‘What people need is support and understanding’ - Sister of mental health patient Neil Jewell speaks out over the care he received before his death
- Credit: copyright ARCHANT 2017
A family has described the 'seven year period of spiralling decline' a man suffered before sustaining fatal injuries while under the care of the region's mental health trust.
Neil Jewell, 42, of Philadelphia Lane, Norwich, died on January 17, 2014, while sectioned under the care of the Norfolk and Suffolk Foundation Trust (NSFT).
A jury inquest this week identified failings with the way Mr Jewell was cared for.
But Mr Jewell's sister Christine Welfare, and his brother-in-law Edward, said that while the inquest only focussed on the 10 days before Mr Jewell's death, there had been issues for quite some time.
Mrs Welfare, 57, said: 'The cause of Neil's death was agreed to be bronchopneumonia, resulting from cardiac arrest and irreparable brain damage. However, in terms of our experiences with Neil's care under the trust, this actually goes back to 2005.'
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Mr Jewell had been diagnosed with paranoid schizophrenia in his late teens/early twenties, while living with his mother in Surrey.
And it was after Mrs Welfare moved to Norfolk to raise her family, he and his mother soon followed to where they lived in Alysham.
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Mr Jewell had trained as a plumber and held down a few jobs, but due to his social skills and the increasing fragility of his mental state, he found interaction with his work colleagues more difficult.
'He wasn't treated, on many occasions, with kindness and understanding,' Mrs Welfare said. 'He suffered what can only be described as bullying. People could not see or appreciate what he was trying to cope with.'
But Mrs Welfare, a retired school secretary, said in 2005 his behaviour became more difficult, he could not hold down a job and their mother could not cope.
'The family GP made arrangements to admit Neil to Hellesdon Hospital,' she said. 'Following sectioning and a short stay in hospital, a psychiatrist made an ill-informed decision to discharge him to interim bed and breakfast accommodation, whilst permanent accommodation was being sought.'
Mrs Welfare said because of his illness, her brother had never developed any life skills - he could not cook for himself, and would need prompting to do other tasks.
So when he was moved into the accommodation near Mousehold Heath, he was living off pre-packaged sandwiches from a nearby petrol station.
Mr Welfare said he knew the mental health workers looking after Mr Jewell did not understand his condition, when they gave him a map to get to the Tesco store in Sprowston.
'Neil could not read a map,' he said. 'He would think the blue lines we know as roads were rivers.'
Mrs Welfare added: 'The psychiatrist paid little attention to family concerns, and came across as quite arrogant.'
The pressure got too much for Mr Jewell, who took an overdose. However Mrs Welfare wasn't told this, and only found out when she went to visit him and was told an ambulance had come to get him.
'He had a black KA at the time, and I remember going and picking that up and driving it home in floods of tears,' she said.
After this, Mr Jewell was sectioned and readmitted to Hellesdon Hospital for around four months, before being moved to Oak House, a halfway house where the aim was to encourage residents to learn life skills.
However, Mrs Welfare said
'In my view, this had mixed results for Neil,' Mrs Welfare said.
'On the one hand he was able to make a group of small friends and interact with them, but he made little progress in his preparation to live independently in his next home.'
She said on one occasion, she had taken Mr Jewell and the friends he had made the Sheringham for the day.
'I wanted to show him look, you can be normal, you can have friends.'
But she also felt he had been left to his own devices.
'For example, his bedding had not been changed for over a year and he was no more capable of cooking a simple meal,' she said.
After around 18 months, a flat in Norwich became available and Mr Jewell's family helped him move in.
But Mr Jewell had an increase in auditory hallucinations, combined with homesickness and isolation.
'He was becoming paranoid about his neighbours and again he took an overdose in February 2009,' Mrs Welfare said.
A review saw Mr Jewell's medication increased, and a community support worker assigned. But the hallucinations worsened and he was prescribed Clozapine.
'This is a potentially dangerous drug and usually only used when other treatment has proven to be ineffective,' Mrs Welfare said.
'On this occasion in May 2009, Neil was admitted to hospital for 16 days for the introduction of Clozapine to enable close monitoring.'
This was successful and this - combined with a care co-ordinator, Mrs Welfare said her brother's life had 'a sense of purpose.'
She said: 'His support worker really put a lot of effort into getting to know Neil. He visited him regularly in his flat and would help him plan a rota for the week to include shopping, laundry and social outings to Norwich to meet up with a group of men with similar issues.
'He was even able to go on a camping weekend with the group to Cromer. This period of his life was, for Neil, relatively happy as he was receiving regular support and guidance from a very key person, his care co-ordinator.'
But this went downhill, when Mr Jewell's support worker was made redundant in 2012.
'This was directly linked to cuts in the mental health budget,' Mrs Welfare said. 'In Neil's case he lost his care co-ordinater - effectively he lost his lifeline.
'From that point, we saw a decline in his already poor social engagement; no-one from the community contacted him or visited him. He did not even know who his new care co-ordinator was and, more importantly, whom he could contact in an emergency.'
By July 2013, Mr Jewell was taken off the Care Plan Approach, a way to plan people's mental health care.
He was also taken off anti-depressants.
'Within a few weeks we began to notice physical change in him, for example loss of weight, poor personal hygiene and lack of self care.'
In January 2014, Mr Jewell ran out of Clozapine. The Clozapine Clinic at 80 St Stephen's, Norwich, had been closed in November 2013, and since then Mr Jewell had been walking at least an hour each way to Hellesdon Hospital to collect his medication.
When he ran out, he still made this walk.
'This was a typical wet and cold winter's day, but he knew he still had to get to the clinic,' Mrs Welfare said.
But when he arrived a member of staff, who had known Mr Jewell for nine years, recognised he was very unwell.
'This was brought to the attention of his new care co-ordinator,' Mrs Welfare said. 'This was the first time they had met and this person had no prior knowledge of him or his medical history.
'Following a very superficial discussion, a decision was made to send him to a nursing home instead of a hospital environment to commence the re-introduction of Clozapine.
'This was, in my view, the most serious error of judgement that could have been made. In hindsight, I wish I had challenged it, but I have to live with that.'
But Mr Jewell was not taken straight to the nursing home - Hamilton House, in Catfield - which was chosen as NSFT had no beds themselves.
Inspectors warned in 2011 that improvements were needed at Hamilton House and in 2015 it was rated as 'inadequate'. The home has now closed.
Instead, he was sent home and picked up by taxi the next morning, having spent all night awake panicking.
But when he was at the home, his mental health worsened. He was prescribed Haloperidol and Lorazepam which kept him subdued during the day, but when the nights came Mr Jewell would bang his head against the wall, and was harming himself.
Mrs Welfare went to visit him and found him 'sitting out the back in the dark, rocking and rabbiting about job interviews. I just stood there looking at him but his eyes were closed, the more I spoke to him the louder he was. He was worse at that stage than he had ever been.'
Eventually, on January 11 the police were called and a mental health practitioner and two doctors arrived to assess Mr Jewell and section him under the Mental Health Act. He was taken to West Suffolk hospital, and then to Ipswich Hospital, laid face down on an ambulance stretcher with his arms and legs restrained.
He was placed in a seclusion room under constant observation at Ipswich Hospital's Woodlands Unit.
But Mrs Welfare said: 'I have been horrified and appealed to discover that the one-to-one intensive nursing through the night recounted to me by telephone was in fact monitored externally from CCTV.
'Neil had been successively rapidly tranquillised, locked in seclusion throughout the night without access to water, and left lying face down on a mattress on the floor, as it was felt he needed to sleep.'
It was only on January 12, when the duty nurse became aware that Mr Jewell had not moved from his face down position for more than 10 minutes, that they entered the room.
And when they turned him over he was unresponsive.
By the time a crash team arrived and managed to restore Mr Jewell's heart beat, he had been left too long without oxygen to his brain.
And at the inquest, it was explained by a pathologist that Mr Jewell's noisy breathing – which staff took to be loud snoring – was in fact the early signs of postural asphyxia.
'When I was telephoned and told what had happened, and I asked how long he had been without oxygen, I knew from the answer that he was most likely brain dead.
'I just collapsed on the floor, I couldn't accept it. I was just saying 'he can't be dead, he can't be dead'.'
Mr Jewell was moved to intensive care, and Mr and Mrs Welfare visited the next day.
'There he was, just lying there. I can remember trying to stroke his arm and not hurt him because he had the cuts from the handcuffs. He had all these bruises.
'I was grief stricken to see the physical state he was in. His arms were badly bruised due to his self-harming and he had grazes on his head where he had been head-butting walls in an attempt to rid his mind of the dreadful voices in his head.
'Even then I couldn't accept it, I said 'come on Neil, wake up because you need a good shave', I still thought he would be okay.'
Mr Jewell remained unresponsive and on life support throughout that week, but on Friday the family was told he had irreparable brain damage.
'Having his life support switched off that evening was so incredibly traumatic and deeply affected us all. We returned home utterly in pieces.'
After Mr Jewell's death, Mr and Mrs Welfare sought a civil prosecution in April 2015.
'As the trust very quickly offered to settle out of court, the actual inquest has always been very important to me as first and foremost, it has provided the opportunity for Neil's voice to be heard and for the trust to be open and transparent about the events leading to my brother's death,' Mrs Welfare said.
'It is no exaggeration to suggest that the cost of this case has quite likely run to millions of pounds. If a fraction of this had been used to treat Neil in a proper hospital facility, we would not be here where we are now – without him.'
Mrs Welfare said she wanted her brother's legacy to be for the government and NSFT to take notice of the implications of funding cuts to mental health hospitals.
She said they had taken some comfort in the work of the Safeguarding Adults Boards in Norfolk and Suffolk, which bring together different agencies to actively promote effective working relationships between different organisations and professional groups
She added: 'It affects everybody; we can all suffer mental illness. What people need is support and understanding.
'Neil was a son, brother and uncle to us and he is very sadly missed.'
'We have fully learned our lessons from this case'
Dr Jane Sayer, director of quality and nursing at Norfolk and Suffolk NHS Foundation Trust, said: 'Our thoughts are with this patient's family and friends. This was an extremely sad situation, and they have our deepest sympathy.
'We fully take on board the recommendations of the Coroner and the findings of the jury and we unreservedly apologise for what has been deemed as our Trust's part in the contribution to this patient's death in 2014. The care provided was not acceptable and is not the standard of care we would offer to patients in our services today.
'We have fully learned our lessons from this case and over the past three years much has changed at NSFT.
'Since the patient's death, and following our own extensive internal reviews into what went wrong we introduced immediate measures to put things right to avoid this happening again. This has included ensuring that our patients based in the community always have a named mental health professional or duty worker coordinating their care, to offer greater support.
'We have invested in increasing the capacity of our community mental health teams, and have held a complete review of our Crisis Resolution Home Treatment teams (CRHT) to ensure they can provide patients with adequate support and assessment.
'At NSFT we have also already reviewed our rapid tranquilisation policy and improved training for our staff, and introduced advanced training for our staff to identify and avoid risk of postural asphyxia.
'Our Trust is a different organisation with different leadership today. Over the three years since this tragic death took place we have strived to always keep the patient at the centre of our services and we will do so into the future.'