Carers group head, Jacqui Martin, makes a clarion call for carers

It is time carers were valued and supported, not taken for granted, writes carers group head Jacqui Martin. After all, they save the UK economy billions of pounds each year

I was heartened to hear the coalition government mention carers in its programme and pledge to increase access to respite care.

The challenge will now be on to ensure that, with the financial challenges the country faces, family carers of all ages are not forgotten, but supported, empowered and involved in developing services that enable them to continue in their role. They must have a choice as to the task they undertake, a choice whether to employ help and also, in some cases, a choice not to take on that caring role.

Having had a 22-year career in the third sector working to raise awareness, develop services and support family carers of all ages, I recognise that now is the time when they should be top of the agenda.

Saving the country billions of pounds each year, family carers have been called the “hidden army” or the “shadow health and social care service”. They have seen many policies and strategies promoted to support them with many falling by the wayside.

Talking to carers

At one time there was great importance placed on talking to carers, assessing their needs and delivering respite and support. Now many carers are lucky if they receive a telephone assessment, which in many cases does not empower, enable or give the real picture. Beware the call centre approach.

We have seen the carers’ grant protected to ensure councils and health partners spend it on families; and then seen the ring-fencing removed in 2003 and the grant abused in so many ways by some councils and NHS bodies.

We have managed, with partnership working, to protect most of the grant in Suffolk. But colleagues say the removal of the ring-fence has been a blow to carers as services have then been reduced. Where is the logic in that, I ask?

Supporting carers correctly is the most cost-effective way of saving money; it prevents crisis intervention, inappropriate admission to hospitals and delayed transfer of care. Without support, carers’ physical and mental health is put at risk and young carers have difficulties at school.

Many carers ignore their own health and well-being because they have neither the time nor the money to do otherwise. If I want to go to my GP I just go. But carers sometimes have to pay for someone to sit with the person they care for so they can go to the doctor. You have to pay for respite if you need an operation and need to recover; you have to pay for a replacement if you want to take a holiday.

So now the challenge starts again, family carers are everyone’s responsibility. We need to ensure they have the right information and support as early as possible and that they have a choice as to whether to care or not and to stay in work or not. We need to ensure employers are sensitive to their needs, that services are available and flexible and that families are not forced into financial disadvantage.

Knowledge of rights

Carers want to be recognised and valued, supported and listened to; to be informed of their rights and entitlements; to be supported to maintain their own health and to have a life outside caring. They want to be included (with the permission of the person they care for) and valued as a partner in the treatment and care, especially in planning hospital discharge, and to be trained in aspects of care such as lifting and understanding medication.

As one carer told me: “It is not rocket science – treat me as you would like to be treated yourself but remember, I need to be looked after as well, otherwise who else will do it?”

Take time out and think what you would want if tomorrow you had to give up work and care for someone, and also remember not everyone has a strong loving relationship that enables them to care in a positive way.

We have been told that, most of all, carers want to be considered as an individual, to have their own needs recognised and to be treated with respect. Early support and recognition is key – prevention is cheaper than crisis intervention.

So the challenge is on to support that hidden army in a positive way. Please don’t let family carers slip off your radar.

Jacqui Martin has worked for Suffolk Family Carers, the country’s largest carer support organisation, for 21 years. The organisation provides information, support and advocacy for all adult carers, and specialist support for carers of people with mental health problems.

Suffolk Family Carers 

This article is published in the 10 June 2010 edition of Community Care magazine under the headline Don’t Let Carers Slip Off the Radar