EDP: ‘What people need is support and understanding’ – Sister of mental health patient Neil Jewell speaks out over the care he received before his death

Geraldine Scott interviews Neil Jewell’s brave family in the Eastern Daily Press:

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.”

“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.

Norfolk and Suffolk NHS Foundation Trust (NSFT) refuses to admit it does not have enough beds and is now talking about ‘step-down beds’. Is this the return of B&Bs? Surely people like Neil Jewell deserve better than this?

Prompt and professional treatment in an NHS hospital and a caring, dedicated mental health worker enabled Neil Jewell to improve his life:

…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.”

Then one of the endless NSFT ‘Cost Improvement Programmes’ (CIPs) destroyed Neil Jewell’s quality of life:

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.”

NSFT neglected Neil to the point that we fail to understand how NSFT was not prosecuted by the CPS or HSE:

“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.

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’.”

How many more deaths? The number of deaths at NSFT has doubled in only four years.

“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.

Now, the shameful spin from NSFT’s Board:

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.

The Chief Executive of NSFT, Michael Scott, drummed his fingers on the table impatiently and chatted to the NSFT Chair, Gary Page, as we read out the summary of the Safeguarding Adult Review (SAR) into Neil’s death at the last NSFT Board meeting.

Jane Sayer remained silent.

Michael Scott refused to answer our questions properly and Gary Page ended the meeting half an hour early rather than allow more questions from the public.

We asked why NSFT continued to cut beds when it knew three years ago it didn’t have enough. We didn’t get an answer.

None of the NSFT governors or directors objected to the shameful behaviour or asked questions about Neil, bed closures or the rising number of deaths themselves.

“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.

Jane Sayer was the Director of Quality and Nursing when Neil Jewell died and she remains the Director of Quality and Nursing today.

The ‘lessons’ are far from ‘fully learned’.

“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.

A named worker is not going to save the lives of people in crisis like Neil Jewell. Without proper resources it is nothing more than a name in a spreadsheet.

“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.

The crisis teams are still more poorly-resourced than they were before the radical redesign and funding remains inadequate.

“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.”

Jane Sayer is still the Director of Quality and Nursing at NSFT.

Gary Page is still the Chair of NSFT.

Michael Scott has trousered more than half a million pounds in salary since Neil Jewell died.

If Neil Jewell’s support worker hadn’t been made redundant, Neil wouldn’t have been neglected.

If Neil Jewell hadn’t been discharged from CPA due to cuts, Neil wouldn’t have been neglected.

If there had been a proper local NHS psychiatric bed available for Neil when he experienced his crisis, he wouldn’t have deteriorated and died.

Even after Neil’s death and knowing the circumstances, NSFT has continued to close beds.

Despite the beds crisis deepening every year, NSFT refuses to acknowledge it needs more beds.

You only have to attend an NSFT Board meeting to see the truth. Genuine service user engagement and co-production is virtually non-existent at NSFT. The voice of the patient and carer is nowhere to be heard.

Join us to demand decent mental health services on the March for Mental Health on Sunday 30th April at 11 a.m. on Norwich City Hall steps.

Read Geraldine Scott’s excellent investigative article in full by clicking on the image below: