“Receptionists and other staff who are the first point of contact need extra training and patience in how to deal with people with learning disabilities” “Accessibility needs looking at, we need to get the practical things right as well” “You should think about having specialists in learning disabilities in each hospital and GP practice” General comments at the beginning of the session – social care Some participants had positive experiences of care homes, but this was not universal. Some participants identified problems in having limited choices, for example no private televisions and not being allowed visitors when they wanted. Some participants had experiences of living in shared houses, and having limited privacy in own home. One participant explained that he spent time living in a group home with people with mental health issues, which he found frightening. Participants recounted some positive experiences of respite care. One participant commented that they felt that respite worked well if it was provided in another’s person’s home, rather than in a care home. Some participants identified that they needed help to learn independence skills, for example “support workers need to push me and help me learn new skills” and “I would like more training opportunities for me” One participant reported an experience of emergency accommodation that had been stressful. Participants strongly agreed that they did not like continuous changes in social workers and occupational therapists. Some participants explained that they found day centres boring, for example because people had more severe or profound learning disabilities than they did and / or they felt that they did not fit in. Some participants commented that they new day centres that had been updated, for example with sports facilities and those that are activity-based. They felt that day centres are okay, if they are not ‘old-fashioned.’ One participant said that they will miss seeing their friends at the youth centre as it is closing down. “There is nothing for young people with learning disabilities to do. We need to meet people our own age” Participants stated that they would like more experiences like Shared Lives. [“Shared Lives Plus is the UK network for and small-scale ways of supporting adults.” See ] Question 1 Do you find it difficult to see, to hear, to speak, to read or to understand what is being said? Participants wanted to consider each part of this question separately. 4 participants identified difficulties in hearing 5 participants did not identify difficulties in hearing 9 participants (i.e. all) identified problems in speaking
information needs? 6 participants wanted text communication 4 participants wanted a letter - if it was easy read 1 participant did not mind Question 9 What should services do to make sure that you get communication support and accessible information quickly? “My community alarm service works really well, it makes me feel safe; but why do we have to pay for it?” Participants the concept of an emergency card with all their details on it that they carried with them. Some participants stated that they would feel okay wearing a bracelet or necklace which contained important information about them, but it needed to be fashionable. “It be good if some ambulance drivers had extra training in learning disabilities and Makaton” Some participants reported good experiences of response cars, for example “it helped to calm me down until the ambulance came” Question 10 Is there anything else we should think about to find out about your information and communication support needs? No responses. Question 11 Is there anything else that we should think about to record or share your communication support or information needs? 6 participants said yes 3 participants said no “I feel okay generally about having information shared about me, but I would like to be asked about ‘my story’ as well” Key Themes Easy read information is important. Training by people with learning disabilities is important. The first point of contact with a service – often a receptionist – has a crucial role in ensuring that contact begins with positive start. Participants think a ‘learning disabilities’ bracelet could help, and were positive about wearing one, if it was fashionable. Many of the participants had a health passport, and had found it useful.
Notes from Focus Group E held at Skills for People in Newcastle on 16 December 2013 participants took part in the Focus Group. Question/Area Comments General comments at the beginning of the session – health care One female participant commented that it was very important to her to be seen by a female doctor. Participants felt that involved in the training of health professionals was very important and was making a big difference to how things were being done. Some participants were involved in training through Skills for People. Participants wanted to acknowledge the excellent services provided by ambulance crews. One participant commented that their pharmacist was really helpful as they provided home delivery of prescriptions. However another participant noted that braille was available on the tablet pack, which was seen as being very helpful, but they wanted the same information to be routinely available in easy read as well. General comments at the beginning of the session – social care Participants commented that social care was very important – that they needed carers to help them with everyday tasks such as cooking. “I don’t trust my social worker – they try and tell you what is best for you” “I tell them what I want, but they don’t hear” “Sometimes they listen, sometimes they don’t” “I never see the same person twice” General comments at the beginning of the session – communication “I can really tell the staff that have had training by a person with learning disabilities – it should be a requirement for all medical staff to have specialist training by a person with a learning disabilities” “I think we should get them when they are first in training – they are more likely to listen!” Question 1 Do you find it difficult to see, to hear, to speak, to read or to understand what is being said? Very mixed reaction and responses from participants to this question. A number of participants said that they found it difficult to read information. “I have dyslexia, so could not read information” “It would depend on the situation and what was being asked” “I would ask for support” Question 2 Do you get help to communicate when you use NHS or Social “I always take someone with me [when I use services], as otherwise I would not understand. I organise it myself in advance” “I prefer it when I can talk directly to someone on a one-to-one basis”