School of Health & Social Care

Why service users want to help

A carer's story


After caring for a dear friend and seeing the poor care experience she received in hospital, Pat decided she wanted to do something – both in memory of her friend and so that other elderly people didn’t suffer the same experience.

Several incidents during the care of her friend by health professionals gave Pat cause for concern. 'My friend had had some bad experiences on general wards due to poor communication between professionals. As her health declined I became more concerned about what might happen as she had begun to lose her verbal communication ability and was beginning to communicate more by touch and facial expression. I saw she was struggling to get attention from nurses and I felt dependent on other patients to look out for her.

'I understand the nurses' role is very difficult, but hospital can be an alien place and communication for the elderly can be difficult.' In contrast Pat found the care of her friend in ICU to be excellent and the district nurse was always very kind and attentive.

Following her friend's death, Pat's concern about her friend’s treatment made her to think about what she could do to improve the reception elderly people get when going into hospital and the attention they receive on a general ward. 'I approached Age Concern which led to me attending a 'Carers Together' meeting where I found that opportunities existed for carers to tell their story first hand to student nurses.'

'I understand the nurses' role is very difficult, but hospital can be an alien place and communication for the elderly can be difficult.'


Working with Teesside University


Sandra Dugan, Project Coordinator for Service User and Carer Involvement from the School of Health & Social Care, was at the meeting. 'I told my story to Sandra which led me to working with the University; I have since spoken to several groups of student nurses and more recently a wider range of students including physiotherapy students.'

My first session, with several other service users and carers, involved speaking to nurses on the Monday and returning on the Thursday to then hear them present back to us our stories. We all saw how interested, how receptive and how well the students understand the points we were trying to get across. I could see it would add value when they went into practice.'

'I have recently been involved in looking at the nursing syllabus and considering its content and the skill outcomes needed for effective care.' Pat feels her opinions have been very well received despite not being a health care professional. 'I have been listened to and felt valued and I must pay tribute to the academic staff of the School for this. I hope that through telling my story I am helping the patients of the future and doing something worthwhile in the memory of my friend.'

'I feel very comfortable coming into the School and am always greeted warmly, I feel a genuine care and concern among staff and students. I think the project helps to develop the professionals of tomorrow. Hearing real stories will help them implement good practice, prevent bad experiences and understand the importance of team work in the care environment'.


A service users story


'I work with the learning disability team in the School and tell students about what it is like to have a learning disability and be in hospital. I went into hospital when I broke my leg and had a very bad experience. '




Amanda is an honorary lecturer at Teesside and shares her experiences as a hospital patient with learning disabilities with students – a very brave thing to do when the audience can sometimes be over 100 people.

'I work with the learning disability team in the School and tell students about what it is like to have a learning disability and be in hospital. I went into hospital when I broke my leg and had a very bad experience. The nurses would not listen to what I was trying to tell them, they would not even tell me where the toilet was or how to use the menu, I had to ask the patient next to me for help.

'It was awful, my social worker didn't realise what was happening and my ex husband had to come to the hospital to help me. I think they ignored me because I have learning disabilities; they didn’t try to help me and didn't understand my disability or my needs. After spending many years in hospital I now live independently and have a community learning disability nurse who visits me, she is very friendly and helpful.


Telling the story to students


'I became involved with the University when working at Hart Lodge, a drop in and respite centre, as a receptionist. My line manager got in touch with Dave Mudd, Principal Lecturer, for learning disabilities and told him about my experience. After a few meetings at the University Dave suggested I told my story to students.

'Sometimes I tell my story with other speakers and lecturers and I have spoken to student learning disability nurses as well as general nurses, and doctors and psychologists, so they get an awareness of learning disability needs.

'I get asked questions at the end about my experience and the students are interested in what I say.' An evaluation takes place at the end of the sessions and Amanda is very pleased with the feedback she gets from students.

'I come into the University a few times a year when asked and find it a friendly place, students and tutors are welcoming and I am happy telling my story. I hope my story helps others to be treated better than I was and to be listened to and helped.' Amanda has also been involved in looking at the recruitment of student nurses and the questions applicants are asked as well as course development for learning disability nurses.