Graham Morgan from the Mental Welfare Commission gave us a talk on the commission and relationships with professionals which was followed by questions and a discussion.
Relationships with professionals.
We talked about the relationships we have with staff, especially doctors and generally found graham had been more fortunate than others. Many people found a lack of humanity from staff and some felt boundary issues contributed to this. Some people felt judged by staff but some people talked of when experiences had been good. There was a wish for staff to know how we are affected when we are treated well and badly by them. Some people talked about how some doctors stuck purely to medicine as an issue and nothing else.
"I used to have a CPN who would make fun of me. I complained but it made no difference."
"You were setting the bar for what you expect high, I am happy with basic humanity from them as a first step."
"If only workers knew how fondly people who have been treated well by them feel and could learn from it and likewise if staff who have treated people badly knew of the effect of that on us and could learn from it."
"I had a CPN who had really tight boundaries and then she left and I saw someone else who was really friendly and I connected with her. She was more honest and encouraged me to take positive risks and I moved on faster. It made such a difference. She also went through wellness plans and was very supportive. You can’t be too wrapped in cotton wool."
"The first Psychiatrist I had I saw for a lot of years – he was old and just did medicine and that was it. He would find out how I was and would change or not change my meds and do nothing more – then I saw a woman who did a triangle approach –she worked on my meds but also helped with my practical life and finances and then on work based courses to get into occupation – she reckoned no one could get better from mental illness unless they had all three elements in their life – she was great – but it is now mainly back to those who are just back to medication and nothing else."
"I had a psychiatrist who was staring at me all the time – she traumatised me and practically forced me back to work and said if I didn’t take her treatment she would wash her hands of me
– we need compassion and empathy and some people lack these things – some professionals do not have this and cannot be taught it."
"Too much is based in symptoms. I am glad you met some good professionals . I am bipolar but it is not my condition. A psychiatrist tried to assess me and find an alternative medication but every time I met a psychiatrist it was a different one and often a junior doctor, often in training – I rarely spoke to a real psychiatrist over 3 years – every appointment is with a different dr. You can’t really build a relationship or have an empathic conversation with someone you only meet once."
"Sometimes the psychiatrists judge us and say we will amount to nothing but we can do fantastic things."
Employment
We talked about the pros and cons of employment when mentally ill and had mixed feelings.
Most people said that part time work was the best option, some people were very worried about being forced into work or having their benefits cut and some people felt that employment policies often did not understand the needs of people with a mental illness and did not reflect the reality of what people experienced in the workplace.
"I work voluntarily with refugees which I very much enjoy."
"I work full time – but sometimes it can be overwhelming when life is stressful – it is good to have a job, good to have money but also good to look after yourself."
"It is not just having a job but keeping a job; with bipolar you can put your foot in it and lose your job which can be very stressful. I work part time but have lost lots of jobs because of this in the past."
"I work part time and used to work full time - but for many of those years was very unstable. Having children gave me a break from work, now I am part time and would never go full-time again – when I was younger I felt I had to fit in and do a full time job, now I think it is healthier doing a part time job."
"Time off for sickness if you are mentally ill ; I am not sure if work places get the whole picture when they are looking at this."
"Wellness action plans can be good for this."
"Enable Scotland will meet with people who need help to get back to work and will contact employers and let people know their rights – they have been really good talking about flexible working hours and things like this."
"We worry about the government plans for welfare and forcing us back to work."
"Access to advocacy can help if you are worried about work or going back to work."
"I have worked 15 years in this beautiful country –I did a PHD which was challenging and sometimes overwhelming but I was supported by my wife and in work. Then I joined X a Health organisation and working at the office until the pandemic and then switched to remote working for 2 years and found this very good and very interesting - but sometimes found it controversial in my experience and in comparing it with policy -there were lots of policies and adjustments if you are unwell – but it is how your colleagues treat you which is sometimes not consistent with policy – I experienced less good treatment and ended up off sick – because of how people do not realise how important it is to treat people."
"I work part time; this helps more. When I was full-time, I was very unstable."
Advance statements
We discussed advance statements and personal statements –and heard that people had found out about them from these meetings. We discussed whether they were worth making.
Diagnosis
We discussed diagnosis and most people said that when they finally got a diagnosis that was accurate it was very helpful and gave them access to the right treatment. However this could take many years to happen. We also discussed identity and diagnosis, some people wanted to say that bipolar was only one aspect of them while others claimed bipolar as their main identity which they were proud to have.
"I find a diagnosis was really helpful – I didn’t know what was wrong with me or what bipolar was, that helped to start with but it also got me access to the right treatment and the right meds – but some people have experienced a lot of stigma because of diagnosis. I know some people have been given a new diagnosis which has wiped them off their feet – especially when they saw their notes which did not say they had the diagnosis they thought they had."
"I have had 3 different diagnoses – as a teenager it was depression as I had no manic behaviour – in my twenties I was schizoaffective with all sorts of meds being given me, none of which worked and then I got really ill, had more ECT and not ‘til after that they said I was bipolar and since then my moods have been a lot more stable than before – once you get a proper right diagnosis, it is great – the schizoaffective one confused the hell out of me – the right one is so helpful."
"Being given a diagnosis can lead to acceptance – I am bipolar. I see it as my identity – I am proud to be bipolar in the same way that someone is gay not they have gay; that is who they are."
"The first psychiatrist gave me the diagnosis in hospital and told me I was bipolar and my daughter said, ‘that is not my mum’ and the psychiatrist said ‘who have you told about the depression and low self esteem?’ and I had told no one – not even my children, friends or husband and she said ‘your first job is to share that diagnosis.’ and it was great. They were very sympathetic and supportive when I told people."
"Very important to know diagnosis but identity is important too. I meet people who share this pain in this community – we share a diagnosis – you know you carry the diagnosis for all your life – it will not just go away – it makes you realise that you are not alone or the first one - you are part of a community. Bipolar Lothian is a community too."
"I was given a diagnosis of depression and anxiety as a 14 year old and then when I was 35 it was bipolar. It was a ‘thank goodness' sigh of relief – I had been battling it for so long especially as the antidepressants had such a bad effect – but it was another ten years before I got the right meds. I was saying ‘I don’t think I should have any antidepressants. I found a voice with the diagnosis."
"When I had children I was really poorly but they couldn’t see what was happening – and had an idea about me that held me back. If I had had the diagnosis earlier I would have been more stable earlier."
"I was diagnosed with depression for many years. I realised getting a bipolar diagnosis is hard – because most of us don’t go to the GP when we are high, we don’t feel the need to, so they don’t see it. So the doctor tends to see only the depression."
"Often you don’t get a diagnosis until something really bad happens."
"Often it is when you are sectioned or in hospital or with the police – we need to find a way to do it before then – takes a good GP because we don’t see a psychiatrist until we are diagnosed."
"How do you decide to ask for a second opinion? Sometimes it would be good to get a new perspective."
Services
We discussed the situation of people receiving care from two countries at the same time.
"I have a private psychiatrist and I have to mediate between my Overseas psychiatrist and my Scottish GP regarding medication and drugs we do not use in the UK – the dose here is different to what is done in my home country – they have said I cannot have an NHS psychiatrist because I have a private one there."