Ongoing management

This page answers the following questions:

What happens in the longer term?
How often should my health and other needs be reviewed?

What happens in the longer term?

Neurological conditions often lead to complex needs as they can affect many parts of the body. You may have more than one condition. You may also have a number of symptoms and these may worsen. As many neurological conditions have long-term effects people need co-ordinated and patient-centred services.

To date these have not always been available but according to the National Service Framework for Long Term Neurological Conditions, it is to become a requirement. Part 1 of this booklet describes the services available to you. From time to time you could review whether you are benefiting from all the services you need. Do not assume that once you have made contact with particular services you will be automatically referred to all the services you need.

If your condition is progressing, ask if there is any other help available to you when you next see a health professional. It is also useful to check with people who have given you advice in the past to see if you are entitled to any new services.

How often should my health and other needs be reviewed?

Some neurological conditions are progressive (that is, they worsen) and others may remain static for a long period of time. Assessment and reassessment should be carried out at regular intervals. The Neurological Alliance recommends your GP or specialist should offer you an assessment at least once a year.

If you are experiencing chronic pain you could ask your GP to refer you to the nearest pain clinic.

Questions to consider asking yourself, your social worker, health professionals and your voluntary organisation

  • Am I receiving all the benefits I am entitled to?
  • Where is a welfare benefits advisor located?
  • How do I obtain further assistance to help me with my day to day living? Could I benefit from additional equipment?
  • Where locally can I get help with equipment?
  • Where can I get help with transport? Where can I find help locally to return to work?
  • Are there any new treatments available I could benefit from? Are there any clinical trials I could take part in?
  • Could I benefit from further rehabilitation?
  • Would my carer benefit from additional help?
  • What help and organisations are there available locally for carers?
  • Am I receiving a newsletter from/in contact with the charity covering my condition?

Next: Rehabilitation

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