Where are my human rights? Mental illness in the NHS

Over 3 weeks ago I wrote an open letter to the NHS and the Adult Mental Health Services:  https://charlottefarhanartactivism.com/2016/09/06/open-letter-to-the-mental-health-services-england-nhs/ Charlotte Farhan - Open letter to NHS

Since this letter things started 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.

However it has now become clear that my plea for help and my right to basic medical care was in fact interpreted as an invitation for further discrimination and stigmatisation from NHS staff, leaving me defeated, suicidal and so very ill. Ableism reared its ugly head, as did the neurotypical privilege of the service providers. Surprisingly after all I have been through – I was shocked, naive some may say, but when you are desperate – hope is all you have. My hope is almost non existent now.

The main issue seems to be a complete lack of understanding for complex mental illness and disabilities as well as a lack of empathy. I understand that these bureaucrats are not medical professionals, however if they do not have the knowledge – they can get it, and if they are un-empathetic – should they be put in these roles?

Another problematic situation was the abrupt stopping of access to my medication which happened which left me without medication for several months and no doctor at my practice seemed concerned that this had happened due to me not being able to attend a review which they set for my medication, so due to my lack of ability to attend (which they were well aware of) they just stopped it. 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, most anti-depressants do not work for me, however Citalopram is a drug which minimises my anxiety disorders (C-PTSD, Generalised Anxiety Disorder, OCD, Body Dysmorphic Disorder and Agoraphobia) I take the 40g dose which is the highest (when not in hospital) – it takes the intense feelings away, the feelings which cause me to be in constant fight or flight – a hyper vigilant mind, which feels like your entire body is trying to kill you and save you from imagined danger all at once. Even though it 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. Personally my withdrawal was hell and life threatening, some are lucky enough to not even experience any issues, however there is no way of knowing.

The danger I was put in by the doctors stopping my medication access abruptly led to: suicidal thoughts and plans, anxiety, panic attacks, brain fog, concentration problems, insomnia, migraines, confusion, depression, dizziness, nausea, mood swings, fatigue and irritability. 

This then had a knock on effect to my other illnesses, being under so much stress led to my diabetes and PCOS symptoms to become worse, my borderline personality disorder became more intense and more dangerous for me, intensifying my suicidal desires and my inability to regulate emotions. Also I experienced psychosis – with delusions and hallucinations due to my psychotic depression.

The ridiculousness of this is once I started to complain on social media, the doctors were made to give me an emergency prescription of 30 days, but with no accommodations being made for me to access my GP and as this is not on a repeat prescription in exactly 15 days time I shall be in the same predicament and have to go through this ordeal again, which I fear I will not survive.

In my correspondence with the NHS several things were said to me which constitute as discrimination, ableism and some were just unhelpful in a stressful situation.

Some of the most frustrating things said to me:

“it is a shame your husband can not attend evening appointments”.

Well as far as I am aware just from all the people I know in this country, none of them can access evening appointments due to normal working hours, with only one evening being made open for late appointments, this is ridiculous and very unhelpful to me a disabled person – house bound, with only my husband as my access to the world outside.

“you say you are out of medication”

This may be semantics, however saying “you say” indicates a lack of belief, what would be wrong in saying, “you have no medication, we can help with this”, this was very triggering for me and my conditions as it made me feel unheard and disbelieved.

“There are other surgeries which may offer what you need”

This made me feel so angry and discriminated against. As no real effort has been made here for my disabilities. A ramp is put in place for wheelchair users, WHERE IS MY RAMP! If they are suggesting that some one like me is so difficult and must be put through the added stress of finding another GP surgery just because a GP can not message me via email or text when they are on their way to my house, so that I can answer the door to them, well this is disgusting! This is what we are talking about… Nothing more!

“This appointment could have been had by another patient needing a home visit”

Now this is called victim blaming as well as ableism. I made it very clear that my disabilities mean my communication skills are impaired so I can not answer the phone or make phone calls, I also stated that due to my disabilities I can not go outside alone, sometimes not at all, that a handful of people are safe enough for me to go outside with (all of whom work during surgery hours), and that I can not answer the front door if I have no idea who it is (giving me a time or texting when outside is how I can open the door). Saying that another patient could have had the appointment I so desperately need is so discriminatory against my mental illnesses and has put unnecessary stress onto me when already so unwell.

This is why it has taken me 3 weeks to write another article, as I feel defeated. My only motivation is that by fighting for myself I can fight for others, as so many people have messaged me in the last 3 weeks telling me how they are in similar situations, so holding on by a thread my mission is to create change. However when the next wave of withdrawal happens whether this fight is sustained is anyone’s guess. As there are times when I am not in control of myself. For now my fight is waning but still intact.

Here are my email correspondence with the NHS (this is done for full transparency):

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence


NHS Correspondence


NHS Correspondence

NHS Correspondence


 

NHS Correspondence


NHS Correspondence

NHS Correspondence

NHS Correspondence


NHS Correspondence

NHS Correspondence

NHS Correspondence


For more information on Citalaopram please follow these links:

Mind: http://www.mind.org.uk/information-support/drugs-and-treatments/antidepressants-a-z/citalopram/

Head Meds: http://www.headmeds.org.uk/medications/10-citalopram/use_and_action

Mental Health Daily: http://mentalhealthdaily.com/2014/05/21/celexa-citalopram-withdrawal-symptoms-how-long-will-they-last/

Withdrawal symptoms:

  • Anxiety
  • Brain zaps: Most SSRIs can lead to a person experiencing “brain zaps” or electrical shock sensations upon withdrawal.
  • Concentration problems: a person may feel mentally slow and/or foggy when they stop the medication – this is likely due to changes in levels of neurotransmitters.
  • Confusion: Your cognitive functioning can become impaired to the point of experiencing general confusion. This confusion may be a result of memory retrieval problems, but could also just be confused thinking.
  • Crying spells: Some people report increased depression to the point of crying spells. Low serotonin can cause people to cry excessively.
  • Depression: This is a result of their brain no longer inhibiting the re-uptake of serotonin to the degree that occurred on the medication.
  • Dizziness: Feeling dizzy is one of the most common symptoms to experience during SSRI withdrawal.
  • Fatigue: It may be difficult to get out of bed in the morning or even make it through a work day. The tiredness and lethargy may be pretty severe.
  • Headaches: This is another classic symptom of SSRI withdrawal.
  • Insomnia
  • Irritability: This is because the brain no longer is receiving the calming effect of the drug and it can be difficult to regulate emotions.
  • Memory problems: It is common to experience memory problems to the point that you think you have lost your memory.
  • Mood swings:  They may persist for a long time, but will eventually subside.
  • Nausea: You may feel nauseated all day and in some cases, want to vomit.
  • Sleep changes: It is very likely that your sleep cycle will be affected when you withdraw from this drug.
  • Suicidal thoughts: It is very common to experience suicidal thoughts when discontinuing an antidepressant. Any SSRI that is withdrawn from is likely to lead a person to feeling suicidal.

If you have experienced anything similar with the NHS or you wish to help me and want to know how? Please fill in this form:


If you have an emergency due to your mental illness please be safe and contact Sane: http://www.sane.org.uk/what_we_do/support/

mental-illness-meme by charlotte farhan

Why is Severe Mental Illness left untreated in the NHS Mental Health Services

Art By Charlotte Farhan
Art By Charlotte Farhan

The mental health system in the UK which is provided by the NHS is failing people like me everyday; so lets see why?

Here is what the NHS have to say about accessing mental health services in the UK:

Mental health, emotional wellbeing and resilience is all about how we cope with what life throws at us. It concerns the way we feel about ourselves, conduct relationships, handle stress or deal with loss.

Good mental health and resilience are fundamental to good physical health, relationships, education and work, as well as being key to achieving our potential.

This is just an opening statement on the NHS website and already there are many issues:

  • The first sentence implies that mental illness is only from environmental factors around us such as “what life throws at us” and completely negates to say that mental illness can also be a neurological condition which is visible to us on MRI scans. So for people like myself who have C-PTSD, BPD and suffer from periods of psychosis or someone who has schizophrenia, bipolar-disorder, dissociative disorders and many more are left already feeling like this does not include us.
I Am Still Bleeding - By Charlotte Farhan
I Am Still Bleeding – By Charlotte Farhan
  • It goes on to say, that in order to maintain a good life: mental health, emotional wellbeing and resilience are paramount. When someone like me sees this, the complete lack of effort to include severe mental illness appears as if the NHS caters to an exclusive group which myself and others are not welcome in. Some mental illness is not “fixable” in that there is no cure and the assumption and misinformation is irresponsible and suggests that those with mental illness can be healed with a one size fits all solution.

 

 

  • For us with severe mental illness the world is very different , we do not have the privilege of those who suffer from situational depression and anxiety solely. The world expects and allows us as people to feel depressed after death, or anxious after a car crash and what ever else “life throws at you”.  This was not always the way, society has come leaps and bounds in the last 30 years to accept depression and anxiety in a mainstream way. This help is now widely available to the general public and society is more and more open to those who suffer from depression and anxiety as most people have had it or know someone who has. With celebrity faces, depictions in modern film, TV and literature as well as many charities and campaigns continuously running to educate the world about depression and anxiety, the world is still silent about those like myself still viewed as “crazy” or “psychotic”. Due to complex sever mental illness which are still only referenced in horror films, crime dramas, documentaries about “the criminally insane” murderers, news reports where “someone with a personality disorder has killed someone” or referenced as the go to insults for people displaying “weird” behaviours.
Art By Charlotte Farhan
Art By Charlotte Farhan

The NHS go on to say:

Less common conditions, such as psychosis, can make you experience changes in thinking and perception severe enough to significantly alter your experience of reality. These conditions include schizophrenia and affective psychosis, such as bipolar disorder, and can have the same lifelong impact as any long-term physical condition.

 

 

The issue here is that even within the severe mental illnesses there are some which will be focused on above so many others. With an over emphasis on  Bipolar disorder, schizophrenia and a general reference to psychosis. There is no mention of the most common of these disorders; C-PTSD or PTSD, there is no mention of personality disorders, dissociative disorders or to the disorders which have psychosis as a symptom. It is as if the world is not prepared to let go of the label “crazy” and still needs some of us to be under this stigmatising label so that we can be scapegoated as the deranged creatures of nightmares so that fingers can be pointed and there is a face to the monster.

This next paragraph from the NHS is misleading:

Mental illness is treatable and, with appropriate support and treatment, people do recover. Many move on with their lives and are able to care for their family, contribute to the local community, and get back into employment or training.

Vulnerability - By Charlotte Farhan
Vulnerability – By Charlotte Farhan

The sweeping statement that “mental illness is treatable” is an insult to many, it should instead read ” some mental illness can be treatable and severe mental illness is manageable with continued support and treatment”. This goes back to the generalised view that depression and anxiety are the only illnesses affecting the masses and that people can only have mental illness which is subject to your own psychological resilience.

Also some with severe mental illness like myself have symptoms from our illnesses which are depression and anxiety, so you will be offered in the NHS to have these treated rather than the severe illness which caused the symptoms of depression and anxiety. for example, I have C-PTSD, BPD and psychotic depression and due to these severe illnesses I have other illnesses which are symptoms of these, such as: GAD, agoraphobia, OCD, Adult ADHD and BDD.

And then lastly the NHS tell you what is needed but only provide one option in reality:

But this may not always be a straightforward journey. Many people only need a short course of psychological therapy or six months of medication, while others will need much more support and intensive treatment, be it medication or extended therapy.

The issue with this paragraph is again how the less complex and severe your illness is the more you are taken care of. Most people will only need a short course of medication and some focused counselling like 6 weeks of CBT if they suffer from anxiety and depression if caused by general life’s ups and downs, they may then need this again and it will be available to them throughout their lives.

Neurosis and Psychosis - By Charlotte Farhan
Neurosis and Psychosis – By Charlotte Farhan

However when it brushes us “the complex cases” under the carpet with the statement “while others will need much more support and treatment” this makes me very angry. As they imply they “the NHS” will provide this for us, but in fact this is NOT the case as all. You will be offered drug treatment of archaic psychotropic drugs, you will be offered short term therapy (6 weeks) and then once you have had this treatment you can not re-apply for treatment until after 6 months. So if you are not “cured” after 6 weeks, tough luck! Which as you have read is impossible for complex and severe mental illnesses.

There is no after care, the emergency lines (crisis support) they allow you to have whilst in treatment are then closed to you, (not that they answered when you were allowed to call them). Finally the pièce de résistance is that you will be told (like I have been told 3 times over the last 21 years) with no uncertain terms that “there is nothing we (the NHS) can do for you now, sorry”.

Agoraphobia - By Charlotte Farhan
Agoraphobia – By Charlotte Farhan

The devastation that is felt by people like me, who are unable to be part of society due to our mental illnesses due the stigma attached to us, is so overwhelming that in most cases it leads to a relapse and more often than not self-injury, suicide attempts or death. When this last happened to me last year, I suffered a further breakdown and relapse, this meant I did not take care of myself for over 6 months resulting in more ill health. If I did not have a husband who takes care of me when ill, I would have died. So what about all of those alone? What about my husband who has to deal with this on his own?

Now I ask you, is the mental health system working effectively?

Source: http://www.nhs.uk/NHSEngland/AboutNHSservices/mental-health-services-explained/Pages/accessing%20services.aspx#

Next time I shall be sharing my timeline of treatment within the NHS from age eleven to now. So follow my blog to keep up to date on my future posts.

 

My colleague from ART SAVES LIVES INTERNATIONAL and dear friend Jade Bryant is also exploring the NHS and its failings within the Mental Health System, please follow this link to read more and get involved by sharing your stories.

Attitudes Of The Mental Health System – By Jade Bryant 

 

Find more art from Jade; HERE

This is the beginning stages of a campaign which ASLI (our non -profit) will be running in the near future. We hope to elevate our voices and others and then we hope to take this to the government; to bring about change as well as running workshops and programs which will aim to engage better understanding within communities, so that people like myself and Jade and so many others can be included properly in society which will inturn help us with our mental health.

Thank you for your time.

Pain and Detachment - By Charlotte Farhan
Pain and Detachment – By Charlotte Farhan

If you have anything to say on this subject, or your own story please get in touch via this contact form: