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Listen
4. Communication and information
4.1 Communication
People saw good communication as being at the heart of good care. It was suggested that accurate, up-to-date information is the basis of successful self-management.
"Don't just whip out the prescription pad - listen! Ask…"
"Needs culture change, e.g. friendly professionals."
Services have to recognise that communication is a two-way process. First and foremost people said that services have to be 'listening services'. Only then can they understand what people and unpaid carers need and provide the right information. It was suggested that the NHS has not always worked in this way.
4.2 Information
Diagnosis was identified as a time of particular need for good information. Agreed and shared communication systems have to be in place across and within services. This would mean professionals are able to access the information they need and in turn provide the right information to people and unpaid carers. It would also help professionals to discuss issues with people in a clear, consistent and jargon-free way.
"People with long-term conditions don't know what is available, don't know who to ask, don't know their rights!!"
People discussed the type of information they need:
- Dedicated co-ordinator to signpost to information.
- Information about specialist services.
- Information about local and national voluntary organisations that might be relevant to them.
- Information in a variety of formats and media.
- Virtual information network to link people, unpaid carers and professionals across the whole of Scotland. This would signpost people to specialist knowledge and sources of information. It would make use of technology including telephone, television and mobile phones as well as written materials and face-to-face support groups. NHS 24 was identified as a possible base for the network.
The events also looked at personal information and found support for the idea of a 'patient passport'. This would be a single record that all professionals could see. People were positive about this as it would remove the need to repeat the same information to each professional they met.
People recommended that the Scottish Executive develop a strategy to describe best practice in providing information.
4.3 Accessibility and clear communication
"Consultants need more people skills."
The events made it clear that the best information systems in the world are useless if the information itself is not clear and effective. This was viewed as particularly important for people whose first language is not English or for those with communication difficulties.
"Don't forget about getting info to people who may not read e.g. people with learning difficulties, people from black and minority ethnic groups…"
There was a strong message that professionals need to stop using jargon and 'codes'. Instead they must communicate in a way people understand. People with long-term conditions and unpaid carers described finding it difficult to build a relationship with professionals who spoke in a way they did not understand. They talked about having little respect for professionals who made little or no effort to communicate with them meaningfully.
More than anything people said they want professionals to deal with them as a person and not as a condition.
"Communication needs to be improved by recognising the importance of the person not just the condition."
4.4 Communication with the general public
A key issue raised at the events was the way in which people with long-term conditions are seen in society. People talked about problems of stigma and discrimination caused by a lack of understanding about long-term conditions.
"Lack of education and awareness of illness - public's attitude to some illnesses [is] pure ignorance."
The media was highlighted as particularly important in communicating with the public about long-term conditions. There were concerns that the media often causes confusion by providing biased or misleading information. As a result people suggested more publicly funded campaigns like 'see me' to raise awareness and challenge inaccurate information.
" Impairment/condition is the thing wrong with me, diabetes, etc. Disability is the social exclusion/ experience, e.g. stigma, lack of support etc."
"Fight isolation and exclusion!"
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