What happens when a person with mental health problems experiences the loss of a parent who is also their carer? One family's solution was to develop a 'book of life', which the local NHS trust has published as a blueprint to help others.

"When a carer passes away, people are likely to find themselves suddenly without support, in a difficult financial situation that can rapidly escalate."

When their son Tom was diagnosed with schizophrenia at the age of 20, his parents Gordon and Ann were consumed with helping him deal with the illness.

Thirty years later, Tom's condition is stable and he lives in his own home close to his parents. But as he approached his eightieth birthday, Gordon began to worry about what would happen to Tom when he and his wife became too infirm to help him or were no longer alive. “We feared his life would become a huge mess in a very short time,” said Gordon.

'Book of Tom'

His solution was to create a 'book of Tom' containing the information needed to enable someone else to care for his son in the absence of family support. He shared the idea with other local carers and together they persuaded Birmingham and Solihull Mental Health NHS Foundation Trust to help turn the jumbled pages he carried around in a plastic bag into a professional document. The trust agreed that its charitable arm, Caring Minds, would fund a print run of several thousand copies. “The document encourages carers to ask all the questions that would allow someone else to step into their caring role,” said Gordon, aged 83. “We are finding it increasingly difficult to care for our son. This helps to give us peace of mind.”

The 22-page guidebook – official title: “Planning for the Future and Emergency Planning - a guide for families, carers and friends of mental health service users” - is unusual because it has been initiated and developed by carers; rather than professionals deciding what they think carers need to know. And although it is aimed at people with mental health problems, it has already attracted interest from carers of people with dementia, as well as learning and physical disabilities, and young carers who want to go to college or find a paid job.

Checklists of everyday activities including paying bills, washing clothes, cleaning the house, getting benefits, budgeting, filling in forms and reminders for GP appointments and taking medications are listed in the document. Lasting power of attorney, appointing advocates and setting up discretionary trusts to ensure money or property are protected are among the legal and financial issues covered. A shorter emergency planning document aims to deal with times when a carer is away temporarily because of transport delays or admission to hospital. A credit card sized 'carer card', with emergency contact details is also included. The document also offers suggestions on how to raise the highly sensitive issue of future care with someone with mental health problems.

Bipolar battles

Linda, aged 60, was one of the first to receive a copy of the guidebook. She took early retirement from her job as a teacher to look after her son Sam. He achieved 3 As at A-level and was poised to study dentistry at university when he was gripped by indecision and depression that was eventually diagnosed as bipolar disorder.

Now aged 29 and unemployed, he lives in his own flat and relies on constant reminders from his parents to take his tablets. “If he stops taking his medication, we start to find half eaten food going mouldy in the kitchen, the place is a tip and he'll sleep in his clothes for several days,” she explained. With Sam's consent, Linda fills in paperwork for him, sets up direct debits to pay the bills, withdraws cash from his account and checks he receives the correct amount in benefits. “If I don't look after my son and uphold my son's rights, who else will do it?” she asks.

The guidebook was a good starting point for putting plans in place for Sam's future, said Linda, but she had doubts about whether the resources would be there to support him in her absence. “There's still a lot of uncertainty in my mind; all the support services are great if they're available and give meaningful service but all too often they're just lip service.”

The number of older carers is increasing more quickly than among younger age groups. Figures from Carers UK and Age UK suggest that around 1.2 million people in England over the age of 65 provide care – an increase of 35 per cent in 10 years, compared with an 11 per cent rise among all carers. By 2030, there could be more than 1.8 million older carers – including 200,000 over the age of 85.

The majority of older carers look after someone with physical disabilities, with 13 per cent looking after someone with mental health problems. But Emily Holzhausen, Carers UK's Director of Policy and Public Affairs, said its research showed that carers of people with mental health problems, particularly severe mental illness, faced some of the biggest challenges in being supported. “The worry about what would happen if something happened to you when someone relies on you has always been a concern. Good planning can reduce this worry and concern. It can set up new support networks and give carers greater confidence about their lives,” said Holzhausen.

Helen Undy, Head of External Affairs at the Money and Mental Health Policy Institute – a charity founded by MoneySavingExpert.com founder Martin Lewis – said: “When a carer passes away, people are likely to find themselves suddenly without support, in a difficult financial situation that can rapidly escalate. One missed council tax payment can lead to demands for a year's worth of payments up-front, and the bailiffs called just weeks later. These kinds of financial crises make people eight times as likely to think about suicide, so the loss of a carer can have both rapid and devastating impacts.”

Former health minister and Liberal Democrat MP Norman Lamb said the reliance on elderly carers was a ticking time-bomb for the government, which needed to provide more support.“The intolerable strain on local authorities and NHS budgets means that people with mental health problems increasingly rely on parents or other relatives to provide much of their care. This is unsustainable and inevitably stores up massive problems for the future when carers themselves become infirm or pass away. Unless the Government finds an urgent solution to the long-term funding challenges in health and social care, the brutal truth is that we will see ever-greater gaps in support for many of the most vulnerable people in our society.”

The Health Minister, Jackie Doyle-Price, said: “It’s very important for carers of a relative who have a specific need like a mental health problem or a learning disability to plan for the future. This document is one of several initiatives which will help ensure that people with different care needs can retain their independence and receive the support they need to continue to live well in the community.”