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Who cares? - (full conference transcript)

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Jane Atha

Social worker James Cook University Hospital, Renal Unit, Middlesborough

I’d like to start by saying a little bit about what I do. I work on the renal unit at James Cook University Hospital as part of the renal team of doctors, nurses, physiotherapists, pharmacists, and a dietitian. As a social worker, I get involved on the social side of chronic illness, helping with sorting out finances, housing, employment issues, doing assessments for services such as home care, meal services, short or long-term care. And apart from this I generally like to get involved with patients and their carers, sometimes just to talk, sometimes to highlight a service which may be helpful.

I was asked to speak about carers, and help available to carers. I’ve been talking to patients and their carers, reading some documents and surfing the net. I’m going to start by looking at what a carer is. I expect maybe half the audience are carers. Perhaps more than half. The word carer has come to be used to describe anybody, other than a paid worker, who’s looking after somebody, elderly, ill or disabled. It may be that you don’t think of yourself as a carer, you may not even like the label. After all, we are first parents, daughters, sons, wives, partners, sisters, brothers or friends. But the label does help some people. Thinking of yourself as a carer can be a way of saying that you’re doing a job, a difficult job, a demanding job. It’s a way of saying that because you are doing a difficult job, you have needs and it’s right to expect at least some of these needs to be met. Carers UK define a carer as ’someone who looks after family, partners or friends in need of help because they are ill, frail or have a disability, and the care they provide is unpaid.

Being a carer has an impact on many areas of life. Caring for somebody can change the nature of your relationship, causing a loss of identity or purpose, a change in the role in the family. Partners may need to take on policing roles with medications and diet, become a counsellor or become a nurse. Social life can be affected through lack of time, lack of energy. Friends who have been helpful at first may drift away. Or the nature of friendship may change, if you feel you are being a burden to them. Giving up work may reduce your social contacts as well as the self-esteem and rewards that go along with working. Holidays may become infrequent, expensive, more difficult to arrange to include dialysis, trying to get travel insurance. Finances can become stretched through loss of paid work and also increased cost due to the nature of illness, buying a special diet, buying necessary equipment. Carers often present with stress-related disorders, both physical and emotional, from bad backs to headaches. These conditions need to be treated and not ignored as secondary to renal impairment. Carers describe feelings of fear ’ fear of the future, frustration at the turn of events, sometimes overnight, that changes your expectations of the future. Coming to terms with ’Why me?’ is difficult for the patient and the carer. Carers have similar emotional needs and need to be supported, just as much as those they care for. To quote one of our carers, ’A carer may cry for help and who listens?’’

Every year 301,000 people become carers. Without recognition they won’t get the support they need and are entitled to. There is a harsh economic truth to caring. Many carers give up work to care. Many receive inadequate support and help. Carers UK published a report this year called 'Without Us', showing the value of carers’ support to local authorities in monetary terms. For example in Middlesbrough, where I come from, the value is put at £101.4m to the local authority. The report stated that carers save the State £57.4bn a year. This is the equivalent cost of the NHS every year. So whether you call yourself a carer or not, if you look after somebody, your role is vital.

So what is the Government doing to help?’ A national strategy document entitled 'Caring about Carers' was published in 1999. It highlighted the need for carers to have more information, support and care, to have their own needs met. Legislation was needed to enable local councils to provide help directly to the carer. This led to the Carer and Disabled Children’s Act 2000, which came into force in April 2001. It’s aimed at providing help in a number of ways, but mainly by introducing the carers’ assessment. This gives anybody caring for somebody the right to an assessment of need in their own right. Social services are legally required to undertake this assessment if requested. Needs highlighted in the assessment must be met, for example the need for a sitting service whilst the carer goes out, home care to help within the home or respite care, also access to financial advice and to counselling. The Act also introduced or highlighted the existence of a direct payments scheme. This scheme allows payments to be made by social services directly to people to buy in assistance to meet their own needs, rather than receiving services arranged for them. The aim of direct payments is to promote independence, choice and flexibility in the way you receive services and to give you control over the services that you want. The Government also aims to help by the benefits system.

Invalid care allowance is a weekly benefit for carers. You may be able to get this if the person you care for is getting disability living allowance at the middle or higher rate or attendance allowance, and you spend 35 hours a week looking after the person. There’s no age limit on claiming this benefit any more and you can earn up to about £75 a week in addition. Invalid care allowance is taxable and whether or not you can claim may depend on your National Insurance contributions and other benefits that you or the person you care for are receiving. It’s important to seek advice about claiming invalid care allowance, for even if you cannot receive it due to other benefits that you’re getting, you may have an underlying entitlement to it, which means that you will receive a National Insurance credit which protects your State retirement pension.

Disability living allowance is a non means tested benefit for people under 65 who require help with their personal care needs or who have mobility difficulties, and Attendance allowance gives similar benefits to people over 65. A carer premium is an extra amount of money for carers whose income is low and who are receiving invalid care allowance or have an underlying entitlement.

Claiming benefits can be a minefield, and I’ll tie myself up in knots if I try to go on in any more detail. Suffice to say that help is at hand through your local council Welfare Rights Unit, Citizens Advice or the Benefits Agency.

No matter what condition affects the person cared for, carers have a lot in common. They share many of the same experiences, feelings and worries. Perhaps most of all carers share a need for information. It’s often the lack of basic helpful information that makes caring harder than it should be. This panel shows some of the information about websites with information about support for carers, about the benefits available and how to claim them, and also giving regional information about carers’ support groups in your area. There are many more websites and it’s worth a browse, available at your local library if not at home, and I’ve print-outs of these addresses as well as useful phone numbers.

We’ve looked at issues and difficulties faced by carers, the importance of carers and the Government response to caring. But where can you go for support and access the services I’ve referred to?’ Your local Kidney Patients’ Association ’ they should have the information about support groups in the area, a list of people in the same boat as you, willing to give time to talk and share experiences. There’s great strength in knowing you are not alone, and I’m sure the local KPA would encourage setting up your own local support group. Social services is the place to contact to request a carer’s assessment in your own right, getting information on direct payments, and they also have welfare rights units to assist with benefit claims.

I attended a very interesting meeting recently by the Princess Royal Trust whose aim is to provide free and confidential help and support for all carers. They provide a wide range of services in over 100 locations across the country, including support groups, help to set up a specialist support group, provision of complementary therapies to combat stress, vital information, and advocacy to help get the services you need.

Carers UK is a national organisation lobbying for recognition of carers and they also produce a lot of information. Citizens’ Advice Bureaux and GP surgeries have useful information on local carers’ centres, offering a listening ear and support. The British Association of Counselling would give advice on counselling services in your area.

We’re lucky enough in our area to have a free counselling service specifically for patients with chronic illnesses and their carers. You may have, too.

And don’t forget your own renal unit. Encourage health care staff to think of you as a partner in caring, to share information and be involved in treatment plans. If your unit has a renal social worker, they should be able to put you in touch with support services that are available.

Finally, I’d just like to emphasise that patients and carers need to be listened to, and thank you for listening to me today.

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