Service Users and Carers
The School of Nursing, Midwifery, Social Work & Social Sciences have formed a service users and carers group in response to student feedback and concern for the patient voice in the nursing curriculum. The service users and carers group has been going for 5 years and consists of service users, carers and academic staff.
There is a core group of 12-15 people. All have had experience of the health service or a health issue in some shape or form as either a service user and/or carer. Many of the members are active in the community with various organisations including:
- The Princess Royal Trust for Carers
- NHS Heywood, Middleton and Rochdale
- Salford Older People Partnership
- Greater Manchester Coalition of Disabled People
- British Diabetic Association Rochdale
- George House Trust
Our nursing students are exposed to the voice and experience of service users and carers at the very outset of their nurse education. All our student nurses attend and participate in the student service user/carer conference in the 5th week of their nursing diploma or degree course. So before going on clinical placements they hear the perspective of the most important people - the patient and their carers.
Core Members of the Group
Barbara has had type 1 diabetes for 52 years and has been the diabetes patient representative for the Heywood, Middleton and Rochdale Primary Care Trust for the past seven years, where she also sits on the Equitable Access Mobilisation Board and the Research and Development Team. She also sits on the NSF Local Implementation Team and is an executive board member of the Patients’ Council for the North-East sector of Greater Manchester covering Bury, Heywood, Middleton, North Manchester, Oldham and Rochdale.
She is also the treasurer of the Diabetes UK Rochdale Support Group and a member of the Rochdale User Carer Action Forum. Until two years ago she was a volunteer tutor on the Expert Patient Programme. During the last three years Barbara has been a member of the Salford User Care Forum speaking to students about living with diabetes.
Chris has chaired a patient and public involvement forum. He is currently a member of a local research ethics committee and a local involvement network. Chris is a patient representative with a Primary Care Trust. He is a keen advocate of user involvement and has been a service user advisor to a number of health and ageing research projects and has given presentations on a range of related subjects.
Chris has been involved in the voluntary and community sector at all levels for more than 25 years. He has also spent some considerable time in hospitals and has experienced health care within the community.
Lillian cares for her husband Roy who had a brain haemorrhage resulting in paralysis down his left hand side.
Joe took early retirement from his G.P. role together with his wife Ethna in 1989 who was 59 years old. Ethna was diagnosed as having Alzheimer’s six months after retirement. People around Joe assumed that Joe would know how to care for his wife because he used to be a G.P. However, Joe felt totally unprepared for the caring role Ethna’s diagnosis brought home with a vengeance his appalling lack of knowledge of, and training in Dementia, and how most of fellow health care professionals were in a similar situation hence his interest in the need for training in this field. Ethna died peacefully on 24/9/09 having in her later years been the beneficiary of the best of care by NHS personnel.
Helen is the Development Manager at Salford Carers Centre. The centre provides support for unpaid carers - that is anyone who looks after someone who can’t get by on their own whether it is a partner, relative, friend or neighbour. The centre offers information and advice on a host of topics, including benefits, support groups, carers assessments, local voluntary organisations, training in caring and help in getting back in to work, further education or leisure activities. Salford Carers Centre is a member of the Princess Royal Trust for Carers.
Previously Helen worked at the Macmillan Information and Support Service Centre based at Wythenshawe Hospital, South Manchester and also as Complementary Therapy Co-ordinator working within hospices and cancer care centres in the North West.
When worked as at Therapy Co-ordinator, Helen was involved in complementary therapy grant funded research and audit projects, managing teams of project therapists and delivering and developing the touch therapy services. She has also worked within administration roles including Multi-Disciplinary Team (MDT) Co-ordinator for Cancer Services teams.
Having completed her aromatherapy training in 1994, Helen initially built up a successful private practice before being offered the opportunity to develop complementary therapies within hospices.
Helen was originally a radiographer/ultrasonographer and working at St Bartholomew’s Hospital in London provided her an excellent grounding in working with patients and carers.
Terri said: “Having worked in a large building society for many years becoming a parent was life changing in more than the usual ways.” Terri is now active with various organisations, in a variety of roles/ways such as a Trustee for (DPN) Disabled Parents Network, on the Management Committee of Embrace Wigan & Leigh, RNIB VCCO, Citizen Leader and Link Steering Group.
Terri has been involved in and contributed to consultations and research projects such as ‘Outcome Focussed Reviews’ Guide by DoH, Strathclyde University ‘Disabled Parents Involvement in their Children’s Education’, Healthcare Commission Maternity Services Review 2007, SCIE Knowledge review 11: Also delivering disability awareness through ‘TADPOLE’ within Embrace Wigan & Leigh to children, within of the PSHE & C Curriculum, Brownies, Beavers and adults, including statutory staff, students etc. Through DPN Terri provides peer support as well as training & presentations to Social Work, Nursing & Midwifery students and work in partnership with professionals working with families as well as supporting those families directly.
Terri uses his perspectives as a parent, self advocate, family member, with caring responsibilities for his disabled (acquired & inherited conditions) and non disabled children, mother, nephew and friend in a problem solving way. Having accessed health and social care services throughout his life, above and beyond that of his peers, Terri has a variety of experiences and knowledge to share and can be used as an effective learning tool for many.
Daniel is Assistant Anglican Chaplain to the University and has worked within hospital chaplaincy. The Chaplaincy is a service giving support to the whole University community; staff as well as students.
His role as a Service User and Carer is as a parent who has suffered the tragedy of losing a child. He and wife Rachel were expecting daughter Abigail when it was discovered very late in the birthing stage that she had anencephaly. The experience, though naturally traumatic and distressing, held great significance as it showed the strengths and abilities of the nurse and midwives present.
Though one of tragic circumstance, the story Daniel tells highlights those areas of excellent practice which were experienced and is told with the desire that those actions and caring behaviour be replicated in all areas of medical practice.