The painful process of accessing mental health services in the UK is a bit of a rite of passage, and it can be a rocky path. From that initial – nerve-wracking – GP appointment, through to needing to access secondary care, to getting prescriptions right, the world of mental health care on the NHS is fraught with pit holes.
My own experience has been mixed; for every great professional I’ve met, I’ve met one bad to match it off. The first GP I saw misdiagnosed my mania as anxiety and prescribed me Citalopram with the instruction to ‘call reception if things get worse’. The second attempt to be listened to was the polar opposite experience and I left that office with a referral to secondary services, that I so desperately needed.
Lots of people out there have been through this process, and lots of people are willing and ready to share their experiences to make the path to wellness a little smoother. Here’s my top tips, plus a few from people online who kindly responded to my request for their ‘one thing’ they wished they’d known at the start of the journey.
The First Steps
Taking the first step to speak to your GP about the issues you face is a brave move – so give yourself a high five for deciding you need to seek help. The big two here are:
1. Be prepared,
2. Don’t hide the tears.
First off, you will need to decide if you are able to go in yourself and speak up for what you need. If you know this will be hard for you it might be worth bringing an advocate into the appointment; whether that’s a trusted friend, parent, sibling, partner, etc. or if it’s someone who is trained to advocate (Google will point you in the direction of advocacy services in your area), it often feels easier to talk if you have someone to help you get your words out.
The next part of preparation is information. Keep a mood diary if you’ve been depressed or experiencing mood fluctuations. If you’re seeking help for anxiety, work out what triggers it and how it affects you. Whatever you’re going to see your GP for, remember that this doctor has around 7 minutes to see you, assess you and signpost you. Any information you can take in with you will help them make their decisions on how to help you.
Second point – don’t hide those tears! To be honest, this sounds slightly cynical but if you’re going in and saying you’re feeling hopeless (for example) and you spend the appointment with a smile on your face – however fake – that doctor isn’t going to hear your key message of “help me!”. When I saw the second GP I was manic and probably couldn’t have hidden it if I’d tried; but he saw just how agitated I was and sent me straight up to A&E for assessment. They will listen if you are honest.
Last point on that first appointment – get a second opinion! There is nothing wrong with disagreeing with your GP’s opinion. You are the expert on your own issues in this scenario. Ask to see another doc. Change GP surgery if you must (I did!). But don’t accept an answer you know in your heart to be incorrect.
So What If My Doctor Doesn’t Believe Me?
This also could be headed up as ‘What If My Doctor Doesn’t Do What I Want?’ We all have our own rationale for wanting certain courses of treatment. For example; you’re depressed but you aren’t happy with going on antidepressants, but your GP suggests this as the first option. There’s no reason for you to say ‘No, I want to try talk therapy,’ but also bear in mind that resources for talk therapy are generally limited in your area. You can get on a waiting list for a variety of therapies depending on your local trust’s services, but trust me, you will have to wait! And probably wait and wait. I’m not writing this to make you feel like it’s an impossibility, but simply to set out the facts. It may be worth discussing those antidepressants again with your doc, as they can certainly make things bearable before you get to see a counsellor.
And if your GP is really, really not believing in what you’re saying, then as I’ve already mentioned – get a second opinion!
OK, So I’ve Been Referred To Community Mental Health, What Now?
First things first, the NHS Constitution states that a referral to a secondary care (i.e. CMHRS, CMHT, EiIP, PD Forum, etc) consultant should take no longer than 18 weeks. Having said that, if you’re not feeling good, 18 weeks is a long time, and it’s good to check in with your GP if you’re really struggling to wait for your referral to go through. When I was seriously unwell, my doctor managed to get me an initial assessment within a couple of days. But only use that option if absolutely necessary. If you can manage to wait, then wait – the NHS is over-stretched without additional pressures. It might sound a little callous, but if you’re not in danger of hurting yourself or others then please try to wait for the scheduled assessment.
This was absolutely the most nerve-wracking part of my referral. I wish I’d known what to expect going into that room; I remember taking a semi-precious stone along with me and obsessively staring at the pattern on it, first in the waiting room and then whilst the consultant was trying to talk to me. My overriding memory of that appointment was question after question, and I vividly remember answering those questions without any kind of filter; I was totally honest about everything because I didn’t have the option to not be. Which shows that my points about your initial chat with your GP apply in a psychiatric setting too; be honest, be truthful, and don’t be afraid of what the psychiatrist and psychiatric nurse think of you – they can’t help if they don’t understand everything that’s affecting you and the extent to which you’re struggling.
From memory, it was a packed room for that initial assessment. You can reasonably expect up to three or four people to come and listen and take notes on your case. For me, there was a social worker, a psychiatric nurse and a psychiatrist there to (what felt like) grill me for an hour. It was intense; I suspect it sounds scary but it is what you have to do to get help for your condition and I promise it is worth it in the end.
The assessment will be used to signpost you to (fancy NHS term for directing you to) the relevant service that will help you most. You may stay with the Community MH team, or be passed onto the services of a specialist team like Early Intervention in Psychosis (EIiP). It will all depend on what the psychiatrist understands to be your primary issues based on the assessment. The assessing psychiatrist will also be able to help you get started on medication to begin to get things under control. If you really are in danger or putting others in danger then they may consider hospital; the big tip here is to comply with their suggestion, as hospital is a much nicer place if you’re not there under section (involunatry admission).
When I first started to be treated by EIiP, I was seeing my care co-ordinator weekly, and my psychiatrist quarterly. With the NHS being the way it is, I quickly got used to a changing staff of care co-ordinators and community psych nurses working as my key worker, but thankfully I kept the same psychiatrist for the three years which was a true blessing. Most teams, I believe, want to work with you to reduce your dependency on their services; I thought that meant that I’d be abandoned for longer periods between visits over time but that wasn’t the case. The best thing about secondary care for mental health is that you have someone there for you and they can talk you through any questions you have or issues you’re facing.
How Can I Help Myself?
Two things; awareness and research.
Firstly, the single biggest thing I ever did for my own health was work my socks off to gain awareness, or ‘insight’, into what was going on for me. I didn’t get a formal diagnosis until the third year of treament under EIiP, which in a lot of ways made it easier for me to understand my own symptoms as they related to me, rather than as a collection of behaviours that indicated a neat check box for me to fit into. With the help of my husband, my CPN and I worked on a list of red flags, and made a crisis plan, and worked out my triggers, and all those little things added up to my own understanding and awareness of when things were deteriorating. It wasn’t perfect; I would really only say that it’s in the last year that things have begun to slot into place for me in a way that allows me to see my own illness in an objective fashion.
And then, research. If you have a diagnosis, read about it; don’t expect every symptom of yours to match every symptom on psychcentral or Wikipedia, but if you read and read you will understand all the psych-jargon that comes with a diagnosis a lot better. The other thing to look into is extra help that is available in your area. For example; You’re in a bad spot and you need extra support, but you really don’t want to/need to go into hospital. Check your area for any crisis accomodation (ICBs) on Google, and discuss that option with your care co-ordinator. Google is your friend in pretty much any situation – check it out for local resources like support groups, or charities that may be able to help you. Some areas have Crisis Cafés that stay open until late, some areas have groups that are for people with mental illness but don’t centre themselves around the topic of mental health (I know there’s a few walking groups out there for example).
Charities are fabulous for extra resource. The Samaritans are famous for their helpline, and for less urgent advice you can contact Mind. Mind also have a legal advice line, which I have used before to double check things relating to work and discrimination. Another Mind resource is Elefriends, which is an almost-twitter that is private to members and you get over 140 characters! I love the Elefriends community, it’s a great place to go to vent, get advice from peers or help support other people.
In the ‘real world’ you can check with your care co-ordinator for support groups, or look for a local Mind charity or other services in your area. If you want to meet up with people for extra support, you can almost certainly find something via Google; if you’re feeling brave or have come a long way in your recovery you can even set up a peer group on meetup.com (Woking Mental Health Meetup is mine!).
Will I Ever Feel Better?
Yes. With work, and time and practice (yes, practice!), you will find yourself on the path to recovery. You will have slips, trips and blips along the way but each one will be smaller than the last and you will bounce back quicker. Things like mindfulness and meditation can be incredibly helpful and improve resilience (another psych-buzz-word favourite). And in a truly helpful example of ‘Do as I say, not as I do,’; exercise and being active seems to have a lot of evidence towards being a super-helpful remedy for the times you feel like nothing is going right.
Hopefully this mega-long piece has provided some helpful hints for you to take along on the journey to recovery. If you can think of anything else, please let me know in the comments.
For general mental health info: mind.org.uk
For help with work: http://www.richmondfellowship.org.uk
For help with crisis: 116 123 (Samaritans)
or: 111 (NHS non-emergency number)
or: 999 (If you are in serious danger of hurting yourself or others)
Online psychological resources: tinyurl.com/n9bv3qu (6 Positive Psychology exercises)
or: http://www.getselfhelp.co.uk/stopp.htm (STOPP method from CBT)
or: butterfly-project.tumblr.com/ (The Butterfly method for stopping self-harm)
or: moodgym.anu.edu.au/welcome (online CBT resource)
Finding local NHS services: http://www.nhs.uk/pages/home.aspx