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

Open Letter: To The Mental Health Services England (NHS)

Dear Mental Health Services England (NHS)

I am writing to you as I have lost the will to fight for my life and am using my last amount of strength to share my desperate situation with you.

I suffer from: complex post traumatic stress disorder, borderline personality disorder, psychotic depression, generalised anxiety disorder, agoraphobia, obsessive compulsive disorder, body dysmorphic disorder, adult attention deficit disorder, diabetes, polycystic ovarian syndrome, arthritis and chronic erythema nodosum.  

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 can not get to.

 

screenshot-100

screenshot-101

 

Due to my conditions (which my surgery is well aware of as I have been in the mental health services since I was 12) I am unable to leave the house on my own (I have not done so for 10 years), a lot of the time I can not leave the house at all, I can not use the phone to call out or receive calls due to my disorders, my husband is my only family and he works during my GP’s surgery hours for appointments and telephone calls. When accompanied outside by a safe person,  I can not order my own food, ask strangers for help or cross the road on my own. As well as this I experience sensory overload when outside, loud noises cause me physical pain, I am on high alert and most of the time can only deal with basic communication.

I have been told that people with mental illness can not qualify as being housebound, even though my conditions cause me to be this way, I was told there is nothing that can be done!

I do NOT accept this!

I need the Solent NHS Trust to help me so I can have the same human rights to care as others
.
I need a support worker to take me to all my medical appointments as well as the need for home visits from my GP for when I am unable to leave the house at all.

Since this happened I have been unable to continue my diabetic treatments, clinics and check ups as my surgery will not do home visits and all blood test clinics are in the morning when my husband is not available. So my diabetes could be getting worse I would have no way of knowing, until too late.

I am also unable to have fertility treatment as I am unable to get the help I need to qualify as I have PCOS and am now infertile.

I have something called chronic erythema nodosum which needs to be checked often to make sure I do not have any other illnesses associated with it.

I have arthritis and it is getting worse I need help as sometimes I can not move due to the sever pain in my ankles, knees and wrists, I now have a walking cane.

As for my mental health, well this is the area I have been failed in since I was first in the adolescent mental health services at 12. I have endured mistreatment from many practitioners, including victim blaming, sexual assault in a psychiatric facility at 15, by two male in patients, I have been told I am “too intelligent” to receive care, “too high functioning” and I have been stigmatised for having borderline personality disorder by many practitioners who have deemed me manipulative or attention seeking, when in fact I was in crisis. I have been left with no help or they have tried to section me, there is no in between. I was put on anti-psychotics at 15 years old and was like a zombie for most of my late teens and early twenties. I have been offered treatments which I can not get to, or things which would cause my other conditions to be triggered. I have had no treatment for my C-PTSD except for a un-completed 6 week session of reliving therapy (as my therapist left) which has left me open and more unwell than before, causing my psychotic depression to flair up and experience psychosis regularly. I was put on anti-anxiety medication as I have so many anxiety disorders and then due to not being able to be seen by a GP, the surgery put my medication up for review even though I could not attend an appointment, which meant my medication was stopped abruptly, giving me side affects to withdrawal – which has left me in constant fight or flight and suicidal. These conditions are chronic and serious and cause me to lead a very limited life.

I only have this energy because I decided to give this one last go – one last fight – before I give up. My husband has to deal with this on his own, he is terrified of what will happen to me, where is his support also?

I have been a victim to so much in my life, I suffered neglect and child abuse, a violent rape at 15, and being sexually assaulted by two male in-patients on separate occasions within the NHS Woodside psychiatric adolescent unit in Epsom in 1999 and these are just the worst events, I have suffered much more. But I survived these ordeals even though I am affected by them every day, especially living with C-PTSD, however I survived, all I ask is the chance to live, to have basic human rights, that the duty of care you have is observed when treating me and that I am not left to die!

I also know I am not alone, there are so many of us that are being failed and left to die, you don’t hear them because they have no voice, I also stand for them as I too have been silenced by this ableism, this marginalisation, this stigma and appalling treatment. The only reason I am able to fight is because I have a platform, so I am screaming as loud as I can with the hope you will hear me and help me, and furthermore with the hope you do not continue this lack of care with others, even though I am sure this will not change anything, maybe it will break the silence.

“…if you are ill or injured, there will be a national health service there to help; and access to it will be based on need and need alone – not on your ability to pay, or on who your GP happens to be or on where you live.” – The New NHS: Modern, Dependable – Government White Paper, December 1997.

“If the right to health is considered as a fundamental human right, significant differences in access to health care and the health status of individuals must be seen as violations of the principle of equality” – Implications of a Right to Health – Virginia A. Leary, 1993.

For more information: The Human Rights Act 1998 and Access to NHS Treatments and Services: A Practical Guide


HERE IS HOW YOU CAN HELP ME!

  • Firstly share this open letter with anyone and everyone.
  • I need the Solent NHS Trust to help me so I can have the same human rights to care as others. So here is what I need – send them this open letter:
  • Or email them: communications@solent.nhs.uk
  • Someone will be creating a petition for me too, so I shall add this to the post when it is up and running.
  • I am also writing an official complaint to the NHS.
  • If you have a similar story to this or have anything you wish to add, I would love to hear from you, please fill in this form:


I am running out of steam, I am using every last bit of energy I have to fight for my life, this is the best I could do and is not a comprehensive detailed reflection of the abuse, stigma and human rights violations I have suffered from the NHS as a whole.
All I ask is you HEAR ME, BELIEVE ME and do this for me, for us.
Thank you xxxxx

 

Charlotte Farhan - Open letter to NHS