In this blog I describe the painful and re-traumatising process of accessing a Personal Health Budget (PHB) from the NHS to fund a package of individualised support. This is in recognition that mainstream Mental Health Services can’t cater for what they feel are my ‘complex needs’. The journey to get to this point has been difficult and at times, soul destroying. It could and should have been very different, and although I am grateful for the support I now have, there are lessons to be learned if others are to avoid the additional pain I experienced at a time of acute crisis.
In my case, I was lucky to find a private therapist who specialised in trauma, was prepared to work with me long-term and had a flexible approach to supporting me. At the point of applying for a PHB, I had been working with her for over three years.
I credit my ability to dissociate as a skill which has allowed me to survive the abuse I experienced as a child by pushing it out of my awareness and into other parts of myself so I could continue to face the world. In the work with my therapist, we were aware of this and the ways it both helped and hindered my life. There was no need to label or consign it to being a ‘disorder’. Initially, my therapist had very little experience in this area but vowed to learn with me in a way that felt like an equal partnership.
I’d got a taste for what it is like to work with a therapist who has time to listen and followed my agenda rather than something defined in NHS guidance. We worked hard to develop our relationship and I felt my best chance of meaningful support and healing was to stay with her, especially as previous experiences with Mental Health Services had shown me that they cannot offer long-term disability affirmative and trauma-informed therapy.
As a disabled woman I face multiple disadvantages, a low income being one of them and I was at the point where I could no longer fund my ongoing therapy. When the extent of therapy I would likely need became apparent I was told about the option of having a PHB to fund this.
Fighting for Support
The initial assessment was brutal. The woman sat in my lounge and further invaded my privacy by asking intimate details about the mental distress I was experiencing. Her lack of respect for my pain made ploughing through the assessment feel impossible. I forced myself to tell her things I didn’t want to say and didn’t want recorded but I knew it was my only chance of getting funding. Shame stabbed into me when she wanted me to show her proof of self-harm and was dismissive of the huge amount of trust that usually takes.
I knew the criteria well enough to know I did qualify but the way she was selectively writing things and dismissing everything that didn’t suit her aim of me not qualifying made the possibility vanish before my eyes. There was never any acknowledgement of the insight I had into my challenges and my ideas about solutions.
Predictably, it was turned down at panel because I wasn’t considered ‘complex’ enough to require individual funding and I was told mainstream NHS services could support me. I then had the arduous task of going around the various services to prove this was not possible.
I was able to survive past trauma through my ability to dissociate. I actively reject the notion of labelling it as a ‘disorder’ but as the NHS depends on labels and failed to take on board what I was saying without one, I felt forced into seeking a diagnosis to be used as evidence.
In order to keep some control, I paid privately for a specialist assessment despite this being a struggle on a low income. I was treated with care and compassion throughout the process but I couldn’t shake the feeling that I was betraying myself and my values. The consequence of suddenly having a label of ‘Dissociative Identity Disorder’ thrust on me was that I felt like my difficulties had been repackaged as an inherent problem or pathology within me, ignoring the associated survival skills and completely negating the role of the abuser in the formation of the ‘disorder’.
With this label I started my journey moving around services with the hope that I would now be noticed. Despite being the same person deemed not ‘complex’ enough two months prior, with the label, I was now repeatedly being told I was too ‘complex’ and services couldn’t help me. It was a double wounding because the diagnosis not only pathologised my survival skills but also labelled me as too ‘complex’ to get support. I had this message repeated numerous times after going through each assessment, retelling painful events from my past, only to be referred on to someone else. Some professionals did this whilst assuring me the next person would refer me on too but I still had to go through the process. Not only is this a huge waste of precious NHS resources and time but it also played into previous abandonment traumas, reinforcing my fears that other stable people in my life would see me as too ‘complex’ and abandon me. Although the consistent and repeated rejections were the evidence I needed to prove my need for funding, it took a huge toll.
My World Turned Upside-down
Mid-way through the year the main abuser suddenly died and on finding out, my world came crashing down. I was already overwhelmed with the fighting and I did not have the energy reserves to deal with the torrent of emotions now being thrown at me. I quickly spiralled into crisis where plans to end my life took up every minute of the day. I couldn’t afford to fund extra support privately and I was relying on the NHS to help me. The fight wasn’t just about funding anymore – it was a matter of life and death.
I was terrified and begging everyone for help. I have had secrecy trained into me through years of abuse but now I was disclosing to anyone who might help. I was revolted by it but I was terrified and it felt like my only chance to stay alive. I reluctantly agreed to be referred to the Crisis Team as I knew I was at the point where a referral would happen whether I agreed to it or not. At least this way I could cling to some control.
Past Experiences with the Crisis Team
I had encountered the Crisis Team the previous year when a traumatic memory resurfaced, leaving me struggling to cope. The Home Treatment Team thrust ‘coping strategies’ on me, sometimes leaving me with reams of papers containing meaningless lists which further overwhelmed me. My experience of crisis is raw, untameable emotions rushing to the surface and overwhelming me until suicide feels like the only escape – having a bubble bath or going for a walk isn’t going to fix that.
I had an innate need to talk about my feelings but I was repeatedly told that wasn’t appropriate or wasn’t the role of the team. I knew they wanted me to stop feeling suicidal but I didn’t understand how they wanted me to get to this point without talking about what had led me there.
Their only answer was medication. They made it clear the prescription was ready for me and they would bring it as soon as I stopped refusing it. I was made to feel like a naughty child being difficult for people who knew better. I had learned about medication’s role in silencing me from the abusers who used it during the abuse to make me comply through sedation. Therefore, I have a huge fear of medication. Now it was the only solution of the people I expected to help me.
When I tentatively explained my need to talk about what had happened and how helpful I was finding therapy, the psychiatrist abruptly recommended I stop therapy as she claimed talking about my past was detrimental and I should ultimately forget it. I had no idea how this was possible when disjointed memories and feelings had always ruled my life, keeping me captive. Instead of challenging it, I sat in silence and accepted her words like bullets into my soul. I was asking for too much and should be ashamed. I was too much.
I shared that my biggest fear was being sectioned because I knew the trauma a relative had experienced when subjected to this. I was told if I complied then this wouldn’t need to happen. I think they intended it as comfort but I saw it as a threat which resembled those made by the abusers wanting my compliance.
In the five weeks I was being visited by the Home Treatment Team nothing changed, despite them throwing ‘strategies’ at me. I needed to make sense of the disjointed trauma memories but no one asked me what I needed – I was instead told.
Despite still feeling suicidal, I was discharged with no other NHS support in place. I wasn’t involved in this discussion and the decision was justified on the outcome of a risk assessment completed without my knowledge. I wasn’t asked anything related to my suicidal thoughts because they were actively avoiding discussing them so I had no idea how they came to this decision with such surety. I was told the visits would stop the following week and that was that.
Fighting for my Life
Whilst the interventions I had experienced in the past crisis weren’t particularly helpful and gave me the clear message they didn’t want to hear my distress, at least it was something.
The Crisis Team, during this most recent crisis triggered by the abuser’s death, now refused to refer me to the Home Treatment Team because I was still declining medication and they claimed this was all they could offer. I was patronised for not understanding the benefits of medication despite my extensive research on the matter. One GP claimed medication had to be tried first before she could refer me anywhere else. This was an alarming first port of call, especially when I was repeatedly told medication would only help me – there was no mention of the side effects, increased suicide risk or withdrawal issues. They once again neglected to acknowledge that medication formed a big part of my abuse and by backing me into the corner they resembled my abusers and in my terrified state this amplified the crisis.
The Crisis Team wouldn’t take into account information from my therapist whom I had been able to confide my feelings and plans to through the trust and safe space our relationship gave me. It was apparent the Crisis Team saw me as a disabled person and they had preconceptions of my abilities that led them to underestimate the risk. Problem solving had been key to surviving in an inaccessible world, but now it was enabling my mind to come up with achievable plans to end my life. I was consumed by the shock and finality of the abuser’s death and the painful reality of never being able to get justice for what had happened. In my distressed state, I felt like all his badness had transferred to me and dying was the only way to stop anyone else being hurt. I was both numb and in agony. The suicidal thoughts were out of control and I felt like I was witnessing a continuous horror movie where a disastrous ending was inevitable. One professional listened to this, then brightly told me I should only feel happy the abuser had died. This same professional had previously been perplexed that I felt a mixed ward with no accessible toilet would not be a suitable option for me…
My GP made a further five referrals to the Crisis Team but all were turned down with not even an assessment. Their only advice was to phone the Samaritans, which is difficult when Cerebral Palsy makes my speech unclear on the phone, especially when I’m distressed. This was proven by the Crisis Team themselves when I phoned them in a distressed state and I was told to phone back when I was sober despite my speech impairment being flagged on my notes.
My refusal of medication meant they were at a loss to know what to do with me. At this point I needed human connection and a space for my pain to be held by another who could meet me where I was at. Yet, I was never asked what I needed.
During these eight weeks of acute crisis, I met 26 professionals and had to repeatedly describe my distress to them, only to be referred elsewhere. I felt like a human pass the parcel whom nobody wanted to hold for too long for fear of being ‘dragged through the coroner’s court’ (actual quote from a professional) if the music stopped on them. I couldn’t understand why the coroner’s court was being mentioned as a possibility yet the Crisis Team felt I wasn’t a high risk.
Mental Health Services stated they couldn’t cater for my diagnosis and my needs were too ‘complex’ so I was left without NHS support. Yet at the same time, I was still being told I didn’t qualify for a PHB as this team felt my needs weren’t severe enough and therefore not eligible for NHS funding.
I was barely a name and set of notes to these professionals. Their frustration at not being able to shoehorn me into their defined boxes was palpable. After repeatedly requesting I was supported, my private therapist was accused of caring too much. She was the only professional who was bothered about my distress. What a sad system it is when genuinely caring whether a person you have been working with lives or dies is a cause for your professionalism to be questioned.
I instinctively knew there was a danger to seeing a psychiatrist. Yet, once again, my concerns were ignored and I was convinced by professionals that they knew best and my needs were so ‘complex’ that seeing the psychiatrist was the only option now. I feared being totally honest with them because I knew my reality would be seen as vastly different to theirs. I didn’t want to be judged through their medical lens as I dreaded being forced down a medicalised route. The psychiatrist unashamedly confirmed there was nothing in Mental Health Services that could support me, reinforcing my feelings of being ‘too much’.
Although this crisis was triggered by the abuser dying, the NHS became a big factor in perpetuating and magnifying my distress. In many ways it has overshadowed my grieving process, as all my energy went into fighting the system to get help and stay alive. I was being broken down by the process of trying to access support and time in therapy was spent repairing the damage done by the NHS.
A Holistic Approach
A friend saw the ludicrousness of the situation. I was battle-weary and she took the fight on. Her professional knowledge of the system eventually made the CCG see sense. A year after the initial assessment, it was agreed that as NHS services could not meet my needs, a PHB would be arranged so I could be in control and fund my support including crisis support, private therapy and trauma sensitive yoga.
Although this is the outcome I wanted, I feel the distress I experienced to reach this point could have been avoided. Before a holistic plan was agreed, I had to spend a year being repeatedly assessed by professionals who already knew they could not support me adequately, but were just going through the motions. Instead of forcing me to jump through these hoops, it would have made much more sense for all relevant professionals to come together and work with me to decide the best course of action in one meeting.
Denial has been an important ally on my journey through trauma, sometimes hindering, but mostly helping me function in daily life. Having to recount what had happened to me forced me to push through this denial, only to be met by judgement and rejection. Although I was asked what had happened to me, this was purely part of history taking and there was no tangible link made to my present difficulties nor did it lead to support. I felt tasked with constantly justifying my understandable reactions to trauma and, in the process, additional layers of shame were added. The disorder rhetoric was assumed at every stage; at no point was my take on the matter ever sought. My experience had been led by bureaucratic procedures rather than my individual needs.
With my friend’s support, I made a formal complaint about the process. The response was weak at best, gaslighting at worst. There was acknowledgment of the distress caused by being passed around, but claimed this had to be done in order to properly assess me and failed to reflect on why this was necessary and what the alternatives might be. The gaslighting occurred through the insinuation that the distress was my individual problem for how I had reacted to what, they perceived, was their understandable and logical procedures.
I think the crisis would have still happened following the abuser’s death but if the funding had been agreed at the time I was first entitled to it, I would have had the space and resources to process what had happened so the distress would have been reduced.
Final Reflections
I want to inform others about the option of a PHB to fund a more holistic package of support than the NHS offer, but also the damage the NHS can do in the process of trying to access support. I’m simultaneously grateful for my PHB and the opportunities to pursue my healing whilst also mourning the distress and lost time I experienced to get to this point.
My experience of childhood abuse put the power in others and removed my control. My later experiences with Mental Health Services did the same. Now I have the PHB, I have the control to do what feels right for me. As well as supporting me on a practical level and reducing times of crisis, it has given me the agency to listen to my needs and respond accordingly for the first time in my life.
My therapist has stood by me throughout. Labels were not necessary in our work; it was clear I dissociated and the reasons why. Our collaborative approach reached the dissociated parts of me, allowing the sharing of hidden stories of distress that were keeping them in the past. Through the dedication, kindness and warmth of the therapeutic relationship, all parts of me have been able to see a better present and an even better future. Labelling me as ‘disordered’ and too ‘complex’ for treatment was not the solution. Time with an empathetic human being willing to meet me where I was at has slowly begun to liberate me from my trauma.
