1. The terms “regular” and “substantial” are not defined in any legislation, but are interpreted in two ways:-
They mean that the carer’s caring role has a significant impact on their lives (I.e. the impact is not negligible)
The person being cared for relies on the support provided by the carer—although not necessarily exclusively—to maintain their situation in the community. A good question to ask is, “What would happen if this carer was unable to continue providing care?”
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2. It is recognised that GP's and other Primary Care Staff are not able to hold all the information that a carer may want, or even a substantial amount of information. The issue is around whether Primary Health Care Teams are able to help a carer to take their inquiry forward, both by affirming the carer’s role, and signposting to the right agencies.
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3. Services that are of use to carers include:
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Local carers support organisation
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A local carers group
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Short break or respite services such as Crossroads
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Social Services
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A condition-specific support organisation, such as the Alzheimer’s Society, Parkinson’s Disease Society, or Stroke Association. Both local and national telephone numbers are useful
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Local counselling services (GP attached or others)
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The national Carers UK helpline number (0808 808 7777)
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4. If you do not know whether there is a local carers support organisation, Carers UK may be able to help (0808 808 7777) or The Princess Royal Trust for Carers (0207 480 7788). Your local Council for Voluntary Service may also have details.
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5. Carers need a starting point for their questions, and an overview of what is available. Find out whether there is a local carers pack available. If not carers need a range of information material so that they can make decisions about what services to use.
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6. The most important skill is that of listening—the ability to draw out the carers situation and to help them to consider their options. Starting this process with a carer need not take too much time, although a referral to a specialist carers worker, who has more time, may be appropriate. It is also important to have a simple overview of the services that carers need, in order to help them to think about their options constructively.
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7. If there are no carers information packs available in your area, think about putting together a folder of information that carers can refer to.
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8. If your agency is producing information for carers, it should be:
- Up to date, and regularly updated
- Clear, understandable, and jargon-free
- Appropriate to the real needs of carers
- In the right formats (e.g. is a large print version available?)
- Translated into other languages when appropriate
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9. Confidentiality is sometimes given as a reason for refusing to engage with a carers’ needs, worries and problems. Health and Social Care agencies should always be willing to listen to carers, discuss their own problems, and give general information, even if permission to share personal information about the person cared for has not been given.
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10. The main state benefit for carers is called “Carers Allowance” (previously called “Invalid Care Allowance”. Both Income Support (intended as a top up for those on low income) and Pension Credit (for those on low pensions) have a “Carer Premium” component, which can increase the income of carers. Disability Living Allowance (for people with personal care or mobility needs) and Attendance Allowance (for older people with personal care needs) are also important to carers, both for meeting the costs of care, and because they qualify the carer to receive Carers Allowance.
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11. It is probably not a good idea to refer carers only to the Benefits Agency, as they tend to only be given the specific information they ask for, which may not tell them all they, or the person they care for, are entitled to. Referral to the Citizen’s Advice Bureau, Age Concern (for over 50s) or a carers support organisation is also a good idea.
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12. A Carers Assessment is, in most cases, carried out by a social worker from the local office of Social and Caring Services. In the case of a carer of someone of working age who has mental health problems, the Carers Assessment may be carried out by a member of the Community Mental Health Team. Carers now have a statutory right to ask for a carers assessment.
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13. Many areas have a carers support group, either a general one, or others related to specific conditions. A local carers support organisation will have details, or ask the local Council for Voluntary Service.
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14. A carer who is “in the system” in terms of receiving services, but who is not coping with their caring responsibilities, should usually be recommended to ask for a reassessment of need by Social and Caring Services. They should also ask for a Carers Assessment at the same time, which will give them the opportunity to voice their own needs. They may also want to get in touch with a local carers support group. It is important to remember that the caring role can change dramatically over time, very quickly, and without warning, so assessments of what support is appropriate may need to change.
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