I had a brain haemorrhage and stroke aged 32. These were misdiagnosed and dismissed as psychiatric issues. Two years later I still have no support and have now been put on the End of Life register.
I have a really rare incurable brain disease called Moyamoya. This affects one in a million people, and causes the arteries in the brain to close off, leading to strokes, seizures and brain bleeds. The disease is progressive and the only way to reduce risk is surgery. The earlier surgery is given, the less chance of brain damage. My brain has become more and more damaged without treatment, and I’ve been left to become more and more disabled. My mental health history has been used to deny issues and delay diagnosis of the disease, leaving me to suffer.
Even now I have a diagnosis I still have been unable to get support and my mental health is still being used to deny care. The hospice called last week to say that I am being put on the End of Life register. I asked if that meant I would get any support from them with symptom control. The answer was no. The hospice nurse then said she was going to go as I was getting distressed.
I’m 34, I am dying and I have no clinical care or support. I can’t get any symptom control. Yes, I am distressed as the situation doesn’t need to be like this.
Just because I am distressed doesn’t mean I’m mentally unwell.
I can’t access the clinical care I need. My mental health is so often used as a barrier to getting the health care I need.
How has this happened?
Growing up just outside London, in Essex, I was a popular, hardworking child. I won pretty much every award at school and volunteered for multiple charities. I was often cited as a “credit to my community”. I would give my time helping others and attending activities such as scouts and performing arts.
I ended up under mental health services at 18. There was no trigger point that initiated my referral, but on reflection, I had severe respiratory issues as a child and was often unwell. My transition from paediatric respiratory services to adults wasn’t managed. I was left without a team at the national centre that managed me. This led to a worsening of my physical health and multiple hospital admissions, which were often scary. I believe the combination of this and the treatment I was on for my respiratory issues, which has since been linked to neuro-psychiatric issues in children, caused me to experience what psychiatry labelled as ‘psychosis’. Yet there has never been any joint working or thinking.
Psychiatric services responded by medicating me to the point I was wetting myself. In 9 months I was put on multiple medications often at high doses. My response to psychiatric drugs wasn’t as expected. The side effects were terrible, my already vulnerable physical health was made worse. Psychiatry couldn’t understand my issues or response to the drugs and showed a limited willingness to find out what my problems were. I did have an abnormal EEG which is often used to assess for seizures, which now makes sense in the context of Moyamoya. But psychiatry would rather see me as the problem.
Psychiatry started labelling me as manipulative and attention-seeking and suggested that I was malingering. This negatively impacted all areas of my care. Psychiatrists would often tell other health care professionals that they didn’t believe my respiratory condition was genuine – yet they never spoke to anyone in my national respiratory centre. I was at some point diagnosed with ‘borderline personality disorder’. This was done without a conversation with any of my physical health services. Nor was there any evidence of this. It was just a lack of communication.
I would seek support for physical health issues and often be told that my issues were anxiety/depression.
Examples of these have been:
- Type 1 diabetes misdiagnosed as depression. I went to the GP daily as I believed I was going to die. Within four days I was drowsy and the paramedics were called. My sugar levels were extremely high and I had ketone acidosis, which is a life-threatening complication of untreated diabetes.
- I have often been disbelieved when seeking care for my respiratory conditions. This has led to ITU admissions, respiratory arrests and respiratory failure on multiple occasions.
- When I was tired I was told I was depressed. I explained that my oxygen levels were dropping at night, and no one would listen. When I was tested and I had severe sleep apnoea.
The term for this is ‘diagnostic overshadowing. This is when someone with a known mental health issue or learning disability seeks care for a physical health matter, and without running any appropriate tests, the issues are put down as a manifestation of their ‘mental disorder’.
Time and again this was proven to be wrong and there was a biological cause for my physical health symptoms. I had diabetes dismissed as depression and respiratory failure as anxiety. The same issues have just been repeated on a loop.
I never thought it would get this bad
In January 2021 I had a brain haemorrhage and stroke. I had all the typical symptoms of a stroke, including being paralysed on one side. My CT scan showed a brain bleed but I wasn’t reviewed by neurology. A psychiatrist came to see me first, before any neurological team. Apparently, my symptoms were “atypical”. I had 3 scans, all confirming a bleed and stroke. Yet I was discharged, refused follow-up and denied a copy of my discharge summary. Once again I had been misdiagnosed and dismissed, and my mental health history was used to justify poor care.
I was left paralysed on one side without care, and without follow-up, at the age of 32. Overnight my life changed, and things will never go back to how they were before. I haven’t walked since. Little did I know this was the start of a nightmare, and that over two years it would just get worse. My focus was trying to survive and find out why I had a stroke. I wasn’t expecting to be diagnosed with a progressive disease.
Social care refused to do an update of my care act assessment, citing my mental health issues and therefore arguing that I was not within their remit. 18 months later I was still without the appropriate care. Safeguarding concerns were ignored or passed to the mental health team, even though the concerns were about my physical health. I could not access charities such as the Stroke Association. I was excluded from every type of support. Even now, that is still the case. My isolation grew.
I thought once someone actually looked at my scans they would see this had been a terrible mistake and it would be put right. The strokes did verify the diagnosis but I still haven’t managed to get support. I’ve suffered more and more complications and stigma. The mess I am in has grown as a result.
Everywhere I go, the starting premise from medical professionals is that my presentation is something to do with my mental health. The more I become distressed about the lack of appropriate care or response, the more this justifies the conclusion by some healthcare teams that my issues are psychiatric.
I am in a loop where no matter what I do I’m in the wrong.
Where we are now
It’s now 2 years since my first stroke and bleed, and I have had none of the support I needed. Imagine being told you’re on an End of Life register and not even being able to talk about that with anyone! My needs have gone from being completely denied, to now being too complex, so that no service can help.
I’ve had to fight every system in the NHS and I’ve done this alone. The role of the Integrated Care Board is to join up health and care services – in my case, Essex Partnership University NHS Foundation Trust and Essex Social Care and Social Services. But they have simply refused to work together. Essex Social Care initially denied my needs under the Care Act. EPUT initially encouraged this when an EPUT professional unknown to me changed my social care package to a mental health package, denying that I had complex physical health needs. This meant social care withdrew. Social care then refused to reassess me as my needs increased. They have since refused to act when carers have raised safeguarding concerns to Essex Social Care around my physical health needs and how my needs are neglected, putting me and them at risk. The issues are ignored and sent to the mental health team, even though they are not related to my mental health. For example, my need for equipment to safely transfer me from my wheelchair was not passed to EPUT.
On another occasion, I was told the Integrated Care Board would be finding me an emergency placement after a carer suddenly left. I had just been assessed as needing 24/7 care, and this was before the Easter bank holiday. I was told someone would call me to inform me what was happening. No one did. I was left at home, stuck in one room, without food, drink or the ability to care for myself over a long bank holiday. I live in an unadapted property meaning I am trapped in one room as my wheelchair doesn’t fit through any doors. The situation was raised as a safeguarding issue to social care who again didn’t do anything. They sent it to mental health services stating it was self-neglect. I am wheelchair dependent, unable to wash, feed or dress. There was no evidence that this was self-neglect nor did anyone contact me to see if I was ok.
I was excluded from all the advocacy providers in my area as my situation is “too complex”. I have no quality of life and no symptom control. I’ve been rejected by 7 Pain services, with the excuse of complexity being used each time. I haven’t been able to access Occupational Therapy, physiotherapy or equipment. I’ve gone around and around and been left to suffer. I’m 34, completely alone, and suffering from preventable complications as I can’t get help to manage them. When there are things that could help, I just can’t access them.
My GP has sent 50 emails to consultants but none have responded.
Due to the worsening of my needs I now require 24/7 care. My stroke (which was misdiagnosed) left me with limited movement on my left side. I am now wheelchair dependent. I am having recurrent strokes, around 15 TIAs (mini-strokes) a week. I am now having seizures and no neurological team is taking the lead.
I cannot attend to any of my needs on my own. I need help with all my complex medications, nebulisers and insulin, eating and drinking, positioning me, and cutting up food. I also need catheter insertion, bowel management, and help in pretty much all areas. My carers are not able to provide the care I need without the clinical input to guide them. We cannot get any clinical management.
My carers often fear that I am going to die due to not being able to obtain the clinical support I need. They have been refused the tools and support to do their job safely. Concerns they have raised are ignored. My carers administer medications but there is no formal medication list. This has led to two incidents where I have been overdosed, once with morphine and another time with insulin. Safeguarding concerns around this were ignored.
I’ve just been left to die.
I am unsure of the relevance of a mental health diagnosis now. My mental health won’t kill me but the mismanagement of my physical health most definitely will.
Having a stroke at any age is a devastating thing. Having a stroke when you are young is a big deal. It robbed me of my independence, my ability to communicate clearly, and my mobility. To have it misdiagnosed, even though all the evidence was there, is unbelievable. To then be told that my condition is incurable and that I am likely going to die due to the limited blood flow to my brain, is incomprehensible. To know all this and still not have adequate clinical support, essential equipment or suitable housing, is devastating. I am watching my brain scans get worse, and develop more areas of scarring, while not able to access supportive care. I can’t believe this is happening. Being labelled as ‘mentally ill’ has done nothing to improve my life but has been used to justify the poor practice and deny my physical health needs.
What makes me so sad is that my life doesn’t need to be as difficult as it currently is. Things could be offered which would help me and I’ve highlighted this to all the different providers who just ignore me. A local brain injury group sent me a letter asking for money. It was captioned “No one should be alone with a brain injury.” But they had refused to help me as I was “too time consuming”. The local hospice has signs saying no one should be dealing with dying alone- yet here I am, excluded from anything that might help.
I am part of my community and I should matter.
An update from Daisy, 22nd March 2023:
Thank you to everyone who shared my story. Unfortunately, this has been ignored by services.
My GP raised safeguarding on February 1st 2023. To which there has been no response. The surgery has chased. ICS have said they need to give more time. Yet my life is put at risk and I am left to suffer while waiting.
ICS sent an email to say that they need a meeting about a meeting. Then sent an email to clarify that it wasn’t a meeting about a meeting but a meeting on how to facilitate a meeting. To which there has been no action.
ICS emailed to say that there were no open safeguarding issues. This is now at the director level in multiple organisations that are actively blocking a serious case review.
I am coming to preventable harm. They are waiting for me to die while doing nothing to make this easier.
Current safeguarding issues:
None of my clinical needs are being met. I have no access to the medical care that is needed. My GP is being ignored. A lack of equipment puts me and the care team at risk. No safe housing, which means that the assessed care package cannot be delivered safely. I am stuck in one room. There has been no multi-agency work. Currently, there are 40 different teams across the NHS doing whatever they like, in isolation. Things are being missed.
The NHS is not responding to my needs. I am getting sicker quicker than there is any action. I am denied respite, hospice or supportive care, with the excuse of “complexity” being used.
Please help my voice be shared.
This will end up in a serious case review and I may not be here. I beg you to be my voice.
If this is happening to me I could be anyone. I am articulate, well-educated, and vocal and this is still happening.
How many others will just die like I have been left to?