When the north's only charity for mental-health carers launched its first manifesto earlier this month a Co Down man movingly spoke of what it is like to look after his mentally ill and suicidal wife full time. He told Gail Bell their story
WHEN Cause - the only Northern Ireland charity for mental health carers - asked one of its members to say a few words at the launch of the group's first manifesto recently, even organisers were taken aback by the impact.
In his characteristically candid, matter-of-fact manner, Newry carer 'John' took to the podium and began to talk. And, as he talked, people began to listen intently. Hearing him recount his harrowing experiences of caring for the wife he loves, mother of his three children, who has tried to take her own life on four occasions since being diagnosed with severe depression and Emotionally Unstable Personality Disorder six years ago - was like eavesdropping on a deeply private conversation. Some among the transfixed audience at Stormont, which included politicians, committee chairpeople and other decision-makers, must have shifted a little uneasily in their seats.
For here was an ordinary man, a father, youth leader and former worker with disabled children and adults, spilling out his heart about what it was really like to be him; what it actually feels like to watch the woman you love recoil from life and the living of it; what it means to find her lying unconscious on concrete two storeys below your bedroom window after 'voices' told her to jump.
Shocking as John's story is, he is not alone. Cause chief executive Maire Grattan, who herself grew up with mental illness and watched her mother constantly struggle in its grip, says there are many similarly concerned carers left at the mercy of an overwrought system.
And she believes the situation is set to worsen under changes highlighted in the new health and social care document, 'Transforming Your Care' which prompted Cause to deliver its own response: 'Transforming Our Care' at the Stormont event earlier this month. "We know that health and social care services are changing radically, with an increased emphasis on 'home is the hub' of treatment," Maire says. "However, there is a growing concern that under 'Transforming Your Care', pressures on carers will also increase. "Serious mental illness can result in significant life changes for everyone close to it. If the care we provide as families, partners and friends is to be recognised, valued and supported under Transforming Your Care, then we need to see carers taken seriously, listened to and given a variety of support." With the launch of the Cause manifesto, several key issues are set out to help this "hidden group of carers".
For the first time, Maire says, a "single voice" has synchronised from the shadows previously inhabited by carers of people with mental illness, with a unified call for more assistance, more effective, streamlined services and easier accessed information. "Unless you go through the experience of dealing with a family member who has a mental illness, you can never really understand the full impact," Maire says. "The carer's life is intimately affected by fragmentation of care. "They can find themselves exploring service options unaided, chasing up services, having to sort out clashing appointments. They cannot find out who has overall responsibility, who is overseeing care and treatment, who they can turn to for help. "Carers can find themselves forced into a co-ordinating role themselves, but with one hand tied behind their back - they don't have adequate information."
But what they need most of all, she says, is "information given with compassion" - and the need to know that that information is held in confidence. "In order for carers to carry out their caring role they need information - about the illness, about treatment and care, about medication, about how best they can contribute," she says. "Carers have told us of their frustration at not having been involved in care planning and of having a loved one discharged to their care with no guidance or information given to support them in their task. Decisions that can impact dramatically on a family life are made without carer involvement."
John readily concurs and cites occasions when his wife Sinead has returned "too soon" from hospital following acute treatment - last year she spent seven-and-a-half months "on and off" in a psychiatric unit. Her longest stay was nine weeks.
Then, when she was discharged - and consequently relapsed - he was left to tackle layers of bureaucracy before being able access the home treatment team again. "I have found the home treatment team to be absolutely fantastic," he says, "but I would really like to see a back-up plan in place if they are needed unexpectedly. Sinead has become very ill again very quickly and I have had to go through the whole process again from scratch. "Little things like that would really help take the pressure off." And bigger things would help too - including ready availability of more intensive psychiatric beds and, on the public front, greater public awareness and understanding generally of mental health issues. "That is the thing," John explains gently. "No-one will ever understand what mental illness is really like until we can get inside the human head. Sometimes people think sufferers just need a kick up the backside but this is a real illness, even when the pain is hidden and the wounds invisible to everyone else. "Sinead hates being the way she is and it is important she knows it is not her fault. Luckily, I am a strong person and I look on the positive side but it's tough sometimes and I don't know if I will ever get back the person I knew before the illness struck. "Once when I made a comment that it was 'lashing outside', my wife explained sadly that that is the way she feels inside every day - like it's 'lashing'. "But, while I know the sun will come out again, sufferers like Sinead can only see the rain. My heart goes out to her."
Since being put in touch with Cause three years ago, John's own anxiety over his wife's condition has been eased and he has found the emotional support from other carers an invaluable aid to his own wellbeing.
In his early 50s and now a full-time carer, his life revolves around organising his wife's treatment - which has included five ECT (electroconvulsive therapy) procedures and oral medication amounting to 14 tablets per day.
Yet he also recognises the vital need for his own release which he finds in regular get-togethers over a pint with male friends. "Carers are prone to forget about themselves, but Cause underlines the importance of stepping outside your caring role every now and then and having an emotional, social outlet," John say. "The social life we used to have as a couple and as a family is now gone because Sinead might have a panic attack after half an hour and we would have to go home. "It's difficult for others too because they can't see the broken bits - there's no big bandage to signal something needs fixed. But it's very real to the people who are suffering and it's very real to the people caring for them. "I hope the government sits up zand listens. It's time more was done to help us help our loved ones. That's all we want - just some support."
n To find out more about Cause, call 028 9065 0650 or see www.cause.org.uk. The dedicated Cause helpline is 0845 6030 291.
*TAKING THE STRAIN:Serious mental illness can result in significant pressures for the families and friends of those living with it in their daily lives
*VOICE OF REASON:Cause chief executive Maire Grattan has personal experience of mental illness and believes carers are often left without any support