6. Support for you the carer > Dealing with a long term condition

Dealing with a long term condition

2) Getting the help you need

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The following points to consider may help you get the help you need.

  • Some conditions affect each other. For example stroke and diabetes or stroke and depression. All conditions should be taken into account when discussing what services the person may need. The older the person, the more likely the need for a total approach to care needs.
  • Take positive steps to improve your health.We cannot rely on services alone to improve a long term condition. Changes to improve your unhealthy lifestyle can make a big impact.
  • Working with multi-agencies. The more complex the need, the more services and agencies you will be in contact with. It can be frustrating to have to explain your needs every time another agency contacts you. You can save time by writing a brief summary of the person’s medical history and any issues which have not yet been addressed. Include any services they receive and the times. Include your needs as carer.
  • Knowledge of available support systems. Know what services are available as you may need them sometime in the future.
  • Information .This should be given to you in a clear way but if you don’t understand – ASK.
  • Changing lifestyle. There are usually steps which the person can take to reduce the risk of further illness, complications or improve quality of life. In many instances they will need help to change habits. For example stopping smoking or weight loss. These changes are not easy but can be achievable with support. Your GP is a good starting point for advice.
  • Share in decision making. The notion of the “expert patient and carer” is now being recognised as the way forward in managing long term conditions. To make progress there should be open and honest communication from those giving and receiving services. We all know services are in limited supply so it is important to have realistic discussions about what services are most important to you and the person you care for.
  • It is OK to change your mind. If you no longer need a service or if the service is no longer meeting your needs ask for a review. The person’s health may have changed or your health may have been affected. It can feel very intrusive to have paid care workers visiting your home to provide personal care. Alternatively you may initially feel you can cope on your own but then realise you do need assistance.
  • Your own support networks. These are just as important. Friends, family and neighbours are often willing to help but may not be sure of what they could do. Small tasks can make a big difference. Voluntary organisations may also be able to help.
  • The ability to adapt and accept change.Each person is different and some people will find it especially hard to accept help than others. When they have a long term condition there will inevitably be change. This may take time to adjust to. There may need to be a period of feelings of loss before the person can do this and move on with life.
  • Remember your needs as the carer. If you are unable to get support you are less likely to be able to continue and your health could be affected. (See section on contacts with other carers and carer support.)

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The following points to consider may help you get the help you need.

  • Some conditions affect each other. For example stroke and diabetes or stroke and depression. All conditions should be taken into account when discussing what services the person may need. The older the person, the more likely the need for a total approach to care needs.
  • Take positive steps to improve your health.We cannot rely on services alone to improve a long term condition. Changes to improve your unhealthy lifestyle can make a big impact.
  • Working with multi-agencies. The more complex the need, the more services and agencies you will be in contact with. It can be frustrating to have to explain your needs every time another agency contacts you. You can save time by writing a brief summary of the person’s medical history and any issues which have not yet been addressed. Include any services they receive and the times. Include your needs as carer.
  • Knowledge of available support systems. Know what services are available as you may need them sometime in the future.
  • Information .This should be given to you in a clear way but if you don’t understand – ASK.
  • Changing lifestyle. There are usually steps which the person can take to reduce the risk of further illness, complications or improve quality of life. In many instances they will need help to change habits. For example stopping smoking or weight loss. These changes are not easy but can be achievable with support. Your GP is a good starting point for advice.
  • Share in decision making. The notion of the “expert patient and carer” is now being recognised as the way forward in managing long term conditions. To make progress there should be open and honest communication from those giving and receiving services. We all know services are in limited supply so it is important to have realistic discussions about what services are most important to you and the person you care for.
  • It is OK to change your mind. If you no longer need a service or if the service is no longer meeting your needs ask for a review. The person’s health may have changed or your health may have been affected. It can feel very intrusive to have paid care workers visiting your home to provide personal care. Alternatively you may initially feel you can cope on your own but then realise you do need assistance.
  • Your own support networks. These are just as important. Friends, family and neighbours are often willing to help but may not be sure of what they could do. Small tasks can make a big difference. Voluntary organisations may also be able to help.
  • The ability to adapt and accept change.Each person is different and some people will find it especially hard to accept help than others. When they have a long term condition there will inevitably be change. This may take time to adjust to. There may need to be a period of feelings of loss before the person can do this and move on with life.
  • Remember your needs as the carer. If you are unable to get support you are less likely to be able to continue and your health could be affected. (See section on contacts with other carers and carer support.)