Published in InterAction 74, Winter 2010
Leigh Fenton, former deputy editor at InterAction, drew on the views and experiences of a number of carers to compile our new booklet, Caring for somebody with M.E. This is a short extract.
The simple truth is that in order to look after someone well, you need to look after yourself. By maintaining both your emotional and physical health, you will be able to care to the best of your ability.
Your GP or local authority social services or social work department should have information about the help available to you in your area. Your local M.E. support group or carers’ centre may know of other carers near you, with whom you can talk and exchange ideas.
Care for them
The person you care for may be entitled to a community care assessment from social services (see p 9). This would look at the services that may be available to them and assess their eligibility. (In practice, what is available varies between local authorities and may be limited by financial or operational constraints). Some of the help that may be available could include aids or adaptations, help with personal care, day-to-day living or help with meals. Social services should also look at your ability to provide care to the person having the assessment.
If you are caring for someone you can also request an assessment in your own right. This is to assess your own support needs as a carer and your continuing ability to provide care. Following an assessment the person that you care for may be able to get some extra help through social services and you may be able to get a break from caring.
If the person you care for is assessed as needing services, they may be able to get direct payments. This means they are paid a sum of money that they can use to buy in their own care. In some cases they may be able to employ their existing carer but direct payments cannot usually be used to employ a spouse, partner or close relative who lives in the same household (if you are in this position seek advice as there can be exceptions to this).
Care for you
As a carer you may also qualify for direct payments in your own right (in England and Wales). These are designed to give flexibility and can be used to help you sustain your caring role.
Accept help from your friends and family when it is offered to you. If you say you are managing, they may not think to ask you again, which could result in you missing out on an invaluable source of support.
If you are considering giving up work to become a full-time carer it is essential to seek advice about the benefits that you would be entitled to. In future, this may include Universal Credit (see p 4).
Currently Carer’s Allowance is the main state benefit available to carers. To qualify:
- you need to be caring for someone for at least 35 hours per week
- the person you care for needs to be getting the middle or high rate care component of Disability Living Allowance, Attendance Allowance or Constant Attendance Allowance
- you need to be 16 or over
- you need to be eligible to claim UK benefits and meet certain other residence criteria
- you cannot be in full-time education
- you can be employed but you are only allowed to earn a certain amount - this increases each year.
Claiming Carer’s Allowance can affect the benefits of the person you care for. If they get the severe disability premium or addition, seek advice before claiming. If you are already getting certain benefits you will not actually be paid Carer’s Allowance but it can still be worth claiming as you may be able to get the carer premium or addition. This is an extra amount of money paid on top of certain means-tested benefits.
To obtain a claim form, ring the free benefit enquiry line 0800 882200. (NB. Our booklet does not cover all the benefits affected by Carer’s Allowance. Contact a carers’ organisation – see Useful contacts – for more details).
In addition to Carer’s Allowance you and the person you care for may also be eligible for other benefits such as Income Support, Employment and Support Allowance, Job Seekers Allowance, Pension Credit, Housing Benefit, Council Tax Benefit and Disability Living Allowance (this list is not exhaustive and again, from 2013 some of these benefits will be absorbed into Universal Credit).
If you have dependent children you may be able to get Child Tax Credit. If you have a mortgage you may be able to get help with this through Income Support or income related Employment and Support Allowance.
Eligibility for benefits also depends on your family circumstances, any savings you have and in some cases your National Insurance record as well as your status in the UK.
Our new booklet, Caring for somebody with M.E., and factsheets such as our Guide to benefits, Disability Living Allowance, Incapacity Benefit and Employment and Support Allowance, are available free. Supporting Members can call our Membership Co-ordinator for a copy on 0845 123 2380 or our Welfare Rights line for advice on 0845 122 8648.
If you are on certain benefits you and the person you care for could be entitled to free prescriptions, dental care, sight tests etc. If you are on a low income you may also qualify for some help with health costs.
For further information contact the NHS Low Income Scheme on 0845 850 1166.
Editor’s note: having M.E. is tough and caring for someone who has M.E. brings its own challenges. As Duncan put it, “Yes, I am my wife’s carer - but actually we’re in this together.”
Please note that publications written before the full impact of the Coalition’s Spending Review are known, will be revised in the light of legislative and other changes as they are announced.