This campaign has really struck a chord with me. It was created and publicised by the inspirational Kate Granger (@GrangerKate) who is a doctor, but also a terminally ill cancer patient.
This campaign has inspired health care professionals all over the country to introduce themselves by name before talking to patients. A very simple and common sense thing to do but frighteningly one that is sometimes lacking when health care professionals interact with their patients.
As a NHS trust governor I feel that I am in a good position to raise the profile of this campaign and in the field of Mental Health, in which I am particularly interested I think it would make a huge difference.
So tonight I am canvassing opinion on twitter and hoping to hear of trusts that offer Mental Health services and have signed up to this amazing initiative. I will keep twitter updated and blog again on the subject when I can update more.
Author: katcopley
Would love to meet those who gave me a hard time when I first became ill…
Today I was feeling nostalgic! I went somewhere that I hadn’t been for a good many years and when my life was completely different. This made me feel so many different emotions. Firstly I thought of how far I had come, how lucky I am and that the friends I have now are true friends who support me 100% and I certainly don’t need to worry about any stigma when I am with them. This has come about because of many factors including increased awareness of mental health in the UK as a whole, people often knowing more people who experience mental health problems because of increased disclosure and probably in my own friendship groups people have realised that sticking by me isn’t all bad news!
Today also made me think of the ‘friends’ I lost, the friends that visited me once in hospital and then run away, the friends that didn’t believe I had anything wrong with me and the friends who even said I had lied about my childhood experiences. I am sad as I would of liked to have longer friendships with more of my friends from school, I am sad as I am sure some may have experienced mental health problems themselves or within their families and I would liked to have supported them and I am sad because I can now for the first time in years say I am a good friend to people and I really value my friendships and my friends.
So yes I would love to meet some of my friends from school, not to give anyone a hard time but to continue to make people aware of mental health illnesses and keep the conversation going.
Haven’t blogged for ages … This is why!…..#uberbusy
I haven’t blogged for absolutely ages but I have had the most amazing month! Firstly I am well! Really well – no depression, no hypomania just steady … calm and well! Not only that I have coped with being ridiculously busy, quite a bit of stress (good stress!) and the odd panic attack in a way that I haven’t coped before.
As some of you may know I am a Christian and very involved with my local Church. I first went along when I was not even a year old and 34 years later it still plays a huge and wonderful part in my life. I am now an Elder and run the Messy Church with my sister in law amongst other things. I was married in the Church 5 years ago which was the happiest day of my life and the church has journeyed with me and supported me during every stage of my life and especially through my bipolar diagnosis and traumatic life events. This amazing fellowship and congregation of inspirational, devoted friends has just celebrated its 75th anniversary and boy have we celebrated! It has been wonderful to remember the laughter, some tears and worship that has taken place within the Church and been lovely to celebrate with the local community and members past and present. As the Church looks forward to the next 25 years or even 75 years I am also able to look forward knowing that I have the most amazing support network in place starting with my husband, family and friends and am so lucky to have the Church as a constant support as they also learn more about mental illness and as the stigma and barriers surrounding his sometimes difficult topic are broken down by friendship, fellowship and prayer.
Last weekend after the Church’s celebrations were over I joined with 47 others to celebrate the 50th Wedding Anniversary of a very special couple. Carole and Mike welcomed me into their home, family and friendship groups nearly 15 years ago after Carole was my tutor at college when I returned to re-take my a’levels at the age of 19. This followed my first hospital admission and I was so unwell. After supporting me at college Carole and I became friends and she has been there through so many difficult times and spent many hours in accident and emergency and psychiatric hospitals with me as well as providing me with somewhere to live at times. As I have slowly journeyed through recovery and got better at managing my episodes Carole has been there and helped me learn so much about myself and my illness and had been a major player in helping me get to where I am today. Last weekend 48 of us celebrated at Butlins and I am immensely proud of Carole and Mike, and their love for each other and for their family and friends is an inspiration.
The message from this blog for me is a reminder of the wonderful support I have, the people I have rooting for me and the fact that at the moment I am doing well and that taking a day at a time is the way forward for me. I am well at the moment and yes I am terrified of getting ill but I need to live in the now and I am going to try so hard to do this.
Massive thanks to all my family, friends and Church fellowship – love you all.
Keeping busy but not too busy! #recovery
I haven’t blogged for a while mainly because I have been mega busy! I am really enjoying being well however at the back of my mind is a nagging worry that won’t go away. I am worried about getting ill again and that this exceptionally busy period that I am having at the moment ( which I hasten to add is very enjoyable) might prove to be a trigger. I find myself regularly checking for symptoms and lying awake thinking about my day and whether there are any signs that I am going downhill that I missed.
Thank goodness that apart from being tired which isn’t out of the ordinary I am definitely not feeling depressed or even low, I am not overly anxious and have no hypomanic symptoms.
Due to the fact that I have this constant nagging worry & the fact that looking after myself is so important I have come up with a few things that I am going to do everyday. I am hoping that these things will lessen the worry and reassure myself that I am doing ok. My list so far is:
-Letting myself have a short ‘Worry’ time each day and then try to leave my worries for the rest of the day.
-Have at least half an hour (hopefully more when I am less busy) of ‘me’ time each day where I write a blog, read or watch TV.
-Have regular breaks at work and make sure I eat 3 times a day
-Talk to family and friends and listen to them if they think I am overtired or if they have any concerns
-Remind myself of my WRAP regularly but without obsessing about possible symptoms
I have come such a long way over the past month or so and I am hoping that this will continue for the foreseeable future but I also don’t want to be dragged down everyday that I am feeling well by worrying about getting ill.
It’s a WRAP!
I thought I would write a blog about my Wellness Recovery Action Plan (WRAP) as this has been a great help to me and although it isn’t for everyone it might help people to read about mine! I also find that it reinforces mine to myself and than can only be a good thing.
Mine might not be the method everyone uses but it is one way:
Wellness Tools:
(Activities I enjoy or that help me feel better)
Spending time with husband & family
Talking to Friends/Socialising
Mindfulness
Going to Church
Keeping a routine
Using my light box
Reading
Singing
Watching things on TV I enjoy
Listen to music
Doing things I know I can do
Write a blog
Chat on Twitter
Daily Maintenance Plan:
(Things I should try and do everyday)
Keeping a routine
Eating 3 meals a day
Getting some rest
Taking regular breaks at work
Resting at home everyday
Reading for 1/2 hour everyday
Have a shower
Do something I enjoy
Keep my mind active
Mindfulness
Get out of bed everyday
Triggers:
(Identifying those triggers or events that might make me feel worse)
Tiredness
Emotional events
Seeing people that may of caused me distress in the past
Skipping meals
Too much stress at work
Spending too much time alone
If any of these triggers occur I try and implement an action plan:
I try and stick to my daily maintenance plan
Call someone on my support list
Practice mindfulness
Early Warning Signs:
(Subtle signs that I may becoming unwell)
Not sleeping more than about 4 hours
Slight paranoia
Anxiety in certain situations
Becoming very low
Spending too much money
Racing thoughts
If I notice these signs I then try and implement an action plan:
Ask for some help from support list to implement daily maintenance plan
Ask people for help and support
Try to have company where possible
Start using PRN – probably promethazine
When things are getting worse:
(What signs I should look out for when I am feeling much worse)
Wanting to sleep all day but not able to sleep at night
Anxiety getting worse & shaking some of the time
Not eating at all without prompting
Having thoughts of suicide
Hearing or seeing things that others can’t
Paranoia so bad that I can’t leave the house easily
If these signs are present then again I try and implement an action plan:
Call GP
Think about implementing crisis plan
Try and ensure I am not on my own
Talk with people who are able to offer support
Think about taking Diazepam to control symptoms
Talk to work about implementing flexible working
Crisis Plan:
Ensure that GP is involved at this stage and in discussion with me consider contacting CMHT.
Ensure I have medication to help with symptoms
Attend A&E as a last resort but ask for help from support network.
Ask for support in monitoring PRN so that I am safe
Identifying where on the scale my suicidal thoughts are.
Carry my WRAP & care plan from GP with me to show to other professionals I might meet.
This is my WRAP that works for me and helps me to feel more in control which I find really important. I constantly re-visit this WRAP and share its contents with those involved in my care. It has also proved useful at work to ensure I am supported correctly.
Some of my thoughts on writing a complaint to a health care trust as a patient
I have been thinking that I should put together some of the things that I consider and try to do when making a complaint to my local NHS trust regarding poor care. Please note these are my own personal thoughts but some people may find some of this useful so I thought I would blog! These thoughts also relate mostly to complaints made about poor mental health care.
1. I normally don’t write a letter of complaint until I am more stable than I had been during the time that the poor care took place. This isn’t always possible as sending a letter within a certain timeframe might also be a factor but it is worth thinking about.
2. I try and write some positive points about the care I received as normally because such great people work in the NHS I often am on the receiving end of some excellent care. It is vital to me to mention this as these comments can be passed on and I am a great believer in sharing good practice and hope that trusts would do the same.
3. I once went on a course about using Non Violent Communication effectively and always make sure I use these techniques when writing any complaint. The basic principle is using the ‘Fact, Feeling, Need, Request’ method of communication. State the facts, state clearly how you feel (without too much emotion), say what you need and what the request would be to meet the need. This approach is not easy and I might not of done it justice by my description here but I really swear by it and use it to help colleagues in difficult work situations as well.
4. I have a couple of good friends who often read my letters before I send them. This is mostly because I want to be factual, correct and not too emotional. Yes I want them to know how I have been affected but also not get carried away and so having someone to read through what I write is vital for me.
I would be interested to hear other tips people might have about complaining. It is vital that our voices are heard so that trusts can learn from the mistakes that are sadly all too often made.
Received my letter of discharge from MH services – where do I go from here?
So after quite a bit of prompting on my part I finally received a copy of the discharge letter that was sent to my GP. I had asked that this stated that they had received a copy of my care plan from the GP as I wanted this in writing as I couldn’t take their word for it that it had been uploaded to the system. Thankfully the letter did include this and I am grateful for that however I have quite a few issues with the content and accuracy of the letter .
I was originally referred to MH services by my GP last November during a crisis and had been seeing a care coordinator monthly since then. I came out of crisis around Christmas time and was actually fairly stable until relapse in early March.
However the letter doesn’t distinguish between the 2 separate episodes and muddles the details of both into one to somehow imply that I had one crisis in November and was provided with support after that and therefore they are totally justified in discharging me now.
I thought it would be useful to blog about this before writing my complaint as it helps to rationally challenge the points that I think are incorrect and maybe get some of the emotion out before putting pen to paper. I am also hoping that I can encourage others to speak up about their care and I am pleased that I am waiting until now (in a much more stable place) before challenging some of the care that I received.
The first sentence of the letter states that I was referred to CMHT by the mental health liaison at Accident and Emergency last November. This isn’t true as I was referred there by my GP because I waited last November in Accident and Emergency for over 4 hours and no one saw me. I attended Accident and Emergency this March and was seen by the MH liaison but there is no mention of this and that puzzles me and I think there is more behind this error.
The letter mentions that during the period between November last year & March this year I was seen by the CMHT and by HTT. The letter combines these 2 and this is confusing as last November when I asked to be referred to HTT I wasn’t and this letter implies that I did receive that help when in fact I was only referred to HTT during the crisis in March this year. By combining the 2 episodes in one I feel that professionals are trying to lessen my condition and the impact it has on my life. Are they trying to justify the very quick discharge by not referring to a crisis this March?
My care coordinator then makes what I presume is a typo by stating that ‘Mrs Copley reported that she is back to work on increased hours and attending on a daily basis to enable her (to) manage her workload’. I think this should read ‘Mrs Copley reported that she is back to work on decreased hours and attending on a daily basis to enable her to manage her workload’. Whilst I appreciate that mistakes can be made it is vital that attention is paid to detail which is supposedly something the service user has said as I obviously didn’t say that and my GP might be confused or wonder why this is different to what I had told her. Paranoia plays a huge part in my experience of Mental Illness and so mistakes like this which may seem small actually add to my paranoia.
The letter itself was disjointed and it wasn’t very well written at all and I think this gives the impression that the care coordinator is obviously under huge time pressure and that important letters about discharge of bipolar patients from the mental health system are obviously not given the time they deserve or need.
All I can say is that if I wrote a letter of this quality and with mistakes like this in my job I would be pulled up about it therefore I can’t understand why mental health care should have a different set of rules.
I plan to reply to this letter addressing my concerns with it and expressing concern about some of the other aspects of my care but I will ensure that I highlight the good examples of care as well.
Thanks for reading and I would welcome any comments!
GP back in the driving seat!
So today I went to see my GP and it was my first contact with a professional since I was so abruptly discharged over a week ago. I have really missed the support of the HTT who I saw 10 days ago and my appointment last Wednesday with my so called care coordinator was the shortest ever and certainly not a therapeutic help.
My GP was obviously surprised to hear I had been discharged and hadn’t been informed that she was now the main point of contact for someone with bipolar, just out of crisis and who had been under the HTT team only 10 days ago in the midst of a bipolar episode. She was though professional and straight away confirmed that she could see me fortnightly and also if I used the email system it would be picked up and then someone would act on it.
She also checked again with me the crisis plan and I was as always impressed with her knowledge of mental health, her trust in me as a patient and also reassurance as she knows I am very anxious about my illness and the lack of support.
Today has given me some reassurance that I was in desperate need of however it isn’t really what I know I need but it has helped me as I am less anxious than I was last night.
I now feel in a position to write to the trust about my care. It is vital to give praise where I received good care but also highlight the very damaging incidences that affected my safety and well being during the recent episode.
Stuck in a rut of frustration!
I am pretty frustrated:
Fed up with feeling unwell & battling with the bipolar. I am probably doing too much at work however working flexible hours was becoming untenable and the workload being experienced by everyone at the moment can’t fit in to a full time role let alone one with fewer hours. There is no slack in the system to allow for people to have time off and not feel worse when they come back and whilst I get amazing personal support and some reasonable adjustments, I don’t think anyone can do anything about workload and to be honest I understand that. Therefore working full time is probably the less risky and less stressful option.
I am seeing my GP tomorrow and this is frustrating me in some ways as well. I am so glad I am seeing someone as I am really suffering from not having professional support however I know that my GP won’t be able to offer me what I really need but also 10 mins isn’t long enough to put a plan in place about where to go from here.
I am also frustrated as I feel I am battling with or against some people. During the last few weeks I have been really stretched at work, been told to ‘behave myself’ by someone supposed to be in a caring role and obviously the Mental Health system has also been very unhelpful at a time when I am so vulnerable.
One thing I am trying to do is to look at the positives which isn’t something I find very easy but if I look back to this time 2 weeks ago or 1 week ago I can see small improvements. These improvements give me a boost for a while but the symptoms that I am still experiencing often override the positives and therefore I keep thinking I am going back to square one.
Thankfully I have people around me to keep me going, offer reassurance and help me see the positives.
This is though a massive struggle and the darkness is pretty overwhelming at times.
A blog for World Bipolar Awareness Day
So today it is Bipolar awareness day. As I sit here writing this I am once again battling to recover from a bad episode, strangely not like any other I have had before.
If I am honest probably most of my episodes are different in some way to the one before and I don’t mean just either depressive or hypomanic. Within each state of Bipolar I can experience different symptoms, for different lengths of time and each time I may learn new ways to cope or learn something new about myself but all in all they are just plain awful.
During the past year one thing has really changed for me – I have started to talk more about my experience of Bipolar, not just on twitter and through my blog but with my family, friends, at church and at work.
One thing I have learnt through this is how different everyone’s own experiences of mental illness are and that talking on twitter has shown me how everyone with Bipolar also has their own very individual experiences, symptoms and ways of ‘coping’. If only some health care professionals also had this insight too!
As far as people outside of twitter go I have talked to so many people who really didn’t know what was wrong and who might not completely understand but have shown so much support. Other people have been keen to share their experiences of family members with mental illnesses and have told me how they appreciated me talking to them about my experiences. Obviously I have had negative conversations and negative encounters and yes they still hurt so much and hopefully in the next year I can carry on working to combat mental health stigma for myself and others.
At the moment the battle goes on! I am struggling to ride the roller coaster but I know it will change however long it takes as it is so unpredictable.
I send my love, support and solidarity to those living with bipolar and other mental illnesses and I especially thank twitter for the welcome and support during the past year.
My Journey through the world of Mental Health 