Welcome to the patient zone. You will find health resources, access to patient information leaflets, information about events and our directory of available resources for people living with haemoglobinopathies and rare anaemias.
Information about events
Our network hosts a number of events for both adult and paediatric patients and carers. Below is a list of regular meetings and events, if you are interested in attending please get in touch. We also hold some additional events throughout the year – we will advertise these via our News and Updates, so please check here to see if we have any additional events coming up.
Adult patient support group
First Wednesday of the month, 12-1pm via MS Teams
Purpose of the group: The support group is a chance to come together to share your experiences of living with sickle cell or thalassemia with others who also live with these conditions. The sessions are for facilitated peer support, not group therapy.
Who is the group for? The group is for the patients within the Adult Haemoglobinopathy Service, University Hospitals Bristol and Weston NHS Foundation Trust.
Who will facilitate the sessions? The group will be facilitated by clinical staff from the UHBW Haemoglobinopathy Service. This will normally be one of the Clinical Nurse Specialists and the Clinical Psychologist.
What did others think of these sessions?
- “It has been helpful hearing others’ views”
- “It’s great talking to other people with the same diagnosis”
- “There’s a sense of community. That there are others that really understand what you’re going through.”
Age 14-18 patient support group
One day, every school holiday from 11-12pm
Purpose of the group: To bring young people together to give them a chance to discuss any concerns they have in regard to transitioning to adult services and to build bonds with other young people that are experiencing the same health challenges.
Who is the group for? Face to face for Bristol paediatric patients from 14-18 years old.
Who will facilitate the sessions? Sarah Muddle Clinical Psychologist, Hayley Wiles Benign Haematology Family Support Worker and Melanie Marsh Haemoglobinopathies Adult Support Worker
Patient Feedback
We always welcome feedback about the service we provide. This feedback helps us make changes to improve the care our patients receive.
The survey is for patients with a diagnosis of Sickle Cell, Thalassaemia, rare inherited anaemias, and other haemoglobinopathies.
There are different types of surveys depending on the patients age or whether you are a parent/carer of a patient and want to complete the survey on their behalf. Please select the correct link below. If you are unsure which survey to select please contact our team and we would be happy to assist.
To complete the survey if you are an adult patient simply click on this link. (Adult patient is anyone with one of the above mentioned diagnoses and is being looked after by the haemoglobinopathy team at Bristol Haematology & Oncology Centre (BHOC).)
If you are a parent/carer of a young person with one of the above mentioned diagnoses please click on this link to complete the survey. (A young person is anyone up to the age of 17 and is being looked after by the haemoglobinopathy team at the Bristol Royal Hospital for Children (BRHC).)
If you are a young person with one of the above mentioned diagnoses please click on this link to complete the survey. (A young person is anyone up to the age of 17 and is being looked after by the haemoglobinopathy team at the Bristol Royal Hospital for Children (BRHC).)
If you are a child with one of the above mentioned diagnoses please click on this link to complete the survey. (A child is anyone up to the age of 11 and is being looked after by the haemoglobinopathy team at the Bristol Royal Hospital for Children (BRHC).)