Discharge, again

So, I've been discharged from CMHT again. I'm not sure if I feel ready, but the way my CPN spoke, I get the feeling that they just don't have the resources to do anything else for me. There was the option of a Distress Tolerance group, but my Support Worker had already covered most of it, so my CPN didn't think I'd get any more benefit from it.

I'm not left completely empty handed however. I will get a care plan in the post (so at least I'll have an idea as to what to do if feeling unwell) and I've been signposted to the Cruse Bereavement Counselling service (for the abortion) and a domestic violence charity (for my abusive relationship, see I'm a Survivor)

I still feel weird, and lonely, and lost, but I don't think I'm quite as unwell as I was when referred to CMHT. I'm writing this on a day where I feel numb though, so who knows!

When having a personality disorder that mainly manifests as extreme mood swings, I find it really hard to tell whether I'm getting more ill or if I'm having a bad hour/day/week. My moods often change so quickly, I can be feeling extremely low at one point, agitated and paranoid the next, and hyper the next. This means that I can appear fine when I'm not. I can appear happy in an appointment, and then can feel very unwell when I get home.

Going back to the subject of signposting, I'm currently building up the courage to ring these places to see what sort of help I can get. I have some events coming up quite soon, and bringing myself back to these traumatic times may be risky, so maybe I should wait until at least some of these events have passed? It may be that there's a waiting list for help though, so do I get the ball rolling now?

How have you felt after discharge? Did you feel it was too soon, or did it turn out to be the right thing for you? Please comment below.

The Big Meeting

A couple of weeks ago, a meeting was set up to discuss concerns about my nan, and the needs that she has. Nan insisted on being present at that meeting.

Myself, my parents, and some of my uncles were also present. Luckily, we had time to cover one topic out of earshot of my nan. This topic was her mental health and capacity.

Over the past year or so, some family members and I have started to notice some changes in Nan's personality, memory, mood, and ability to process things. She seems very depressed as well as argumentative and verbally aggressive at times. She is finding it hard to follow conversations and often forgets things or mixes things up. She has trouble organising her medication. She does not cope well with bright lights or any kind of noise, and often complains of her head thumping. She doesn't seem to realise how much help she needs either. There's probably more that I can't think of right now, but these signs and symptoms are definitely worsening.

I explained all of this to the staff present (namely a doctor, an occupational therapist, a social worker, and a discharge nurse) and the doctor said he would arrange for Nan to have a cognitive assessment. I think the nurses involved in her care had noticed certain things themselves.

Straight after this, my nan came into the room. She basically lectured us on speaking about her behind her back. I wasn't sure what to say to this as I feel conflicted about it. I don't like to speak about people behind their back, but there are important things to be said that might not have been put across properly if Nan had been there. She tends to speak over people and doesn't allow them to finish what they say, especially if she disagrees with it. We needed to be able to voice some of our concerns in a way that would allow the hospital staff to understand.

Once Nan had (finally) sat down, other concerns were voiced by the present members of family. These included her struggles with sleeping in bed (she sleeps in her recliner chair as she cannot lift her legs to get into bed), as well as struggles organising medication, needing night visits from carers (but these not being available), problems with incontinence, problems controlling her type 2 diabetes, the help she needs to shower, and other help she may need since having a major operation (a full hip replacement).

Naturally, my nan disputed a lot of things and we had to explain to her why we had these concerns. The discharge nurse, occupational therapist, and social worker tried their best to explain too. The occupational therapist had a list of equipment she could order to make Nan's life a little easier. This included a shower chair with a back, a commode in her bedroom, a grabber (as she is not allowed to bend from the hip more than 90 degrees), a perching stool, a key safe, and equipment to help her lift her legs. Nan rejected a lot of this equipment, saying she didn't need it, but she did agree to the shower chair, perching stool for the kitchen, and key safe.

The next topic was help with care. The occupational therapist explained that Nan would have visits 4 times a day, for up to 6 weeks, from the Enablement Team. This is a team of carers who would observe and encourage Nan to do what she can for herself, and help her with things she cannot do. This help is free, and is designed to rehabilitate Nan so that she is able (with the help of carers) to look after herself in the community. Nan didn't see the point in this, as she believed the carers at her care home would do everything whenever she asked. This is not the case however, as the care home she lives in is vastly understaffed, and does not provide night visits. The Enablement Team unfortunately do not offer night care either, so would see my nan first in the morning.

Once everything had been agreed and clarified, the meeting came to an end. The family were left for a few minutes, to discuss things amongst ourselves, and this included explaining things to Nan again. She seemed to accept what was going to happen, if reluctantly.

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Yesterday, Nan was discharged from hospital, and brought home by hospital transport. We were told the transport would arrive at 12, and it'd be around 12.30 that she would be home. What actually happened was the transport arrived at 1, and dropped Nan home around 3! My dad was left waiting 3 hours to let the transport staff (and my nan) in the flat. Luckily, she'd had lunch before being discharged, so didn't complain about that. The Enablement Team arrived a couple of hours after that. I am waiting to hear how she is getting on with this team, so I will keep you posted!

Family, Social Services, and a Whole Load of Stress

I'm sorry for my silence recently! I've had a lot going on, mainly with family and illness. I will try to explain this in a somewhat coherent manner.

A couple of months ago, my Nan went into hospital for a total hip replacement operation. She has other issues, such as Arthritis all over (we're not sure which type), a worn out total replacement on her other hip, Type 2 Diabetes, double incontinence, memory problems and could potentially have the onset of Dementia. The nurse at the hospital originally said Nan would be in for 7 days, but this was before all the other issues were noted.

The operation went as planned, but due to these other issues, she is still in hospital. As well as all of this, she contracted Norovirus, so has had to stay in another 2 weeks regardless. Despite extra infection control measures, visiting members of the family (including myself and my parents) caught Norovirus too! Because of this, we've not been able to visit Nan for over a week, which is a worry as she does not cope well by herself. She doesn't mix well with other patients and will only "socialise" (to use the word very loosely) with family members.

Another issue is the care home she lives in. It does not have an adjustable bed, so Nan spends 24 hours a day in her adjustable chair (bought by herself years ago). She sleeps in that chair, badly, and due to such poor mobility, is almost completely sedentary.

She has carers in, but she has cut their hours down to the bone, as she thinks struggling on her own (even with her risk of falls) is acceptable. The care she does get is not adequate in the slightest. Before she went into hospital, she was getting care for 15-30 minutes in the morning; which mainly consisted of a very quick wash from her chair. She did have carers come to take her laundry now and again, but clothes etc often came back still dirty. It appears she is also paying for more care than she is actually receiving.

The care home itself is vastly understaffed. At night, you are lucky to get two care assistants and in the daytime there are often only two carers covering the whole home (which has quite a few flats as well as bungalows attached to the home). Nan needs two carers to help her to shower, but the home is unable to provide this, so Nan's hygiene is unfortunately quite poor.

Onto Social Services! Well, they have been involved to assess Nan's needs and whether the care home is suitable for her anymore. My family have agreed that it is now a nursing home that Nan needs because of the amount of personal help she requires. Dad has been speaking to a social worker, but despite all of our concerns, the social worker is under the impression that the care home will be able to provide the levels of care required. This is something we struggle to believe but it looks as if we'll have to trust the care home to do this, and if it is not done then we are going to have to find a nursing home for Nan.

In the meantime, next week there will be a meeting with the care home manager and an occupational therapist (as far as we're aware?) at Nan's flat, to see what other equipment she needs before being discharged. There will also be a bigger meeting with whichever relatives are available, at the hospital, to come to an agreement as to what Nan needs and whether she will be ready to be discharged soon.
One of my uncles does have the legal right to invoke Power of Attorney, so we need to discuss whether this is something that needs to be done yet.

We want her to be happy, but we also want her to be safe. It is very difficult and has caused arguments as Nan is not good with change and is very home sick. I will do another post once everything is finalised.

Another CMHT Assessment

TRIGGER WARNING: mentions of overdose

To catch up on my experiences with mental health services, please watch my playlist on Youtube.

After another sharp decline in my mental health, and a small overdose, I decided to call the Community Mental Health team (secondary services). It'd been just over 3 months since I'd been discharged back to my GP. I was feeling confused, panicky, lost, and honestly unsafe.

Some things had contributed to my mental ill health; one of them being a PIP reassessment. I knew there was the possibility of having a face to face one, but being given just two days' notice was a real shock. I felt like I wasn't able to properly prepare, and I didn't have time to arrange a recording of my assessment. I vented about this, how I'd felt, and what I'd done, on Twitter, and some close friends persuaded me to contact mental health services.

Doing this wasn't easy. I doubted myself, and wondered if I really was ill enough for their help. I took a deep breath and called though. The person I spoke to was lovely. She said I'd done the right thing and booked me an appointment for an assessment with a CPN (community psychiatric nurse).

The assessment itself was thorough. It wasn't with my old CPN unfortunately, but this one was just as kind. We went through my problems right now, things in the past, things in the present, possible triggers, my meds, what therapy I've had before, whether I'd been with secondary services before etc. She wrote a lot of notes, and I hoped she could do something for me.

Her decision however, was to advise me to try mindfulness at home, and wait for the CBT (cognitive behavioural therapy) sessions with the Primary Care team. I did ask about DBT (Dialectical Behaviour Therapy), as I'd been diagnosed with BPD (Borderline Personality Disorder) but she said things had changed with the mental health team, and I may not fit the criteria for that type of therapy. I was emotionally and physically exhausted, so I just accepted this, and said goodbye.

I'm not sure how I feel about this assessment. I think I feel listened to, and I guess I wasn't expecting much in the way of help, but last time I was assessed, I felt pretty much the same and was offered some help from secondary services. In all honesty, I feel I've been abandoned since my BPD diagnosis, even though there are therapies suggested for it. Why am I not getting access to these, when they could help me a lot? Is the diagnosis just not enough anymore?

Resources

My Mental Health Vlogs:  https://www.youtube.com/watch?v=0kX521jdPAU&list=PLLVKOK6LyfuspXXsZ0xdiKCW_Z6SYjTzO

CPN definition: https://en.wikipedia.org/wiki/Community_psychiatric_nurse

CBT definition: https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/

DBT definition: https://www.mind.org.uk/information-support/drugs-and-treatments/dialectical-behaviour-therapy-dbt/#.WiGLcUq6-M8

BPD definition: https://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder-bpd/#.WiGLtkq6-M8

After CMHT Discharge

On 26th June, I was discharged from the Community Mental Health Team (CMHT). I was told I'd be sent my care plan in the post, so I'd know what to do depending on how well/ill I feel. At the time, I was having a fairly ok day and, although I felt anxious about being discharged, I accepted it and thought that maybe this was a good time for me to try coping just with self help and my support network of friends and family.

It was about 4 weeks before I eventually received my care plan, and in that time I was feeling more unwell, and really needed to be reminded of what to do. I rang the mental health team, to ask for my care plan, and also with the hope of being able to talk about how I'd been feeling. The line was bad unfortunately, and there was a lot of background noise. I had to repeat myself a lot, and couldn't face talking through how I felt in the end.

When my care plan arrived, I had a look through it and saw that there'd been some errors. On the front page was the Summary/Formulation of Need. It said:

Amy has been seen in primary care, however did not complete her therapy. There has been a history of bullying in school and emotional distress after a traumatic life decision. Amy feels that she has a diagnosis of Borderline Personality Disorder after comparing her symptoms to others and would like an OPA with a consultant psychiatrist in order to obtain a formal diagnosis. She is currently not working due to chronic pain caused by ME and hypermobility. She has agreed to have a short piece of work in regards to self compassion and anxiety management prior to her discharge from services.

26/6/17: Discharged from CMHT to continue her recovery independently in the community

As you may know, I have been formally diagnosed with Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder), but this was not confirmed in the Summary/Formulation of Need. When talking about my chronic pain conditions, it's written that I have ME and hypermobility. I actually have Fibromyalgia and Joint Hypermobility Syndrome.

The next page gives information on how I will be cared for in the community. In this, it mentions my GP is to provide future care and support. It also mentions my mental health medication (Aripriprazole 10mg and Sertraline 200mg) and that I can self refer to primary care if I need more support with anxiety.

The last few pages advise on what I would notice and what I should do when feeling relatively well (this is coded as GREEN), when I'm feeling that things are building up (AMBER) and when I am at crisis point (RED).

For GREEN, I would notice that I'm feeling more loved, less anxious, more motivated and impulsive etc. While I feel like this, I should continue with distraction techniques, self refer to Primary care if I feel able to tackle anxiety issues, and remind myself of positive comments I've received.

For AMBER, I would notice that I'm feeling low, that there's no point to anything, I'm being more argumentative, panicking, and having urges to self harm. While I feel like this, I should contact CMHT or out of hours and try to use coping strategies.

For RED, I would notice that I am having suicidal thoughts, dissociating a lot, becoming paranoid and isolating myself. While I feel like this I should contact CMHT and I may be reallocated to CPN and/or have an emergency OPA or medication review.

Although this care plan sounds pretty comprehensive, I've been finding it hard to concentrate on it and follow the advice. I've been feeling that I am between the Amber and Red stages, so should really contact CMHT but I'm put off by my experience when calling to ask for my care plan. I'm wondering about whether there's any point to asking for help from them. My mental health conditions are ongoing and what I need is ongoing care from mental health services. I remember my CPN saying that, due to funding cuts, they were only able to offer short term help. Should I call anyway? Will I be able to talk to someone or will there be lots of background noise again? I may need to talk about some difficult/private things and I worry others will hear me.

What I really want/need is ongoing contact with a CPN (preferably the one I was with before). It takes me a while to really open up and let go. I can sound positive if I don't know the person I'm talking to. I find it hard to really say how bad things are, so I may seem ok. Unfortunately, it looks as if I wouldn't be able to get a CPN on more than a short term basis.

I've been trying to use my support network as well; most of them being online. Thanks to social media algorithms, however, the status' etc that I post aren't always seen. I had a time very recently when I was feeling particularly low/paranoid/panicky and posted a status basically asking for friends to check in on me and notice when I'm spiralling. The first time I posted it, no one commented. I posted it again, and one person commented. Although I was of course grateful for one person noticing, I felt upset and angry that no one else had. I felt that surely out of 80ish friends, more would notice. I thought I was being ignored, or that I'd been muted/unfollowed by people I thought cared about me. I felt so awful and I guess I was getting to the RED stage of my care plan. I was too engulfed in my own horrible thoughts/feelings though, so could not motivate myself to read it and follow it.

The next day, I decided to take a break to see if anyone would notice I wasn't online. That only lasted a couple of days because I was so desperate to talk to friends, so no one noticed.

A few days after, I posted another status and was surprised to get a fair amount of comments of support. It definitely made me feel a bit better, although I knew that I still wasn't feeling well. Since then, I've had times where I'm numb, times when I'm emotional, and times where I have self harmed and felt suicidal. These feelings have been changing so rapidly though, I haven't been sure of what I should do. What if I feel really ill and decide to ring CMHT, but then I sound ok when I get through to them? What if they decide I should just rely on myself and then I'm left feeling awful again? Having rapidly changing moods is so hard when it comes to accessing help. Just because I may seem ok at one point (and may be feeling ok/numb as well) doesn't mean I'll feel like that for the rest of the day even!

The self compassion work did help me a bit, and I started to feel less paranoid if a friend didn't reply to me. I could consider that maybe they were just busy or not feeling well enough to talk. A support worker helped me with self compassion. Having that support from her did help me feel a bit better, but now it's not there, I've been feeling awful, alone, and paranoid about friends again.

The distraction techniques help as long as I'm not too unwell. I find it hard to catch myself before I get too ill though. My motivation to use the distraction techniques tends to be quite low as well.

I feel useless when it comes to looking after myself!