Mother of Norwich patient says schizophrenic son could have been saved and blasts mental health services
The last time Sheila Preston saw her son alive was Christmas 2014.
Almost two years later, two police officers knocked on her door at 1.30am at her home in Mendham on the Norfolk-Suffolk border.
They had come to tell her Leo had been found dead in his Norwich flat.
The 39-year old, who died from a suspected heroin overdose, had been battling schizophrenia for 20 years, having developed mental health problems in his late teens.
But until the last years of his life he had managed well with his illness, his mother said.
Mrs Preston said paranoia from his schizophrenia worsened after Christmas 2014 and he cut off contact with his family.
“It was a terrible shock when he died,” she said. “I wanted to keep him safe. I wanted to care for my son. He was 39 but to me he was still a boy who had not been able to live his life how he really wanted to.
“I think Leo could have been saved. I’m so angry.”
She said the decline in his condition coincided with the aftermath of the “radial redesign” at the region’s mental health service, the Norfolk and Suffolk Foundation Trust (NSFT), which saw beds and staff numbers cut.
“Up until the radical redesign, he was stable and we were not worried about him,” she said.
But then the community team dealing with Leo, called assertive outreach, was dismantled.
His paranoia worsened and he cut himself off from his family.
Mrs Preston and her daughter Alex no longer knew what care he was getting or how he was doing but sensed his condition was deteriorating.
She said she had “begged” the NSFT, where she is a governor, to get an inpatient bed for Leo. He was assessed twice but not given one.
She had no idea he had taken illegal drugs other than cannabis. “If I had known may be I could’ve helped,” she said. “Because of Leo’s paranoid thoughts he didn’t want anything to do with me.”
Mrs Preston said data protection meant she could not get any information about Leo’s treatment or condition after he disengaged from the family.
“I don’t think people always have the mental capacity when they are unstable with paranoia to decide,” she said. “Why should I have to wait until he died to find out what was happening? It is ridiculous.”
A few days after her son’s death in November 2016 she entered his flat on William White Place off Kett’s Hill in Norwich.
The cooker was broken and his last meal appears to have been a can of cold chicken soup from Happy Shopper drunk from a pint glass.
“Leo was the most loving, educated, polite caring, intelligent person I knew,” Mrs Preston said. “He was a lovely person, a selfless son, a son that I was proud of.
“He used to tell me, ‘when you are old I will come and look after you’. He would text me every day saying ‘I love you mum’.”
She found out her son had mental health issues when he was in his second term of studying politics and philosophy at the University of East Anglia 20 years ago.
“He phoned me and said ‘come and see me’. He was in the Ziggurats. He told me he had been in hospital. From then on my whole life has been around him.”
Since then she has involved herself in the region’s mental health services and has spoken out as a governor at the NSFT about bed and staff cuts.
“When Leo became ill it took over my life,” Mrs Preston said. “My involvement in the Trust was not only trying to get the best services for Leo but for the many thousands of people out there like Leo.”
The family is unsure when he was last seen by anyone from the NSFT as the last record they have of contact is September 2016, two months before his death.
She has kept his books and files, including a folder were he made a list of 84 symptoms of schizophrenia he was experiencing. “I don’t feel in control of my life and body,” he wrote.
He also listed his aspirations and ambitions which ranged from playing hockey and learning to snowboard to understanding his mental illness better.
He kept diaries which Mrs Preston hopes to write a book from, detailing how her son had hoped and wanted to get his life together but how he lost hope.
“For me this has not ended with Leo’s death. It makes me all the more determined to do all that I can. He is just one of many.”
Dr Jane Sayer, director of nursing, quality and patient safety at the NSFT, said: “We cannot comment on individual cases; however, our thoughts are very much with the family of Leo Jacobs and we have met with them to offer our most sincere condolences.
“We take the death of anyone who has accessed our services very seriously, are carrying out a thorough investigation and await the outcome of the inquest.”
•NSFT on Panorama
Mrs Preston featured on BBC One’s Panorama on Monday night which looked into problems at the NSFT.
After the show was aired, the NSFT’s chief executive, Michael Scott, pictured, said: “Our staff do the very best job that they can every day for local service users, carers and families, under the immense pressures which are facing the NHS and mental health services right across the country.
“Their dedication in helping to turn our trust around is ceaseless and we remain extremely proud of what they have achieved so far.
“We may still not get everything right all of the time, but we are a different organisation to the one we used to be.
“Looking to the future, the safety of our services remains paramount and central to how this trust will continue to operate.
“We need to continue to raise the bar on quality and there is still work to be done.
“We have not ignored that, nor are we afraid to face it.”
Mrs Preston said the deterioration in her son’s schizophrenia came about after the community team looking after him - called assertive outreach - was dismantled.
She believes it meant he was seen less by carers from the NSFT.
The scrapping of assertive outreach teams has been a major point of contention between some mental health campaigners and the NSFT who argue it means there is less support in place for patients in the community when their condition worsens.
In place of assertive outreach teams, something called a Flexible Assertive Community Treatment model (FACT) was introduced.
The NSFT said this meant their teams on the ground could increase the support a patient gets if they appear to be escalating.
Mrs Preston said this did not solve the problem of a lack of beds and a lack of staff which meant high caseloads for workers.
•Leo’s sister Alex is running the London Marathon for mental health charity Mind. Sponsor her at: http://uk.virginmoneygiving.com/alexandramabbutt