her that the only way I was coping with each day was by slashing my arms with a razor blade.

Are they hoping that I’ll just be able to hold on, week after week, waiting patiently while they make referral after referral and nothing actually happens?

Did I get the wrong impression from the PCLS nurse when I though that she understood?

Am I just going to end up going round and round in circles until one day I realise that I just can’t cope anymore?

I honestly don’t know.

All I can do is keep chasing people up, keep attending appointments and carry on jumping through hoops until the day comes where something actually makes a difference or I just give up completely.

4 thoughts on “Jumping Through Hoops

  1. babylossmama says:

    One of the biggest problems I found in mental health care, when I needed it, was that the burden was on me to both seek it out, advocate for myself, take myself to appointments, evaluate the treatment I received, etc. On my bad days there was NO WAY I had the capability to do the research required to even FIND the right person to call for help – navigating insurance and networks, etc. etc. was so beyond me. I HATE that the burden of proper treatment falls on the person least able to handle that burden. I HATE that you have to do so much hard work when it’s hard enough to just get up every day.

    Like

    • blopmamma2014 says:

      It’s so difficult isn’t it? I’m lucky because I have the Northern One to help me on the days where I really don’t feel able to help myself but there are plenty of people who don’t have that kind of support r an advocate to stand up for them. I really hope that you did get the help you needed in the end.

      Like

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