Disclaimer: The Public Interest Disclosures Act 1998 ‘protects workers from detrimental treatment or victimisation from their employer if, in the public interest, they blow the whistle on wrongdoing.’[1] Whilst I am not an NHS worker, I am naming the NHS Trusts that have been involved in my case because I believe that this story is of public interest. My story has involved 19 NHS trusts in the UK, who have failed to diagnose and treat my condition over a 12-year period. The total number of trusts includes 16 NHS trusts regarding my facial pain and 3 mental health trusts. This has been a miscarriage of justice. I do not want this to happen to anyone else. I am naming the NHS bodies with the intention not to slander or be defamatory but because I want to promote better care for others and because I want to see a move towards real patient safety.

The NHS Trusts

MY NHS Number; 439 021 8999

Complaint; Undiagnosed acute left-sided facial, periocular, ear and head pain.

Calderdale and Huddersfield NHS Foundation Trust

The Calderdale Royal Hospital

July, 2013; Ophthalmology

Initial Diagnosis of my condition was Orbital Cellulitis. It was triggered by a flea bite to lower left eyelid. I had raised WBC, neutrophils and I quickly developed connected pain and swelling around my left eye and cheek.

Bradford Teaching Hospitals NHS Trust

Bradford Royal Infirmary

August, 2013; Accident & Emergency; Ophthalmology

I saw an ophthalmologist re my acute orbital pain, who thought it was blepharitis. She prescribed me Maxitrol Steroid eyedrops, which treat eyeball inflammation. I had a severe reaction to these eye drops. My condition significantly worsened after using them. The pain and swelling around my cheek and eye began to involve the left side of my head.

Leeds Teaching Hospitals NHS Trust

St James’s University Hospital

2^nd December 2013 – 28^th January, 2014; Ophthalmology

I saw an ocular plastic surgeon, who I consulted with twice in January 2014. He did a Lyme disease test, which was negative, and an MRI scan of my orbits, which he said was normal.

The ophthalmologist did two blood tests that showed raised infection markers, neutrophils, and ESR. He said that clinical ‘evidence points to an infection as the likely cause, likely Staphylococcus aureus.’ He tried oral doxycycline, which didn’t work. The ocular plastic surgeon then  admitted me for 48 hours of intravenous antibiotics on 24th January discharged me on 28th January, 2014.

During the time that I was on the infection control ward, a microbiologist administered IV Ciprofloxacin and oral Linezolid (600 mg), which treats complex soft tissue infections. The microbiologist said to me that he would work with me for 6 months until ‘we found the right antibiotic.’

However, at the end of 48 hours, the consultant threw me off the ward. The ophthalmologist did not do a blood test before he discharged me to see if my neutrophils and ESR had normalised. He gave me one week’s worth of oral antibiotics. He then wrote to my then GP and told them to prescribe no more antibiotics. St. James’ Hospital and my then GP stopped all of my antibiotic medication. They did no blood tests first to check that my infection markers had normalised after the 48 hour IV treatment, before they did they terminated my medication..

Case To Answer

The consultant admitted me for 48 hours of IV antibiotics because of clinical evidence that I had an infection. Why on earth did the consultant not do a blood test to check that my neutrophils and WBC had normalised before he told my GP to stop my antibiotics?

York and Scarborough Teaching Hospitals

York Hospital

January 28th, 2014; Ophthalmology.

After St. James University Hospital kicked me off the ward, the consultant sent me to see his colleague, an ophthalmologist at York Hospital. I had one appointment at York Hospital. The consultant did no blood tests either to see if my infection markers had normalised following the 48-hour IV antibiotic treatment. He also wrote to my GP to order that my antibiotics be stopped. My treatment and care ceased in February 2014.

Spire Harpenden Hospital (Private)

5^th Feb, 2014 – 12^th March, 2014; Ophthalmology

I became very ill with nausea, chills, and a stiff neck after my then GP and hospital stopped my medication. The doors to NHS healthcare were closed in Yorkshire. I went to London to seek private medical help. Luckily, I found an oculoplastic surgeon at Spire, Harpenden. He was a lovely guy! He did a biopsy of my eyelid. My tissue histology came back chronically inflamed. The surgeon referred to me a professor of ophthalmology at St. Thomas’ Hospital, who specialised in inflammation of the eye. He also referred me to a physician at London Bridge Hospital. This surgeon thought that I had a systemic problem, which needed input from a physician. He thought this because my blood tests kept showing multiple abnormalities and raised markers.

HCA Healthcare (Private).

The London Lupus & Rheumatology Centre

2^nd May, 2014- 2^nd November, 2016; Rheumatology

I saw a physician at The London Lupus Centre for two years: 2nd May 2014–2nd November 2016. He was a fabulous guy, too! He was an intelligent physician who stabilised my condition.  listened to me, and he believed me. On my first appointment with him, he did a series of blood tests. My neutrophils, WBC, haemoglobin count, and ESR were still raised. I had not had any medication since January 2014. That was five months! I remember shivering and throwing up in the flowerpot outside the hospital before my first appointment. I had awful chills washing up and down my left jaw area. The physician treated me empirically, with ongoing antibiotics, and monitored my bloods fortnightly. I felt much better systemically, but when I came off the antibiotics, my pain returned.

His opinion was that the infection had damaged my lymphatic drainage in my face, which is why the antibiotics only partially worked. He thought that I may have lymphoedema or angioedema. In 2015, the pain around my masseter/parotid area became severe. I could not open my mouth. The physician suspected that there was an obstruction in my parotid gland. He referred me to a well-known oral maxillofacial surgeon internally at London Bridge Hospital.

The Parliamentary Health Service Ombudsman

I tried to recover my treatment costs at London Bridge Hospital from Leeds Teaching Hospital and York Hospital, who stopped my treatment, but the PHSO did not uphold my complaint. The PHSO said I ‘chose to go to London.’ They ignored my MP’s statement, who I saw at the Houses of Parliament in February 2014. I went to him for help after St James’ Hospital kicked me off the ward. He phoned my then GP. The GP practice told my MP that they would refer me to another consultant if I found one in London and if they agreed with their diagnosis. I did not choose to go to London. The healthcare services had closed the doors to my medical treatment in Yorkshire.

London Bridge Hospital

July 2015 – 18^th May, 2017; Oral Maxillofacial surgery

I saw a notable oral maxillofacial surgeon in July 2015 who agreed to see me on the NHS. He referred me to himself at the salivary gland unit at Guys Hospital for investigations of my parotid gland. He asked his clinic to do a sialogram to look for obstruction in my parotid gland. Guy’s Hospital is the national centre of excellence for salivary gland disease.

I saw him again after Guys Hospital prematurely discharged me. I saw him on 13/04/17, 20/04/17, and 18/05/17. There are serious questions about this surgeon’s transparency both in the NHS and privately.

Guy’s and St Thomas’ NHS Foundation Trust

Guy’s Hospital

27^th January 2016 – 8^th February 2017; Oral Maxillofacial surgery

27th January, 2016; I saw the surgeon, who I had consulted with at London Bridge Hospital in 2015. He did a sialogram, which showed obstruction in my salivary gland. They washed the obstruction away. He said at my consultation, ‘We found some obstruction, but it has all gone now.’ He discharged me, but he did not tell my referring physician at London Bridge Hospital that he found obstruction. The surgeon’s clinic letter from that date makes no mention of it. I had relief of my symptoms for four days after this sialogram, but my symptoms returned after a week. My rheumatologist at London Bridge Hospital referred me back to see the oral maxillofacial surgeon, who I saw again privately. He referred me back to Guys’ Salivary Gland Unit on the NHS. In June 2016, I had my second appointment at the salivary gland unit. Blood tests showed raised infection markers, neutrophils, and haemoglobin count. An ultrasound showed mucous plugging in my gland, a thickening of saliva. The consultant referred me for a sialendoscopy, which is an in-depth washout of my gland.

Sialendoscopies

In December 2016, a registrar did the sialendoscopy. When she entered the endoscope into my duct, we both saw on the screen big clumps of white at the top of my parotid duct. She said, ‘It is pretty clogged up in there. I am going to put you forward for washouts every six weeks.’ She referred me for regular washouts every six weeks. On 31st January, 2017, I returned for another sialendoscopy with the lead dental radiologist and her assistant. They did an in-depth sialendoscopy and poured steroid drops down my parotid duct to treat the inflammation. I got huge relief from this procedure, but it was only temporary. I remember being so grateful for their treatment that I left a card for them at the clinic both saying, Thank you. On 8th February, 2017, I saw the oral maxillofacial consultant one week later. She said that she was discharging me. She said that the lead dental radiologist, who had done the sialendoscopy, had reported that ‘everything was normal’ from the sialendoscopy in January 2017. It didn’t add up when the sialendoscopy from December 2016 had been abnormal, and the registrar who did that procedure had referred me for ongoing washouts every six weeks. Something wasn’t adding up. I suspected that the dental radiologist had not been honest about the clinical findings from my sialendoscopy.

My Complaint

July 2017: I complained to Guy’s & St. Thomas’ NHS Trusts about them promising me ongoing glandular washouts and then discharging me. August 2017: The lead dental radiologist called me for another procedure. There were four registrars in the procedure room. During the ultrasound of my parotid gland, I heard the registrar say to the dental radiologist, ‘You are not freezing the images.’ It was at that consultation that the lead dental radiologist admitted to me that my parotid gland was not working properly, which revealed that she had not been honest about the clinical findings in January 2017. If everything had been ‘normal’ with my parotid gland function in January 2017, why did the pathologist find an abnormality in my parotid gland tissue in 2018? (See incident 1 in the blog post; This is a Cover-Up). I do not believe that the lead dental radiologist was transparent about the clinical findings from January 2017.

St Thomas’ Hospital

30^th June 2014 – 2^nd November 2015; Ophthalmology

I had three appointments with a professor of ophthalmology at St. Thomas’ Hospital. This clinician diagnosed my left ptosis. He told me that the levitator on my left eyelid had collapsed and needed corrective surgery. The clinician said he couldn’t correct my ptosis until all of my symptoms had abated for six months. He said that the pain around my eye and cheek was a problem with the soft tissue. However, he did not act on that knowledge. He did nothing and discharged me when I still had severe periocular pain, saying, ‘I have not much to offer at this stage.’ He told my GP to refer me back for ptosis surgery once my symptoms had abated.

October 13^th 2016; Infectious Diseases.

I saw an infectious diseases consultant once. He retested me for Lyme disease, which came back negative again. This consultant did other blood tests that showed raised infection markers and neutrophils, but he did not act on the findings. Instead, he said that I needed to see a ‘chronic fatigue specialist,’ which had no relevance to my facial pain symptoms or the haematology findings. I never saw him again. He was unpleasant with me.

Why?

Guy’s & St. Thomas’ NHS trust have a serious case to answer. All three departments—ophthalmology, oral maxillofacial surgery, and infectious diseases—found an abnormality, so why did they not deal with this back in 2016? Why did they all discharge me from their care? If my parotid gland was ‘normal’ in 2017, why did the histology from my parotid gland surgery show an abnormality one year later in 2018? It doesn’t add up.

Pennine Acute Hospitals NHS Trust

North Manchester General Hospital

6^th September 2017 – 9^th May, 2018; Oral Maxillofacial surgery

My then GP referred me to an oral maxillofacial surgeon at NMG, who I saw on 6th September, 2017. He agreed to do a superficial parotidectomy (the removal of the superficial lobe of my parotid gland), but he did not do a scan first. I signed a disclaimer before surgery to say that I may still have symptoms with my deep lobe after surgery. The surgeon said that he was not removing all of my parotid gland because of the risk of permanent facial nerve damage. I also accepted the risk of facial nerve damage, which is common with parotid gland surgery because of the positioning of the seventh cranial nerve. The oral maxillofacial surgeon operated blind in April, 2018. I came through surgery with severe facial nerve palsy, which recovered in four months. The histology showed; dense secretions in the ducts, numerous calcifications, reactive lymph nodes. Parenchyma; sialolithiasis. The photos below show my facial nerve damage after surgery. I recovered full facial function in 4 months.

No Scan or Culture

The surgeon left me with a difficult predicament. A surgeon who I saw in Los Angeles confirmed in July 2019 that there was still 70% of my parotid gland remaining. The scan report from Los Angeles reported that some of the superficial lobe, the deep lobe, and some accessory tissue over the masseter muscle remain. The surgeon left a lot of my gland in! The surgeon did not cut and tie up the duct either. My parotid duct, which was thinned, was therefore still connected to the remaining portion of my parotid gland. I still experienced pain because of this. I did ask the surgeon why he did not cut and tie up my parotid duct. He said that ‘he couldn’t see it during surgery.’ Whilst I had a reduction of pain following surgery, because so much of the gland remained, I still had a lot of pain in the parotid area. I could not find a surgeon to remove the rest of it because of the risk of further facial paralysis. This was a tough predicament that the surgeon left me in. Another grievance is that the surgeon did not culture my parotid gland tissue. He knew that I had an infection in there because he diagnosed me with recurrent infections in the parotid gland. If he had cultured my tissue, we may have established what bacteria is causing this.

A Missed Opportunity

28^th September, 2018; Infectious Diseases

I saw an infectious diseases consultant one time at The North Manchester General. This was a missed opportunity. This hospital had my parotid tissue in their laboratory. I asked the ID consultant if they would culture my tissue to find out what bacteria could be causing this problem. He refused. This is such a shame. If the hospital had cultured my parotid tissue, I could have found the potential bacteria that is responsible for my suspected infection. He did not answer any of my questions about the ongoing antibiotics that I take. I wanted to know why the antibiotics relieved my symptoms in part when I took them, and then my symptoms returned when I came off them. However, he discharged me after one appointment with no offer of help or any answers. This guy could have done much more for me. He could have cultured my gland and tested me for Bartonella infection and other rare infectious diseases.

Case To Answer

If the surgeon had done a scan before he performed surgery, he would have seen that there was an abnormality in the entire parotid gland. If he was not confident enough to remove my entire salivary gland, he could have referred me to a surgeon who was. Why did he not do a scan first, and why did this NHS trust refuse to culture my parotid gland tissue? He knew that there was an infection in there, so why did he or his ID colleague not culture my tissue to find out what the bacteria was?

Sheffield Teaching Hospitals NHS Foundation Trust

Charles Clifford Dental Hospital

3^rd Jan, 2019; Oral and Maxillofacial surgery Regional Unit.

I had one appointment regarding the pain in my remaining parotid gland. The surgeon examined my face and said that it is possible that there is some diseased glandular tissue left, causing the pain. He thought that my left masseter muscle was causing some of the problem, too. This consultant said that removing the rest of my parotid gland was too risky because of the potential risk of further facial paralysis. He prescribed hyoscine patches. You apply these to the skin, and they reduce salivary flow, but they were ineffective. He also told me to apply ibuprofen gel to the area where I am in pain. This was ineffective, also.

Lancashire Teaching Hospitals NHS Trust

Royal Preston Hospital

5^th Feb, 2019; Oral Maxillofacial surgery

I had one appointment with a registrar, who could not help. He referred me on to an oral maxillofacial surgeon at Chorley Hospital.

Chorley and South Ribble District General Hospital

13^th Feb, 2019; Oral Maxillofacial Surgery

This surgeon said he no longer does salivary gland surgery, and he referred me to another head and neck surgeon, internally at Chorley Hospital.

29^th April, 2019; Ear Nose & Throat, Head & Neck services.

I had one appointment with a head & neck surgeon. He did no investigations and said that he could not remove the rest of my parotid gland because the risk of further facial paralysis was too high. He gave me no answers about any of my symptoms and referred me to Head and Neck Services at Manchester Royal Infirmary. I did not see the surgeon at Manchester Royal Infirmary until October 2019. It was a long wait to see him.

Imperial College Healthcare NHS Trust

Charing Cross Hospital

23^rd May, 2019; Ear, Nose and Throat. Head and Neck services.

Something untoward definitely happened at Charing Cross Hospital. I saw a head and neck surgeon on 23rd May, 2019. He did four scans: MRI Neck, MRI Brain, CT Neck, and neck ultrasound. There was a serious gaslighting incident with this surgeon that I recount in incident 1 in Medical Gaslighting #1. After I had had the four scans, I was in the surgeon’s office. I was sitting behind him, and he had all of my radiology images up on his screen. He enlarged one radiology image. There were huge white globules on the left side of my face. I politely asked the surgeon if that was calcified tissue. I asked him this because they found calcifications in my parotid tissue in 2018. He said ‘no’ and turned off his computer. ‘Your pain is psychological,’ he said. ‘You need to see a pain psychologist.’ His insolence and rudeness were impossible to tolerate, so I walked out.

My Missing Scan

I requested the four scans from Imperial College Healthcare Trust. I received the CD disc with my radiology images on it. When I opened the CD disc on my computer, I saw that there was no file icon next to the MRI neck scan. When I clicked on the MRI neck scan, an orange sign came up that said, ‘error decoding image.’ I looked through the other three scans, and I could not see the image that I saw on the surgeon’s screen of the white globules on my face.

I phoned the NHS trust and asked why the MRI neck scan had no file icon and was not there. They told me that they had merged the MRI brain and MRI neck scan images. I think they did do this, but I think that in the process of the ‘merging,’ they deleted some of the radiology images that showed abnormality. There was no reason to merge them like that. I am certain that if anyone conducted an audit trail of my radiology records from Charing Cross Hospital, they would find that they did delete some of my radiology images. This remains an unresolved issue. It needs investigating.

Liverpool University Hospitals NHS Foundation Trust

Aintree University Hospital

October, 2019; Head and Neck Services

My GP referred me to the oral maxillofacial department at Aintree Hospital. However, the department refused my GP’s referral without giving a reason why. I spoke to them on the phone, and they said, ‘There’s a lot going on behind the scenes that you don’t know about. We’ve been speaking to all of the surgeons who you have seen, and we don’t feel that there is a reason to review you.’ This is when I fell into a mental health crisis. The strain of trying to get medical help for my facial pain and being knocked back by NHS trusts like this was too much. This refused GP referral was the trigger for me falling into a mental health crisis.

Manchester University NHS Foundation Trust

Manchester Royal Infirmary

11 May, 2018 – 29^th June, 2018; Ophthalmology, Ocular plastic clinic

I saw an ocular plastic surgeon regarding my acute periocular pain two times. She gave me no diagnosis or treatment for my periocular pain. She discharged me after two appointments. They did give me some reading glasses for my blurred vision, which resulted from my post-surgery paralysis. She did refer back to The North Manchester General Hospital, to the Infectious Diseases department. It was this ophthalmologist who asked them to culture and do more tests on my parotid gland tissue, but ID at NMG refused.

25^th September, 2018; Oral Maxillofacial surgery

I saw an oral maxillofacial surgeon regarding facial pain and post-surgery paralysis. He offered me no help regarding my facial pain, particularly the pain in my remaining parotid gland. He told me to go back to the salivary unit at Guys Hospital for a further sialogram because they ‘have the history on record.’

20^th August 2019; Ear, Nose and Throat, Head and Neck services.

Following the referral from Chorley Hospital in April 2019, I saw a surgeon at Head and Neck services. He offered me Botox injections for my facial pain. I refused the Botox injections because with no diagnosis, we do not know what we are treating, and it could make my symptoms worse. I explain this in blog post; No to Botulinum Toxin. After the obstacles I faced in England with consultants who were refusing to either see me or help me, I moved up to Scotland in January 2020 to see if I would have a better chance up there getting a resolution to my facial pain.

Fife Health and Social Care Partnership

Victoria Hospital

Nov 2020 – Jan 2021; Ear, Nose and Throat, Head and Neck services

I saw a head and neck surgeon for two appointments; once in November 2020 and once in January 2021. He did an MRI scan, which showed a left-sided enlarged masseter muscle. He referred me to head and neck tertiary services at NHS Lothian for specialist intervention.

November & December 2021; Infectious Diseases

I saw an Infectious Disease consultant. He did two blood tests in November and December 2021. They both showed abnormal/raised infection markers (neutrophils and WBC). He took no action and discharged me with abnormal blood results.

I asked the ID consultant if he would admit me for intravenous antibiotics, which I have been requesting for many years. He said no. He said in order for him to administer IV antibiotics, he would need Head and Neck services to remove the rest of my parotid gland and to culture the tissue. Once cultured, if they found the bacteria causing this, then he would administer IV antibiotics. He also said that when the surgeon removed my superficial lobe in 2018, they should have cultured the tissue to identify the bacteria causing this.

1^st September, 2021; Pain Management

The surgeon, who I later saw at NHS Lothian (see below), referred me to the NHS Fife pain management service. The Fife Pain Management service refused to see me because ‘I was not suitable for their service.’ The question remains why pain management refused to even see me and why infectious diseases discharged me when they found raised infection markers.

NHS Lothian

The Royal Infirmary of Edinburgh

July-October 2021; Head and Neck Services, (ENT.)

My experience at NHS Lothian was the worst out of all the NHS trusts where I have been. This was absolutely horrific. It caused me enormous anxiety and distress. My experience at NHS Lothian was connected to what happened with the mental health services in Fife and a letter that a psychiatrist wrote, which said that I am making up my facial pain to feed the need ‘to have a sick role.’ I saw a head and neck surgeon in July 2020. I had one consultation with him. The surgeon said he would do some scans and get me back to ‘find a way forward.’ I had an MRI neck and CT neck scan in July 2020. I did not hear from the surgeon again. After I had the CT neck and bone scans done, he ghosted me for 18 weeks. I wrote to him three times asking for a follow-up consultation to explain the scans. He did not reply to any of my letters and did not discuss the scans with me. I have had outstanding questions about these images for 3 years. My visible facial asymmetry remains unexplained.

Duty of Candour?

The surgeon did refer me to Infectious Diseases in Fife, who discharged me after two appointments, and to Pain Management, who refused to see me. I complained to NHS Lothian about the fact the surgeon refused to give me a follow-up consultation. Their response was a terrible breach of the professional duty of candour. NHS Lothian said in their response to me that I needed to go to Fife Pain Management, but they knew that Fife Pain Management had refused to see me, as NHS Fife wrote back to the referring surgeon to tell them they had rejected his referral. NHS Lothian closed my case in October 2021 and left me with no care. They signposted me down a dead end, which they knew was a dead end. The surgeon who I saw at NHS Lothian was the surgeon who made the discriminatory comment about me on the request form to the radiologist: ‘be careful with this one. Patient has significant psychiatric problems.’ Disgusting!

Case To Answer

Why did the consultant refuse me a follow-up consultation, and why did he ghost me for 18 weeks—why? Why did you give me no answers about the facial asymmetry in my CT scans, and why did no one catch the obscene comment that the surgeon made about me in his request to the radiologist? Someone in management should have caught that. Your treatment of me was appalling. Why? And why did you tell me in your response to my complaint to go to the NHS Fife Pain Management service when you knew they had refused to see me? Where was your duty of candour?

Ross Hall Hospital, Glasgow, (Private).

December, 2021; Oral Maxillofacial surgery.

Because the surgeon at NHS Lothian refused to see me for a follow-up consultation, I went to see an oral maxillofacial surgeon privately to get answers about the CT scan images that were done at NHS Lothian. I got no answers. There was a serious gaslighting incident with this surgeon, (see incident 2 in Medical Gaslighting #1.) He told me that my face was my spine in the radiology images below.

South Tees Hospitals NHS Foundation Trust

The James Cook University Hospital

April, 2022; Infectious Diseases.

I saw an infectious diseases consultant once. He did not answer my questions about why the oral antibiotics that I take subdue pain when I am on them, but why my pain returns when I come off them. He rudely said that the therapeutic effect that I get from the oral antibiotics was a ‘placebo effect.’ I took it to mean that he thought that I was imagining that the antibiotics helped me. I was not imagining anything. They do subdue my pain. The consultant said that he would only help if ENT thought that infection was the cause of my pain. He did no blood tests or investigations and discharged me after one appointment.

July, 2022; Oral Maxillofacial surgery

I saw an oral maxillofacial surgeon once. There was a serious gaslighting incident with this surgeon (incident 3 Medical Gaslighting #2). I asked him about my facial asymmetry in the CT scans that NHS Lothian did. He said, ‘Your head was lopsided in the scanner.’ He did not see me go into the scanner. I had the CT scans done in Scotland, and he was in Middlesbrough. Does he have X-ray vision from a distance? My face was not lopsided. I went into the scanner with my head in a head cage for God’s sake! He also rudely told me to ‘stop shopping around and live with the pain.’

Discharged Again!

The surgeon did agree to do an MRI scan of my brain and my parotid gland. Two weeks later, however, he wrote to me to say that he had cancelled the scans and discharged me. He said that oral maxillofacial surgery at York needed to deal with the problem because they found the abnormality on the scan (see below). I wrote to him to explain that oral maxillofacial surgery at York Hospital had refused my GP’s referral in April 2022, but he insisted that they had to see me.

November, 2022; Ear, Nose and Throat

I saw an ear, nose, and throat consultant (ENT) once regarding my left-sided ear pain. The consultant looked in my ear with an otoscope, said everything was ‘normal’ in my ear. He said  I needed to see oral maxillofacial surgery at York Hospital. This clinician thought that my ear pain was referred pain from my parotid gland. He wrote to York Hospital. He discharged me after one appointment.

Nuffield York, (Private).

My Hospital Number; T30403626 Nuffield.

June 2022; Ear, Nose and Throat, Head and Neck Services.

I saw a head and neck surgeon, who looked at CT scans that NHS Lothian did. He said that he ‘could definitely see the asymmetry in my face,’ and that he wanted to ‘get to the bottom of what was causing my facial pain.’ He agreed to see me on the NHS at York Hospital to do further imaging so that he could compare new scans to the ones that NHS Lothian did in 2020.

York and Scarborough Teaching Hospital

York Hospital

July 2022 – September 2022; Ear, Nose and Throat, Head and Neck.

I saw the head and neck surgeon, who I had consulted with privately at Nuffield York in July 2022. The surgeon sent me for an MRI neck scan and a head CT scan. One month later, he wrote to say that the MRI scan had shown an abnormality in the left buccal fat pad area. He said that the oral maxillofacial surgery team needed to deal with it, not ENT. However, the oral maxillofacial team at York Hospital refused my GP’s referral in April 2022 because my ‘case was too complex.’ The ENT surgeon sent my case up to James Cook Hospital. James Cook Hospital sent it back to him and said it needed to be dealt with at York Hospital because they found the abnormality. My case was passed back and forth between York Hospital and James Cook Hospital. Neither hospital wanted to deal with it. It was a game of tennis. I saw the same ENT consultant again on 15th September, 2022, regarding the pain that I have had around the left side of my head and in my left ear.

However, he refused to help me. The consultant said that the oral maxillofacial surgery team needed to deal with it because the problem involves my temporal region. He thought that my head and ear pain was pain that was referred from the parotid/buccal area. My GP wrote to him again about my worsening head pain. The surgeon replied to my GP and told him to refer me to a skull-based otolaryngologist at Leeds Hospital. This surgeon abdicated from taking any responsibility for the abnormality that he found. He should have dealt with it.

York Hospital, Ophthalmology

October, 2022; Ophthalmology

I saw an ophthalmologist regarding my eye pain. It was strange returning to the department as I saw this team in 2014, after St James’ Teaching Hospital kicked me off the ward. They still had my notes from this time, though the consultant who I saw this time was a different guy from the one who I consulted with in 2014. The consultant was shocked to see me again. He was defensive and would not answer any of my questions about the scans. When I showed him the radiology images of my left eye, he dismissed it as being the ‘angle of the scan.’ He did, however, say something poignant about my eye pain. He said, ‘The issue is with the tissue.’ This indicated that he knew I had a problem with the soft tissue around my left eye. He gave me no answers, help, or treatment. He did say that the abnormality found in my buccal fat pad area needed to be followed up, and he wrote to oral maxillofacial surgery to ask them to see me.

Medical Gaslighting

April 2022 & February 23rd, 2023; Oral Maxillofacial surgery

Oral maxillofacial surgery at York hospital finally agreed to see me, having rejected my GP’s referral in April 2022. My appointment with him was on February 23^rd, 2023. This appointment was horrific. A serious gaslighting incident occurred, (see incident 4 in; Medical Gaslighting #2.) I asked the surgeon about the abnormality that they found from my MRI scan. He told me that the abnormality that they found was caused by a tooth of mine. It was not to do with a tooth. I showed the surgeon my MRI radiology images that I had on my iPad. I asked him to explain them. ‘That’s just coincidence. You are choosing to see it,’ he said. The surgeon said that to me about the radiology images below. He brought my radiology images up on his screen. He started to Photoshop the images so that you couldn’t see the abnormality anymore. ‘Look, the abnormality has gone,’ he said. He then proceeded to Photoshop the images again, so that the abnormality showed on my right side. ‘Look, I can make it show on your right side. It’s just the angle of the scan.’ It was like sitting next to Paul Daniels, not a surgeon. I showed him the CT images from NHS Lothian on my iPad and asked him about my facial asymmetry in the images. ‘The quality of your iPad is s**t,’ he said. The surgeon said that about the radiology images below.

Case To Answer

He proceeded to tell me that all of my CT images are ‘squint images.’ He told me that my MRI images were ‘coronal view and that the scans were not accurate. This made no sense. I tried to question him. ‘The data is still here,’ he said. He had sheepish eyes when he said this. I did not return to see this surgeon for the follow-up appointment that he arranged. Two hours with him playing ‘now you see it, now you don’t’ was too distressing. The experience messed with my head. I came out of the appointment distressed and questioning my own sanity.

No one at York Hospital explained the abnormal MRI neck scan that they found in July 2022. I have been to three departments there: ophthalmology, ENT, and oral maxillofacial surgery. The main issue is why they sent my abnormal scan up to James Cook Hospital to deal with instead of dealing with it themselves. When York Hospital finally allowed me to see an oral maxillofacial surgeon, he gaslighted me and told me that I was imagining the abnormality. They found an abnormality on my MRI scan in July 2022. Why did they not explain to me what it was and act on it right away?

The End Of The Road

It was after the last appointment with oral maxillofacial surgery at York Hospital on 23rd February, 2023, that I decided to walk away from any further consultations. The abuse and bullying from these consultants were putting my mental health in too great a jeopardy. I wrote to the practice manager at my GP practice and explained that because of the impact these consultations were having on my mental health, I would not be attending the follow-up appointments at York Hospital with oral maxillofacial and ophthalmology. I decided to stop attending appointments with medical consultants and to write my blog and network on social media, to try and find medical help that way instead.

Leeds Teaching Hospital NHS Trust

Leeds Dental Institute

24^th June, 2022; Oral Maxillofacial surgery

Refused GP Referral: No Reason Given

After oral maxillofacial surgery at York Hospital refused my GP’s referral in April 2022, they told my GP to reroute the referral to a named specialist at Leeds Teaching Hospital. My GP sent the referral to Leeds Teaching Hospital, but they discharged me without seeing me. They refused to give me an appointment. They closed my case down and did not even send a letter to my GP, informing him of the rejected referral. I found out when I phoned them.

Mental Health Trusts

South West Yorkshire Mental Health Trust

Oct 2019- Jan 2020; Crisis Team

Due to the strain of all this, I fell into a serious mental health crisis in October, 2019, when I began to experience chronic suicidal ideation. I was under the care of the crisis team at South West Yorkshire Foundation NHS Trust from October 2019 to January 2020. I have documented the incidents that occurred with this mental health trust in my previous blog post: On mental health crisis #2. Their treatment of me was punitive.

The Letter!

Fife Health and Social Care Partnership

Feb 2020- Feb 2021

I arrived in Fife in crisis. The events with the NHS trusts in England, who had failed to treat my facial pain, were the trigger and cause of my mental health crisis. My GP referred me to the mental health team in Fife. They admitted me for ‘respite’ to Whyteman’s Brae inpatient unit for two weeks in February 2020. After I was discharged, I was under the care of a sweet mental health nurse, who phoned me weekly to help me with my distress about what was happening regarding my facial pain with the medical profession. In January, 2021, I withdrew from the mental services in Fife because of a serious incident with a psychiatrist who I had never met. It was horrific. This man had never met or spoken to me, and he wrote a dangerous letter about me, which negatively impacted the way head and neck surgeons viewed me. His letter said that I have ‘factitious disorder’ and am making my facial pain up. The letter that he wrote was the reason behind the discriminatory treatment from the surgeon at NHS Lothian.  I did not want mental health services to write any further letters of this nature about me, so I felt that I had to withdraw from their care. I raised a complaint about the psychiatrist with the General Medical Council. TW: This section of the post contains wording about suicide that some readers may find triggering. If you are in the UK and your need is urgent, please call 999. If you need support, please call 111, option 2, or Samaritans freephone; 116123.

Tees Esk and Wear Valleys NHS Foundation Trust

Princess Road Clinic, Malton

Feb 2022 – 2^nd May 2024

I have documented all of the incidents that occurred with Tees Esk and Wear Valleys NHS trust in my next blog post. In summary, they told me that I needed to ‘reframe’ the way I look at what has happened with the NHS and my facial pain. In May, 2024, they prematurely discharged me when I was still actively suicidal. A psychiatric liaison officer who I saw at Scarborough Hospital in June 2024 told me that I could not return to A&E for mental health support again. He told me that I had to find help ‘in the community.’ I saw a psychiatric liaison officer at York hospital A&E in August 2017 who referred me back to the CMHT. The CMHT still refused to give me any support or signpost me anywhere even when psychiatric liaison team from A&E had referred me back to them for support. The CMHT prescribed me a repeat dose of Zopiclone to help with my chronic insomnia. However, they did not offer me a review to see how I was responding to the medication. They discharged me again in December, 2024. This is extremely dangerous to prescribe a sleeping tablet and not review a patient.

TEWV Crisis Team

My experience with the crisis team at Tees Esk and Wear Valleys NHS Trust (TEWV) has been heart-breaking. The psychiatric liaison team at Scarborough Hospital first referred me to them in April 2022. The first period of their involvement was positive. They hurried through a referral to my CMHT for urgent mental health support. They also referred me to the adult social care department at North Yorkshire County Council for a support time recovery worker. My GP referred me back to them a year later. They visited me at home once and told me to ‘distract myself.’

Betrayal and Dishonesty

The third time has been devastating. Following a suicide attempt that I made on 7/02/25, Northumbria Healthcare NHS Foundation Trust, which treated me with IV NAC, contacted the crisis team at TEWV and told them that I required an informal admission onto a psychiatric ward in Yorkshire because I was still at risk. Northumbria Healthcare NHS Foundation trust told me that the crisis team at TEWV were arranging an informal admission for me onto a ward at Cross Lane Hospital in Scarborough. They told me that TEWV would call me to clarify the details. The discharge summary from Northumbria NHS Foundation Trust states, ‘Felicia has been offered an informal admission to a psychiatric ward in her own locality (York, Yorkshire) due to risks identified.’ It also states that Northumbria psychiatric liaison team and crisis team have no more responsibility for my care.

However, on 9/02/25, after Northumbria NHS Trust had discharged me, the TEWV crisis team told me on the phone that there ‘were no beds in Scarborough’ and that they ‘didn’t agree to an informal admission.’ They told me that Northumbria NHS Trust had miscommunicated this to me. I explained to them that my discharge summary stated that they were arranging an informal admission, but they insisted they were not doing so and that they ‘were sorry to disappoint me.’

I told them that I still felt suicidal, and they told me to go back to the A&E where they treated me for my overdose. They were playing a game of table tennis with my life. When would they stop playing games with my life? I don’t know what happened in the correspondence between these two NHS trusts. They had not been truthful with me. The fact that they had lied to me after a suicide attempt was devastating.

6 Appointments

The TEWV crisis team gave me six outpatient appointments at Cross Lane Hospital, Scarborough. There was no admission. The first nurse who I saw told me that they were not admitting me. She said that Northumbria NHS had phoned them and told them that I didn’t need a bed anymore. More lies. I have a recording of the crisis team in Northumbria saying that I needed an admission onto a ward. These lies were confusing and hurtful. I had woken up to more duplicity than I had gone to sleep with. The same nurse asked me at my second appointment if I still had plans to end my life. I told her that I did. She asked me what they were. I disclosed my suicide plan to her. She said, ‘You need to keep your cards close to your chest; otherwise, your plans will be scuppered again.’ I was stunned. I could not believe what I was hearing and that I was sitting opposite a mental health nurse. My interpretation of this was her saying, ‘Go commit suicide, but keep quiet about it so your plan will succeed.’ I had two appointments with the psychiatrist on the crisis team. He said, ‘We need to get this chronic facial pain sorted.’ At last! I thought someone was going to intervene. He committed to getting my medical records and speaking to the medical consultants about what was happening with my facial pain. But it was false promises. All he did was phone my GP and ask him to refer me to another specialist—the 19th NHS trust. His actions showed cowardice. I wanted him to fulfil on his promise and speak to the clinicians themselves, but he didn’t. He backed down.

Discharged

The crisis team have discharged me after 6 appointments and left me with no mental health support 3 weeks after a serious attempt to end my life. My CMHT continue to refuse to see me or offer any support and they have not signposted me anywhere. I feel mistreated and let down by the crisis team at Tees Esk and Wear Valleys NHS Trust, and by the NHS trust as a whole. To be left with no mental health support after a genuine attempt to end my life is devastating and frightening.

Lastly, following my suicide attempt, I posted on X (formerly Twitter) about the dishonesty regrading the mental health bed that I was promised that did not exist. The Care Quality Commission (CQC) saw my post and kindly asked North Yorkshire County Council (NYCC) to safeguard me. A member from the crisis team told NYCC that I did not need safeguarding. This led to NYCC closing down the CQC’s safeguarding request and taking no action on the concern. NYCC have put no safeguarding in place. This has left me with no support and no safeguarding.

Case To Answer

It is indisputable that all  three mental health have trusts failed me. 

What has hurt so deeply is how 3 mental health trusts and 3 crisis teams remained quiet. They all know that I am not making my facial pain up, so I have struggled to understand why they did not pick up the phone and speak to the medical teams about the impact that the pain was having on my mental health. The conduct of Tees Esk and Wear Valleys NHS Trust needs accounting for. They need to account for why they discharged me when I was struggling with suicidal ideation. They also need to account for why their psychiatric liaison officer told me on June 10, 2024, that I could not return to A&E for mental health support again.

Last but not least, this NHS trust needs to answer why Princess Road Clinic, Malton, refused to offer me any help when one of their psychiatric liaison officers at York hospital A&E referred me back to them in August 2024. There is an internal contradiction here. The CMHT needs to also explain why they prescribed me Zopiclone on repeat and offered me no follow-up about this medication. This is dangerous. Why did you tell Northumbria NHS Trust that you were arranging an informal admission for me onto a ward in Scarborough when you clearly had no intention to do so? Where was your duty of care? Why lie to me when I was at my most vulnerable? What do you expect me to do now? I am still suffering with suicidal thoughts, and I have no mental health support. The crisis team has discharged me. My CMHT still has no intention of offering me any support, and two of your liaison officers at both York and Scarborough hospitals have told me that I cannot go to A&E again to receive help with my suicidal feelings. What do you expect me to do? Why on earth did you tell NYCC to not put any safeguarding in place?

Northumbria Healthcare NHS Foundation Trust

Northumbria Emergency Specialist Care Hospital,

7/02/25-9/02/25

I made an attempt to end my life on 7/02/25, which I speak about in a separate blog post that I will be publishing shortly. I took a mixed overdose near Alnmouth beach in Northumbria. As I understand it, I passed out shortly after I took the overdose, and two groundsmen from the golf course found me and called an ambulance. I have no memory of any of it, only that I woke up at 10.00pm at Accident and Emergency. The clinical team was outstanding at Cramlington emergency specialist care hospital. The medical team administered IV NAC for twelve hours. They told me that it was successful because they got to me quick enough from the time of the ingestion. I can only praise their care while I was on the ward from 7/01/25 to 9/02/25.

Psychiatric Liaison Team

Sadly, the care from the psychiatric liaison and crisis team at this Northumbria Healthcare NHS Foundation Trust did not match the clinical care that I received on the ward. They left me in a highly vulnerable predicament. After I woke up, I made it overtly clear to the clinician who administered the IV NAC that I was still suicidal. The clinician promised me that they would not discharge me without mental health support. I asked both the psychiatric liaison team and the crisis team if I could see a psychiatrist. They both said no. I asked them if I could have a short-term admission onto a bed on a mental health ward in Northumbria until I felt I could keep myself safe. I told them that I would prefer to be admitted into a unit in Northumbria because Tees Esk and Wear Valleys NHS Trust had discharged me.

CNTW Crisis Team

Following an assessment, Cumbria, Northumberland, Tyne and Wear NHS Trust (CNTW) crisis team concluded that I was still at risk and that I needed an informal admission onto a psychiatric ward. They told me that the bed manager at Tees Esk and Wear Valleys NHS Trust was arranging an informal admission for me onto a ward in Scarborough. I asked them to confirm where this bed was and when it would be available. They said they could not confirm the details and that the TEWV crisis team would be in touch. My discharge summary clearly states, ‘Felicia has been offered an informal admission to a psychiatric ward in her own locality (York, Yorkshire). It also states that there is ‘no further role for the psychiatric liaison team or crisis team in Northumberland.’ However, the TEWV crisis team told me on the phone that there ‘were no beds available in Scarborough’ and that they never promised me an informal admission. TEWV said that Northumbria NHS had miscommunicated this to me. It appears Northumbria NHS Trust had not been honest with me about this.

Unsafe Discharge

Despite the exceptional clinical care that Northumbria NHS Trust provided during my time on the ward, the NHS trust misled me. They told me that the crisis team at TEWV was arranging a bed for me in Scarborough that did not exist. They also blocked me from the crisis team and said they had no more responsibility for my care. This meant that I could not go back to them for any help to resolve the issue with TEWV. Additionally, when I left the ward, the ward sister handed me back the carrier bag with the remaining whisky and paracetamol tablets that I used to try and end my life. This was not a safe or careful discharge.

Case To Answer

It was the systemic coldness, the lack of transparency, and the abdication of responsibility for my care by multiple NHS trusts that pushed me to try and end my life. You continued to treat me with the same coldness and dishonesty after my suicide attempt. You identified that I was still at risk, so why didn’t you therefore ensure that I had a bed on a psychiatric unit before you discharged me? That would have been a safe way to discharge me instead of throwing me out into the wild with no support. Why did you hand me back the bag with the remaining whiskey and paracetamol tablets in it that I had used to try and end my life when you discharged me? Throw them away next time.

My Current GP:

Ampleforth Surgery, March 2022-present.

There have been six other GP practices involved in this case from 2013.

 North Yorkshire County Council

 Adult Social Care

The General Medical Council’s Victim Support Service referred me to North Yorkshire County Council, (NYCC) for safeguarding in February 2022, before I moved back to England. I have documented the incidents that occurred with this local authority in my blog post, On Suicide. In summary: In March, 2022, a social worker assessed me as meeting the threshold to receive statutory social care support. She assigned me a support time recovery worker and agreed with me that when I moved to a place that was more central, where support agencies could come to me, my direct payments would be instated. In April 2023, a new social worker took over my case. She came to my house and told me they were stopping my support and closing my file. They did this without reassessing me, which is a breach of the Care Act, 2014. NYCC ignored the advice of my GP, who asked them to continue my support, and the clinical advice of a psychiatric liaison officer, who wrote to NYCC in March 2023, explaining that withdrawing my support would put me at risk. I complained to the chief executive of North Yorkshire County Council . I never got a response from him or anyone at the council. The police referred me back to NYCC a year later, but my local authority closed my file again. Following my recent suicide attempt on 7/02/25, the Care Quality Commission (CQC) asked NYCC to safeguard me. NYCC have closed down the CQC’s request and have taken no action. They have not safeguarded me.

Conclusion

All of the NHS trusts that are listed here have a case to answer to about my care over the last 12 years. There have been serious failings with most, if not all, of the trusts. Many of the consultants and GPs who I have seen have deviated from Good medical practice. They have not listened to me; they have not answered my questions. Many of the clinicians who I have seen have overlooked clinical findings or not been honest about abnormalities they have found. If they have been honest about what they have found, then they have failed to act on those findings. All of this combined has forced me to endure unnecessary amounts of pain and suffering for what will be 12 years this May, 2024. The key areas where these NHS trusts failed in my care are:

• Delayed Diagnosis and medical treatment/intervention
• Lack of continuity of care
• Lack of advocacy
• Lack of transparency and Accountability.
• Refusal to answer my questions about my condition.

Pathology Found:

• Abnormal blood tests; continuous raised neutrophils, infection markers, haemoglobin count and MCHC.
• Left ptosis; collapsed levitator
• Malfunctioning parotid gland; mucous plugging.
• Hardened/calcified parotid gland tissue.
• Sialolithiasis
• Reactive lymph nodes
• Enlarged masseter muscle
• Unexplained abnormality in buccal fat pad/ retromolar area

The pathology that you all found points to an infection as the likely cause of my condition, so why did you refuse to acknowledge this for so long?  I struggle to understand why four infectious disease consultants at NHS Fife, James Cooke Hospital, St Thomas’s Hospital, and The North Manchester General Hospital refused to try intravenous antibiotics. I asked all four consultants, repeatedly, why the antibiotics that I took for 11 years abated my symptoms when I was on them, but then my symptoms returned when I came off them. None of them gave me an answer. All four clinicians ignored blood tests that showed raised neutrophils, WBC, and other abnormalities. They took no action. Surely, IV antibiotics would have been better than doing nothing? The case to be answered by all of these NHS trusts who have been involved in my case, is why they have overlooked the pathology that they found and haven’t put it together to come up with a diagnosis. If it isn’t an infection, then what the hell is it?

Foot Notes

[1] Guidance: The Public Interest Disclosure Act, www.gov.uk

Photo Credits: Karl Moran, Angelo Abear, Jeremy Mcgilvrey, Neil Martin and Andrew Hall on Unsplash. Ekaterina Bolovtsova, Janson A, Ann H, Anna Tarazevich, Shvetsa, Roberto Carrafa, Mart Production, PNW Prod, Cottonbro studio, Krivitskiy, XPlore Heritage, Wojtek Paczes, Howard Senton, Ekaterina Bolovtsova and John on Pexels. Pirkko Seitsenpiste, Gerd Altmann and Markus Winkler on Pixabay.

Mental health crisis #2 openly discusses the topic of crisis. There are also references to suicide that some readers may find triggering. If you are in the UK and your need is urgent, please call 999. If you need support, please call 111, option 2, or Samaritans freephone number, 116123.

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Introduction

‘Like any other health crisis, it’s important to address a mental health crisis quickly and effectively. Crises can be difficult to predict because, often, there are no warning signs.’[1]

This post follows on from my previous post. In that post, I discuss my five-year-long mental health crisis that has arisen because of living with undiagnosed facial pain for so long. This post discusses the dismal response that I have received from the mental health services. I will be recounting my experience with the two most recent community mental health teams (CMHTs) and my experiences with two crisis teams.

This post also raises the question as to why statutory mental health services fail so many patients. It calls out for the English government to pour more money into non-statutory support services in order to provide a safety net for vulnerable patients, who, like me, have been left with no support.

CMHT 1: Fife

My experience of the mental health services in Fife was unjust and devastating. I moved to Scotland in January 2020. The motivation behind my move to Fife was to look for medical help for my facial pain. Naively, I thought that I might get a better response from the medical teams across the border.

I arrived in Fife five months into my mental health crisis. I have already blogged about how a psychiatrist in Fife, who had never met me or spoken to me—I didn’t even know who he was—went into my records and wrote a discriminatory letter about me in December 2020. His letter said that I have “factitious disorder” and that I am making up my facial pain to feed the “need to have a sick role.” He sent that letter to multiple agencies.

In Scotland, they have a medical recording system called Sci Gateway. Any medical professional across all of Scotland has access to a collective database of your medical records. The head and neck surgeons who my GP had referred me to could see the psychiatrist’s letter. His letter thwarted my whole reason for moving to Scotland: to get medical help for my facial pain. Two head and neck surgeons stonewalled me after he published his letter. His letter also led to systemic mental health discrimination, which I fell victim to.

This incident was a cruel injustice. A mental health professional who I had never heard of completely thwarted my chances of being taken seriously by the medical teams and getting medical treatment for my facial pain. I fell into a more serious mental health crisis after this.

CMHT 2: North Yorkshire

I didn’t think anything could be more unjust than my experience with the mental health team in Fife, but my experience with the mental health team in North Yorkshire has been even worse. My CMHT colluded in an underhanded manner with the cover-up about my facial pain. They then put the responsibility for their complicity onto my shoulders.

I arrived back in Yorkshire from Fife in February 2022. I was still in crisis. Even when the CMHT in North Yorkshire accepted me onto their caseload, they only saw me once every three months, (if I was lucky). On more than six occasions, I turned up for an appointment, and the MH clinician wasn’t even there. When I was actually seen, the “mental health nurse” told me that I need to “reframe” the way I view everything, that I “don’t like what I’m hearing from surgeons,” and that I need to hear some “hard truths.” She never specified what those “hard truths” were.

The Psychiatrist

I only saw the lead psychiatrist of my MH team twice in two years. I confided in the psychiatrist and told him that I had seen on my medical records that my GP had written: scan abnormal, to be expected, no further action. Within two hours of telling him this, I could not log into my TPP System One account. My GP practice had locked me out. When I got a new password, I saw that the GP practice had amended that comment. They had added: no review applicable to that record.

It was the psychiatrist’s sneakiness that I found so sinister. He must have called the GP practice within minutes of me leaving the clinic. But I clocked him. I saw through his sneaky.

The psychiatrist could have helped me. He could have questioned my GP about why they had ignored an abnormal MRI scan. He chose instead to protect the GP. This is how the cover-up culture works. It’s one thing to be complicit in the falsifying of my medical records. It’s a whole other thing to then put the responsibility onto my shoulders: to tell me to “reframe” it. Cruel doesn’t touch the sides. It’s corruption at its worst.

After my CMHT discharged me, I went to A&E on May 17^th 2024 to get help with my suicidal feelings. My GP practice then deleted that visit to A&E from my medical records. On 10th June, 2024, when I back to A&E, the psychiatric liaison officer told me that I could not go back to A&E for support again. They told me self-refer back to agencies who they knew had closed my file.

In their discharge letter, the CMHT said, ‘Felicia thinks that NHS bodies are colluding with each other.’ The psychiatrist giving my GP practice the heads up to amend my medical record was colluding with them. When my GP practice deleted from my record that I went to A&E for suicidal feelings on May 17th, it was to cover for the CMHT, who they knew should not have discharged me. If this isn’t colluding with one another, then what is it?

Shut Down Again

In August, 2024, I went to A&E for the third time this summer to get help with my suicidal feelings. I saw a psychiatric liaison who referred me back to the CMHT. The CMHT did another assessment in November 2024 but said that they cannot provide me with any help or signpost me to other support agencies. I asked them what I should do regarding coping with my suicidal feelings.

‘Your suicidal ideation is chronic, but we can’t help,’ they said. ‘It’s your facial pain that is causing your mental distress, so your facial pain needs sorting. That’s not our responsibility, I’m afraid.’ I felt sickened and angry that she downplayed my struggle with suicidal ideation while smirking.

Any talk of suicide should always be taken seriously. Most people who attempt suicide have given some warning—but this isn’t always the case. If someone has attempted suicide before, the risk is even greater.

www.nami.org

Crisis Teams

‘Crisis resolution and home treatment (CRHT) teams were introduced in England from 2000/01 with a view to providing intensive home-based care for individuals in crisis as an alternative to hospital treatment.’ [2] They act as gatekeepers within the mental healthcare pathway, and are supposed tom allow for a reduction in in-patient admissions. They are also supposed to reduce out-of-area treatments and support earlier discharge.

Jacobs and Barrenho conducted a study to investigate whether the introduction of crisis teams and home-based intensive treatment teams actually reduced the number of in-patient hospital admissions. They found no evidence that crisis resolution and home treatment policy have made any difference to inpatient admissions. They rightly state that there is ‘a need for more research on the policy as a whole.’[3]

I am not surprised by their conclusion. I have been under the care of two different crisis teams during my mental health crisis, and my experience has been appalling. One team caused me harm, and the other tried to pass the buck back to the CMHT. An inpatient hospital admission would have been much more helpful.

Crisis Team 1

My first contact with a crisis team was in West Yorkshire in 2019, when my mental health crisis began. When I first fell into a crisis in 2019, I did make a suicide attempt. I spent three nights at a hospital in Kent after my attempt. My local crisis team assured the psychiatric liaison team in Kent that they would give me a bed on my local ward in West Yorkshire on my return. The hospital in Kent sent me back home in an ambulance. When I arrived back, the crisis team in West Yorkshire told me that there was no bed.

They then sent the police to kick down my door as part of a ‘welfare check.’ I returned home at midnight to find that the police had boarded up my door. I phoned my crisis team and told them that I could not gain entry to my home. Their response was criminal. The lady who answered the phone said, ‘You’ll have to sleep rough. That’s consequences for your actions. You shouldn’t have done it.’

It felt like persecution.

Crisis Team 2

The response that I have had from the crisis team in North Yorkshire has been equally poor. They visited me at home for three days in 2022. I had just arrived in North Yorkshire, having been living in Fife. They referred me back to the CMHT. My GP was concerned about my welfare and referred me back to the crisis team in 2023. They visited me at home again. This time, they told me to ‘distract myself,’ but it’s challenging to distract yourself when you are in a suicidal crisis.

The crisis and home-based intervention teams decide whether or not to admit a patient onto a psychiatric ward. They do whatever they can to refrain from this. However, if a patient is in the throes of a mental health crisis, an inpatient admission is often the best thing. The 24/7 support provides a safety net that patients need when they are in crisis. In my experience, the crisis and home-based intervention teams do not offer this safety.

Signposting

A common action that mental health services take when they decline to help a patient is to ‘signpost’ them to non-statutory services. Non-statutory services refer to local charities that offer mental health support in the community and national helplines like Samaritans and Campaign Against Living Miserably (Calm). Community mental health teams sometimes signpost people to the local authority. ‘Where support is not available under The Care Act, local authorities provide information about non-eligible needs.’[4]

The reality is that most areas in England have few third-sector agencies that provide support in the community. In North Yorkshire, there is one charity in Scarborough that provides support. The only other non-statutory service is Supporting Victims which provides counselling support to people who have been victims of crime. That’s it.

There are many more third-sector agencies that provide mental health support in Scotland. SAMH, Breathing Space, and Housing Support are just a few to name. The Scottish government pumps a lot more money than the English government does into funding non-statutory services. I was extremely impressed by the third sector in Scotland.

Non-Statutory Support

If a CMHT declines to help a patient who is in a mental health crisis and ‘signposts’ them to the community, and there are no alternative agencies who can help, the vulnerable patient is left with no support. This puts a vulnerable patient at risk.

I have been ‘signposted’ back to my local authority, who refused to help me. The CMHT also gave me a number for the crisis team, but I can never get through to them. They have left me with no support. There are not enough charities in England to pick up the slack from CMHTs, bar a few national helplines, bar a few national helplines. If community mental health teams continue to ‘signpost’ instead of helping mental health patients, then there must be non-statutory support available. It’s not fair to signpost patients to community services that don’t exist. It’s like leading someone to a swimming pool with no water.

Conclusion

I am not alone in my experiences of the mental health system. My feed on X (formerly Twitter) is full of posts from people whom mental health services have failed. I read so many posts from patients who are in need of help and support but whom the MH services have dismissed. One lady recently posted about how her crisis team hung up on her when she rang them for support.

In 2020, Sir Simon Stevens, the previous chief executive of NHS England, said, ‘The NHS is delivering on its pledge to improve mental health support.’[5] The NHS is not delivering on the pledge. The mental health system fails too many of us. The gap between these words on paper and the reality for patients like me is too big. It needs bridging. Health executives need to put these words into action.

But, why are services that mental health teams provide generically so poor? Is it because they do not have the resources to meet the heavy demand on services? Or is it due to a lack of compassion and empathy? I don’t know. However, if statutory mental health services continue to fail so many patients, then the English government must pour more funding into the third sector/non-statutory services to ensure that there is a safety net for patients.

I feel abandoned and trodden on by the mental health services. At the very least, the mental health services could have communicated to the medical teams about how badly my facial pain is affecting my mental health. They have not advocated for me at all. They have remained silent, which is a form of complicity. The word that best describes the response from mental health services to my mental health crisis is betrayal. And it’s hurt.

A Tribute

I want to extend a heartfelt thanks to all of the non-statutory organisations that have helped me weather this storm. I have been heartened and touched by their kindness. It’s thanks to you all that I have made it this far. All of the charities mentioned in this post that have a hyperlink are charities that have supported me during my five-year-long mental health crisis.

I don’t think that charities get enough recognition for the extraordinary work that they do in communities around the UK. I have experienced nothing other than dedication, kindness, and integrity from every worker and volunteer I have come into contact with. You are my heroes and heroines, and on behalf of myself and the thousands of others whom you help, a massive thank you.

Foot Notes

[1] The National Alliance on Mental Illness, (NAMI), Navigating a Mental Health Crisis

[2] Jacobs R & Barrenho E: The Impact of Crisis Resolution and Home Treatment Teams on Psychiatric Admissions in England. Feb, 2011, The British Journal of Psychiatry: the journal of mental science.

[3] This quotation is taken from the same source as footnote 2.

[4] Care Quality Commission: The State of Health Care and Adult Social Care in England, 2023/24, www.cqc.org.uk

[5] NHS England: Mental Health Crisis Services Rolled Out Across England, March 2020, www.england.nhs.uk

Photo Credits: Prawny on Pixabay. Alexsi Partanen, Jose P Ortiz, Burkhard Kaufhold, Jametlene Reskp and Masaaki Komori on Unsplash. Tima Miroshnichenko, Tom Gill, Timur Weber, Pavel Danilyuk, Julia Cameron, Olha Ruskyth, Jeff Stapleton, Brett Sayles, CK Lacandazo and Mart Production on Pexels.

Mental health crisis #1 openly discusses the topic of distress and crisis that some readers may find triggering. If you are in the UK and your need is urgent, please call 999. If you need support, please call 111, option 2, or Samaritans freephone number, 116123.

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Introduction

‘A mental health crisis is when a person’s emotional or mental state puts them in danger or prevents them from being able to care from themselves or function effectively in the community.’[1] ‘Crisis occurs when something happens or a series of events happen that take you over the edge and reduce your ability to cope or function normally. Stress and sudden changes in your personal life such as the death of a loved one, divorce, the loss of a job, incarceration or illness can all result in emotional overload and overwhelming feelings of helplessness.’[2]

Very Well Mind describes a mental health crisis as ‘when you are so overwhelmed with emotions like fear that your go-go coping mechanisms aren’t helping. Being in a state of crisis means that you’re so afraid and confused that you can’t make decisions.’ Mental health crisis #1 discusses how living with unresolved facial pain for so long has precipitated a serious mental health crisis, which began in October, 2019. I have been in crisis for five years.

My Mental Health Crisis

What caused my mental health crisis? Simply put, I could not endure the physical pain that I was in anymore. It was too much. The medical profession’s outright refusal to take any responsibility became unbearable. They would not listen. They would not act. This burden was too heavy to carry alone. I crashed.

I had been resilient up until October 2019. My late mother graced me with a stoic spirit that carried me through until that point. I had been going to medical appointments and articulating my symptoms to clinicians with a clear head. I did this for six years. However, in 2019, NHS trusts started to reject my GP’s referrals. They gave no reason for this. I felt invisible.

My periocular pain became particularly acute at this time. I developed throbbing pain in my temporal artery region. The pain in my remaining parotid gland was becoming more severe, and I developed ear pain on my affected side. Clinicians were refusing to see me or answer my questions. It was an impossible situation. As my facial pain intensified, so did my despair at having no medical help. After so many knockbacks, I broke. I had not experienced this level of distress before. I had known trauma from my childhood and adolescence, but I had never known this overwhelming and perpetual level of distress. A protracted crisis was new to me. My mental health crisis has lasted five years. Enduring distress for this long is exhausting.

A Vicious Circle

Mental health crisis is terrifying. The ground literally falls from beneath your feet. The word “fragility” takes on a new form. My mental health crisis has manifested in acute distress, severe insomnia, and suicidal thoughts. I have felt uncontrollable rage about how these NHS trusts have behaved, but my most predominant feelings are despair and helplessness. I explain in On Medical Trauma that I am in a constant state of shock and hypervigilance. These emotional states are also major components of my mental health crisis.

When my mental health crisis began, it did feel like everything caved in. The absence of any medical care left me feeling unsafe and frightened. This was made worse by the fact that I have had no one in the system to turn to for help or support. There has been no one to advocate for me. Doors close one after the other. As one NHS trust after another has closed my case, my mental health crisis has worsened. As clinicians have gaslighted me and continued to overlook abnormal pathology, my crisis levels have intensified and deepened. It’s a vicious circle.

Setting the Record Straight

I was not in any mental health crisis when my facial pain began in 2013. It’s important that this is understood. It is no secret that I had a challenging upbringing. My first novel, Lucia’s Poltergeist, is about the difficulties I experienced growing up. It’s not a secret that I suffered abuse at the hands of two damaged parents. However, I had dealt with my childhood issues long before my facial pain began. I had had years of psychotherapy, and I was doing well. There is no mention of suicidal ideation on my medical records before 2019.  The first entries of suicidal ideation on my medical records start in October 2019.

Discrimination

I have spoken openly in this blog about the systemic mental health discrimination that I have experienced. Mental health discrimination has worsened my mental health crisis.

The lack of resolution to my facial pain and the medical gaslighting by clinicians have caused my mental health crisis. Not the other way around. I am not imagining my facial pain. However, clinicians don’t understand this. Clinicians attribute my “distress” to unwarranted “anxiety” or to “mental health” problems. They don’t join the dots. They fail to understand that my distress is being caused by not being believed by clinicians about my facial pain. The lack of self-reflection that clinicians demonstrate deepens my distress levels as I feel more unheard.

On top of the lack of empathy that I have received, clinicians have directly discriminated against me by either refusing to see me, stonewalling me for months on end, or writing inappropriate comments about me having “psychiatric problems” on radiology forms. This has exacerbated my feelings of despair.

Torture

To not be able to get answers about one’s health is a form of torture. The pain around the left side of my head now feels sinister. It feels like someone is drilling a screw into my head. Meanwhile, NHS trusts have information on their files that shows there is abnormal pathology. They have chosen to ignore this evidence, take no action, and give me no treatment. This feels inhumane.

I liken being in crisis to treading water in the Atlantic Ocean. I have nearly drowned. Waves have washed over me, and I have struggled to come up for air, but I am still straddling the waves. I am out of breath. I am exhausted. There are days when I cannot feel my own legs, but I keep going in the naïve hope that a lifeboat will see me and get me out of these perilous unforgiving waters.

The Doctor-Patient Relationship

I cannot emphasise enough how is dangerous when a clinician does not take a patient’s physical symptoms seriously. It is a form of gaslighting. It can worsen a patient’s despair. Each time that a clinician has told me that I am imagining things or that the pain I am experiencing is not real, my mental health has spiralled downward.

Relationships are a mirror. They are a two-way street. Both parties need to be honest and open with one another in order for a relationship to work. The doctor-patient relationship is no exception. However, the doctor-patient relationship toolkit, which the British Medical Association published, states that ‘the onus is principally on the health professional to make contact with patients work well.’[3] It states that ‘while doctors and patients should both be honest in their communication with each other, doctors have specific, patient-focused duties.’ [4] Doctors must:

• Treat every patient considerately.
• Listen to patients.
• Make the care of the patient their first concern.
• Give patients information in a way they can understand.
• Respect the right of patients to be fully involved in decisions about their care. [5]

None of the forty plus consultants who I have seen have listened to me, treated me considerately, given me any information, or involved me in any decisions at all about my care. The last NHS trust who refused to see me didn’t even let me or my GP know that they had rejected my GP’s referral.

Good doctor-patient relationships are characterised by mutual respect, open and honest communication, and respect for the dignity and choices of patients.

The British Medical Association.

Reflection

I have fallen into a mental health crisis because of a lack of listening and respect from the medical profession. As I say in Good Medical Practice #3, there needs to be stricter regulation to ensure that doctors follow this guidance. Medical skills and knowledge on their own are not enough. The relational workings of the dynamics between doctor and patient are just as important. It is part of patient safety that healthcare professionals adhere to the guidance about the doctor-patient relationship. A strong working relationship between doctor and patient is key to successful health outcomes.

Modern medicine is complex and dynamic. Although highly specialised, technologically sophisticated and often delivered by multi-disciplinary teams, strong doctor-patient relationships are at the heart of good care.

The British Medical Association.

Conclusion

My facial pain is a physical condition. It has a medical/biological cause that medics have not yet identified. My facial pain is not a mental health-related condition. I am in a mental health crisis because medics have not resolved my pain. This must be understood. The mental health crisis that I am in is a human response to extreme adversity. Anyone who had taken this many knocks would eventually crash. There is nothing “extreme” or “unreasonable” about feeling despair and distress at not being heard by the medical profession when I am in this much pain.

The healthcare system needs to acknowledge the impact that their decisions have had on me. Just an acknowledgement would suffice. I am a human being. I am not bionic. The human condition is fragile, and I have buckled. For my mental health crisis to subdue, a medical professional within the UK healthcare system must take responsibility for this. Until they do, I will remain in a perpetual state of crisis and, quite possibly, won’t make it. I cannot carry this burden indefinitely. I am not Superman.

Good therapeutic relationships, whether face-to-face or remote, are characterised by partnerships between doctors and patients.

The British Medical Association.

Foot Notes

[1] Psyche Hub: What is a Mental Health Crisis?

[2]  Crisis Symptoms, Causes and Effects  www.PsychGuides.com

[3] British Medical Association, The Doctor-Patient relationship toolkit, Chapter 2, www.bma.org.uk

[4] This quotation is from the same source as footnote 3.

[5] This information is from the same source as footnote 3.

Photo Credits: Austrian National Library and National Cancer Institute on Unsplash. Wikilmages, Granderboy and Abdou Moussaoui on Pixabay. Reneterp, David Garrison, Ayyub Jauro RDNE Project, ShotbySylvesterabigail and Cottonbro on Pexels.