FOCUS: Schizophrenia – a family struggle

Tuesday 01 June 2021

A local father has called for more support and understanding for families touched by severe mental illness as he opened up about the challenges of looking after a son with schizophrenia.

Richard* shared his story to coincide with the recent World Schizophrenia Day and Carers’ Week starting next Monday.

Tom’s* (20) illness seemed to come out of nowhere.

He was happy enough, social and “very skilful” with a football, but, around three years ago, something began to change.

“He began withdrawing from friends, staying in his room, his eating habits changed,” Richard recalled. 

It was a trajectory that would eventually see him admitted to Orchard House for the first time after he became “catatonic” one day. “He was rigid, he wouldn’t respond to anything,” Richard explained.

Pictured: Tom has stayed in Orchard House several times.

Tom was taken to A&E before Orchard House – surroundings that the family would unfortunately become all too familiar with in the coming years. 

On other occasions, he presented “completely differently”. The trigger for Tom’s second Orchard House admission was extreme aggression – behaviour that has previously seen him break televisions, a cooker and dishwasher, punch holes in doors, smash staircases and even throw a table at his father as he tried to help.

But while the admission triggers have changed, the experience of Orchard House each time has been largely the same, according to Richard.

He said there was very little information provided in advance of the first admission – “you don’t get told a lot at the time, just that he’s going in and that it’s a mental health unit” – which was of little comfort to the parents.

Richard described the place itself as “a nightmare,” adding: “I know everyone keeps going on about how it’s changed, but there was very little there for him to do. His experience was dire, to be honest.”

Not only were there few activities to engage Tom, but, during his earlier admissions when he was still officially a child, he was also isolated. 

“Because of his age, he wasn’t allowed to mix, so he was just in a room.”

But Tom becoming older didn’t alleviate matters – for his parents, it posed another obstacle. 

Despite Richard and his wife making every effort to go visit Tom between working hours each day to find out how he was getting along, they said getting meaningful updates from staff about how he was getting along was extremely difficult.

“Communication to carers is very hit and miss, when someone is classed as an adult there is no obligation to inform the parent, guardian or carer as to what has been discussed, decided, agreed, etc, with the person you are caring for unless that person has given permission to do so and you can end up feeling very frustrated and excluded and left in the dark as to what is going on,” Richard explained.

“You are not actually allowed to even complain about lack of communication or anything else in connection to the person you are caring for as you are not the service user.

“I tried to raise issues and complain on the feedback page of gov.je and received a lovely email telling me so, I was however allowed to make suggestions so addressed what I felt were issues by suggesting ways they could be addressed or resolved.”

According to Richard, these communications difficulties were only heightened when he and his wife queried some of the treatment Tom had received, including a decision to forcibly return him to his room one day.

“After that, we felt that we were being avoided because we challenged what had gone on. That was the impression we got. It was very offish between us and the staff.”

One of the few times there was proactive communication from Orchard House, Richard claims, was when his wife received a phonecall, asking, “Is Tom with you?” He had been for a walk with another resident, who had to be taken back to the facility for misbehaving. Tom was determined to finish his walk and was allowed to do so alone. When he did not return to Orchard House as expected after a while, it was his mother that went to go and find him.

Each time Tom completed a stint at Orchard House, he was discharged into his parents' care – each time, still leaving with the belief that he was not, in fact, ill. 

Richard and his wife felt underprepared, with no ‘instruction manual’ or proper training on how to best care for someone with a severe mental illness.

“The advice you're given [for dealing with someone in crisis] is to take the person to the A&E department at the hospital - good luck with persuading the person you love and care for, the person falling apart before your eyes, the person you want to take there because you cannot help them, the person who doesn't know they are ill, to go to hospital for help.

“The way I look at is, how can you expect someone who does not think they are ill to ask for or agree to receive help for a problem they don't think they have?

“The alternative to you taking them to A&E is the Police get called to take them. This is advised for you to do if you feel unsafe and also occurs if medical professionals attend your home and decide admission to a mental health ward is required.”

Richard continued: “​This act adds to the emotion of the situation and, believe me, has a profound and lasting effect on the person in crisis and family members – I still get accusations of having him arrested.” 

Pictured: Richard explained that it was painful to him that his son believes he had previously requested his arrest, when he was trying to keep him safe.

Tom is currently residing at home and mental health services remain in touch, but the family don’t think the support offered is enough. They say that getting through to anyone on the phone for help out of hours is near impossible.

A care coordinator also visits once a week, although Richard was recently disappointed to learn of plans to change this individual at short notice.

Since Tom returned home, his parents have largely felt like they’ve been going it alone, effectively having to become fluent in two new languages – medically speaking and in Tom’s own – and spot and act on red flags.

“Part of the illness is he doesn’t think he’s ill. He will talk to you and none of it makes sense because what’s going on in his head doesn’t transfer into speech that you can understand. It’s very garbled, there are strange words in there, and it’s disjointed, but obviously he doesn’t realise that. To him, what he’s saying in his head and what’s coming out his mouth, you should be able to understand it,” Richard says.

“He does not know he is ill and all the talking, discussing and even arguing with him about it does and will not change that. ‘There's nothing wrong with me', ‘I'm not ill’ and 'You have brought these people round here' are regular statements he will make,” he adds. 

This belief can pave the way for tense exchanges or even threats. 

Richard explained how, following a recent disagreement over potentially unhealthy friendships, Tom had been repeating the phrase “big man” to him – “basically, telling me he was going to knock me out." Such comments, he reflects, are hurtful to hear when he is doing his best to assist. 

Thankfully, Tom does usually take the medication prescribed for him, although it isn’t “a case of ‘here you are' and he takes it - on occasion it has taken up to 2 hours to persuade him to do so.”

“We have had more than one discussion where he has said it's doing nothing for him and considering he is on his third different medication trying to find something that works and gives him a better quality of life, we have learnt to listen more to him as it has been proved more than once, that although he may not be the best judge of what is best for him, he does know what makes him feel better.

“It really is a balancing act of assessing his opinion, what we observe and also physical evidence, blood tests for any apparent side effects.”

The constant uphill battle to protect Tom’s best interests, while also working hard to convince him of that, has taken a significant emotional and physical toll on the family.

That burden has, however, been slightly alleviated more recently with the help of new local charity Focus on Mental Illness, which is providing family therapy.

It’s built around the premise that family and friends play a key role in monitoring a person’s mental state, spotting signs of relapse and ensuring they take their medication and attend medical appointments.

While NICE guidelines state that it should be offered as standard to the adult relatives of those with schizophrenia, it was not something previously available in Jersey. 

However, Richard and Tom’s family have been able to benefit thanks to generous funding from a local family who understand how schizophrenia affects families.

Focus on Mental Illness is now asking the Government if it will fund two full-time staff to provide this therapy on a long-term basis for the family, and is awaiting a response.

Pictured: The charity has asked the Government if it will fund family therapy.

That’s not the only thing Stephen thinks could be done to better support those with serious mental health conditions.

“There is so much more Jersey could do. Orchard House is absolutely not the place for 17 to 18-year-olds to be going into with schizophrenia. Also with our younger people services, we do not have the expertise in Jersey for working with illnesses like schizophrenia in their early stages, apart from when they get to 18 and they get access to people… there’s a massive gap here and unfortunately what you’re hearing is the very real experience of a family that have had to go through this. I can say, in all the years I’ve worked in mental health, unfortunately this is something I’ve come across many times,” explained Focus’ founder Stephen McKrimmon.

He also believes the island could benefit from introducing carers’ legislation, which would “empower” them by giving statutory rights to certain levels of support.

“Think about how much money carers save us. You need to be looking after them,” Stephen added. 

While such actions remain in the Government’s hands, there is still plenty we as a society can do to better support individuals and families touched by serious mental ill health.

The best thing, he says, is to help shatter the stigma by taking time to learn about different conditions and bust myths rather than believing stereotypes  – “find out about them, listen to people who have that experience with an open mind.”

Above all, he urges empathy: “Remember, [Richard’s] son could be any of our sons.”

*Names changed to protect anonymity.