How to help
People with long term conditions and their unpaid carers want to be involved, to work together with health professionals, and to be communicated with effectively.
To be involved, people with long term conditions and their unpaid carers want:
- NHS workers to be better listeners and to believe what they tell them to decide what happens to them
- NHS workers to understand what unpaid carers do, and to give them more support and information about other services
- unpaid carers, if the person they support wishes, to be allowed to see the doctor with them
- help for unpaid carers at times when they cannot be there and in emergencies.
To work together with the NHS, people with long term conditions and their unpaid carers want:
- one person in the NHS who they can talk to – a key worker
- the key worker to seek information, support the person and their carer, know where to get more help and to help deal with things like money and benefits
- NHS workers to be better at telling them bad news
- NHS experts to support people with long-term conditions
- to talk to counsellors, especially when they are told that they have a long-term condition
- key workers to tell them what services are available and for the NHS to arrange this
- the NHS, local councils and voluntary organisations to work together and make things better
- to choose where they get a service from.
For effective communication, people with long term conditions and their unpaid carers want:
- to get the right information
- better information when they are first told about their condition and for this information to be from a key worker
- better information about services and voluntary organisations that can help them
- information to be accessible and leaflets easy to read
- all the information about their condition written down and in one place. This ‘patient passport’ can then be easily shown to someone who they meet for the first time
- NHS staff to use words they understand
- NHS staff to be aware that they may be living with more than one long term condition to be treated fairly, regardless of their condition.
- newspapers, radio and television to be careful about how they show people with long-term conditions
- the public to understand more about their conditions.