Accessible Summary: What information do people with learning disabilities want with their medications?

By Dr Rebecca Fish and Professor Chris Hatton, (Lancaster University), Professor Umesh Chauhan, (UCLAN)

This blog is about the information that people receive about their medicine. The project was organised and paid for by the East Lancashire Clinical Commissioning Group (CCG).

We wanted to find out what information people get from their GP and Pharmacist about their medicines. We wanted to know if they are happy with the information.

We got help from the people with learning disabilities at NWTDT and Pathways Associates to write the survey.

The survey was given to all the people who went to the North West Self Advocates Conference in Blackpool in February 2016.

The survey asked 5 questions:

• What information are you given when you get medicine from the doctor?
• Is it helpful?
• What else could the doctor do to help you understand your medicine?
• What information are you given when you get your medicine from the chemist?
• What other support would help people to understand their medicine?

58 people filled in a survey. Some were not fully completed, and some contained many different answers. We have divided the answers into how many people said the same thing.

Helpful Information received from GP

Half of the people said that they got helpful information from their GP. They said that they got information about when to take the medicine and how often. Some people said that the doctor took time to explain about the medicine and answer questions. A few people said that the doctor showed them how to take it.

This is what people said

• I am told how to take. When to take. What my medication is for.
• I am told the dosage, the days to take the medicine, how often to take the medicine and how it works in an easy to understand manner.
• My GP gets info up on his computer – he reads off the screen how much and how often – print out prescription with instructions. Just writing – no pictures or symbols, just tick boxes for free prescriptions.

Information that is not helpful

Twenty people said that the information was not helpful. Some said they could not read it or understand it. Other people said they could not remember the instructions that the doctor told them. Two people said the information is given to their carer and not them.

This is what people said:

• He gives us the medicine. I can’t read or write so then don’t understand what’s on it. He sometimes tells me but I don’t always remember what’s been said so ask friends or People First.
• Just gives me my new medicine does not explain well. Sometimes my support does not ask questions.
• No information really given, just what time to take them.

Information from Chemist

Most of the people received no information from the chemist. Others said they just got a leaflet. Some people were told when to take medicine or how to take it.

Some ideas

• Talk to me easier. Giving me pictures of when to take the tablets e.g. picture of sun = sunrise am x 2 tablets. Give me easy read info about what it is for.
• Make words bigger and easy-read. Spend time explaining things to me and not the support.
• Maybe having someone in the doctors who can sign because not all of us can hear very well.
• Support workers to check up how you are taking them and how often you miss them.
• I want to get the medication myself in the future. I want to be careful. I need things explaining to me.
• We want to know how to look after ourselves so we don’t have to use our medicine for a long time / reduce amount.

What do people need?

This is what people said would help them:

Paper Information

Large print, easy read with no jargon, greater detail

Pictures or diagrams

Safety information, how not to take too much, what happens if not taken

Information about side effects and risks

Photos or videos of how to take it

Telephone helpline

Information about how to look after ourselves to avoid medicine

Face-to-face

Listen to patient, take time to explain, and answer questions

Involve support workers and families

Face-to-face information with no difficult words

Explain why I need to take it and what it does to my body

Explain how the medicine works

Aids such as hearing loop, braille, sign language, interpreter

Talk to patient rather than carers

Explain about alternative medicines

Other

Regular reviews and health checks

Mobile phone alerts as a reminder or a timetable

Label with space to write on

Conclusion

This research shows that people do not get enough information with their medication.

There are many different places to find easy-read information on the internet. We think they should be collected and checked.

We also think that doctors and chemists need to spend more time with people to explain about medicines.

The Accessible Information Standard says that people should have information that they understand.

 

You can print a pdf of this report here: Helpful Information received from GP – easy read

We wrote an article in a journal about this:

Fish, Rebecca, Chris Hatton, and Umesh Chauhan. “Tell me what they do to my body”: A survey to find out what information people with learning disabilities want with their medications. British Journal of Learning Disabilities 45.3 (2017): 217-225.

You can find it here: http://onlinelibrary.wiley.com/doi/10.1111/bld.12196/full

All pictures are from Change: www.Changepeople.org

You can contact Pathways Associates here: info@pathwaysassociates.co.uk

Their website is: www.pathwaysassociates.co.uk