Archives for posts with tag: PTSD
The Acorn Programme at The Retreat

The Acorn Programme at The Retreat, York. After a long struggle it looks as if I might get the funding I need to go on this excellent programme, which offers specialist treatment to women suffering from complex post-traumatic stress disorder, such as myself. A big part of the treatment is the therapeutic community approach.

Hi, again.

Qualified staff tied up

Over the last four weeks I have spent time thinking about my care and the future, which felt bleak. During my admission, I have met some very nice people and on numerous occasions we sat together complaining about our level of care and our feelings of hopelessness. One of the main complaints was the lack of therapy and treatment, and it was apparent that the way the acute ward is run is based on observations, containment and medication. The qualified staff were tied up with administrative duties, and the support staff spent time with those patients who were under observation and needed personal care such as washing, dressing and feeding.

Patients left to cope with anxieties themselves

Those patients who didn’t need observations and personal care were expected to occupy themselves during the long days with very little to do, and to cope with their anxieties and mental health symptoms themselves. Support from most of the staff was limited, as staff reguarly claimed they were too busy. At times there was a lot of noise on the ward due to patients trying to abscond or presenting with psychotic symptoms. Staff often seemed to use control and restraint procedures and drugs to calm down the most challenging patients. Over the weeks it seemed that the only support some of us were getting was from each other, or from one of the activity groups coordinated by a lovely lady from an organisation called Rainbow Learning.

When I moved areas four years ago, funding for my care at The Retreat was withdrawn, and I had to access local services. Although the Primary Care Trust (PCT) states that its employees should not be treated locally, my new consultant was insistent that the local services in the area in which I work were the only option available to me. Services that were available were:

  • out-patient appointments with my new consultant
  • 72hr crisis support, and
  • admission to the local acute ward.

Focus on containment, not therapy

My new “care-provider” seemed to focus only on containment and not on therapy and treatment. I have endured various admissions to our local acute ward, formally and informally, and while the staff are generally pleasant (although not all of them always engage with me), I have never had any therapy or treatment during my stays. My fluctuating condition, which I think is best described as complex post-traumatic stress disorder (the same thing many war veterans are afflicted with), has therefore tended to deteriorate over recent years, and ultimate recovery has seemed doubtful.

Therapeutic communities and aspecialist programme focused on recovery

During the present admission I reflected on The Retreat Hospital and the type of care they provide. My experiences in the acute ward at my new hospital are hugely different to my experiences at the acute ward at The Retreat. There were many types of group therapy during the day, as well as regular one-to-one care with variously qualified members of staff. As patients, we were encouraged to look after each other too, and the ward was described as a “therapeutic community”. The Retreat also runs a specialist programme –  the Acorn Programme – for women who suffer with complex post-traumatic stress disorder, such as sexual abuse survivors. The programme operates as a therapeutic community, and there is even more group and individual therapy than the acute ward. The main ethos of the programme, in my opinion, is that everyone works together during therapy and supports each other in or out of therapy. The programme is about recovery, and is run by some excellent therapists.

A suggestion

During my current admission I have noticed how we as patients have been supporting each other and sharing our experiences. This type of interaction between us as patients has got me thinking. Surely if patients are lucid, orientated and want to recover from their illness would it not be more cost-effective to run more therapeutic communities in hospitals, to provide therapy groups throughout the day and daily one-to-one therapies, and to focus on recovery before discharge? Surely this would reduce admissions to hospital and the drain on resources in the community, A&E and general medical and surgical wards who provide care for those who have repeatedly self-harmed?

Consultant now looking for in-patient treatment for me

Talking of therapeutic communities, following the MDT meeting on Tuesday when my consultant asked to see me she gave me the news I had so longed for. She discussed my care over the last four years and voiced her concern that my admissions to hospital had increased and that my condition seemed to be getting worse. Out of the blue she began to tell me that she felt that all local services available to me had been exhausted, and she feels I would benefit from in-patient therapy. She told me she had made enquiries at St Andrew’s Hospital in Northampton who run a specialised programme for women. However, they only accept patients who are on a section 3.

News got better but four years wasted

The news got even better! She then told me that she had also made enquiries at The Retreat Hospital about the Acorn Programme, and was willing to apply for funding from the PCT for me so I could have The Retreat’s specialised treatment. I couldn’t believe what she was telling me! The sense of relief flowing through my body was amazing. The light at the end of the tunnel had finally appeared. Although I realise the process of gaining funding and waiting for admission will take some time, just the thought of knowing that treatment will eventually be available has made me feel more positive about the future. If one had applied a common-sense approach to my needs, then surely I would have been referred to the Acorn Programme years ago?  The money that has already been spent on my admissions to hospital over the past four years plus on medication, the use of  the local crisis team and admissions to hospital generally, would have amounted to far more than the Acorn Programme would have? I can’t help feeling aggrieved that I have wasted the past four years of my life because it has taken that long for a consultant to realise the treatment I need is specialised and that a therapeutic community is more appropriate for me. I can’t help but worry that there are many others like me who are still only receiving minimal and inadequate services and that recovery is therefore not an option for them just now.

Local treatment inappropriate

In order to strengthen my case to the PCT, my MP is writing to the PCT to support my application. The solicitor I have been using, who specialises in mental health, has written to my consultant informing her that it is inappropriate that I am treated locally in the future. I have had to treat many patients during my duties as a paramedic and then to have to see them again in hospital as a patient is not only embarrassing but I feel it could also compromise my professional position. Thank goodness I work with very supportive colleagues, a fact that helps enromously and means a lot to me!

My consultant granted me home leave Tuesday to Thursday, and requested that I see her on Thursday morning at 9.15 to discuss discharge and the future. In a new post I will let you know how that meeting went and what further hurdles I have to face over the next few months.

Love and best wishes

Angela x

Angela Bayley with Father Christmas

Here I am with Santa. Many children are traumatised by meeting Father Christmas (Santa Claus). However, what caused my complex post-traumatic stress disorder (or borderline personality disorder) was far more disturbing. In this posting I discuss these diagnoses. I hope healthcare workers will read it.

Hi, everyone.

I hope your weekend has been as good as mine.

Off like a shot

I didn’t tell you in my last posting, but I had originally thought I would be leaving the ward at 10 a.m. yesterday, not 1 p.m. I was set ready to go home at 9.30, full of excitement, and so I was absolutely horrified to hear that my section 17 leave was to start at 1 p.m. Like I mentioned in yesterday’s blog, time passed slowly, but Andrew eventually appeared at 12.45 and as soon as the clock struck one I was off like a shot.

A cuddle and a whirlwind

I arrived home and the first thing I did was cuddle Laura. Her face was a picture of happiness to see me home. I felt motivated to crack on with the chores Andrew hadn’t managed to get done due to the pressures of work, caring for the girls and visiting me. It’s been a long since I felt interested in my surroundings or motivated to look after the home we have built together. Yesterday I was ready for action and determined to get back to normal, put my Mum and wife head back on, and make up for the things I had overlooked. I went through the house like a whirlwind, cleaning, washing, ironing and changing beds. The house felt clean and fresh and I was looking forward to getting into a nice clean bed.

Mid-afternoon, Sarah and Charlie (my childhood social worker and her husband) came to see how I was before they went on holiday, and they brought me a lovely scented candle for the lounge. We all sat together in the kitchen, putting the world to rights, and we also discussed my current situation with the police, social services, mental health services and work.

Positive – no flashbacks or alcohol

For once I managed to engage in a positive conversation and not be haunted by flashbacks and avoidance tactics, like medication, self-harm and alcohol. Andrew had bought me a bottle of wine, based on our agreement that I would only drink at weekends. I managed to forget it was sat in the fridge.  Compare this to a few weeks ago when I’d have finished it within hours of it being bought and would be well onto my second bottle! With Andrew’s support, I was determined to stay focused and positive as well as tackle my problems head-on.

My stepmother is harmless now

Not long after Sarah and Charlie had gone, a blue car pulled up outside the house. My heart sank as I saw Lillian (the stepmother whom I describe at length in Disruptive) get out the car with her mother. I didn’t want anything to ruin my weekend, and I knew her presence could trigger bad thoughts and feelings. Although she is harmless now, and has certainly repented her sins, she is a clear reminder that I had a troubled childhood and that my father abandoned me on more than one occasion.

Not swamped by uncomfortable feelings

Anyway, I opened the front door with a big smile and told myself that Lillian’s visit was with good intentions and she wasn’t going to trigger my emotions or cause me any harm. She handed me some beautiful flowers and I led her and her mother to the kitchen for another cuppa. We had a good natter about “this and that”, and then she told me my father had been in touch with her to tell her about my book Disruptive, which she hasn’t read. This was the first time it had been mentioned since I had started writing it. I managed to push my anxieties to the back of my mind and explain the process of my writing and how useful it had been. I told Lillian what my aim was – that it wasn’t to apportion blame but to help me understand things that had happened to me in the past as well as help other survivors similar to me. I really stood my ground, whereas normally I would pussyfoot around Lillian, feeling guilty if I upset her and caused any disruption. It was an achievement to believe in myself and not be swamped with uncomfortable feelings and maladaptive behaviours.

Enjoying the moment

Andrew, Laura and I managed to sit down on the sofas with our pizzas round about 8 p.m. Andrew cracked open my bottle of wine as well as getting himself some pear cider. Laura wanted to watch “Casualty” so we selected the film we wanted which we put on at 9.30 p.m. It was so nice to just relax all evening with my family, climb into my own bed and enjoy the moment instead of dwelling on my difficulties.

The diagnoses of “Borderline Personality Disorder” and “complex Post-Traumatic Stress Disorder” and health workers’ reactions

Talking of difficulties, one thing I struggle to get to grips with is the label I’ve been given: “Borderline Personality Disorder” (BPD). One of the kind comments on the blog talks about mental health workers only able to care for those with simple mental health diagnoses, such as depression, bipolar disorder or schizophrenia.  My consultant when I was at The Retreat, Dr Chris, was very sensitive about the label BPD, and would use a kinder label “complex Post-Traumatic Stress Disorder” (complex PTSD). My experience of mental health workers’ reactions when I tell them of that diagnosis is so different – it’s a lot more sympathetic! This just goes to show how discriminated against we sufferers of BPD are, and why there is such a lack of care.

Stigma: “attention-seeking and a nuisance”

NICE guidelines for some years now have included clear instructions for people with PTSD. However, it’s only recently that NICE recognised BPD, and, whilst they suggest that people with BPD are the highest risk group for suicide and that they can have terrible mental health symptoms, they are not very clear about treatment and appropriate care. Sadly, there’s a limited number of establishments that specialise in BPD, and they are usually private hospitals. The stigma of mental health is bad enough and workers are always wanting negative opinions to change. However, many mental health workers frown upon people with BPD, labelling them as attention-seekers and a nuisance. It’s clear that they have little training in this area of mental health and find it hard to understand or implement treatment. The feelings of not being understood are raw for people like me with BPD. I think services should start educating workers more in this area of mental health to prevent ignorance, discrimination and judgemental attitudes.

Please read about BPD!

As an NHS worker myself, I realise that many of us would like more training to deal with difficult situations and diagnoses but it’s seldom available due to cost implications and lack of resources. Therefore can I ask anyone who has an interest in mental health or works with people with mental health difficulties just to take a few moments to read up on BPD, and on how you can help? You would be amazed what a difference it makes to someone’s mood when they feel understood. Only 1% of people suffer with BPD but it would be useful if those 1% were taken more seriously.

User-friendly complex PTSD?

Maybe we should ditch the American label “Borderline Personality Disorder” and change it to the more user-friendly diagnosis, “complex Post-Traumatic Stress Disorder”? I would be interested to know what your thoughts and views are. I hope you can help.

Promised to be home soon

Today has been an easy day. I’ve done some more chores to ease the burden for Andrew. I also cooked a huge Sunday lunch, finished off with homemade apple and blackberry crumble and custard. It felt good to look after the family without considering it to be a big effort or chore. Time passed so quickly and before I knew it, it was 5.30 p.m. and time to go back to the hospital ward. I kissed Laura goodbye and promised I would be home soon.

Abusers have controlled my life for too long

Andrew dropped me off at the hospital and spent an hour with me. He seemed pleased that I was feeling better and encouraged me to stay in a more positive frame of mind. My abusers have controlled my life for too long and at times nearly beaten me. However, I’m still fighting and I am going to try and keep doing so.

I look forward to hearing your comments.

Love and best wishes

Angela x

With my teddy when I was a baby

With my teddy when I was a baby. It listened to me far more than the appeals panel did today.

Hi, everyone.

I hope you’re all well and enjoyed your weekend.

Unfair and traumatic appeal

Some of you may be wondering how my appeal went today. To be honest, it was a foregone conclusion. Sadly, I lost it and the panel (the same as last week’s) decided not to lift the section two. I won’t bore you with all the details of today’s appeal. However, I do want to discuss how unfair and traumatic the process was.

Whilst I accept the possible reasons for my original detention under the Mental Health Act, I do not understand why services can only provide containment instead of therapy for me, and support and help to maintain a healthy environment for me and my family.

Today, the appeal consisted of the three panel members (an independent psychiatrist, a judge and a lay person), plus a social worker, a ward nurse manager, my consultant and my solicitor. I might as well not have been in the meeting. Let me explain why I feel like this…

Everyone asked… except me

Before entering the room, my solicitor asked me to keep my cool. We entered the room and sat in the same seats as before, the judge opposite me. He started by clearly stating that no one was to speak unless spoken to, nor interrupt people as they were speaking. He introduced himself  and his panel again, and then asked everyone for an opinion – with the exception of myself.

Contradictory evidence

I sat in silence and listened to the judge and had to keep my mouth shut. Each party was questioned by the panel and then questioned by my solicitor. A good fifty minutes to an hour later, I was still silent. My consultant shocked me with some of her answers to the questions she was asked. To summarise:  her report and verbal evidence were contradictory. On the one hand, she wanted me to remain on the section due to the alleged risk “I posed to myself and others”. On the other hand, she was the one who allowed me to have section 17 home leave for five days last week.

Hurtful and inaccurate

Much of what the ward manager said was what my consultant had written in her report and what she had said to the panel. (A lot of what my consultant had written in her report had originally come from my book, Disruptive.) Meanwhile, I remained silent while they made some very hurtful comments about me, with many inaccuracies, as they recounted traumatic events.

Errors and miscommunication

Then the nurse was questioned, and all he really  did was repeat (parrot!) my consultant’s answers to the questions, with the odd comment about me absconding from the ward last week and a few nursing comments to the effect that I had been compliant with treatment on the ward. My solicitor was really good at this point, and delved deeply into my absconding, pointing out the reasons for it. The nurse in charge eventually confirmed the cock-up made about my contact with the girls and explained that I’d been caught up in various errors and miscommunications.

Social worker had only met me once

Next it was the social worker’s turn. The panel asked him questions and he agreed that because he didn’t write the report he couldn’t comment an awful lot. He also confirmed that he didn’t know me very well and that he had only met me on one occasion. He then rabbited on about risk and safety and said that it had been confirmed by the children’s and young people’s service that if I were to return home it would not be deemed to be a child protection issue. What then became confusing was that he continued to bleat on about risk and safety and how Andrew couldn’t look after me or protect the girls properly as he has to sleep at night!

Making no sense

I glanced across at the panel and saw the psychiatrist’s eyes closing and his head dropping. He was obviously bored as the social worker was making no sense. My solicitor asked him various questions about him knowing me, care in the community and what the needs of child services really were. The social worker had real difficulty in committing to anything, and it was evident that he really hadn’t got a clue about my case, just a judgemental view on it.

Misquoted my husband

Within the social circumstances report there is a section about the nearest relative. According to the report, Andrew had said he wanted me to remain on the section. Seeing the report before the meeting, I had been horrified until I had spoken with Andrew to clarify things, a fact that was revealed to the panel, my solicitor making it clear that he too had spoken with Andrew before the hearing. Andrew, incidentally had also been horrified when I told him what was in the report, because, in fact, Andrew had said that “if remaining on the section means Angela will get the treatment she needs, I will agree to it”. However, Andrew had also said that he wanted me home as it was disruptive to the family my being in hospital and he was willing to care for me.

Only solicitor positive

I felt so frustrated sat in the middle of all the so-called experts, not being able to challenge any of their theories or opinions. This silence triggered so many unpleasant feelings for me, and at one point the whole thing really felt like abuse all over again. Because I had to remain silent for so long, the “silence message” was ingrained on my brain so that when questioned by my solicitor I struggled to answer – I just knew I’d lost before I’d started. Not one positive comment was made in that room by anyone but my solicitor when he did his summing up. He did say I was willing to remain a voluntary patient and was even requesting further help (which wasn’t forthcoming from the services). He also questioned “the risk” expressed by the experts, and challenged my consultant as I had had a period of five days’ leave prior to the hearing.

Hospital assessment of dissociative state not practical

Leave was challenged as I’d been honest and said I’d had some difficulties with dissociating on the Sunday night and problems connected with this. Little did I know, this would be held against me at the time of the hearing. My consultant stated she still wanted me in hospital for “assessment” so my dissociated behaviour could be assessed… Pretty difficult when it normally happens at home and with limited company as opposed to on a busy ward with lots of people!

Not going to lift section

At 16.30 the hearing drew to a close and we were asked to leave the room. We were instructed that the panel would deliberate and make their decision and would inform us as soon as they had reached it. One representative from the hospital had to be present as well as me and my solicitor. At 16.55 we were called back in, minus my consultant – amazing how she was able to cause such a fuss and leave such carnage behind and then not be there for the verdict! The judge instructed me that after listening to everyone and having taken a while to reach a decision they had agreed that they were not going to lift the section. They said their goodbyes and we left the room.

Expected to let them abuse me all over again!

I was disappointed but not surprised as it felt like a foregone conclusion from the outset. I had a brief chat with my solicitor who said he was going to come back and see me in a few days. The social worker disappeared and so did the nurse. To say I posed such a risk to people that I needed to remain locked up seemed ridiculous. Up to this stage, I have been allowed to go off the ward whenever I feel like it and not one nurse has ever asked me how I am and if I need to talk. It seems I’m still expected to remain silent, and sit back and let services abuse me all over again!

Andrew has visited tonight to tell me of another hurdle to get over. The police want to interview me tomorrow at 10 a.m. with a view to charging me, if they can, for threatening to kill. My job is still hanging in the balance and had it not been for my husband, my daughters and this blog, I would be very ill, if not dead. This blog is allowing me, like my book, to break my silence.

I will be in touch tomorrow and let you know how the day’s events pan out and what my future holds.

Take care everyone, and thank you so much for listening to me.

Love and best wishes

Angela

[This entry was written late at night and posted the following day.]

Angela Bayley in the sunshine as a baby

This is me as a baby enjoying the sunshine, much as I did on Sunday 11 July 2010!

Dear All

Today has been a lovely day and I hope you have benefited from the glorious sunshine.

Like I said I would, I have spent most of the day thinking. One of the comments posted really helped me to try and understand how services respond and why. Responding to situations or problems should be done in a more balanced way as opposed to a chaotic way. I have decided to sort out my mental health problems during this crisis and then tackle work and child protection issues.

Dissociating as a response to stress

This is just a short message tonight as I’m pretty tired and need to go to bed. If I stay up I would be putting myself at risk as my episodes of dissociating are on the increase and the hours go by and once I become fully oriented I find it difficult to recall anything. My psychiatrist wants me back in hospital today so the staff can record the episodes of dissociation. My named nurse has said what I am doing is a response to stress and will pass.

Thank you for your comments!

Today I received several  blog entry comments. Thank you everyone who has visited my site and left comments!  It means so much to me and the advice I have been given so far is very interesting and useful.

I will blog again tomorrow.

Good night and sleep well.

Love and best wishes

Angela x

This is me in my place of work - an ambulance. I love my job, have every reason to believe I am good at it, and want to return to it as soon as possible.

This is me in my place of work. I am a paramedic. I love my job, have every reason to believe I am good at it, and want to return to it as soon as possible.

My first book ended on quite a high note. However, it did say things have been a bit up and down “but I’m getting there”. I’m trying to come up with a happy ending for my second book but at the moment I’m finding that really tough due to the lack of services and help available to me. I thought I’d start this blog by discussing my present circumstances instead of talking about the past as of 2005 (the ending of my first book); I don’t want to spoil the story for the second book.

PTSD and borderline personality disorder

Since moving to the Notts area, all treatment at the Retreat was stopped by my local Primary Care Trust (PCT) and referred to local services. Apart from my diagnosis of Post-Traumatic Stress Disorder (PTSD) and an eating disorder I’ve now been given a new label: “borderline personality disorder”. Initially I was horrified to hear such a label, but having spoken to Dr Chris with whom I regularly keep in touch, I now understand what the diagnosis means. According to National Institute for Health and Clinical Excellence (NICE) guidelines they have now recognised it as a mental illness. They say it carries the highest suicide rates. Amazing, then, that there is very little help available!

Suing Notts County Council…

Talking of suicide, I am currently in hospital and over the past two weeks have been on the brink of suicide again myself. As some of you know, I am suing Notts County Council for “failing to protect” whilst I was in their care. Coincidentally, Notts County Council work in conjunction with Nottinghamshire Health Care, who are my care providers.

…and now sectioned by them!

Two weeks ago I was feeling very low and quite hopeless, so I wrote to my psychologist expressing my feelings to him. In the letter I talked about suicide and how I wanted to die and stupidly said I wish I could take Andrew and the girls with me. Obviously, I wasn’t feeling rational and due to having no support from services it caused me to feel quite helpless. Anyway, I managed to keep going and do my shifts at work until 22 June 2010. I began my days off, and before I knew it I was suspended from work, arrested by police on suspicion of threatening to kill and then placed on a section 2 and detained in hospital. You probably wondering why. Well, I am doing the same thing myself. All I know is that Notts County Council rang my employer to say they were concerned about my mental health and then rang the Children and Young People’s Services department to say I was going to kill my children. To finish off, they also rang the police to say the same and then a social worker from the same authority sectioned me and I was admitted to hospital.

Now that I’ve set the scene of my predicament I will leave you to digest what I have written and will come back soon to talk to you about my treatment, the future and how services are treating me.

Anyone who is a fellow sufferer please hang in there and keep fighting. If we campaign hard enough we will get the treatment we need and deserve as set down by NICE.

Love and best wishes

Angela