Lifting expectations; a legacy for Danny Willgoss

As I sit trying to write this, to introduce you to Danny Willgoss, the poignancy of it being World Suicide Prevention Day is not lost on me.

Danny was 25 when he died, his family believe by suicide, on Fathers’ Day in June 2018. Danny was autistic and we know that autistic people, without a learning disability, are nine times more likely to die by suicide than the general population. For this group of people suicide is the second leading cause of death in adults, after heart disease (Autistica, 2016). 

I asked Danny’s mum, Sue, to tell me about him. He was born in October 1992, a rainbow baby:

“Daniel. My young man. He was my third pregnancy, I lost a baby the year before I had Daniel. First I had Matthew, then Robert, and Daniel was born a year less a day that Robert died.

When you have a baby after you’ve lost a baby, there’s a special kind of attachment there. Don’t get me wrong, all your children are special but that’s just different”.

After Daniel was born, Sue, and her husband, Terry, who now run a pub in Lowestoft, had two further sons, Jamie and Elliott. They sound like a close knit family, who have battled for support throughout their lives.

Sue describes how it was apparent early on that Danny had some special needs, in fact all four of their children had special educational needs while at school, and she was a founder member of the parent carer forum in Suffolk.

“Daniel was hard work, no doubt about it, he struggled to go to school. He was always quite an anxious child. He didn’t attend full time until he was in Year 3, and then it all started to go wrong. He got a statement of special educational needs, but he was treated appallingly by the local authority”.

Danny came under the Child and Adolescent Mental Health Services from when he was 3 years of age, and he received an autism diagnosis just before his 9th birthday. Sue recounts how patchy educational provision was, and how much Danny missed out on:

“Daniel was out of education, he attended part time at best, then he didn’t attend school at all from Year 6. There was no provision or support provided by the local authority for months and months. Daniel was much more settled, and less anxious, being at home but he didn’t have any provision.

That’s not true, he had a private tutor provided for 5 hours a week by the local authority… he was excellent, Daniel liked him… what happened, they removed the home tutor because they said he was becoming too familiar with the family”.

Danny was left out of school for long periods of time and received most of his education online.

“Daniel learnt by listening and watching, he would watch YouTube channels and the Discovery Channel. He was self taught at many things”.

Danny thoroughly enjoyed playing rugby, he played for Lowestoft and Great Yarmouth, and then for Norwich before breaking his collar bone for the third time forced him to stop. He took up Mixed Martial Arts and went to boxing training, not to box, but to get fit. Fitness and being active was always important to Danny.  

When he turned 16 Danny decided he wanted to go to Sixth Form to study photography. He loved photography, having spent time with his grandfather taking photographs of old churches and buildings, he had decided that he wanted to be an architectural photographer.

Sue secured funding for a personal assistant to be with Danny at college, he’d go into lessons to hear what was happening and then he’d go and work separately. Danny couldn’t cope with learning in a classroom with too many people. His anxiety was still very present, but he enjoyed college and enjoyed his course.

Then in April 2010, while doing a friend a favour, Danny’s life took another turn. He had gone to college to pick up a friend whose motorbike had broken down. The two of them were riding home on Danny’s bike when a van pulled out in front of them and knocked them both off the bike.

“We thought Danny was the lucky one originally, his friend Jordan had broken his back, but it soon became apparent that Danny had sustained a serious brain injury. He couldn’t remember things, he didn’t remember the accident or the day before.

He tried to carry on. The accident was just before the Easter holidays and he returned to college for the new term but he couldn’t remember his pin numbers, his passwords at college, he was repeating things and not really making a lot of sense.

He had a job, he’d been working at Bookers Cash and Carry but he couldn’t return to that. He tried returning but he found life so difficult and things got worse, and worse, and worse”.

Danny was later diagnosed with post-concussion syndrome, where the concussion symptoms of dizziness, headaches, problems with concentration and memory don’t go away. This on top of his autism and anxiety disorder, compounded the challenges Danny was already facing. The head injury also led to a level of impulsiveness that was new for Danny. Sue describes how his mental health sharply deteriorated:

“He was 17 going on 18 and he dreaded going outside without his mum. The GP referred him to adult mental health services and they started him on antidepressants. He took his first overdose in December that year”.

Sue goes on to describe a number of instances of self-harm and how at one time Danny self-medicated with alcohol when he was very unwell. He was diagnosed with depression with suicidal ideation.

“He had quite good support from the adult mental health team, he had a psychiatrist who really got him, he was brilliant with him. He had a care coordinator who worked well and supported him well, and me. He saw a cognitive behavioural therapist once a week and he got a lot from those meetings.

Then the trust had a pilot year of a new team, a youth mental health team. After the pilot year was over they insisted that Danny, due to his age, had to transfer to the youth team.

I tried my hardest for him not to be transferred, it would only be for a couple years and then he’d need to go to adult services anyway, and he knew people, and he’d built relationships and trust with them”. 

The services would not budge, Danny’s care was transferred. His health deteriorated, his ability to cope at college also deteriorated and the week of his A Level exams the stress became too much for him. Danny lay on the railway track.

Sue called the 6th form to say he’d not be doing his A-levels and requested they allow him to do retakes in November. The college were as accommodating as the mental health trust had been, that is not at all, insisting Danny achieve 100% attendance for the remainder of the year (an impossible ask) or they wouldn’t have him back.

Sue recalls how these refusals hit Danny hard. He was overcome with anxiety and dread, he didn’t complete his course and quitting hurt him.

Danny clearly had a number of close friends and Sue talks about a couple of relationships that Danny had with girls.

Danny and his girlfriend had a baby in April 2015. They all lived together with Danny’s family for some time. Devastatingly for Danny two months after the baby was born his girlfriend decided that she no longer wanted a relationship with him, and she didn’t want him to have anything to do with his child. She’d been to register the baby’s birth with her parents and had not named Danny on the birth certificate, this meant his access rights were limited. She refused to have a DNA test and Danny was therefore unable to prove that he was the child’s father. He filled out court forms but he was never well enough to go to court and fight for his rights.

Sue describes how devastated Danny was at not being able to see his child. She is certain that it is no coincidence that Danny died by suicide on Fathers’ Day.

Things starting to go really wrong in December 2017, and Danny started self-medicating with alcohol. Sue contacted the mental health team, although they had tried to discharge Danny the previous October.

In April 2018 Danny asked his Mum to come live with him. Danny’s parents were publicans and lived at their pub, their sons, all now grown adults continued to live in the family home. Sue contacted the mental health team, April was always a hard time for Danny as it coincided with his child’s birthday.

Sue remembers that Danny’s father was with him because she was at work, but Danny sent her messages saying he didn’t know why he felt so bad and asked her to come home. By the time she arrived she witnessed Danny in what she described as a mix of an autistic meltdown and psychosis

“He definitely was not himself”.

The Crisis Team refused to come out to see Danny. They wouldn’t visit if he’d used alcohol or was in any way aggressive. They were of the opinion that Danny wouldn’t cope in hospital because of his autism, so they refused to come out.

After his bike accident and quitting college, Danny had got into the gym. Danny didn’t do things by half, he didn’t just like to work out a couple times a week, no, Danny got into Strongman and Power Lifting. In 2015/16 he was an EU Champion in his category, he broke records, he represented England in the Four Nations at the end of 2017 and had qualified for the Commonwealths in early 2018.

Consequently, Danny was a big strong guy and Sue knew if his mental health continued to deteriorate that day they’d need help. She called the police and warned them that she may need their assistance. Danny had gone to the garage, returned to the house and locked himself in the bathroom.

Sue knew something had happened but didn’t know what. They got access to the bathroom where Danny had self-harmed. She held him tight, pressure had always helped. Danny got up and smashed his arm through an indoor window. The ambulance would not come out unless the police were in attendance.

The police couldn’t section him because he was in his own home. They attempted to move Danny to a police van and in the process he accidentally kicked a police officer. Sue is keen to point out this was not an aimed kick, it was not done in malice, but in total distress. Danny was arrested for assaulting a police officer.

Sue begged the police officers to get Danny seen by a doctor and they promised they’d get him medical attention back at the station. He’d taken two or three nights worth of his prescribed medication and some alcohol. Sue describes the indignity of Danny being stood outside his home, in his underpants, waiting for a police van to arrive.

The next day Sue went to collect Danny from the police station. This was what she found:

“He was broken. No-one had seen him that night. No-one saw him until the next day. The doctor didn’t assess him. He said the nurse had just kept looking at him”.

Sue emailed the Youth Mental Health Team. No-one responded.

They hadn’t discharged Danny completely, they just didn’t have a care coordinator for him. It took a week to ten days, Sue can’t remember exactly which, for someone to come and see Daniel. Even then it was someone who didn’t know him.

Sue had made a formal complaint to the mental health trust in 2016 reminding them of the NICE Guidelines and comorbidity between autism and mental ill health.

Eventually Danny had a meeting with the mental health trust on 17May. The member of staff was just back from long term sick and Sue said she was kind, but you could tell she wasn’t really ready to be back at work. She seemed out of her depth. Sue is incredulous at what happened next:

“Danny said ‘I need help, I need proper help’. She offered him a phone app, two phone apps.

I mean mindfulness might have helped Daniel, but not when he was in crisis”.

A mindfulness app.

In an attempt to keep himself busy, and in the absence of any meaningful support from professionals, the gym had become Danny’s solace.

“Lifting was his passion. He became so knowledgeable about it, he studied, self taught again. He learned what muscles were where and how they worked. He coached people through his Instagram page and at his local gym”.

When an opportunity came up to buy the gym that Danny trained at the family decided to buy it.

“It’s not a big gym but we thought it would be enough to keep him going, but obviously it wasn’t”.

Running the gym did provide Danny with a purpose and an opportunity to help others. Sue shared a message that Danny had sent to a friend shortly before his death.

“I enjoy helping. Seeing people achieve what they can is what I like. I’ve been at the bottom and it’s not nice so keeping people on the right track and pushing them to where they want to be is all I want to do. Even if it’s not in the gym, helping people be the best version of themselves is what I will help do. In return it helps me be the best version of me I can be. Positive mental attitude and drive is all you need. Doing the best you can and not expecting anything in return will only lead to happiness. By doing that the people in your life which are worth your time will do the exact same thing for you. Unnecessary people will fade out before you even notice. Do what you enjoy, and you will enjoy what you do. All bad vibes will be dismissed and replaced with positive achievements.”

A month later, on 17 June, one of Danny’s friends alerted one of his brothers to an Instagram post he was concerned about. Danny had left the pub earlier that evening in a good frame of mind. Sue and Danny’s two younger brothers went to the house. He’d locked all the doors and left the key in the door. They broke in and found Danny on the sofa:

“He looked like he was asleep on the sofa. I thought for an instant he was asleep, but then we realised he wasn’t just asleep”.

Sue describes starting CPR with Danny’s younger brother, Jamie, as Danny’s youngest brother, Elliott, rang for an ambulance. Paramedics reached them in a matter of minutes and worked on Danny for over an hour. They had found multiple prescription and over the counter drug blister packs.

“I sat there with Danny that night, me and Jamie both said it wasn’t a matter of if, it was when, we knew it was coming.

He’d waited for that opportunity, the fact that it was Fathers’ Day was the final straw for him. He’d researched the dose of what he wanted to take.

He said he thought about suicide every day.

I think he was just overwhelmed that night. He didn’t have access to his child, it was his third Fathers’ Day without them.

He had an Education, Health and Care Plan assessment in 2016 and he got not one minute of provision in that plan. He was rejected by social care for support, they said it was the job of mental health”.

Since Danny’s death Sue has set up a charitable organisation in Danny’s name Lift Loud for Danny and she has just taken on a permanent role as Advisor for Suicide Prevention at the mental health trust responsible for Danny’s care.

 

Next week, she will represent her family in court, at Danny’s inquest which is taking place on Monday and Tuesday.

When I asked Sue what she is hoping to get out of the inquest, she is crystal clear on her intentions. She wants Danny’s death to receive a suicide verdict, not a drug related death. She is mindful of the task ahead of her, but believes she has enough evidence to prove Danny’s intent.

She is also hoping for some form of Prevention of Future Death narrative:

“that is wide reaching, including not just Norfolk and Suffolk NHS Foundation Trust, but also social care and education services.

Suicide prevention is everyone’s business”.

I’ll be live tweeting on @DannyInquest. Danny’s inquest is due to last two days.

2 comments on “Lifting expectations; a legacy for Danny Willgoss”

Dean says:

I was diagnosed with ASD in adulthood having lost my job through MH illness and found little help or understanding. The actual report that referred me into services notes the suicidal ideation stating it was ‘serious’. NSFT have never provided an adequate course of treatment and my last contact with NSFT was surreal. The team were less concerned with my illness and more concerned with aquiring me as a Peer Support worker, proffering me a Recovery College brochure. Subsequent agreed contacts were not adhered to by NSFT and a complaint to psychologist that care co was acting illegally led to being told ‘maybe they(NSFT) couldnt provide care’. A meeting was arranged between care co, psychologist and myself. I was the only one to turn up. I was subsequently discharged by letter. Recovery College offer was revoked as they alleged i was too aggressive, though that seems to be purely on the basis of them disliking my use of the word ‘fuck’. In response my relative, who had prev worked at NSFT, took me to one side to tell me that on a daily basis as a practising psych at NSFT they were subjected to ‘far worse language and behaviour than you come out with’. They then said that, despite three separate assessments that stated services were required, all my care would be provided by Social Services, who had previously said i was too competent for social care, that they were legally barred from providing psych care and also that NSFT had failed to provide any sense of what care i might need, that NSFT believed Social Services should provide. In fact NSFT had not contacted Social Services at all concerning me or my care. A complaint submitted 2018 went unanswered until a complaint was submitted to WSCCG in 2020. The response when it came consisted of single sentence answers to a paragraph of complaint. It fails to name the exec who breached DPA and handed my personal data out to third parties who the used it to contact me on my home phone number. It fails to name the drug they allege me to be using or addicted to. It does put into writing that all care to be provided by Social Services having told me in 2018 that, despite years of claiming they not only could provide care they would, they wouldn’t be and ‘never intended to’.
Its now 11 years since referral and i was informed shortly after my 50th birthday that due to length of time unemployed and now my age im unlikely to ever hold a f/t position again. 11 years plus the 15 to come, of lost income, my health in pieces, the knockon effects to my now failed social life and ability to cope, with housing, self care, the nil interest in hobbies that sustained and relieved stressed.
NSFT was informed, shown evidence, some years ago of the lethal effects of Radical Redesign. That its patient unexpected death rate had doubled and over 500 patients had died in a five year period. It doesn’t care. I truly believe that having looked at its patient lists whilst bleating that they dont have the funding, NSFT has split patients into deserving and undeserving groups and decided that a large number of patients are to be left to fester and die, whilst it funnels funding to non jobs ie PPL and individual pet projects like Psychology in Schools Teams, whereby preferential access and treatment is offered to a group never referred to NSFT for care as majority have never experienced serious mental distress, purely on the basis of their age which seems to me to be a i direct breach of the Equality Act.
I’m left wondering how many patients are similarly abandoned and how many NSFT are willing to have die through it’s neglect.

Michelle Flynn says:

I’m crying as I read this.
I have 3 children diagnosed with ASD.
My children’s mental health is my biggest concern.

Your son was a beautiful man who was repeadily failed by the system.

Thankyou for sharing. I have been questioning what I’m doing with my own children (16,13 &7). As I lie here at 4am, your experience has given me the drive to fight harder & longer…
As parents that’s all we can do.

You did all you could do. You know that.

I’m so deeply sorry for your family. Thinking of you all.

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