Farming family fight to beat mental health stigma

Two years on from the loss of their daughter, Nigel and Diane Barnes have spoken to Farmers Weekly about overcoming the stigma surrounding depression and suicide. Hayley Parrott reports.

We want to do whatever we can to prevent anybody else ever going through what we’re going through,” was one of the first things Nigel and Diane Barnes said, as they spoke to Farmers Weekly about the tragic loss of their daughter Elizabeth.

Elizabeth, known as Lizzie, is described by her parents as “intelligent, beautiful and articulate”. They know that, in shock at the news of her death, people would have said: “But she had everything going for her,” yet crippling depression meant Lizzie didn’t see it that way and, to the devastation of her family and friends, on 6 December 2012, aged 20, she took her own life.

See also: Dealing with depression: Farmer speaks out

Suicide remains the main cause of death in young people – male and female – under 35 years of age. Nigel and Diane, who farm 526ha of arable, half owned and half contract, in Westoning, Bedfordshire, have experienced first-hand the devastating impact of this shocking statistic.

Just like physical illness, mental health problems can range from mild to serious. Most people who suffer a bout of psychological illness will make a complete recovery. Anxiety and depression are very common and can be successfully treated. Depression, however, can kill – if suicidal thoughts get the better of you.

They have two other children, Lucy, 19, and Philip, 17, and Diane says: “If it can happen to a family like us, it can happen to anybody. We were a normal happy family.”

While Lizzie was never fully diagnosed, it was clear to her family that she was very, very ill. “We genuinely feel that Elizabeth had what you would call clinical depression,” said Diane.

Lizzie, who was an active member of Silsoe Young Farmers’ Club in Bedfordshire, taking part in all it has to offer from the rallies to the parties, enjoyed horse riding and was studying food science and nutrition at the University of Nottingham, started showing signs of illness two years before her death.

Initially, she seemed quiet and run down and so she had blood tests and visited the doctor, but nothing was diagnosed.

“When you’re a mum, you get a gut instinct,” said Diane. “And I knew that there was something wrong but I couldn’t tell what. Friends and family said: ‘It’s OK, she’s just growing up.’

“She was very quietly spoken and she slept a lot, but she wasn’t antisocial.

“I worried that it was my fault and blamed myself, as mothers do. At first, I thought maybe it was just my relationship breaking down with her, so I tried to give her space and tried to appear to be relaxed about the situation.”

Lizzie chose to go to university, completed her first year at the Sutton Bonington campus of Nottingham University and returned home for the summer. It was then that her family realised her situation had deteriorated. That August, Lizzie made her first attempt to take her own life, but was fortunately interrupted.

After being cleared by mental health professionals, Lizzie returned to Sutton Bonington for her second year.

She went home in the October to take part in the Young Farmers’ ploughing match.

She won the novice girls’ competition, but family remember that she showed no excitement.

“Her emotions had dulled, she didn’t even seem that pleased. And even when our nine-month-old puppy died, she didn’t seem to grasp why we were all so upset – the emotions just weren’t there,” said Diane.

At the end of November and in early December, Lizzie made two more attempts to take her own life, ending up in hospital after each of them.

After each hospital admission, Lizzie was discharged, free to leave. On 5 December 2012, Lizzie was offered readmission to the mental health unit, however, by this time she, and her parents, had decided this was not helping her and it would be best to go home.

Nigel and Diane had begun discussions to get Lizzie private medical help at this point as they felt they were not getting the support they needed from the NHS.

That night, the whole family knew that Lizzie needed to be closely supervised, so she slept in her parents’ bed with Diane, while Nigel slept on a mattress up against the door so that even if she wanted to leave the room she couldn’t. They even locked every window.

On 6 December, Lizzie was in the house, with family members at all times, waiting for a “crisis team” to arrive to discuss next steps. When she was left alone for just a few minutes, she disappeared from the house.

“We knew then that she had gone and that it was unlikely we were going to get her home alive,” says her mum. That was the day that Lizzie was successful in taking her own life.

The Barnes family feel very let down by the treatment and lack of support that they and Lizzie were given by the hospital and mental health professionals they saw.

Lizzie spent some time in a local mental health unit, but Nigel and Diane say it was not suitable for such a young person and, because Lizzie had no diagnosis or treatment plan, she actually saw the other very ill inpatients and started believing that she would become like them.

At the inquest into Lizzie’s death, the South Essex Partnership Trust (Sept) admitted to some failings and produced an action plan with changes it could introduce as a result, including “communication with carers needs significant improvement” and “a nurse will no longer be able to discharge a patient without consulting with a psychiatrist first”.

“When people ask me my advice to other parents who might find themselves in our situation, it paralyses me.”
Diane Barnes

Nigel and Diane worked closely with them on this and are hopeful that improvements will be made. They believe the trust is trying to get funding for a new building to function as a mental health unit specifically for young people. “Since the investigation into this event, mechanisms have been implemented to ensure all learning has been fully addressed,” said Sept in a statement given to Farmers Weekly.

“I would say to others – don’t be afraid to seek more help and challenge the system,” says Nigel.

“As Lizzie was over 18 we often got the impression from the GPs and the mental health system that we were not entitled to be involved in her care.

“We discovered afterwards that this is absolutely not the case and carers have every right to discuss diagnosis and treatment unless the patient specifically refuses.

“The problem was Elizabeth didn’t think she was ill. If she had known she was ill and that, with the right help, there was light at the end of the tunnel, there could have been a different outcome”.

But Nigel and Diane feel she was never given that reassurance or hope by the professionals who treated her and her parents believe, as a result, she felt she was having a negative effect on those around her and would be doing people a favour by ending her own life.

Diane believes it as “the grain of ‘I can get better’ that gives you hope”, something she feels Lizzie never received.

The family were never pointed towards charities such as Mind or Papyrus which are there to help individuals with mental health problems, and their families.

Nigel, Diane, their family and friends have since raised thousands for these charities, the total somewhere about £35,000, and want to raise more awareness of the charities’ work.

One recent fundraising adventure saw them complete the London to Paris cycle ride. Lizzie’s cousin Emily, who came up with the idea, her mother Mary, Diane and Lizzie’s brother Philip completed the “challenging but doable” bike ride and have so far raised £11,000 in sponsorship, to go to Papyrus, a charity for the prevention of suicide among young people.

Papyrus’ chief executive Ged Flynn told Farmers Weekly: “The support we have received from the Barnes family in memory of Lizzie is amazing, helping us to raise awareness that suicide can be prevented and extend our work with young people in schools and the community, encouraging them to talk about mental well-being and, above all, to seek help when they feel they are not coping.”

He said that nothing must diminish our resolve to prevent young suicide and from doing all we can to enhance the emotional resilience of young people and those who care for them.

Diane says she hopes that anybody who might find themselves in a similar position to the one that they were with their child would know about Papyrus.

“It’s a bit like a Samaritans for young people,” she said.

Lizzie’s case is sadly not a one-off. According to Papyrus, every year in the UK, between 600 and 800 young people between the ages of 15 and 24 take their own lives – a number equivalent to the pupils in a small secondary school. Under the age of 35, that number rises to more than 1,600, equating to three to four a day.

As well as raising funds for such important charities, Diane says they see their role now is to be open, to share their story and to encourage others to talk about mental health problems. “Half the problem is that people don’t talk about it,” says Nigel.

“After the 6 December our kitchen was full of people for weeks and the number of people who tell you they’ve had mental health problems themselves is so surprising. But we never knew prior to that day.”

The stigma surrounding mental health problems seems to be a recurring theme whenever Farmers Weekly speaks to people affected.

The National Federation of Young Farmers’ Clubs’ national chairman of council for 2013-14, Claire Worden, saw this problem in young farmers and the rural community and so she developed the Rural+ campaign.

The aim of Rural+ is “to provide information and tools to encourage Young Farmers’ Clubs to become a strong support network for rural young people who may experience isolation and mental health issues”.

Claire, who received a Point of Light volunteering award for this work from the prime minister in October, said: “It’s a campaign that I feel extremely passionately about.

“I am delighted that the prime minister has recognised the importance of mental well-being among young people in rural areas.”

Nigel and Diane believe it’s clear that the topic needs more talking about in order to overcome the stigma so heavily attached to depression and suicide.

“When people ask me my advice to other parents who might find themselves in our situation, it paralyses me. We couldn’t save our own daughter,” said Diane.

“I sincerely believe that it may be that we all need to be a little more willing to be open when things seem to get difficult.

“You might think it will be all right but we would advise asking for help as soon as you can. And I just wish everybody would just be nicer to each other and recognise the good instead of failings.

“We’re going through horrendous grief but we have got joy in our life because we embrace the good bits.

“We would give up everything to have Elizabeth back. But she didn’t do this to destroy us, so we have decided to be positive.”

Dos and don’ts when helping people with depression

DO

The Alert acronym gives advice on what you can do to help someone suffering with depression:

Ask Talk to them about how they were feeling before it happened and how they are feeling now. Talking about suicide does not make it more likely to happen. Try to be patient if they are angry or refuse to talk. If they won’t talk to you, maybe they would talk to a friend or sibling. It may be that writing things down is an easier way for them to communicate with you.

Listen This is the most important thing you can do. Treat them with respect, and try not to be judgmental or critical. Is it important to try to raise their self-esteem?

Empathise Show you really do care about them, no matter what, and are trying to understand things from their point of view. Words don’t always matter. The touch of a hand or a hug can go a long way to show you care.

Reassure Help them understand desperate feelings are very common and can be overcome. Things can and do change, help can be found and there is hope for the future. People do get better.

Try to give practical support Where possible, help them to cope with any extra pressures. It may not be possible to deal with all the things that are troubling them, but between you agree on what you will do if a suicidal crisis happens again.

DON’T

The Panic acronym tells you what you might want to avoid doing when someone is suffering with depression:

Put them down Avoid doing things that might make them feel worse. A suicide attempt suggests that self-esteem is already very low.

Abandon or reject them Your help, support and attention are vital if they are to begin to feel that life is worth living again. Don’t relax your attentions just because they seem to be better. It doesn’t mean that life is back to normal for them yet. They may be at risk for quite a while.

Nag Although it may be well meant, nobody wants to be pestered all the time.

Intrude Try to balance being watchful with a respect for privacy.

Criticise However you may be feeling about their suicide attempt, try to remember the pain and turmoil that they were, and may still be, going through. Don’t take their behaviour personally – it was not necessarily directed at you.

(Source: Papyrus)