About The Person Council for Patients and Relatives/Carers
A group of persons with years of personal experience of Swedish health care.
The GPCC Person Council for patients and carers consists of a group of persons with many years of personal experiences of Swedish health care, either as patients and/or relatives/carers (or both).
Their collective experience covers a wide spectrum of various health care environments; hospital care, primary care, psychiatric and child health care etc. They have experienced an equally wide variety of specialist care, for example diabetes, cancer, heart conditions and psychiatry.
Aim: to validate and co-create
The aim of this Council is to validate GPCCs activities and research from a patient and/or relative/carer perspective, as well as receive the council members input, and to co-create ideas, content and activities related to person-centred care.
The Person Council normally meets around six times per year, and members participate regularly in various GPCC education, implementation and communication activities.
Involvement and co-creation
Person Council members have for example:
- co-authored the majority of the GPCC text books on person-centred care.
- co-created an information campaign about person-centred care aimed at patient- and relative organisations.
- co-created a course about person-centred care for patient organisations together with the Swedish Disability Rights Federation and GPCC.
- developed scoring sheets and participated in assessment of project applications at GPCC.
- been Mentors on some of the University of Gothenburg/Sahlgrenska Academy courses on person-centred care.
- taken part in implementation work in Swedish health care settings.
- been members of other National and Regional Patient Councils, for example at The Swedish Agency for Health and Care Services Analysis.
- presented at and moderated international and national conferences.
- co-created various communication and public engagement initiatives, such as opinion pieces and seminars during the University of Gothenburg Science Festival, The “Try My Seat” installation during Kvalitetsmässan, the Ubuntu exhibition in a hospital ward and other major conferences.
Read the stories/narratives from some of the present and past Person Council members here.
Members of GPCC Person Council for patients and carers from July 2020
|
Name |
General experience of health care etc. Reason for being in the Council |
Works/has worked as and/or does |
Link to personal web page, contacts or similar, if applicable |
|
|
Ann-Christine Baar |
I cared for my husband who had cancer until his death in October 2020. A painful and educational journey from illness, diagnosis, treatment and end-of-life care. For almost my entire professional life, I held various positions in primary care and have met people of all ages there and I have seen the importance and, unfortunately, often lack of person-centredness. |
I am retired since 2012 and active within the SPF Seniorerna - The Swedish Association for Senior Citizens locally in Partille Municipality, regionally as chairman of the SPF Seniorerna Bohus district and nationally as a member of the SPF Seniorerna Steering Group. I am a member of the municipal pensioners' council in Partille Municipality, a member of the sub-regional pensioners' council Region Västra Götaland VGR, Regional Pensioner’s Council VGR and Reference group Mouth and Dental Health for the Elderly VGR. Part of the the Think Tank and Network for Health Care NHS. I worked within VGR until the age of 68. My last assignment was as Project Manager for "The good life for diseased elderly in VG", an action plan. Before that, I was Primary Care Area Manager at Hisingen in Gothenburg for about 15 years. Masters in Nursing, various courses at the then Nordic School of Health Care and at University of Gothenburg. District nurse and Reg. Nurse. |
I have my own website but it is not up to date and I am not using it at the moment. Here you can read a little more about me: www.baar.se/seniorkonsult
SPF Bohus District web page https://spfseniorerna.se/bohusdistriktet |
|
|
Annika Lindström |
I have a son who will turn 18 this autumn who has autism. I’m a member of the board of the Autism and Asperger Association and have previously been Chairman of the board of the Autism and Asperger Association District of Gothenburg. |
I have been a member of the Council for questions regarding disabilities in the City of Gothenburg for seven years. I am also a member of a reference group tied to that council who discusses school issues for students with disabilities. I represent the Autism and Asperger Association District of Gothenburg in a reference group to the Theme Group Children and Young People in Care Cooperation in Region Västra Götaland (VGR) and I am part of the group that develops guidelines for SIP meetings for children and young people in the region. I work as Operations Manager at Antidiskrimineringsbyrån Väst, which is an anti-discrimination agency for western Sweden and serve 34 of VGR’s municipalities. I represent the agency in VGR’s council for human rights. |
Autism- och Aspergerförbundet www.autism.se Autism- och Aspergerföreningen distrikt Göteborg www.autism.se/goteborg Antidiskrimineringsbyrån Väst www.gbgrc.se |
|
|
Eskil Degsell |
I have been asthmatic and allergic since childhood. I am also a carer of my wife, who is diagnosed with a malignant brain tumour. During a year I spend many hours in health care clinics and, in between those physical visits, I in daily dialogue with health and social care personnel. I hope to be able to contribute with an integrated approach in person-centred care where all parties can contribute according to strength and ability. |
I work as a Process and Project Manager at the Regional Cancer Center Stockholm/Gotland with a focus on next of kin involvement. I conduct a great deal of work in developing and evaluating a complex health intervention around seeing and strengthening roles and relationships from diagnosis to death and a little bit further in cancer care. I participate in the development and evaluation of a number of other complex interventions such as PROM in clinical routine (Symptomics) and New medical assessment. I am also a member of the management group for Brain Tumors and NOCRiiC (Neuro oncology clinical research, innovation, implementation and collaboration) at Karolinska University Hospital. I am linked to research in the PCM program and Ingemar Ernberg's research group at MTC, Karolinska Institutet. I am a member of the board of the Swedish Brain Tumor Association. I am a member of Vårdanalys user council and the SNS patient and elderly council. |
Eskil Degsell e-mail: eskil.degsell@sll.se https://ki.se/en/cancerresearchki/personalised-cancer-medicine-pcm-program http://www.hjarntumorforeningen.se/ https://www.vardanalys.se/om-vardanalys/organisation/patient-och-brukarradet/ https://www.sns.se/forskningsprogram/vardens-och-aldreomsorgens-organisering-och-finansiering/ |
|
|
Inger Ros |
Extensive healthcare policy experience in the Stockholm Region. Own experience through a heart event in 2009 and cancer and heart attack in the autumn of 2022. Passionate about partnerships in care between patient, care and self-care. Person-centred care is the future for patients to have a smooth care chain, to give people not least with several chronic diseases, a good quality of life and for society it can only result in benefits. |
I was chairman of the Swedish Heart and Lung Association for 12 years until 2022. I am a member of the board of The Swedish Disability Rights Federation. I am also a member of the government's patient council and the patient council, The Swedish Agency for Health and Care Services Analysis and the government's disability delegation. I am a patient co-researcher in a GPCC project. During my time in the Swedish Heart and Lung Association, I was involved in starting the public awareness campaign “Seen in Health Care” (Person-centred care), which is still running. |
https://www.hjart-lung.se/sedd-i-varden/ | |
|
Leif Sundberg |
I have had type 1 diabetes for 35 years, ie half my life. I have diabetic complications. I have worked in healthcare for over 40 years. I work actively with diabetes issues in different contexts. I feel good about making others feel a little better. |
I am retired. I have a degree in Economics from the Gothenburg School of Business. I worked for four decades at Sahlgrenska University Hospital with financial issues at various levels. I have worked / work as a teacher and lecturer. I have run a discussion group for people with type 1 diabetes for 9 years. I am the Chairman of the Gothenburg Diabetes Association. I am also a member of a number of working groups, including in the foot area. I live in Mölndal. |
e-mail:ljb.sundberg@gmail.com Webpage: diabetesgbg.se |
|
|
Margareta Haag |
I have more than 25 years of own patient experience of cancer. I have lymphoma and lymphedema. Am engaged in person-centered care and co-creation in care, self-care and equal fair care. |
|
https://www.linkedin.com/in/margareta-haag-95a06213/?originalSubdomain=se |
|
|
Pamela Lindgren |
I was involved in a serious accident and suffered a spinal cord injury, which caused permanent functional limitations. Has extensive experience of meeting patient and caregiver as patient but also as consultant and designer in care and care. |
I have a Master's degree in Fine Arts from HDK / Gothenburg University. I work as a designer and consultant in graphic, product and industrial design, as well as an industrial doctoral student at Chalmers in the Department of Design & Human Factors, Department of Industrial and Materials Science. My research is about user acceptance and adoption. I am also the originator of and involved in non-profit projects RECYCLE ME with the aim of disseminating knowledge and information about organ donation. |
Pamela Lindgren Design Studio: http://pamelalindgren.com/ |
|
|
Rolf Åström |
My experience includes care and nursing as a relative. I have been my mother's support for ten years in terms of care and nursing. She passed away in March 2020 at the age of 91. Many practical things needed to be solved but I also dealt with the loneliness she felt. I believe that information and communication are fundamental. |
I am employed at Region Värmland with the task of coordinating eHealth issues. I am active in The Relatives’ Organisation in Karlstad and Värmland. Formerly employed by the County Council in Värmland with responsibility for eHealth and also Inera. I live in Karlstad. |
e-mail: rolf.astroom@ownit.nu |
|
|
Susanne Tell |
I have 20 years of own experience of psychiatry, as well as many years of experience from the non-profit sector regarding various issues related to the psychiatric field. |
I work as a coordinator for Hjärnkoll in Västmanland, which works to increase knowledge and break the stigma surrounding mental illness. I am also active as a lecturer and author mainly linked to suicide prevention. I live in Fjugesta, Örebro County. |
e-mail: susanne.m.tell@gmail.com |
|
|
Vinh Phillips Ingvason Nguyên |
Was diagnosed with HIV at the age of 18 I and therefore has an annual dialogue with health and healthcare. Has in addition to this encountered health care on several different occasions to rehabilitate sports injuries, both physical and psychological. Mainly has experience from care and social care from the not-for-profit sector. Pursues issues concerning people living with HIV, people exposed to incest and other sexual abuse in childhood and questions regarding LGBTQIA+. Will be able to contribute to person-centred care with an intersectional, inclusive and norm-critical way of thinking. |
Lives in Gothenburg. Is a Board member and Secretary for Noah's Ark Gothenburg and Västra Götaland, which works with Sexual and reproductive health and rights. Sits on Posithiva Gruppen's Selection Committee and the Knowledge Network project group for young people living with HIV, where the aim is to spread knowledge within the target group, but also to society in general. Designs, coordinates and participates in various knowledge dissemination activities. Also works as a support person for Rise (the National Association against incest and other sexual childhood abuse) and offers various forms of support to the members. I have a Bachelor's degree in Gender studies from the University of Gothenburg and am currently studying International human rights via the same University and the Convention on the Rights of the Child from a Swedish perspective via Lund University. |
e-mail: vinh.phillips@gmail.com |
The Person Council's Management
Håkan Hedman is Chair of the Person Council. He is Chair of the Swedish Kidney Association and patient representative and member of the GPCC's Steering committee.
Eric Carlström is Acting Vice-chair. He is Professor of Health Care Sciences specialised in Management, Sahlgrenska Academy, University of Gothenburg and a member of the GPCC's Steering committee.
Jeanette Tenggren Durkan is administrator and secretary.
Person council member narratives
Read some of the narratives of current and former members of the Person Council, which describe their personal journeys through The Swedish health care system, as well as their thoughts on person-centred care. Click here to go to their narratives.