Tag: wellbeing

Mental wellbeing scales…. What do you think?

This is the SWEMWBS. Er, bless you?! No, it stands for the “Short Warwick Edinburgh Mental Well-Being Scale” Maybe the longest possible name for the shortest questionnaire!

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I was given a copy of this to fill out on two occasions recently: when registering with a mental health charity locally in the hope of accessing a community-based personality disorders support group, and at the first session with my Recovery Coach. I’ve lost count of the number of questionnaires of this ilk that I’ve done since my mental health conditions wete first diagnosed, for example one or two page scales at the GP Surgery to rate anxiety and depression, to 10 page booklets at the personality disorders service, repeated to examine changes through my treatment. The SWEMWBS is by far the shortest of all these, which could be a strength. I still found it tricky partly as to my mind it seems to have gone to the other, overly simple, extreme. However that does all depend on what you want to measure and why. I may have found it tricky because it didn’t match what I wanted to express. What I want to express might not be what services, support agencies and so on, wish to measure. Arguably, services do need to make sure there is the opportunity for us as patients / clients / service users to express what we feel is most important and often this can’t be slotted into a tick box or numerical scale. I’ve been fortunate that people working with me have given time and importance to that which doesn’t fit into these kind of measures.

As part of their work, a member of my family is exploring initiatives to support and promote mental wellbeing. They are looking at using scales like the SWEMWBS to measure how people feel across participating in activities, and whether the way they feel changes. The activities could be social groups, exploring nature together, art and art appreciation, developing and sharing particular skills – generally community based projects. Reporting how you feel on long complex scales proved off putting and daunting, understandably. In my opinion, there is a certain conflict between the fact that the most respectful and detailed way to find out how someone is feeling may be simply having a discussion with no constraints on how they express themselves; whilst at the same time, to analyse whether a particular activity or therapy has helped, there does need to be some form of quantifiable (so usually numerical) analysis of changes in how someone feels.

My family member asked me for thoughts and feedback on the above and to share my experience on how I find using scales like the SWEMWBS. How meaningful is it? How does it compare to unrestricted feedback where we can express freely verbally or in writing how we feel?

I’d be interested to know readers’ thoughts if you have any you would like to share, whether or not you’ve completed these kind of scales yourself.

I could pass these thoughts on anonymously if you wished, or not if you do not wish.

Thank you!!

Ginny xxx

The Short Warwick Edinburgh Mental Well-Being Scale is copyright NHS Health Scotland, The University of Edinburgh, The University of Warwick (2008).

“See what a morning, gloriously bright…”

Autumn is my favourite season. We’ve had loads of blackberries this year. Here are some pictures from a little earlier when they were ripening, along with some rosehips, which are still brilliant red in the hedges:

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The trees are turning gorgeous colours and I enjoy them on cold sunny mornings. Though I may not like having to get out to early morning appointments when I’m feeling bad, the glimpses of beautiful scenery make me smile. I live near a lovely park as well and I’m fortunate to have the chance to appreciate it.

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Ginny xxx

 

A Very Hungry Caterpillar finds a home

I found this little guy when I was sweeping my patio. I thought he’d prefer a nice leaf to curl up on, rather than the paving stones.

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I am trying to tidy up my patio garden. It isn’t big at all – I have a patio door that opens onto a very small paved area and then a small flower bed beyond. I haven’t given this little space the attention I should since I moved in, largely as my physical challenges make gardening tiring and painful. Plus I’ve never particularly enjoyed it!

This week I’ve made the promise to start caring for it better. It is a blessing that I have this little outside space. I didn’t expect it at all and living in a flat it’s a privilege to have any garden. It’s a help for everything from being able to hang out washing to getting to sit outside, breathe, pray, ground myself in all the sensations of outdoors, and feel less isolated when I’m not well enough to walk far – I don’t have to stay totally indoors.

So I want to behave more thankfully for my little garden and take care of it and find ways in which, just maybe, I can create something pretty. It can be part of learning to give some time to creating a permanent and stable home, which I’m really not used to having, as until I came to this flat I was living between different kinds of shared and temporary accommodation where most of the time I stayed shut away in my one room, too scared of interacting with other people and too locked into my obsessional thoughts and hallucinations to leave it unless I could fulfil my compulsive behaviors and unless I could be sure I’d see no-one. I’ve had to leave so many places when I lost jobs, couldn’t make the rent, broke down mentally and was so disturbed I’d be asked to leave by the people I was living with.

Some level of security (though I’m not without financial problems) is a new thing for me and it’s hard to build on it. Any home I have, I expect to lose. Actually, for some strange reason i haven’t figured out yet, having a home and taking responsibility for it frequently fills me with panic. I feel like I’m losing control or can’t manage it, I’m out of control with everything I’d want to be in order (paperwork or cleaning etc) or other times I’m not sure what I’m scared of; something to do with I’m not allowed my safety, knowing it’ll be taken away, fears of being attacked or watched by my abuser and flashbacks associated to particular places in my flat. Having said that, I can feel safe in my home and I even have a place within my home where I surround myself with comforting and grounding things that help me stay safe when I’m dissociating, having flashbacks, the emotions are too much, and the like. I thank God for that. It’s so important for me to learn how to build on this otherwise I ignore the goodness of everything I have. Giving myself permission to trust in having security and knowing how to create an ordered home that I care for and give thanks for, is a new thing to me. I’m trying to take some little steps towards it, with my garden and trying gradually to bring more order to each room in my home.

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(Thanks so much to Cathy and her lovely blog at  https://cathylynnbrooks.com/ for reminding me how nice it is hanging out washing in the sunshine 🙂 – and as ever encouraging me so much to appreciate the beauty of the present moment in the little things. )

Ginny xxx

A much bigger loss than they realise

When I signed up to the programme of treatment I am in at the moment, it was to include weekly group MBT therapy, fortnightly individual therapy, monthly care coordination and support available from a duty team.

With no warning, monthly care coordination has been stopped and changed to quarterly. Having expected to see my care coordinator yesterday as we’d previously booked, this was cancelled and my next care coordination is not to be until the end of September, which will be about 4 months since my last appointment.

I could write a lot about how badly the actual communication of this decision has been handled. Actually I did but I deleted it. It probably doesn’t do anyone any good, not me or the service or anyone else, to shoot off into an angry tirade. I’ve been trying to process this through since we (ie all of us in the therapy programme) got letters telling us a few days ago. My emotions are pretty out of control and shooting to extremes at the moment independent of this which is making things harder – ironically, partly because there is so much going on all across my life and I can’t hold it all together; I could have really done with some help from my care coordinator. I’m trying not to just rant in anger here. However, I do think that some of my feelings are shared by other people in the programme and I do think this reduction in appointments is a much greater loss than the hospital realise. There is a huge gap in care here and it’s getting wider.

We weren’t involved in the decision. We were informed afterwards in an impersonal letter. We were informed that this would be best for us. There was nothing personal about the decision. Surely everyone’s needs in terms of care co-ordination may be different, at different times in their therapy, according to what’s going on in therapy, their health across the board, and all areas of their life? The approach being taken isn’t responsive. It’s just a blanket decision.

My views are certainly being influenced by what I observed and experienced when I worked in mental health services in the same mental health trust in which I’m now treated, but I wonder if the source of this reduction in appointments is actually largely to do with funding cuts and staff shortages? Conversations I’ve had with my care coordinator have given me more than an inkling that my suspicion is correct. If this is so, it would have hurt a lot less if this explanation had been given plainly, rather than it being couched in claims that the service think it’s better for us to have less coordination of our care.

Leaving this aside, nobody actually discussed the matter with us whilst deciding what would be best for us. We didn’t get to give any input about why care coordination is important for us, the help we need, the effect this withdrawal of support would have, what our needs are and how they might best be met. We committed to the therapy programme expecting one thing and now this has been changed. We’re expected to stick with the programme and commit to it but they are free to change it how they choose. This is by no means the first time this has happened and what we have trusted in has been changed or taken away. Support we desperately needed, which was insufficient anyway, has now been withdrawn further.

All these things combine to make us feel hurt and powerless and unheard by those we should be able to trust and undeserving of support. I posted yesterday about how when I discussed the changes on the phone with my care coordinator (after I’d chased several times for any explanation of how the decision was made and what’s happening in practice with my appointments going forward) he told me the service thinks this is the best way to challenge us to be more independent, and how much this hurt and how little the service we should be able to trust actually appreciate what we are facing.

Separate from the emotions this brought up, the withdrawal of these appointments doesn’t just affect the appointments themselves; by the very nature of what care coordination is meant to do, it will have an impact on our wellbeing across the board and I think this is where the proverbial baby well and truly has been thrown out with the bath water. It seems the clinicians who have made this decision do not realise what a loss this will incur.

First, on an immediate practical note, it will have a knock on effect on our therapy appointments. We have been told that the clinicians have decided it is most appropriate for us to get help in therapy appointments rather than care coordination. The focus of a care coordination appointment is utterly different from a mentalisation-based therapy appointment . Therapy appointments focus on emotions and interpersonal situations, looking in depth at particular relationships and specific interactions, our emotions and thoughts and our understanding of what is in our own and each others’ minds. It’s not so much about events and information and our circumstances as focussing in depth on our emotional experience and thought patterns. This is totally different from what is covered in care coordination – such as building a care plan, reviewing mental and physical health, looking at input that may be needed from other health professionals or support workers, looking at social and financial problems and stability, monitoring risk and safety issues, communicating with the range of professionals and others involved in someone’s care… the list goes on. If this is now to be squashed into the therapy appointments, either the time for therapeutic work will be greatly reduced or the problems we needed care coordination for won’t be addressed.

This is all the more important since the length of time for which one can be seen in the service is now strictly limited. The service was set up to be a lifelong service, recognising the fact that we may likely need help outside of particular therapy programmes across many years. Now this has been stopped and after we have completed a particular therapy course we are discharged whether or not we are coping or safe or recovered. When time is limited and so soon we will find ourselves alone again or at least without specialist support, whatever state we are in, it’s all the more important that whilst we are with the service we can get help pulled together across all the areas of our life that our mental health affects and that affect our mental health.

And these areas are broad.  Several of us in my therapy group, myself included, have multiple mental and physical health diagnoses. Most of us have many unmet needs at any one time.  Some of this is because of rules that you can only be seen in one service at one time. I’ve posted before on how unfair that can feel – for me one thing this rule means is I’m not allowed any help with my PTSD and trauma following the abuse I’ve been through, because I’m being seen in the PD Service. I know other people who were forced to choose between being treated for their life threatening eating disorder or their personality disorder. Multiple mental health diagnoses are often closely related but I, and I’m sure many others, have had big difficulties trying to find the way through the care and treatments they need and I’m regularly promised help that is then the next minute taken away. Someone needs to pull all this together and make sure communication happens and that help promised is actually delivered. It is too hard to do this on your own when you’re seriously ill and all too often you are bounced between different services, each telling you that another service is meeting your needs when actually nobody is.

Physical and mental ill health tend to cause disturbance and instability to a lot more than health. Just a few examples from my own experience – and all these are shared by other members of my therapy group – are losing your job, being made homeless or having to move from your secure home, having nowhere stable to live, having no money to meet essential expenses of food and rent and bills, falling into debt, trying to navigate the system to claim sickness benefits or help with housing costs whilst working part time – and being met by mistakes and delays at every turn and waiting weeks on end to receive any money, consequent trouble with utility companies, landlords, over or under payment of tax and Benefits, filling out form after form, having less and less contact with friends and having no resources (financial, or in terms of emotional strength) to keep in touch with the little positive things that can keep you well, relationship breakdowns, addiction, crises, losing control and ending up in trouble with the police or other involvement from emergency services… I could go on and on.

It just isn’t possible to sort out all of these things on your own especially when you’re struggling with the daily pain of the BPD itself. You desperately need someone to get you access to help and guidance, to be familiar at least to some extent with the systems you’re struggling through and to know what help is available and refer you there. This help has never come, for me, from the PD Service, and with so little care coordinator input going forward, it’ll be even scarcer.

Yes, a lot of these things are parts of everyday adult life but the fact is by the time most of us eventually get seen in a specialist service like mine, we have struggled without the help we need for years upon years and are very near the end of the road. (Potentially, very near ending our lives, or already having reached that point because there is nothing but pain, dark, utterly spent, utterly trapped, self disgust, I could go on…) Yes, we have to be able to function independently. But we are silently screaming how right now we can’t. We need help. We desperately need to be heard that we need help. Every time we have tried the very hardest we can and there’s yet another loss, obstacle, more and more piled on us, our risk increases and we are less and less able to be independent and more and more locked into our compulsions to overdose and self harm and try to numb and control the utter desperation and silence the painful scream for help inside us. If someone hears us, guides us, gets an understanding of what is happening across our lives, pulls the pieces together and gives some continuity, as our care coordinator could, then we can start to gain strength and start to find some kind of stability that might eventually allow us to heal.

I am incredibly fortunate that I have a support worker (from a local social service, not from the NHS) who is helping me with so many things that I’d have hoped my care coordinator and/or support workers from the PD Service would have done. The response from the PD Service was to brush me off saying everyone has to deal with these things and I did not qualify for any help and one appointment with a care worker who did not know anything about most of the areas in which I needed help. Thanks to my current support worker, I have not been evicted by my landlord, I have been helped to fill in the complex application forms for disability benefits, I have had support to go to assessment appointments, I have had help learning to budget, I have been able to access the correct advice and information from all the services involved (housing benefits, the council, the Jobcentre, disability services etc), I have someone on my side who understands the difficulty I’m going through at the moment in the police investigation into my abuser, and I have some social support which will help me use my time constructively to keep getting better and eventually learn how to get back into work.

In no way did the lack of recognition, lack of coordination and lack of support I received from the PD Service make me better or more able to function. In no way has having a support worker made me less independent or worse. I am now self harming much less and have not overdosed for weeks. I’m able gradually to do a little bit more and then more, because I have some sense of stability and safety and someone who believes me. With his support I’m not alone going through the things that distressed me to the extent that I couldn’t cope and could only hurt myself.

This support is desperately needed. It is very sad that it is so hard to find. Given that the therapy programme is so good, and I know it is such a privilege to be able to undertake it, it is sad that the support towards staying safe and being well and stable, is so lacking. It is much harder to grow and make use of the therapy from a place where you don’t feel safe or heard.

Perhaps I’m overreacting. Perhaps I’ve had an unusually bad experience with my care coordinator or when I’ve been in crisis. Perhaps I’m incredibly dependent. (Well, I think I definitely am.) Probably I should focus more on the fact I have the support I do. I know many services have much less support available. It just seems to me like a big and widening gap and that things could so easily be different.

If I recover enough to ever work or volunteer in this field, I’d like to work on trying to bring together patients’ access to the support that’s out there and bridge the gap of all the unmet needs that are stopping us from having a stable life whilst we’re working through our therapy programmes. I’m sure this would increase people’s security in their recovery.

Ginny xxx

The garden of souls

Lots of lovely wildflowers are coming into bloom this time of year, sometimes in unexpected places.

I found some especially bright poppies by the supermarket:

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Where I grew up we called this one cow parsley!
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The other day I stumbled across this stunning rose in an otherwise unkempt garden.

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I love how sometimes you find brilliantly coloured, delicate flowers growing in the most unlikely places, like little purple blossoms growing across a stone wall or this poppy springing up from arid, grey, hardened soil.

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The little blooms are not as fragile as they appear. They thrive in barren conditions. They draw their life and water much deeper than we see.

Perhaps it’s the same with our hearts and souls when we have travelled a hard road of suffering and abandonment and pain and are trying to find the way to recovery. Gradually  or suddenly the path bears fruit and something beautiful comes to life at the most unexpected time. As we draw deeper and deeper strength we bloom like that poppy in arid, unstable soil, finding something unshakeable that lets us flourish. Exactly what it is, is probably different for each of us. Then we can even inspire and strengthen others.

Ginny xxx

….

“Every flower created by [God] is beautiful; the brilliance of the rose and the whiteness of the lily do not lessen the perfume of the violet or the sweet simplicity of the daisy. I understood that if all the lowly flowers wished to be roses, nature would lose its loveliness. And so it is in the world of souls, which is the living garden of the Lord.” – St Therese of Lisieux

Did I actually just enjoy something?!

Since I came back from my lovely weekend stay with my friend L and her family a couple of weeks ago, I’ve been thinking back to it thankfully and often. In that weekend I felt genuinely positive emotions that have been absent for me for a long time (we’re talking years). Things like happiness at my goddaughters’ interest and excitement at our little activities and projects.  Their unboundedly curious questions showing perspectives so different from mine, especially different from my exhausted autopilot. Time with L. and real thankfulness for the strength and comfort her non-judgmental empathy gave me and really wanting to be there for her too, glad to be able to talk and share in her life, worries, joys, and so on.

Yes, the hard things were still there too. Voices, doubts, exhaustion, anxiety, it doesn’t magically go away. But the good experiences were so unusual for me that they particularly give me pause and I am all the more grateful for them.

Their good is lasting beyond the days I spent with L (nearly 2 weeks so now) in a way that’s more than just a happy memory. Perhaps it’s because it isn’t just a memory in my factual thought; it’s an emotional memory too. That’s stronger and more active and has a more continously creative effect on how I feel. I’m enjoying it and trying to nurture it, in thought and in prayer and in trying to build up some more creative, good experiences, especially where I can give or share something to someone else in even a small way. One thing I’ve been doing in recent days is making greetings cards, which I used to love but had completely lost all motivation or creativity to do. And I’m actually enjoying it, even looking forward to it. I can’t think when I last genuinely looked forward to an activity like this.

Maybe I’m starting to understand what a doctor told me when I was an inpatient in 2014 – that the more good experiences and memories you create, they can slowly begin to replace the terrible re-experiencing of traumatic past events and the automatic nature of obsessional thoughts and the power of the voices. I could not understand how this could work at the time though I really wanted to believe it. Later, in the most desperate times I was furious if anyone began to suggest anything like it. The suggestion seemed to trivialise the terror I was locked into. Yet now, I think I might be beginning to understand it.

Ginny xxx

Tuesday coffee group

Tuesday coffee group

Today is my day off. This morning was horrible with very bad back pain and feeling really low, but I managed to get out to a weekly coffee meeting. I can’t always go to this because of my work but I like to go when I can. I first started after I was in hospital, when another patient told me about it. It’s a kind of support group for local people with mental health needs, although it doesn’t take any particular structured form and is just like friends meeting for coffee. Most of us, including the lady who coordinates it – a lovely caring person who unobtrusively helps and advises many people in need – have been inpatients at some point in our lives. We all face a variety of mental health challenges. We don’t necessarily tend to be in touch between meetings but it is something regular in the diary to look forward to and where we know that we can talk about how things are if we need to, not talk if we don’t want to, where we empathise with each other and where there isn’t the usual pressure to keep up a front and appear “fine”. I think these sources of peer support are few and far between and I’m very grateful for it and the little cafe that welcomes us for a few hours every week.

Ginny xxx

[Image from “Gilmore Girls” (episode PS I love you) – created by Amy Sherman Palladino, all rights belong to respective artists]