A month ago, local resident Charlotte Farhan wrote an open letter to the NHS and Adult Mental Health Services asking for help with her ongoing acute mental health issues. She’s still waiting for it to arrive. Here, Charlotte explains what it’s like for people with acute mental health living without the support they need in austerity Britain.
Months ago, my medication was put up for review and I was asked to attend a review meeting. As my doctor knows, I am unable to leave the house alone, and when I made clear that I was not able to attend the meeting, my medication was abruptly stopped.
Now there are not many meds I can take for my mental illnesses: anti-psychotics make me zombie like, mood stabilisers seem to make me physically sick, and most anti-depressants do not work for me. However Citalopram is a drug which minimises my anxiety disorders (including Complex Post Traumatic Stress Disorder, and agoraphobia). I take the 40g dose which is the highest – it takes the intense feelings away, the feelings which cause me to be hyper-vigilant, which means I am in constant fight or flight mode. It feels like your entire body is trying to kill you and save you from imagined danger all at once. Even though Citalopram is not a miracle cure and does not make me more able, it allows me to exist in a calmer mind set, which is a life line when dealing with complex illnesses.
As you may be aware, it is dangerous to stop medication abruptly as it can cause side effects and withdrawal symptoms. My withdrawal was a hellish experience and potentially life threatening. The abrupt stopping of my medication caused: suicidal thoughts and plans, anxiety, panic attacks, brain fog, concentration problems, insomnia, migraines, confusion, depression, dizziness, nausea, mood swings, fatigue and irritability. My other illnesses worsened and I began to experience psychosis – including delusions and hallucinations related to psychotic depression.
Despite my previous protests, the doctors only reinstated an emergency prescription for 30 days when I began to complain on social media. Yet no accommodations were made for me to access my GP or provide a repeat prescription, meaning that when the current 30 days end, I’ll once again go into withdrawal.
I recently wrote an open letter to the NHS and the Adult Mental Health Services explaining the problems I’m experiencing in accessing support for a range of mental health issues, including Complex Post Traumatic Stress disorder as a result of child abuse and sexual assault. These conditions have left me agoraphobic and unable to leave the house alone for nine years.
In the letter, I explained that:
For the past 9 months or so I have been left untreated and unsupported by my GP surgery – which is Baffins Surgery Portsmouth and Solent NHS Trust as well as other departments. I used to have a family member who was able to take me to the many medical appointments a person like myself has, but unfortunately I no longer have this family member in my life and since then have been unable to access any care, appointments and clinics. This is because the NHS does not deem people like myself (mentally ill) to be housebound – even when they have conditions which specifically challenge their freedom to leave the house, to interact with people, to use the phone and lead independent lives. This is discrimination and against my human rights to access care.
I have asked my GP and Solent NHS Trust to help me again and again, it is not until I tweeted them in crisis (I am having a breakdown) that they have responded, and still now they keep offering me appointments which I cannot get to.
At first I thought things were starting to look up. After tweeting my desperation and crisis live to the world and my followers, the NHS services in my area contacted me and so did the patient liaison services at my GP surgery.
But my hopes were short-lived. Instead of understanding, I found myself on the receiving end of what is best described as a clear lack of understanding of acute mental health issues, and at worst, what can only be described as Ableism – a form of discrimination against disabled people. This has left me feeling defeated, suicidal and very ill.
In my correspondence with the NHS several things were said to me which constitute discrimination and ableism among NHS staff who lack understanding of complex mental health and illness. Here are some examples of the frustrating things I heard often:
“It’s a shame your husband cannot attend evening appointments…”
I am predominantly housebound and reliant on my husband to access the world outside. The surgery opens for only one evening a week for late appointments and it clashes with my husband’s working hours. As a disabled, housebound person, I frequently hear this observation from medical teams who rarely reflect that it’s a shame their services can’t be more flexible in order to meet the needs of patients with complex illnesses.
“So you say you are out of medication…”
This little phrase has come to haunt me – ‘You say’. This may be semantics, however saying “you say” indicates a lack of belief. As a survivor of child abuse and sexual trauma, not being believed or heard forms a core trigger to my mental health. Is it so hard to say, ‘You have no medication, let’s see how we can help you with this’?
“There are other surgeries which may offer what you need…”
This was in response to my request that when making a home visit, could a GP message me on email or text so that I know it’s them at the door. As well as being made to feel that I’m being so difficult I need to be referred to a different surgery, fundamentally this statement tells me again that as a patient, I should change my surgery, rather than health services making some basic changes to meet my needs. By contrast, we don’t send wheelchair users to a small number of surgeries with a ramp (some of which might be a longer distance from their homes, making travel more challenging). Instead, we put ramps in place at all surgeries.
“This appointment could have been had by another patient needing a home visit…”
Due to my past experiences, I cannot answer the door if I am not certain who it is, and due to impairment in my ability to communicate, I also cannot answer the phone or make calls. This is why I asked my surgery to confirm by text or email when my GP is on their way to my house. When this has not been done, I’ve not answered the door. This means that not only have I missed my chance to access the care I badly need, but then I am ‘told off’ for this by the people who are meant to be supporting me.
The main issue seems to be a complete lack of understanding of complex mental illness and of disabilities as well as a lack of empathy. I understand that the people I’m often dealing with at the frontline of mental health services are not actually medical professionals – this is one part of the problem. If frontline teams do not have the knowledge of the acute mental health issues facing the people they are responding to, should they be put in these roles?
I have repeatedly asked for a support worker who could help me through the complex minefield of bureaucracy in our health services, someone who could make house visits and represent my health needs in the broader health system – because not everyone can be an expert in complex mental illnesses.
Since I wrote my open letter, it took me another 3 weeks to write this article on what has happened since (very little). I feel defeated. My only motivation is that by fighting for myself I can fight for others.
Over the past few weeks, so many people have messaged me telling me how they are in similar situations. Although I often feel I am holding on by a thread, my mission is to create change. Whether I can maintain this level of fight when the next withdrawal happens feels like anyone’s guess. For now, my fight is waning, but still intact.
Image by Charlotte Farhan. Find more of Charlotte’s artwork at her website.
A version of this article was first posted at Charlotte Farhan’s website, where you will find a copy of her email correspondence with Solent NHS Trust alongside weblinks and details on the impact of sudden withdrawal from Citalopram.