Really frustrated by MH medication service

[Cayennepepper7]

I was titrated on something and it really didn't work, made everything much worse. There was no way for me to directly contact the prescriber so I had to go through my GP to write to them.

That was last week, just got a note from the prescriber saying they're taking me off that medication and starting me on a different one. One of a number of options, one that they did not discuss with me, did not discuss what I wanted to do next, my medical history, potential side effects.

I don't want to try this particular medication but I have no idea what will happen. They sent me a prescription form and it seems like they just want me to fill the prescription and take the medication without any discussion or any choice on my behalf.

The lack of contact and lack of communication is so frustrating

How it works in my area, is that I can contact the prescriber either via my key worker and discuss things with her, (it is expected that I do some independent research) or I phone the MH hub/service daytime line and speak to an advisor, they either sort things there and then or pass a message on. My prescriber then either phones me back, leaves a message on the app or updates my prescription. It’s a system which seems to work well. In this day and age it baffles me how varied services are in different trusts.

@Alphabet1spaghetti2 My service has a telephone line that is literally never answered, it rings for 10 minutes and then disconnects every single time. There is a live chat but it takes about an hour to get through to someone and if you miss the message they close the chat immediately and you have to start again, and all they do anyway is notify the prescriber that you tried to get in touch and there's no guarantee you will get a response. You can't directly discuss anything, you can't talk to anyone, it's such a frustrating and anxiety provoking feeling not to be able to just simply contact and have a conversation with someone about your treatment

It’s old fashioned in my trust. Phones calls left with reception. I find the uncertainty really challenging. It’s a trigger for my mood disorder in its own right. My consultant bypassed it by giving me her email. That worked until she went off sick. I tried to get help for a week, escalating to calling crisis team a couple of times in middle of the night. I don’t have a key worker. In the end I contacted my GP who knew me well enough to know if I was saying it was serious it was and she navigated the system to get my emergency meds that day and an emergency medication review with another consultant 2 days later. I was very unwell.
Now I’m a bit better I can see that I didn’t trigger the crisis team into action - I was not a risk to myself or others. But I was in medical crisis. I plan go go to my GP whenever possible. But we’ve had the same issue. No reply do a fortnight to an email requesting decision on increasing mediation dose. In the end, this week, a GP took the decision in increase it as it’s within NICE guidelines and just inform them.

They likely only have the capacity to deal with absolute crisis management but I’ve decided this is my life and I’m not going to patiently wait anymore. I’m polite but insistent. Once I get direct access to consultants, they seem to evaluate the situation well but the gatekeeping is challenging. I was sectioned a couple of years ago. Not an easy experience. I flagged up for months that something was wrong before I got that ill. So much of it’s hidden inside, it’s hard for them to miss how serious it is in the 5 mins they give you their focus in a busy day.

Sorry, that’s a bit long. Your post really resonated with me. It’s really hard to achieve quality of life in these system.

When you say prescriber, do you mean eith mental health services? I wonder if asking your GP to speak to their specialist pharmacist would help. They can talk through your concerns with the medication you’ve been prescribed and help you with any next steps.

Thanks for your posts both of you, I feel like you really understand where I'm coming from and the challenges of this system. I completely agree with the uncertainty aggravating MH symptoms. If you could get in contact or just see an upcoming appointment rather than just being in the dark, it would help so much.

Basically my GP is unable to change or be involved in my medication at all, it all has to go through the MH service. The service consists of a prescriber that adds notes, and an overseeing consultant that has no contact with me.

I was on a medication that was maybe 70% effective so I asked to switch to another in the same class that is known to be more effective/longer lasting. This took about a year and a half. I finally started titration and was hit with severe side effects. Prescriber said to continue and up my dose. I was then brutally honest about the side effects in my titration monitoring form because I didn't feel that I could continue - I then got a message saying my titration was discontinued and I was now pulled off ALL medications and am now not cleared for any medications in this class - even though my original medication was in this class and I tolerated it fine - and they confirmed that I could go back to my original prescription if it didn't work. They now want to put me on a medication known not to be very effective for my particular condition and that comes with severe side effects, especially with hormones, when I already have hormonal autoimmune issues. It's basically a last resort if you can't tolerate anything else.

The frustration comes from the fact that I can't discuss it with anyone, they didn't check in with me at all, just forwarded me a new treatment plan and basically told me this is what's happening, with no opportunity for me to respond. A big part of my symptoms are anxiety, need for security/trust and fear of uncertainty and this structure aggravates it to the extreme.

That sounds terrible. Can you call or ask your GP to ask for an emergency medication review appointment (ie in person?) Otherwise you’re legally entitled to patient involvement in your care, which isn’t happening from what your describe - and I would consider asking PALS for support with this. If you hear a Serious Mental Illness you also entitled to a mental health advocate. I’m not sure if that also applies to conditions that don’t have you on the SMI register., I have bipolar so that places you automatically as having a SMI. I take my husband with me as he works in a medical field. He does nothing in appointments with good clinicians but he’s useful in others when they’re…well… not so great.

I would agree with @WinterFelinePurring last post. It really does seem the only way forward you have. At least you can honestly say and believe you’ve tried everything short of moving to a better run trust. I’m so lucky to have a great mh team that works well that I’m reluctant to move. It beggars belief that the nhs can get things to function well in one trust but not in the neighbouring trust.
fwiw I hope things improve for you soon.

Thank you, this is really helpful. My GP agreed it was a bad system but can't review my medication so instead wrote to the MH service consultant for an urgent review. But none of this is direct or in-person, and I have no involvement in this. So I will look into PALS.

Looking it up, I technically do have SMI but that is not NHS diagnosed (due to me not wanting it on my health record). I get longterm treatment privately and was diagnosed privately, and get medication for other comorbid conditions. I am torn between having it on my record and maybe getting more help, and the fear of not being able to remove it from my record

I'm so sorry @Cayennepepper7 . That is ridiculous (and so inefficient).

Just to touch upon your last point, I got a random diagnosis put on my records, which I have never been diagnosed with, and I can't get it off despite formal complaint through PALS.

It would be worth talking this through to somebody.

I do wish you all the best 🙂

Does this mean that the NHS team: GP, prescriber etc don’t know all the medication you’re on? I do understand not wanting things on your record - my first attempt at managing things inside my head was a counsellor many moons ago and I walked up to leave when she said she was going to write to my GP that I was seeing her. We compromised that she would reach out if she had actual worries about safety. If you do have something that would be classed as a serious mental illness, I do worry that it isn’t in your long term best interests to have that missing from your records.

All my medication is NHS

I see. I red treatment to include medication but of course it doesn’t necessarily.

is it possible that the anxiety and delay the approach they take has impacts your condition that is only known about privately? Can you private consultant look at the medication options orth you and write a prescription request to your GP? I know sometimes they don’t accept input from private consultants.

My treatment is just intensive psychotherapy and they are not involved at all in medication unfortunately. It's sliding scale thankfully as I could never afford private help otherwise.

is it possible that the anxiety and delay the approach they take has impacts your condition that is only known about privately? Yes, although I do have generalised anxiety on my record, and I don't think wider context is necessary in this situation

If you do have something that would be classed as a serious mental illness, I do worry that it isn’t in your long term best interests to have that missing from your records. Yeah it's just a bit of a gamble considering the stigma attached - I've experienced dismissal/poor treatment due to this in the past and it's a horrible feeling - I once had an infection go septic and nearly died because A&E didn't believe my pain levels and noted anxiety on my record, so I am very wary of that

But I don't know, maybe I'm missing out on a level of support that exists but isn't available to me atm. It's so hard to know!

Yeah, I totally agree with everything you’ve written there.

I had the choice taken out of my hands - that comes with different hardships but took the question you’re having to weigh up out of my hands. Everyone in the system knows my diagnosis . Most have treated me considerately so it’s improved my health care. A couple haven’t. Worse experience was a woman in gynaecology. The notes from my meeting with her totally disappeared and my friends joke that she destroyed them in case I made a complaint. I’ve found believing myself and going silent goes best for me (I used to over talk and over explain). The protections in place for vulnerable adults (yucky term) have given me more protection. And I guess being sectioned means they know now I can go from telling GP things just aren’t great to dangerous unwell in a matter of hours.

I have heard that EUPD diagnosis seems to carry more stigma within the medical world for some reason. I have no idea if that is true but I have heard it many times now.