About The Person council for patients and relatives/carers

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

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

Cajsa Lindberg

I have experience of type 1 diabetes since the age of 13 in 2002, and brain cancer, pituitary failure and other cancer complications since 2016, as well as of being a relative of a mother with heart problems. I am passionate about increased patient participation and involvement, organizational development and equal access to care and medicines globally.

I work internationally with health issues, as lecturer, consultant and a number of boards and committees. Former Chair of the Swedish Diabetes Association, the Diabetes Foundation and Young Diabetes. I live in Stockholm.

e-mail: cajsa.c.lindberg@gmail.com https://www.linkedin.com/in/cajsalindberg/

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.com

e-mail: eskil.degsell@sll.se
https://cancercentrum.se/stockholm-gotland/

www.nocriic.org

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/

Hanna Svensson

I am a rheumatic and a diabetic, a committed Lead patient, patient activist and I work towards increased patient participation. I like development and problem solving. I see the sum of health care as being self-care plus care.

I am a researcher and a civil engineer in technical physics. I sit on the program council for Vitalis, Europe's largest eHealth fair.

Blog: http://svenssonhanna.se/
Dagens Patient/Spetspatienter http://dagenspatient.ringla.nu/
Twitter: @svenssonhannase
 

Inger Ros

Extensive healthcare policy experience in the Stockholm Region. Own experience through a heart event in 2009 and considerable own experience from two sick siblings. 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.

Chairman of the Swedish Heart and Lung Association since 2010, when I left full-time politics. Serves on the Swedish Government's Patient Council, Disability Delegation and as a patient expert in several investigations, including horizontal care, the E-health authority. Also sits on the umbrella organization The Swedish Disability Rights Federation board. Within the Swedish Heart and Lung Association, we have been running the campaign “Seen in health care” for a number of years (campaign for person-centred care).

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

Malin Grände

I have a serious eye disability, a progressive disorder, which took a long time to have diagnosed in my childhood. It poses a challenge to me and my surrounding environment, not least health care, when it comes to seeing me as the person I am and not just the disability I have. In my work I meet people on a daily basis who have various and manifold relationships to health care, some successful, others less desirable.

I am the Operational Manager at Rare Diseases Sweden. Our top issue is ensuring that persons with rare diseases are able to access as good care as persons with more ordinary conditions. I live in Stockholm.

www.sallsyntadiagnoser.se
e-mail: malin.grande@sallsyntadiagnoser.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/
Chalmers https://www.chalmers.se/sv/personal/Sidor/pamelal.aspx
RECYCLE ME https://www.recycleme.life/

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