Tag: community support

On the move

Its a few weeks until the wedding but I am getting ready to move house, packing boxes to go over to our new flat. It feels as though I’ve been trying to get to this point for months and not making progress, through a combination of my exhaustion, my physical disabilities and mentally being unable to make decisions or forward plan. At last we are making progress! Thanks be to God!

The approaching deadline of our wedding is certainly a motivating factor. So is the fact that we are putting our home together in the new place (my fiancée has moved there already). We are blessed that our financial situation is better than it was and this means for the first time – first time ever for me and first time for years for my fiancé – we can actually choose some furniture we like and pieces which all match or coordinate, to make a calm and restful environment for us both. It’s somewhere we both want to be and feel thankful to be. For the first time it’s not a move that’s fleeing something, escaping somewhere, or because of a loss (death, broken relationship, having no money to live, for example). We are moving to start our married life together and that’s wonderful. That helps me keep going.

It has been very hard for me to tolerate the mess and chaos of packing. My threshold for feeling overwhelmed and having a meltdown is lower than usual. I’m trying to recognise that and actively spend mental time focusing on the good we have achieved so far and the good to come. Actively thinking about the good is much more effective for me than saying “just don’t think about it [the things panicking me]” “just push it away” “just don’t worry about that” “you just have to keep it simple and be positive”. (What exactly does that last one mean, anyway?). I can’t “just” stop a thought or feeling by choice, and the fact I can’t do that when other people require it is likely to make me feel even worse. But I can dedicate time to thinking of a positive future, however imaginary it may seem, or to counting tasks I’m thankful we have achieved.

Yesterday a friend of mine in the parish took lots of my surplus kitchen things and clothes to give to a poor family and some refugees arrived in the parish. They will be able to use some of my furniture as well, if we can find a way to transport it.

Tomorrow a lovely charity are coming to take away all kinds of other things I can donate or that need to be disposed of, and to help me pack because I can’t physically do it myself. This is amazing.

My cat doesn’t think it’s so amazing and is walking around with a very suspicious look on her face. She doesn’t like a lot of bustle or things being moved round the room. She’s alternately ever so affectionate, then moody and trying to scratch. I think she has lived in so many different homes before I adopted her that she thinks she will be left again – that the signs of moving mean I’m going to go away and abandon her. Poor puddy cat has attachment problems just like me! 🤣

We shall have to see if her mood improves once she realises there will be lots of cardboard boxes to hide in…

Ginny xxx

Picture by memecenter.com

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If he doesn’t realise he’s being abused, what do I do?

I’ve gone too long not saying anything. I need to talk to my dad about what my step mother is doing to him and to me.

What happened to my other family member, who was being abused for months with no-one’s knowledge, has made it clearer to me that I need to speak out. I know what can go under the radar; how for those closely involved in the abuser’s world, it can be impossible to see what is happening. And look what went under the radar when I was abused as a child. I’m trying to separate myself from my anger about all the times I “should” have been helped. Right now it just shows me how important it is to not let it go by when you see abuse happening. Another event that has made it clearer to me that I need to speak out is that third parties have commented on my step mum’s behaviour and how my dad is and how another vulnerable member of the family is treated – this was not based on what I told them but on what they themselves observed. It isn’t just me being crazy, or misinterpreting because I’m too sensitive because of my early life experiences, or imagining it, or because I subconsciously resent my step mother so somehow want bad towards her. It’s really happening. Then on top of this, my social worker and a psychologist I have been seeing at the pain clinic have both said to me that for my wellbeing the only course of action may be to restrict contact with my step mother. This is on the basis of the limited number of incidents I’ve described to them from the past 7 years or longer.

It’s really happening. It’s sustained (worsened actually) over time. My dad has no idea or if he does see it wants or needs to ignore it (because he thinks it’s normal? Because he thinks he deserves it? Because he doesn’t know what to do?). My step mum has been able to convince other members of the family that she is perfect, blameless, that she is the one being mistreated, that I am the one mistreating her or causing the problems, that I am the one doing wrong to my dad, that another person in the family is again a cause of problems and to be ostracised (and she has orchestrated this ostracisation), when actually they are vulnerable and desperately in need of help.

As well as being angry with my step mum, I am angry with my dad. This is totally wrong. Misplaced. I feel furious anger at my step mother’s abuse going on unseen and unchecked, even when it is done in plain sight. Why do I have any anger towards my dad? My anger should be only towards her, and the immense control she exerts and deception she weaves, which allows her behaviour to be unacknowledged, unnoticed or excused. That’s all part of her abusing. Does abusers’ behaviour somehow get you angry with the wrong people too? Or is it because all the feelings are brought up from when I was a child needing my dad to help me, trying to tell him what she was doing? Because I can’t really understand why he couldn’t see what my mother was doing to me and what she was involving him in back then? He was deceived by her but he also did wrong, but that’s another story.

However, I am left with the fact that again he’s in a relationship where he and others are being abused, and either he can’t see that it’s happening or he can’t / won’t take action. I don’t want that to repeat for him, for anyone else I care about or for me. It went on 30 years in his relationship with my mother. I don’t want him to go through more years of abuse, never taking action or only taking action when much more has been lost. He is fit but not so young anymore and if he were only to realise what’s happening when he’s elderly, it would seem all the sadder.

I can’t force my dad to take action. I can’t pull him free from the situation. What I can do now, which I could not do as a child, is try to openly tell him what I’ve observed and what I’m worried about. I can also tell him how she behaves to me. It’s likely he won’t believe me or will refuse to acknowledge it. This is what has happened when I’ve told him previously what my step mum has been doing and it’s what happened when I told him what my mother was doing when I was a child. But now I’m not a child. My safety and my world do not depend on him believing and saving me. Sadly, his safety does depend on him acknowledging what is happening to him.

How do I help him do this? How do I raise what is happening without him being so hurt and angry that I’m saying it that there is no chance he will be able to reflect on how she’s treating him and how he’s feeling? How do I do it without him stopping talking to me at all? Then there would be no chance I can help him. If he just utterly blanks it all and changes the subject, or leaves (both have happened before), what then?

Whilst he is not isolated as we were when I was growing up, in a remote village in a shut up house, nobody allowed in, no relationships allowed outside the home, he is isolated in a different way. Apart from his work, the world he’s in is still hers. Her part of the world, her house then the house she chose, her choice of leisure activities, her friends. Almost everyone he has contact with outside his work is her world. Potentially controlled by her. I can think of nothing he does separate from her, apart from his work. I can’t think of any friend he has contact with who is not first hers. No way he spends any leisure time away from her, except for the rare occasions she goes away on holiday without him for a couple of days, or the rarer occasions he comes to see me without her. It seems there would be nothing and no-one to help him move away from her control.

This is worse than I thought.

Xxx

Losing Lily

TRIGGER WARNING for discussion of suicide, of deaths of people suffering mental health conditions, and of failings in mental health care. If you are in mental distress, caution is advised in reading this post.

A NOTE: This post mentions anonymously the death of a person who had recently left the care of a service I worked in. There was an investigation into the circumstances of the person’s death and the investigation has now concluded. I want to make clear that this post discusses solely my experience from my point of view and my knowledge of the situation, my thoughts and feelings. It does not reflect the position of the service I worked in, or of any other person or team involved in the person’s care.

During the time I worked in a specialist community and inpatient mental health service 7 or 8 years ago, two of our patients died. One lady had moved away to a different part of the country so hadn’t been in our service for a couple of years when she tragically died from an overdose. The other lady had just left our inpatient ward (as far as I know against doctors’ advice but assessed as having capacity to make her own decision in this regard) and gone to live independently, but deteriorated rapidly within weeks and died 4 months later. I’ll call her Lily*.

At any one time we were working with several other patients in my eyes dangerously close to death – because of their drive to harm themselves (by overdose and substance use and so on), because of their suicidal intentions, and/or because their organs were so damaged physically by the effects of their mental health conditions (starvation and other eating disorder or self-neglect symptoms leading to heart failure or diabetic coma, for example).

We were working constantly short staffed, physically and mentally unwell ourselves because of the workload and emotions and conflicts and fear of making mistakes, within constraints of time and policy that often felt out of our hands, trying to provide a service fair and the best for everyone, but knowing we could not give enough.

Lily has never left me. She’s come to my mind every week or so since the winter she died. I was a secretary, not a clinician. I didn’t know Lily as much as I got to know some of our other patients. She was intelligent and wanted to do well and was very driven for her goals. She made close friendships with a couple of people on the ward. Yet, she really needed love which I think she often didn’t find where she may have most expected it. She really did start to get better but something very painful remained impossible to reach. Sometimes I wonder if she was hurting so much she’d had enough. If everything was so locked in and disconnected from the people she needed and wanted to trust, that in her pain it felt like time to go – if she didn’t choose exactly when but she did know she’d quietly slip away.

We didn’t reach her. Even as she got a little better, we couldn’t reach through her pain. We didn’t catch her. We didn’t keep her safe when she was slipping. We lost her.

There was an investigation – many investigations – after Lily’s death. The final investigation ruled that the harm she suffered, and her death, were avoidable. I just now read the start of the report of the last investigation and horror and panic and confusion took over. The room swayed and spun and I couldn’t breathe. I’m still freezing cold.

Her life is on my hands. Not mine alone, and not the service I worked in alone because several other services were involved – but I was there.

Of course we had not wished to reject her or abandon her or disown her or her care. One of the worst things is that a lot of what was judged harmful in the report, were either actions in line with procedures we were taught to follow to give safe and fair and consistent care to every patient in the service, or matters that within the constraints we faced, we could not personally control. But whichever, it wasn’t right or safe for Lily. Consistency and guidelines and constraints are one thing but every individual patient is in very individual circumstances at very individual risk. Procedure under huge constraints imposed from outside, doesn’t make account of that.

What do we do when the steps that were supposed to have been good or safest or standard, or following established guidelines, or the best we could give, or taken in faith in the decisions of those we work for and trust, were actually steps that led to a death?

Personally, what should I have done and what do I do now? My heart is screaming at me, you did not speak up, you did not speak when you had concerns at what you heard, you did not act, you did not follow your gut – you followed instructions instead, and you know this wasn’t the only time.

Good intentions or having tried to follow what was supposed to be good enough, or even best, count for nothing now.

I’m reminded of my mother and her care and deterioration; how we were locked in an agonising cycle of her discharge, the same crises repeating, her deterioration and readmission, worse and worse every time, all of us knowing what would happen but all held powerless by legislation that didn’t allow us to put in place a few simple steps that would have kept her safe. Ultimately an adult judged to have capacity to make a decision is allowed to make a decision that will harm herself, allowed to cut herself off from sources of help, allowed to deceive everyone who wants to help. Even when those decisions and actions are the work of a delusion founded in deep-rooted, severe psychosis. My mother couldn’t be more different from Lily but I see similarities in how the hands of those who wanted to help were rendered powerless.

In my head when Lily stares at me, slowly fading, I don’t know what to say, and everything I should have said back then echoes around me.

(*not her real name. Again please note that the opinions and thoughts and experiences mentioned in this article are mine alone.)

Ginny xxx

Miaow!

My houseguest would like to say hi:

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So, here I was reading up and planning to have guinea pigs, when this adorable guy arrived. He’s been a regular fixture for many weeks now since he first “dropped in” at the end of last year but I don’t think I’ve introduced him on my blog before.

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He has previously belonged to at least 2 other households in my block. He’s getting on in years for a cat – we think he’s about 10 years old – but he can still cause enough mischief, between naps that is! I started out agreeing to look after him and feed him over a weekend in the winter, when his owners had serious problems and couldn’t look after him. Circumstances were such that they didn’t collect him after the weekend. They didn’t come back for a fortnight and by this time he was growing used to my flat and, I think, to more regular food and playtimes than he’d been getting.

We have come to an arrangement where I am the main person to feed him and look after him but he goes between my flat and is previous / other home. The couple that had him before are still in difficulties and can’t care for him. So it helps us all, I hope.

I love him. He’s surprisingly affectionate. He loves cuddles. He loves playing with his toy mouse. He usually likes being combed. He even “holds hands” tapping me gently with his paw then letting me take it in my hand.

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He is enchanting to watch when he’s napping, curled up so comfortably and trustingly on the seat beside me, or even in my arms, purring softly, then snoring not so softly, body rising and falling with his breath, smiling (yes really), little pink paw pads uncurling as he stretches out from time to time.

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He is bringing me lots of happiness and I love that I can care for him and make him feel safe.

Ginny Xxx

 

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).

Update long overdue!

It is a really hectic, up and down time at the moment and I’m much overdue posting. It has been hard to gather my words. I don’t make a habit of 2am posts – certainly not the best time of day for coherent writing – but I did not get to finish this earlier and it felt important to write before a big change coming up for me in the morning.

Belatedly, wishing you good things this New Year. I think I can just about say this since it’s still January! I’m praying that positive times and opportunities come for you and God’s blessings are shown to you to encourage you each day.

January is always a strange time, cold and empty in a way, after Christmas. Right now, so much seems unsettled, in the world, for my loved ones and in my personal life. I’ve written that before not long ago and of course it has not magically changed with the new year; if anything it seems all the more apparent. I’m trying to give generously of time and resources and friendship, for example to friends in need, and that’s how we encounter Christ in every day. But I’m feeling twisted apart inside because I come up against my limitations, what I cannot give and cannot resolve.  The family in my block, both of the partners seriously ill, whose Benefits have been suspended unresolved for weeks so they have no food, heating or electricity. My friend who has already suffered terribly and now faces more surgical procedures, my friend who has been homeless for almost a year and whose life may be in danger… to the thousands on thousands of people seeking asylum, the fear taking hold giving weight to insular policies that seem to offer protection but perhaps already spiral out of control. (The Mexico border “wall” seems to me to teetering somewhere between bizarre Divergent- trilogy-esque images and more than echoes of the Cold War era eastern block policies.)

I steer away from political issues in this blog but I think this turmoil hits ever closer to home. We hope that in times of hardship we come together and hold onto what matters most but I’m starting to think a certain level of hardship and fear brings only divisions. Then again, in my faith I believe somehow this must not be true because Jesus became Man to suffer and experience everything we suffer and go through. And He is all Love. Love came here, into the darkness and despair. Nothing changes Jesus. The despair and dark and hurt didn’t change Him, didn’t change love. So Love is here, Love suffers and struggles, but isn’t extinguished, so even in the hardest times, it’s love that remains – not division and conflict . I mustn’t lose sight of that.

This post has diverged somewhat from the update I originally planned. Probably to do with the fact that it’s 2am. I’m going to try to get back on track.

Since Christmas, I feel I have not been able to catch up at all. Usually, I have a big clear out, going through cupboards and drawers and so on and decluttering. I haven’t managed this at all. I’m frustrated with myself that I can’t keep on top of the housework at all. My emotions are bubbling over and have been for some time and I feel I have no resilience to cope with straightforward things. Saying that, maybe a lot is happening at the moment. I’m about to be discharged from the personality disorders community service I’ve had therapy in for the past 2 years. I’ve been trying to find support and things I can get in place for after my discharge. This has not been easy and actually it has been quite distressing because I have been promised a lot of treatment I haven’t had and I’m left with major mental health issues unadressed. On the positive side, I have made contact with a peer support worker and Recovery Coach who are going to help me short term and I think this will be really valuable. I have also signed up for some courses at a Recovery College, which I’ll post about (and explain) next week.

My physical health is not going through a great patch just now. The cold always makes the pain worse so that’s part of the reason. I have had to give in to the fact I need a wheelchair sometimes now and I’m looking at getting a mobility scooter. At least this will help me be less isolated and take a little stress away perhaps, because I’ll be more able to take part in things outside my home, like my volunteer work.

Practically at home, I am going rapidly up the wall at the company who should be repairing my boiler. I have had problem upon problem since November and now have no heating or hot water. I feel they have handled the whole thing terribly (7 canceled appointments for a start, having to phone 6 times to arrange a very simple thing, and so on, then them accusing me falsely of missing appointments). Ggrrr!! I know this is just part of life but in the state I’m in at the moment, I can’t cope with this, and feel very frustrated with myself for that. My emotions explode out of all control. Then I get angry with myself because so many people are going through so much worse.

A close friend has serious housing issues as well as a huge number of health problems. I’m trying to be there and do what I can. Cook hot food and support him with form filling and trying to get him a support worker who could help. It is a little way I can try to help and use the knowledge I’ve gathered from my own housing issues in the past.

I’m going to stop here. Later this morning is my last group therapy session and this will be a really really hard lot of goodbyes. I’ve been writing thank-yous and goodbyes, some of the hardest cards I’ve ever had to write. I’m sure I’ll write more about this last session and ending therapy, in the coming days. At the moment I’m struggling to find the words. I’ve cried so much today.

Ginny xxx

 

 

World Mental Health Day – and guinea pigs

Today 10 October is World Mental Health Day. (For another hour and a half at least – erm, better late than never!) This year the theme is “psychological first aid”, which you can read more about on the World Health Organisation (WHO) website here .

When I worked at a hospital I took a course in “mental health first aid” and I’ve lost count of the number of times I’ve used the skills and understanding it gave me, across the board in work, social and family situations. It covered everything from gaining a basic insight into various mental health diagnoses, to how to be there for someone who is suffering distress or overwhelming emotions, to how to build psychological wellbeing and recognise the impact of both day to day and unusual events.

Today we marked World Mental Health Day at the community centre I go to for volunteering, creative groups and support. Visitors were encouraged to the centre, we had tea and cakes, discussion and some interesting videos made through the Time to Change campaign (http://www.time-to-change.org.uk/).

I also received a gift from a friend – a lovely book on guinea pigs and a piggie snack for my hopefully-future-guinea-piggies! I don’t know the lady who gave it to me very well and I was touched that she’d be so kind to me.

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It’s an RSPCA guide and it has some sweet photos as well as lots of information on how to make them a good living environment.

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I’ve been reading up on piggies and I’m hoping to be able to get some, possibly by Christmas. I both want to and am nervous about doing it – I’d love to have something to care for but will I be able to look after them well enough? Another friend knows of a guinea pig which may need a new home, though things aren’t certain (guinea pigs prefer to live in pairs, otherwise they can get lonely, and we are not sure how this may work out as this piggie is very nervous and a previous homing did not work out). It was really nice to receive this book today. Not only was it a thoughtful gift, it has encouraged me to have confidence to go through with this and that my friend thinks I’d be able to look after them.

I hope something good happened for you today too.

Ginny xxx

Managing money with Borderline Personality Disorder

I am bad with money. I panic about it. I’ll panic for days beside being able to sit down to look at my financial situation. Partly this is because it’s usually so dire and it’s a constant background stressor in my mind that sends me to extremes of distress when my thoughts are in the foreground and that I block out at other times. I even find myself dissociating from it. Additionally, there’s the fact that I find it hard to deal with figures and hold them in my head and follow steps through when I’m budgeting. I always did find dealing with numbers hard, even before I was particularly ill.

However, with help, for example from my lovely support worker or my very close friend L., I can list out all my money coming in and my expenses and I can draw up a budget based on that – even though the outcome for months has been that I don’t have enough to meet basic expenses. It may not be workable but I can at least get things down on paper.

It’s very hard for me to get to that stage but that’s not the biggest problem. The biggest problem is when it comes to spending. I have been very bad with money and very impulsive and out of control and I really want to change that. I must change that if I’m to stay out of debt and all the spiralling material and mental consequences.

Even if I have made a budget plan, when I’m most ill I do not stick to it. Best laid plans to waste, as the saying goes… When I dissociate, or flip, I am no longer in control. It’s my responsibility and I don’t want to deny that but I’m not mentally in control. I make decisions and act on impulses and spend money rashly. I act on a temporary conpulsion to buy things I’d never normally touch. Sometimes I know it’s temporarily squashing down the unbearable feelings. Sometimes I’m buying a different life. Sometimes I’m buying for one of my “others” or it’s the “other” wanting and needing it and making the decisions. Often I’m too far gone to have any awareness of what or why I’m doing it and afterwards I see what I’ve bought and have only a dim recollection of why and when i did it.

Afterwards, infallibly, I feel terrible: guilty, disgusted, that I’ve been selfish, greedy, confused, angry with myself, scared, an absolutely unbearable feeling I can’t describe. There’s dread there. There’s shame – a lot of shame. There’s panic. There’s something more. Yet I still do it. There’s always the next time I lose control and dissociate and spend again. I’d call it a kind of manic dissociation that leads me to spending (it leads me to impulsively angry and needy actions too), as opposed to the frozen and numb dissociation that accompanies self harm or the safe dissociation of slipping away from this world into the imaginary one in my head. The manic dissociation is probably the most socially dangerous.

I really want to break this. I can’t stop the dissociation and impulsivity yet but I’m trying to find ways to reduce its impact. It’s become very important right now because, having had problems for nearly a year with my disability-related Benefits, with my support worker’s help we have now resolved the problems and I am due to receive some back-payment of money I should have received some time ago. This is absolutely great for me because it means that I can pay off my arrears and make a stable budget going forward and it looks as if finally I will have enough to live on! I am so so so thankful for this. It also means that I have a lot more money than I usually do (even if only temporarily til I pay the arrears). This is scary because I know that I cannot be trusted with it.

I texted my support worker straight away about the back payment and he’s going to call me this afternoon so that we can make a plan, pay the arrears and make an appointment to look at my budget again now that I’ll have a bit more money coming in. I’m hoping we can come up with some things we can do so that, at the times I’m being impulsive and not in control, I can spot this quicker and ideally, my access to money could be strictly limited at these times. I’m not sure how we could achieve that but maybe he will have ideas.

I know that ultimately I need to get to the root of what’s causing the impulsivity and learn to take back control of my actions at those times and stop the dangerous behaviour. I’m hoping therapy is going to help me find this, though it worries me I’m so far through therapy and still I don’t think I’ve changed in this area. Until I can do that I need to try to stay safe and be as responsible as I can.

I’m interested to know, if you or someone you know has Borderline, or indeed any other mental health condition, does it affect how you / they feel about money and how you / they can manage it? Is it an area you feel vulnerable or find stressful? In all the years I worked at a hospital and in the various services I’ve been seen in, it isn’t talked about very much.

Just recently I saw a useful self-help booklet at the PD Service I’m seen in, on these kind of issues. I’ll share here the booklet here later today or tomorrow (I think there’s an online version). It was about the first publication about managing finances which I’ve come across targeted specifically for patients.

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

WHOOPS: An apology from this technology Dodo (…or, doh!-do…)

Erm, so, I’ve just discovered that I’ve been missing a whole load of notifications of replies to comments, especially on your blogs, because I didn’t realise where I was supposed to look for them… think this has been going on ever since I started this blog…Sometimes I get an email notification of replies and comments and so on, but often I don’t, and it turns out there were a whole load of notifications that I’ve been missing. I wasn’t looking in the right place.

I’m so sorry!! Partly it is because of the poor internet access I had until last month but that’s not entirely to blame. I am very new to blogging and I’m not the best with computers and technology especially if I’m posting from my phone.

You are all so supportive and kind and matter so much to me and I feel really rubbish that I’ve missed so many responses and not replied to you. Please accept my huge apologies and know that I am really thankful for all the time you take to write.

Hugs xxx

Ginny x