Billy Coleman was born on the 10th August 1989 with immaturity of the brain, motor dysfunction, severe motor dyspraxia, truncal disequilibrium and ADHD; with severe coordination problems. His family were advised he would never walk or hold his head up, loss of hearing and he significantly struggled from birth; yet when the physiotherapist came, he worked tirelessly, proving the doctors wrong and eventually began to function well after multiple hospital appointments with neurologists and specialists. Following this he was able to attend school.
Throughout schooling Billy was not academic and could not do sporting activities due to coordination then pursued a career in cookery; becoming a trainee chef with Anthony Worrall Thompson aged twelve, whilst going to school part time. Billy’s talents as a chef grew rapidly where he became a junior sous chef early in his career and moved onto the one Michelin star restaurant, The Glass House. From there he moved onto a short stint at Hibiscus two Michelin star restaurant and also Gordon Ramsay three Michelin star restaurant. Billy is a lifelong Brentford Football Club Supporter and travelled far and wide to see them play.
As his career progressed, Billy moved into a new culinary sector working for Mohamed Alfayhed and Fulham FC, where he continued to grow and worked in multiple high-end sporting events around the country. He also completed some external events for the Royal Family. He moved onto Chelsea FC working at their prestigious Dolce & Gabbana Directors Lounge, whilst continuing external major sporting events including; Cartier for Lord Marsh Festival of Speed, Centre Court Wimbledon, Lewis Hamilton Lounge and Silverstone. Billy was offered the opportunity to work as a full-time souschef at Chelsea FC, developing his talents over many years working alongside Chris Garrett; a great leader. Billy contributed to help run the show as a head chef and won Culinary Awards whilst at the club. An opportunity arose to become Executive Head Chef at Reading FC, an incredible opportunity which Billy enjoyed for a couple of years before heading back to London to become Head Chef for Ben Burton at Wentworth PGA event and assist at his new unit in Olympia Exhibition Centre.
Billy was keen for a new challenge and was able to adapt his skills to working as a private chef for Russian and Belgium clients in Switzerland and the French Alps. He was later head hunted to become Head Chef of a super yacht travelling Europe and providing guests with some of the best culinary delights. Billy has worked with some of the world’s big namesincluding the NFL, You Tube, Microsoft for major events whilst also being a personal chef to high end clients and known celebrities. He had achieved multiple awards across different sectors.
He returned home for Christmas in 2019 in preparation to move onto a bigger yacht, when COVID-19 hit. These unfortunate events impacted many lives and Billy admittedly struggled mentally at the beginning. He came up with his own businesses during the initial lockdown; FLoUR by Chef Billy Coleman and CaKE ChEEsE by FLoUR making multiple sweet treats including cheesecakes and brownies. After the first lockdown ended, he catered an event called The Peep Show, which was the first event in the UK serving 130 guests alongside an elite party team business. Billy went on to build his own event, ‘The Inflatable Cinema’ which included a two-course meal under the stars whilst watching a top-rated movie. Unfortunately, only 3 out of the 4 events were delivered due to COVID-19.
Throughout his career, Billy has always donated to charities supporting children and assisting in supporting chefs.
Not only had Billy carved a successful career in the culinary industry, he had created two businesses and developed entrepreneurial skills. At the beginning of November 2020, Billy started feeling unwell and was reported missing upon failing to return home after a long walk he had said he felt something go pop in his head. He was found on Brighton Beach by Sussex Police where he was detained under Section 136 Mental Health Act for his own safety. He was detained in hospital and moved to a mental health unit in Norwich, where he was advised this was the only bed space available.
Whilst there, he recalls being treated poorly and his health rapidly deteriorated. He remembers an incident where his resting heartrate was 200 and his blood pressure was 180/118 – he was rushed to another hospital where he was told he was suffering with a blood clot and was given a large injection through the stomach. His immediate family were advised his life was in significant danger.
The following day he woke up having lost sight in his left eye, loss of speech, no feeling in his legs and he was in uncontrollable pain down his left side. He had been placed on a morphine drip and numerous medications, being given the diagnosis of Functional Neurological Disorder.
Billy recalls the staff treating him cruel and unfairly during his time in Norwich hospital; he felt this was because they perceived he was in a debilitated state. However, he was able to write some things down on paper to try and communicate due to losing his speech. He lost all his businesses he had spent a significant time working on and had to pay off what he could.
He would later be discharged with a large bag of tablets and no aftercare plan from the NHS. Billy came home with no money, speech or mobility. He had to borrow a wheelchairwhen he got home from hospital until his grandmother supported billy with a electronic wheelchair at a significant cost.
Throughout this difficult time, Billy’s mother has fought hard to seek support and assistance with Billy’s imminent deteriorated health, making over 100 phone calls and paying to see an FND Specialist. He was diagnosed with Severe Functional Neurological Disorder, severe anxiety, depression, severe dyspraxia, motor dysfunction and severe ADHD. He suffers with paralysis down one side of his body, poor speech, 24/7 severe pain, seizures, blindness in the left eye, deaf in one ear and severe anxiety. He requires 24-hour care as he is unable to conduct day to day activities alone; including going to the toilet and eating food. Billy has always maintained his positive attitude and motivation to improve his health.
My Journey with FND
• 06.11.20 Royal Sussex County Hospital, Brighton/Mental Health
Billy was taken into the Royal Sussex County Hospital Brighton, after being found on the beach in disarray. Billy recalls hearing Police Officers at the scene arguing over how to deal with him; this was centred around how to transport him to hospital. A female police officer stated he should not be placed in the back of a police van as he had not committed a criminal offence and under Sect 136 of the MH Act, he should have been transported in a car not a police van after a commotion. he was finally transported in the back of a police car having felt like he has been treated as a criminal with much confusion. In this period of time two police forces Sussex and Surrey continued too dispute unprofessionally in front of Billy who’s care he was supposed to be in. He was surrounded by police officers at the hospital and aggressively woken up by police to be moved to the Secure Unit at The Hive in Hove. Whilst there, he was fed children’s microwave meals and discharged to a hospital in Norwich via secure transportation which took 6 hours travelling from the bottom of the country.
• 08.11.20 Southern Hill Hospital, Norwich/Mental Health
Billy arrived at Southern Hill Hospital in the middle of the night and had not be fed that day. When Billy got to Southern Hill he was placed on a new secure wing. The following day,he was seen by a new team who placed Billy on severalmedications.
During his time at Southern Hill, Billy was treated poorly, fed rations of food, placed on a significant number of drugs and continually had to ask for help from staff. His condition continued to rapidly decline, in which his family members noticed, and they felt the hospital did not help.
Upon the decline in his health, he was taken to the main building where he had a ECG and his resting heart beat was 200 and blood pressure 180/118 an ambulance was called and he was rushed to Norfolk and Norwich General Hospital where he was supervised by a member of Southern Hills Team as he remained under their care.
• 28.11.20 Norfolk & Norwich Hospital General Hospital
Billy was rushed through the doors of A&E having been told that he had serious blood clot; where he was placed in a side room and waited 4 hours to see a doctor who injected him with something in the middle of his stomach to slow down the clot.
He was sent back to Southern Hills and returned the following morning for a scan. That morning, Billy’s health significantly deteriorated, and a stroke and senior blood clot teams had been called down. His family were advised to travel to Norwich from London as his life was in jeopardy and he was admitted to Norfolk and Norwich Hospital. He went through numerous tests including CT scan, MRI and blood tests in which his health continued to decline. He was given a double dose of sleeping tablets, however, abruptly awoken soon after which continued to put Billy’s health at risk.
The team at the hospital continued to give misleading and confusing information whilst the left side of his body continued to further paralyse, and he was in constant and severe pain. Upon his family’s arrival, the stroke team and neurologist met with him and his mother. They diagnosed him with Severe Functional Neurological Disorder and advised he would be wheelchair bound. They further informed them that professionals within the NHS remit would work collectively to support Billy and his family including; speech therapist and occupational therapist to assist with community care. However, there has been no support or aftercare plan put in place.
• 02.12.20 Discharged home to London
Discharged from hospital with a large bag of medication with no follow up and no care plan. Incorrect discharge letters from Southern Hill Mental Hospital & Norfolk & Norwich Hospital (phone calls emails to and from). On his day of discharge from both hospitals they did not have the paperwork ready and sent this via email which had multiple inaccuracies.
• 03.12.20 Disabled equipment £34.97
Payment for general disability equipment. Not provided by NHS or local council.
• 4.12.20 Clothing costs
Billy started to gain weight and swell due to his condition and medications. Billy’s mother and father had to provide him with a new wardrobe costing hundreds of pounds.
• Norfolk & Norwich – leg scan for blood clot
Billy’s mother received a random phone call for an emergency scan as they still thought Billy had a serious blood clot in his leg.
• 7.12.20 NHS Medical Exemption
• 10.12.20 Ian Day/Southern Hill/Mental Health hospital
Completed referral to local community to support Billy
• 10.12.20 Social worker contact
No follow up/contact
• 10.12.20 Applied for a disabled badge/ESA/UC/PIP
• 11.12.20 Occupational Therapy
Assessment told to be positive as only young given a table and stool (they do not provide wheelchair or walking stick). Assessment was unhelpful as they said Billy was negative, which he felt was very unfair.
• 11.12.20 Speech & Language Therapy
States up to a 12 month wait or longer
• 12.12.20 Ashford & St Peters
On arrival they knew nothing about Billy or the emergency scan for the leg blood clot. Staff were trying to find a vein to take blood, however they struggled, and this significantly hurt him. The hospital apologies and the ultrasound was completed on the leg.
• 12.12.20 Ashford & St Peters
Rapid response team attend the house as an emergency due to Billy’s condition. They were concerned with his condition and the set-up of his after care - they stated he needs in-house intense rehab. They were to arrange an ambulance to take him to either Woking or Walton Community Hospital the following day.
• 13.12.20 PM
Received a call to state that that will not be happening due to Billy not meeting the criteria as he is not ‘frail’. Tried to send billy to an elderly home, not to a severe disability rehab centre.
• 14.12.20 Enquired for private consultation/intense rehab
£2k joint initial assessment + inpatient stay £11,200 per week (hospital fee only) + consultant £3,650 (Mon – Sat 6 days a week 4 sessions a day) plus food drink and anything what is not included usually 6-week block
• 14.12.20 Surrey council/accepted for a disabled parking badge
• 15.12.20 Electric wheelchair £2394.98
Billy’s grandmother supported billy and purchased him a wheelchair
• 17.12.20 NHS Neuropsychiatry St Georges referral sent to NHS secretary Daren Yearly
• 17.12.20 Referral letter to Brainmind
• 18.12.20 GP sent request for intense rehab St, Georges/ Wolfson Neuro
• 20.12.20 PIP returned completed
• 05.01.21 Dr Jan Coebergh FND Neurologist
Private appointment for second opinion and what help we can get or are entitled to.
• 07.01.21 referral completed for Neurology at St Georges
• 25.01.21 Phone call with MH team
T/C booked following day to see what can be done
• 03.02.21 OT & Millbrook
To assess front of the house for a ramp so Billy can get out of the house
• 05.02.21 Mind Matters – Mental Health assessment
Outcome for staff to discuss with management. Result was they cannot help and will pass onto CMHT.
• 10.02.21 Social Worker
Attended home for assessment
• 12.02.21 Sight for Surrey – result stickers for laptop?
Billy received laptop stickers for a laptop he did not own because he is blind in one eye.
• 12.02.21 letter to confirm Mind Matters/Mental Health discharged Billy
Unfortunately, he was too complex to be helped by this service.
• 12.02.21 Seizures
Billy started to suffer seizures which were happening around 3-4 times a week – complete loss of co-ordination and unaware of what is going on around.
• 15.02.21 purchase Ultralight electric wheelchair £788.98
Electric wheelchairs break multiple times. His mother and grandmother sourced one from Spain.
• 16.02.21 Millbrook
Fitted ramp outside front of the house.
• 18.02.21 referral for wheelchair at Roehampton.
Weight gain - too heavy for commode.
• 18.02.21 Community Mental Health Assessment at home by Dr Lee/Gibson
• 23.02.21 Ashford & St Peters/Dermatology Consultant - suspected Melanoma to be removed in 4 places
• 20.02.21 Ashford & St Peters/Dermatology to remove suspected Melanoma
Billy went in for surgery for 2 hours and 40 minutes multiple suspected cancers removed
• 25.02.20 Dr Jan Coebergh follow up
Same appointment not much promise and hope repetitive.
• 26.02.21 accepted for PIP
Personal independence payment came through for billy ofhigher rate after a lengthy wait and living on ten pound per day on ESA other benefits still pending.
• 02.03.21 Spelthorne Council Housing – application accepted
• 02.03.21 CSH Surrey letter to confirm on waiting list
• 03.03.21 accepted for ESA
• 03.03.21 Email to Local MP and PM Boris Johnson
Billy had emailed the local MP Kwarteng Kwasi and cc’d in Prime Minister Boris Johnson.
Mr Kwasi had replied saying all parties involved have in under control, however Billy felt this was not the case given the circumstances.
• 04.03.21 Standard wheelchair delivered against my weight as long waiting list (still waiting)
• 11.03.21 Willow Clinic St Georges/Neuropsychiatry: Jacob Bird
Appointment cancelled by the hospital.
• 18.03.21 Oxford Covid Injection
After arguments that Billy was not vulnerable enough to receive the vaccine.
• 25.03.21 OT
Home assessment and discharged.
• 30.03.21 Ashford & St Peters letter
To confirm must return to have another 1.5ml round one wound cut out further
• 31.03.21 Dr Jan Coebergh follow up
Steroid and Anaesthetic injection to relieve pain (made no difference).
• 06.04.21 CMHT
Confirming medication change.
• 10.04.21 CMHT
Home visit for update stating manager was going to visit.
• 21.04.21 Willow Clinic St Georges/Neuropsychiatry: Emiliya Vangova
This was another tough day for Billy as all multidisciplinary teams had all their eggs in one basket. Felt like the meeting had a separate agenda to what Billy and his mother anticipated.
• 26.04.21 Ashford & St Peters Dermatology removal of 1.5ml – arrived and they did not know which one they were removing further
After much debate between two surgeons and lab work,unsure of what part of the body to cut out they had to phone the laboratory to see what the mix up was again. Billy had another stressful episode and painful surgery about a serious on-going cancerous melanoma battle on top of FND.
• 26.04.21 follow up letter from Emiliya
Incorrect detail on what was discussed. More inaccuracies and judgement about Billy which was not discussed at the appointment.
• 26.04.21 Called Emiliya; to discuss letter in which she confirmed she would send an amendment and a letter of apology.
• 28.04.21 Ashford & St Peters
Dermatology Consultant letter apologising for the mix up/stress on the 26.04.21
• 29.04.21 Community Mental Health Consultant; Dr Win
After many disappointing experiences with the NHS, Billy connected with Dr Win (Psychiatrist) who did not lie or deviate from the truth. He advised his position within the multi-agency team and that Billy needs to have things carefully explained to him. He was also supportive of some of Billy’s ideas.
Billy needs staff to be open and honest during these meetings. He needs a plan and clear goals which he can work towards and honesty in follow-up letters. This is what Dr Win was able to do and this worked well for Billy.
• 5.05.21 Mobility Aids £41.98
Billy went to the disability shop for a fold up walking stick and wheelchair to be able to carry stuff on the back of hiswheelchair; to try to be independent as possible with no help from NHS or council.
• 07.05.21 Community Mental Health/Dr Win follow up letter
Billy engaged very well with Dr Win and appreciated the support provided. The letter further evidenced the conversations held during multi-agency working. Billy also appreciated that Dr Win was able to follow through on what he had said during the meeting.
• 12.05.21 Dr Jan Coebergh follow up
Family had to email secretary as did not receive an appointment or follow up letter – still no letter and when we arrived, he was not on patient list.
Billy attended Chobham Hospital under Dr Jan Coebergh’scare (Senior Consultant). He has given Billy one steroid and anaesthetic injection. Billy felt he provided very little positivity and was not responsive to any questions Billy or his mother had at the appointment. The Dr advised there was little he could do due to waiting lists and he would either see Billy in 4 or 7 months, leaving him without any treatment, care or rehabilitation meaning Billy would been left with no help for a lengthy time of one year and two months. His only suggestion was to access private health care.
Billy left this appointment feeling very let down by the NHS and council and left with no options. He feels the responsibility lies on him and his family and that he has received no support from professionals. He has tried to come up with numerous scenarios of how he could raise the money to seek private care.
• 24.05.21 Oxford Covid injection 2
Pending
• 07.06.21 St Georges Neuropsychiatry Emiliya Angova follow up
Pending
Billy has felt like he has been hopelessly clutching at straws and chasing NHS staff to be left with even more unanswered questions and limited assistance. He had no intention of raising money as he is a proud man; however, has been let down by the system.
He has reached a point where he feels completing debilitated, that he needs to scream for help as he deserves a fair chance of recovery. He maintains his positivity and strength daily. He feels if he doesn’t start to access rehabilitation services soon, the harder it will be to recover in the future and get back to where he was.
Billy and his family need help raising vital funds to assist in improving his day-to-day functioning quality of life. We are coming up to the 7-month mark since the diagnosis and complete loss of independence with no support or plan from health services. Unfortunately, with FND, the more stress placed on Billy, the worse his condition can get.
