Cervical cancer screening event summary

Transcription

1 Cervical cancer screening event summary The North East and Cumbria learning disability network held a cervical cancer screening event on 9 th December at The Dolphin Centre in Darlington. This booklet shows us what some of the key problems are and your ideas on how to fix them.

2 Receiving your cervical screening invitation and booklet what are the big issues? The letter and booklet had too much writing and no pictures. The writing on the invitation letter was too small and important information needs to be big and bold. The booklet was confusing and some of the information scared some people. None of the information stood out to us.

3 Receiving your cervical screening invitation and booklet what were your big ideas? The invitation and booklet needs to be clear and in easy read so we can understand what we need to do. We would like to see some real people pictures on the letter. We want the help line number to be big and clear so if we know we need to some support we can ring the helpline number. The booklet needs to have the positive messages as well as the scary ones and we would like a DVD or YouTube film to help us understand the booklet.

4 Doing the cervical screening test what were the big issues? Sometimes we feel like the health care staff don t communicate information very well with us. Sometimes carers and family members think we don t need to have the test. In the past some women have had a bad experience and we haven t wanted to have the test done again. Sometimes we don t understand why we need a test and don t understand if we are making the right choice for ourselves.

5 Doing the cervical screening test what were your big ideas? Because we decided we didn t want to do the test one time doesn t mean we shouldn t be asked the next time. We would like a longer appointment if we feel we need one. We would like to see a DVD or a YouTube video that helps us to understand what to expect. We need all the information to be in easy read

6 Getting your cervical screening test results what were the big issues? The results letter is confusing and complicated. We don t understand what the letter is telling us and the wording is confusing. The font is too small and it is hard to read. We don t know if the letter is telling us we need to do something important.

7 Getting your cervical screening test results what were your big ideas? We need easy read letters which come with an easy read booklet. We also want lots of pictures to help us understand. We would like the letter to highlight the important bits we must know. On the letter we would like to take out the sentence your test is due on or around to be left out as this can be confusing for people We would like the Community Learning Disability Team to support us at the beginning of the process and remain until it is all finished.

8 The cervical screening environment what were the big issues? The room is too medical and doesn t make us comfortable. Sometimes the nurses didn t communicate with us very well and the wrong sized equipment was used. Reasonable adjustments

9 The cervical screening environment what were your big ideas? We would like to be asked if we would like somebody in the room with us to help support us We would like for the test be done where we live so we feel more comfortable We like to be given a longer appointment Why can t a learning disability nurse be trained to carry out the test?

10 Mental Capacity Act what were the big issues? It can be hard to explain things to people with learning disabilities. Sometimes our parents can decide for us and we want to make our own decision. Sometimes decisions are decided for people without them being asked

11 Mental Capacity Act what were your big ideas? We need to have clear photo information to explain the Mental Capacity Act. We need longer appointments to make sure we understand all the information that is being told to us and we can make a decision. The screening centres need to know which people need some extra support with their letters or at their appointments. We need to run awareness sessions with people, families and support staff.