- Information and advice about your relative’s diagnosis and treatment
- Services and support specifically for carers
- Carers’ groups
- Support from your GP
- Training for carers
- Carers’ assessments
- Benefits and government support for carers
A lot of carers don’t even realise that they are a carer. In fact, it takes, on average, two years for someone to acknowledge the fact that they are a carer. Carers are anyone, adult or child, who looks after a partner, relative or friend who needs support due to an illness, disability, frailty, an addiction or a mental health problem. The care that they provide is unpaid.
A lot of people who experience psychosis live with someone else or remain in close contact with people that can be classed as caregivers. These could be close relatives like a partner, their parents, their siblings and even their children. This can leave the caregiver frightened and bewildered as they work through significant distress. They are often unsupported and might even be excluded by their relative’s healthcare providers. Often times, the family member commits to caring for their loved one while they themselves feel entirely unsupported.
Research shows that individuals diagnosed with psychosis that have support informally from family or friends will have better outcomes. This means that they will have fewer admissions as inpatients, fewer relapses, will engage better with their treatments and services and have better mortality rates. Thus, carers have a pivotal role to play. From the initial onset of the condition and responding to potential relapses, carers are central in the organisation of care.
There are many places where you can seek support, information and advice about your relative’s diagnosis and treatment. The organisation Mind is a great place to start. Their website is www.mind.org.uk. Another great resource is Rethink Mental Illness. You can access their website at www.rethink.org. These places go into detail about different types of mental illness, including psychosis.
You can also access information directly from the NHS either by talking to your GP or online. They have many pamphlets available on different conditions.
With regards to understanding your loved one’s individual case, you should be able to chat with their GP or care team. Even if your loved one has requested not to share information with you with regards to their medical details, you should still be able to ask for information and advice. As well as this, the people involved in your relative’s care should talk to you about your requirements as a carer.
The charity Carers Trust works to improve services, support and recognition for those in an unpaid caring role for a relative or friend. They have a network across the UK and provide grants so that carers get a little extra help to be able to live their own lives. Their network partners support carers at home by providing respite care as well as information, support, advice and other hands-on help. They tailor their support to the people they are supporting too. Their website can be found at carers.org.
There is research to show that people who experience an episode of psychosis will be significantly less likely to have repeat episodes when their relatives/carers take part in family groups or sessions.
There is a variation in services in different NHS trusts but many run family and friends groups and psychoeducation groups for relatives and friends of those who are experiencing psychosis. The groups support carers by sharing and developing strategies to cope with a loved one experiencing psychosis and allow people in similar situations to support each other effectively.
GPs are family practitioners. This means they have a unique position to engage with the patient and their family carer or carers. Part of your GP’s role is to facilitate communication between you as a carer, the patient and the mental health team.
There does exist training for carers of people with psychosis. The organisation Future Learn has an online course called ‘Caring for People with Psychosis and Schizophrenia’. This course is free and explores the key issues involved in caring for a relative with schizophrenia or psychosis. You can find out more information here.
Carers are entitled to a carer’s assessment that looks at your mental health, physical health and your caring needs. Care coordinators should offer you a carer’s assessment in the initial stages of planning your relative’s care. Here, you can be referred to a Carer Assessment Worker, which is someone who specialises in assessing carers’ needs. They can work with you to look at what support you could need and help you know how to access it. Care coordinators should involve the family in the care planning and care review processes and should also support you in order that you know how best to support your relative while minimising your own stress.
In the UK, if you spend at least 35 hours per week caring for someone, you might be able to claim a benefit called Carer’s Allowance. You might also be able to get more money added to any existing benefits or credits that you receive if you are in receipt of Carer’s Allowance in the form of Carer Premium.
To receive Carer’s Allowance, you have to spend at least 35 hours per week caring for your loved one and they are in receipt of certain benefits. The person you are caring for doesn’t have to live with you or be related to you.
You relative for whom you provide care must be claiming one of the following in order for you to receive Carer’s Allowance:
- Personal Independence Payment (PIP) – the daily living component
- Disability Living Allowance (DLA) – middle/highest care rate
- Constant Attendance Allowance (at/above the normal maximum rate with an IIDB – Industrial Injuries Disablement Benefit)
- Constant Attendance Allowance (at the full day/basic rate with a War Disablement Pension)
- Attendance Allowance
- Armed Forces Independence Payment
It’s worth being mindful and getting advice as Carer’s Allowance could affect other benefits that either you or your loved one receive. Check with Citizens Advice.
Carer Premium is part of a sum that is calculated to see how much you are entitled to. It is added onto other benefit amounts.