Get involved

We share an ambition to be equally well known for the experience of our patients.

One way we can achieve this is by involving patients and the public in improving our services. As healthcare workers we believe this is part of our professional role, whether we work with patients or 'behind the scenes'.

Patients can get involved by giving feedback as individuals, or as part of a group.

Patient Participation Group

The Oxford Blood Group has been active at the Trust since 2017, and feedback from the group has led to service changes and informed our research priorities.

We now have an OUH Patient Participation Group (PPG) for patients with inherited and acquired bleeding disorders.

A PPG is a group that meets regularly to focus on a particular services delivered by the Trust. Patients, carers and interested members of the public work with Trust staff to improve patients' experience of those services.

The group provides a platform for members to:

• share experiences
• represent the views of others
• raise concerns
• discuss how services can be improved
• highlight good practice
• agree terms of reference and achievable action plans to develop services
• provide a point of engagement between the public and researchers.

At Oxford University Hospitals, these groups have:

• led on the development and implementation of patient surveys
• commented on research proposals
• recommended changes to the hospital environment
• reviewed patient information
• provided feedback to clinicians on services
• helped to design projects.

Benefits for healthcare providers, patients and families can include:

• better quality and more responsive services
• improved outcomes and health for the population
• reductions in health inequalities
• greater local ownership of health and social care services
• understanding of why and how local services need to change.

Anyone with an interest in the work of a particular group can be involved, if they have the time available.

The membership of a group may include:

• individual patients and service users
• relatives and carers
• members of the public with expertise or interest
• members of patient groups, self-help groups and voluntary organisations.

We aim to meet face to face at the Oxford Haemophilia and Thrombosis Centre (OHTC) three times a year, and we would like individuals with a wide range of experiences and views to be involved.

If you are interested in participating, please contact us.

Shared Decision-making (SDM)

Shared decision-making is a process where the patient/carer and the healthcare team work together to make a decision about bleeding disorder care and treatment.

Decisions should be made through thoughtful consideration and discussion around the following:

• patient's life goals and how they are affected by their bleeding disorder
• therapies available to the patient
• information for each therapy.

For Haemophilia A and B, the World Federation of Hemophilia has a toolkit:

World Federation of Hemophilia Shared Decision Making Tool

For our patients in the adult service, and for children transitioning to the adult service, the following resources are available from readysteadygo.net:

• Transition: moving into adult care (pdf)
• Ask 3 questions (pdf)
• Moving on up together 16+ pathway (pdf)

Feedback

After your clinic appointment, we will give you an anonymised feedback form. We want to know if we are getting things right. Your answers will help us improve our service.

Registered patients receive an annual survey about their experience of the centre and their treatment.

For more information on how you can give feedback on our service, please visit:

Patient feedback