Tag Archives: continuity of care

Dear GP 2

There is an amazing account on Twitter called Dear GP where people write letters to their GP about their encounters with mental health professionals in the same way mental health professionals write letters about their patients to their GP. You can visit the website here. I thought I would have a second go at this below after an encounter during lockdown. My first attempt is here.

Dear GP

Today I had a telephone consultation with care coordinator M due to the current lockdown conditions. This was an unscheduled appointment and was preceded by a text message which stated that she wanted to talk to me straight away and was demanding of immediate contact without considering my prior commitments.

When we spoke to each other on the phone, M was in a jovial and friendly mood. She seemed to need reassurance about our working relationship due to comments from other staff members based on what she had said. She denied she had said anything to other staff members about our working relationship and stated “we work well don’t we?”. Her need for reassurance shows, I believe, an insecurity and possible fear of abandonment.

We then discussed my mental wellbeing. Here M was keen to show that everyone is struggling and dismissed suicidal ideation. Her concentration during this part of the conversation seemed to dip and she appeared to want this to end quickly.

Her next actions I believe confirm her fear of abandonment. She decided to put an end to our working together stating a too high workload. She did however say that I could always let her know good news. She seemed not to wish to cut ties completely showing difficulty with endings.

Overall I think M may need to work on her social skills but I do not wish to see her again and feel she will be fine under your care. Please do not rerefer.

Yours

Jo

Feel free to share your own experiences in the comments or on Twitter, Facebook or Instagram.

Will I Recover?

“Will I recover?” is often the first question you think when you get ill. You wonder whether things will ever be the same again. You wonder what the future holds. This is the same whether it is a physical or mental illness, but it seems less clear cut when the illness is mental (though I know many physical illnesses carry the same ambiguity).

I have a mental illness for a long time. In fact in my head I don’t ever remember feeling OK mentally. This has meant recovery to me has always felt unclear. The major thing with the question “will I recover?” is defining recovery. This is tricky in mental illness, maybe more so than physical illness, where the lines aren’t always obvious.

Recovery for everyone is defined differently. For me the definition below is what I feel I aspire to most.

My reason for identifying with this most of all is that it is not about going to a state where my mental illness is completely gone to be “better”. My recovery will be about managing my condition.

However… I have still gone through the “Will I recover?” question looking for the answer that says my illness will be completely gone. I think that’s what a lot of people want. It doesn’t seem fair that managing a condition is all we can hope for. It’s not like the broken leg that is often used in the analogy of getting treatment for a physical illness versus a mental illness. It is not clear cut. It takes a lot to feel well with a mental illness.

This is still a complicated idea as recovery is still what is aimed for in some mental illnesses like depression where complete recovery is possible in some cases. I’ve even been told that those of us with Borderline Personality Disorder (BPD) may be classed as recovered as we won’t meet the criteria for a diagnosis with time and treatment. However for many of us it will be about management more than being completely better so for us this is our recovery.

So back to our main question “will I recover?”. There is no simple answer. Will we ever be how we were before our illness? Probably not as it changes us and that’s not necessarily a bad thing. Will we be able to live a decent life? Yes. It won’t be easy but there is hope. Its not easy to see in the midst of mental illness. I struggle with this most days and even as I write this it’s something I’m struggling to believe but I’ve seen others manage so that’s my hope. Hope for recovery, in whatever form, is what we need to keep. We may just have to adjust our thoughts on what recovery is for us.

I’d love to hear your ideas on this topic. Feel free to share in the comments or on Twitter, Facebook or Instagram.

Picture from Pinterest

N.B. Since writing this post I have come to dislike the word recovery with a passion. I’ve decided it is not the word for me and I don’t wish to use it in relation to dealing with my mental illnesses. I know this is a personal choice and I respect other people’s choice to use the word recovery.

Kindness At A Higher Level

We live in a society that is often far from kind. I’m not talking about individuals, I’m talking about policy and societal norms. Being individually kind is important but we need kindness as a society to make a larger change.

Unfortunately we live in a world led my money rather than kindness and what is best for people. I can understand this. Money is finite and so we have to spend with care and this can mean cuts that are the opposite of kindness. We see this in mental health services all the time. People are turned away as not sick enough or not enough resources. People are sent miles from home when unwell and needing the kindness of family close by. There are some changes that really need to be made and cutting more and more is doing the opposite of kindness and therefore worsening mental health issues at times.

Also as a society we are far from kind to those who attempt to end their life. Many are labelled attention seeking and selfish. Many a person has been heard on a train that has hit a person berating them for ending their life and delaying people. The kindness that this person needed appears to of been absent in their life and their death. Instead of asking what could of been done to help them before this event they are condemned for seeing no other way out.

Society is also cruel in its use of social media. While social media can be great there are the trolls and the nasties who are far from kind. They band together to bring cruelty to one person. They push people over the edge as they can’t show kindness. They condemn people as guilty before hearing the full story. They forgot that a little kindness could improve the world and keep people alive.

By changing our outlook from the top down we could prevent so many deaths. By acting as a society we could improve life for many. It’s time to unite to be kind as well as individual acts of kindness.

I’d love to hear your views so feel free to share in the comments or on Twitter, Facebook or Instagram.

One Year From The End Of DBT

The 18th December 2019 marks one year since I finished DBT skills group. A whole year. It feels both not very long and forever. So I thought why not have a look back at how it has influenced me.

Since finishing DBT my mental health has been really up and down. My year was going well until August time. I still had major mood swings and was self harming but I was coping and building up my life. This all changed. The truth is I came off some of my medication by myself, no tapering, just cold turkey. I had my reasons. And these were accepted by the mental health team when they found out. However it led to a major crisis which was picked up, maybe ironically, by the facilitator of the DBT peer support group I started attending in August. But this really is unrelated to how I have been managing with the DBT skills. I just wanted to give a bit of background information on my mental state.

So as I mentioned, in August I started attending a DBT peer support group. It was set up with my local mind with the support of the NHS Trust that runs the mental health services in my area. It was designed to be the follow up to doing the DBT skills therapy group. Only people who had done DBT could join. I’ve found it amazing. I love the people. Even the facilitator has BPD and done the six months skills group. Everyone is on a level and so supportive of each other.

We use the time to discuss issues and how we can use DBT skills in those situations. This is what I find particularly helpful and what I needed in the first place. I’ve found that I’m definitely putting the skills to more use now I have the support of the group. Some situations have definitely improved and there is more of a chance I will use the skills or ask for help than self destruct. I’m not saying I’m perfect but I’ve definitely seen improvements and found myself embedding skills into life rather than having to think “which skill can I use now?”. It’s become a little bit more automatic. Hopefully this will continue.

One area I still really need to work on is identifying my emotions. This is something I still struggle with. I really need a pocket book I can carry to refer too until its a bit more automatic. This would then hopefully allow me to bring those emotions more under control. I won’t say “not great” or “fine” or “it’s been a bit difficult” when asked how I am and be able to express myself more easily. Well that’s the idea…

Another thing I need to work on is finding a way to reduce my self harming. The thing is at the moment I don’t feel I’m at a place to work on it properly. I also need to get over the fact my self harm is not impulsive so the distress tolerance skills don’t seem to work for me.

Overall I’m finding the skills more useful now and having the follow up has definitely helped me. I’m seeing the point of them. I’m seeing their potential. Hopefully it will help things to improve.

For more information about DBT, you can look here.

Picture is from Pinterest

All I Want For Christmas

I was thinking about things I’d really like for Christmas. Obviously there are the materialistic items (🤞Harry Potter and The Goblet Of Fire illustrated edition) but also there are some huge things I would love to see happen personally and more for mental health in our society. Therefore I thought I’d share some of my wishes (though I’m aware with just 2 and a half weeks to Christmas (at time of writing) these are unlikely to happen, maybe 2020).

1. No suicidal thoughts

This is personal, although I wish it for everyone. I’d just like to be like others and not be wanting to die on a near constant basis. It feels impossible at the moment when my first thought on waking is I wish I wasn’t alive. It would be nice to have at least a break from the overwhelming thoughts of dying.

2. Shorter waiting times

This is one for everyone in mental health services. Often we wait forever for support. It can be from weeks to months to years. It’s really not good enough. I’ve been referred for therapy again and been told if the referral is accepted I could be waiting up to two years. We need real change in this area to stop people falling through the gaps.

3. Continuity of care

This is huge to me and so many others. Seeing the same person is essential in all areas of health but the turnover of staff in mental health is huge. This means we often are faced with new staff at our most vulnerable who know nothing about us. I’ve lost count of the number of psychiatrists I’ve seen in the last two years. It is nearly always someone new. I’m on my fifth care coordinator of the year. The changes effect my mental health massively. We need to retain staff.

4. More money for mental health research

Mental health is one of the least funded areas of research in medicine. Yet again it is the poor relation in health care. It is also one of the least understood areas. This needs to change when it effects so many people. It would also help other areas of health care as helping people with their mental health aids them looking after their physical health too.

5. Better self esteem.

This is a personal one. I hate myself. It’s not a secret. I have no feeling of self worth. I put myself down constantly. It needs to change but it’s a struggle so if I could get it magically fixed for Christmas that would be great.

6. My friends to be well

My final wish is that all my friends have good mental health. That they feel better. I want so much for them to see their worth. That they are awesome. In fact I want it for all of you. You are all fabulous. Thank you for being amazing.

Feel free to share your own Christmas wishes in the comments or on Twitter, Facebook or Instagram.

Picture from Pinterest

Dear GP

There is an amazing account on Twitter called Dear GP where people write letters to their GP about their encounters with mental health professionals in the same way mental health professionals write letters about their patients to their GP. You cam visit the website here. I thought I would have my own go at this below after an encounter with a member of staff who is no longer involved with my care.

Dear GP

Today I met with care coordinator P. She was casually dressed in jeans and trainers. She seemed disorientated and unsure about what was happening. She did not know where she had to be and was indecisive of her next steps. She appeared very disorganised and had not booked a room or remembered that she was meant to be attending my psychiatrist appointment.

Before the psychiatrist appointment, P appeared to disappear and it soon became apparent she was making secretive actions with the psychiatrist. She made no eye contact when I entered the room and was distracted and on her phone throughout the appointment.

P made some abstract comments that only just related to the conversation between me and the psychiatrist. She was keen to please the psychiatrist and back up his treatment plan despite knowing the issues with this way forward, which had been discussed previously. P then showed that she had been trying to rid herself of responsibility and discharge herself from my care with no input from myself. This was overruled by the psychiatrist. She seemed disappointed in this course of action and did not make anymore conversation and avoided eye contact for the rest of the appointment.

At the end of the appointment, P decided to arrange another appointment but was inflexible in this leading to no date being set and no forward treatment plan being set.

I thank you for sending P to see me but I think that going forward there may be no working relationship unless her behaviour becomes more open.

Regards

Jo

To share your own experiences feel free to share in the comments or on Twitter, Facebook or Instagram.

Picture from Pinterest

They’re Not All Bad

I realise I’m quite often pretty scathing about mental health professionals but some of them are OK. Some do an amazing job and are let down by their colleagues. Quite often our bad experiences overshadow the good and we get into a negative view of all professionals, which is understandable.

I’ve had a few good experiences with different professionals. The negatives with these professionals only come when they are let down by the system they work within, otherwise they are amazing and make all the difference. When someone is caring and takes time with you it makes you feel valued and has a positive effect.

The first professional I found that was great was my art therapist. This was the first major mental health professional I worked with. At the time she was part of the young person’s service which was part of CAMHS (Child and Adolescent Mental Health Services) and worked with those aged 16-25. I was 20 when I started working with her. She treated me on a level with her. I was training to be a teacher and she treated me like a professional as well as a patient. She didn’t patronise me and went at my pace. Her main work was to get me to communicate and she did well with this but at my pace. She made herself available between sessions if I needed to leave a message or write a letter to help with the next session. She’d talk me through situations. She tried to teach me it wasn’t all my fault and at times I almost believed her. The main thing that sticks with me though is that the young person’s service was disbanded so all over 18 were to be taken on by adult services meaning I’d lose my therapy. However she fought for me and told them it ws totally the wrong time to take it away from me and that she needed to continue her work with me. This led to me having a further 18 months with her. Leaving her was hard and I miss her a lot. I still have the card she gave me at the end of therapy.

Another mental health professional that gave a good impression was a psychiatrist I had in adult services. She is the one that diagnosed me with BPD (Borderline Personality Disorder). She always valued my opinion and explained things when asked. She wasn’t perfect in that she didn’t discuss my diagnosis with me before it appeared on my notes but she was happy to go through it after. She was also a consistent presence for nearly a year before she moved on. This makes a difference.

The next professional who I had a good relationship was a care coordinator of mine, L. L was very proactive in my care and worked hard to get things sorted for me, not only with my mental health but my physical health too, even spending ages on the phone to a hospital trying to sort an appointment for me. She didn’t make me feel like our time was limited, it was always as long as I needed to talk. She took an active role. It was sad when she moved on.

My current care coordinator is also great. She’s not been involved in my care for long but has already shown me how great she is in that she gave me direct contact details for her and allows me to text rather than talk on the phone. She doesn’t mind me messaging between sessions and is quick to reply even if it is to tell me she’ll get back to me properly later. She’s also always on time or early for appointments which makes all the difference. I’ve kind of thrown her in at the deep end with my crisis but she hasn’t made me feel bad about it. I hope we can work together for a while.

Unfortunately these professionals are the exception rather than the rule. It shows as these are four out of many professionals that I have encountered. Hopefully things will improve and we will get more professionals that want to help rather than make us feel like an inconvenience or stigmatise us more. If we can be part of the education of professionals I think it would help them to be more empathetic and understand us more.

Have you had any good experiences? Feel free to share in the comments or on Twitter, Facebook or Instagram.

Picture from Pinterest

1000 Days Of Self Care

As many of you know, especially if you follow me on Twitter, I have been doing the #365daysofselfcare challenge created by The Blurt Foundation. This involves trying to do some form of self care each day. Recently I managed to reach 1000 days. Therefore I thought I’d reflect a little and discuss self care again.

First of all let’s totally go over the point that self care isn’t selfish. It is the act of looking after and treating yourself with respect. People may interpret it as looking out for number one but really it’s bigger than that. By treating yourself with kindness you are helping those that you care about too. In order to be the most effective friend, parent, son, daughter, carer or partner you need to be in a fit state yourself. Self care is important.

Why did I take up the challenge?

The reason I started #365daysofselfcare was because I knew things needed to change. Mentally and physically I was a mess and I had no respect for myself. I felt worthless. Then I saw that The Blurt Foundation had started this challenge. I’d never really considered self care before; why would I when I felt so rubbish about myself? I decided to read about it and discovered it didn’t have to be big gestures but instead could be simple things that meant I was looking after myself. I thought I’d give it a go, after all what harm could it do?

What do I do for self care?

As I’ve already said self care isn’t all about spa days or trips to the cinema (although they obviously do count as self care and are great if you can do them). Sometimes self care is a nap, getting dressed, having a shower, clean pyjamas or just eating and drinking. It might sound boring but self care doesn’t have to be exciting. It’s just important that you are looking after you.

What’s been tough?

Doing some form of self care every day is not always easy. To begin with it was really strange deliberately doing something each day to look after myself. It was a totally alien concept and I felt like I didn’t deserve to look after myself (and quite often I still feel this way). There were many days where I didn’t feel I had done anything that constituted self care. I learnt though through talking to others that I was actually engaging in self care without realising it. Doing it as part of the #365daysofselfcare challenge actually made it easier, especially at the beginning, as I felt I was doing it for other people rather than me which spurred me on when I felt worthless. Also having the support of The Blurt Foundation team, as well as other people taking part, made things easier too.

Overall I would highly recommend trying to incorporate some form of self care into each day. It helps me be a little more respectful of myself. It makes it easier for me to be there for others and feel less of a hypocrite when telling others to look after themselves. Even if you just start small it is just as important as the big things, maybe more so.

If you want more info on self care you can check out my blogs on the subject here or check out this information from The Blurt Foundation. A very big thank you to Jayne Hardy and the whole The Blurt Foundation team. If you want to follow me on the #365daysofselfcare challenge then head over to my Twitter. You can also keep connected on Facebook and Instagram.

Thanks to Jayne Hardy and The Blurt team for the pin.

Shutting Out The World

This is a personal piece. Please be aware some of the content may be triggering.

Things at the moment aren’t great. I’m not in the best place. My head is a mess and I’m not tolerating the world very well. Therefore I’ve been shutting it out.

I know this is not the best course of action but at the moment it’s what I can cope with. The world feels overwhelming. People feel overwhelming. Life feels overwhelming.

I don’t know what has caused this decline. I have theories. It could just be a depressive episode. It could be the disjointed care. It could be turning 30. It could be a number of individual things or all of them combined. I don’t know. And I guess it doesn’t really matter.

Shutting out the world means avoiding Facebook interaction. It means not messaging friends. It means not asking for help. Instead I have replaced it with self harm and thinking of suicide. I have spent my time dwelling on the fact that everyone would be better if I was no longer here and have been on a mission to prove it to everyone.

I’ve also been experiencing physical symptoms. My body aches. My head is thumping. And I feel sick. I either sleep too little or too much. I either have no appetite or binge on food. It adds to the mental difficulties.

I hate myself for the way I’m coping. I hate myself for doing what I logically know is the wrong thing. I see it as protecting myself but realistically I need people and I need help. What help they can offer I don’t know. I guess I won’t if I don’t ask. The thing is I’m put off asking at the moment by the fact I have no stable care. I feel a burden to everyone, including those paid to care for me. I know I’m just another caseload that they could do without.

So what would my advice be for anyone else feeling this way? I guess it would be to do what feels like the hardest thing, ask for help. You deserve it. You are worth it. Now I just have to try and believe it for myself.

If you are struggling the Samaritans are available 24/7 in the UK. If you are outside the UK then please check out the crisis help page which can be accessed via the menu. To follow my experiences you can do so on Twitter, Facebook or Instagram.

Picture from Pinterest

BPD Awareness Month Round Up

May is BPD Awareness Month so throughout the month of May I shared facts and information about the illness on Twitter, Facebook and Instagram. But I thought I would share them all on the blog as a round up.

1st May

This was my introductory post to announce that I would be sharing information about Borderline Personality Disorder.

2nd May

I thought it was important to share what BPD is and this seemed like a good explanation.

3rd May

Many people mix up BPD and Bipolar disorder. They are have similarities (mood switching, intensity of moods) but are two separate illnesses. For more info check out Mind’s website.

4th May

BPD can be diagnosed when at least 5 of 9 criteria are met (see image for the 9). There are many different combinations and each criteria is on a spectrum.

5th May

This was just to give people an overview of some yes’s and no’s.

6th May

A lot of people say BPD isn’t a real mental illness but it is. There are a lot of theories about what causes BPD, but this doesn’t make it less real.

7th May

A lot of people think that people with BPD are manipulative. We are not and this image explains why. All the people I know with BPD are awesome.

8th May

BPD is exhausting. Unstable moods are a major part of this illness and don’t just change daily but even from 1 minute to the next.

9th May

This further explains the extreme moods that we go through.

10th May

Just a letter many people with BPD would like to write.

11th May

A lot of people think that people with BPD are sensitive. In some ways we are but there are reasons for it. We notice every little thing and if something is wrong we blame ourselves and wait to be abandoned. This makes any kind of relationship hard.

12th May

Many people with BPD have their feelings invalidated because people can’t understand the extreme nature of our emotions. We know to you it may not be a big deal but saying we shouldn’t feel that way makes us feel worse.

13th May

We shouldn’t lie to people in general but lying to someone with BPD can be catastrophic. It can fuel all sorts of thoughts, generally against ourselves. We start doubting everything. Everyone feels unsafe.

14th May

Little things can cause a big reaction for people with BPD but we also know that people will not understand why we have reacted as we have so we tend to hide our feelings. This can result in using negative coping strategies such as self harm or eventually exploding at someone.

15th May

Self harm is one of the criteria for a BPD diagnosis. There are misconceptions about why people with BPD self harm but it is not to be manipulative or for attention generally.

16th May

Some people doubt the seriousness of BPD but it has a suicide rate of 10%. 70% of people with BPD attempt suicide.

17th May

This is my medication that I take in a month. Most of it is for my mental illness. There is no medication that is made for treatment of BPD but it can help us deal with some of the symptoms. Each day I take two antidepressants, one mood stabiliser and an antipsychotic. I also have a medication I can take when my anxiety is overwhelming.

18th May

This statement may sound a little reactive but it has some truth. People with BPD don’t only feel negative emotions strongly, we feel positive ones just as intensely. This means we may come across as quite intense in relationships. But we genuinely love you lots.

19th May

Anger can be a problem for those of us with #BPD. With the intensity of emotions, our anger can be an explosion of rage. It can burn for a long time even after the other person/situation is over it. It will play on our mind. We may do or say things we regret. Sometimes we will turn it inwards.

20th May

I hate this about myself. People with BPD do get jealous of friends hanging out with other friends but we do not do this because we feel you should only hang out with us. We actually feel we are not good enough for you and are scared you will leave us.

21st May

People with BPD are very aware that they are responsible for their actions. Maybe too aware as they are constantly judging their words and actions. But sometimes, and we are not using it as excuse more an explanation, our illness causes us to act in certain ways that are difficult to deal with for others and ourselves.

22nd May

Quite often people with BPD have trouble naming their emotions, which when you feel them so intensely and act out on them can be a problem in getting others to understand you. It is also frustrating as we wish we had the words for what we’re experiencing so we can get support.

23rd May

This is something that is currently hitting me quite hard as I turn 30 in just over a week. This isn’t exclusive to BPD as many people who have a mental illness but I just wanted to share what kind of impact BPD can have. It is a serious illness.

24th May

People with BPD struggle with their sense of self. Part of that is taking on things from other people and our sense of worth often comes from other people too. This means we do our best to be liked so we feel worth. We also put a lot of pressure on ourselves to be perfect and is part of why when we make a mistake we take it so hard.

25th May

People with BPD may struggle with a se se of self. In response to this they take on bits of other people depending on who they’re with. Therefore when they are without someone it can be a struggle to know who they are so they cling to people and may appear needy.

26th May

Living with BPD for me makes me feel like I don’t belong. I feel like I don’t fit in anywhere. The world feels like something I can’t navigate while others seem to just get through. Little things are big. Relationships feel like a huge effort. Even simple socialising is a huge minefield waiting to explode in our faces so everything gets analysed.

27th May

It is a myth that people with BPD are all abusive. In fact we are quite likely to be the victims of abuse and get stuck in abusive situations as even when someone is toxic we are scared of being left by them.

28th May

I’ve talked about the struggles of BPD a lot because they are a huge part of the illness but these same traits can have some positivity. We are passionate and empathetic among other things.

29th May

Apparently BPD gets easier to deal with, with age. And in some ways I’ve seen this myself. My mood swings when I was younger were much stronger and I was more reactive. I think things have got easier in some ways because I’ve learnt about myself and ways to cope. I’m not saying it’s easy, and there are times when it really catches me by surprise but it can be manageable.

30th May

The main treatment for BPD is Dialectical Behavioural Therapy (DBT). The full course involves group and individual therapy. It focuses on dealing with the symptoms of BPD to make life easier. It is hard work.

31st May

I’ve shared a lot about BPD and the difficulties and differences it can make, but people with BPD are more than a mental illness although it can be hard to distinguish the lines. Please remember that the person who tells you about their diagnosis is the same person they were before they told you.

I hope this has been useful. For more information on BPD check out Mind website. You can keep up with me via Twitter, Facebook or Instagram.