Five minutes of your time can help create a service model for people with Huntington's disease
This survey is now closed
We are pleased to announce that we are working in partnership with Kent Surrey Sussex Academic Health Science Network, Guildford and Waverley ICP / Surrey Heartlands ICS and Roche Products Limited to develop a service model for Huntington’s disease.
The NHS does not currently have a service model that outlines the delivery of care for patients with Huntington's disease. This means that the standard of care for patients can vary. This project aims to build on existing services to develop a model that is fit for purpose and provides equitable care for Huntington’s disease patients.
Initially, the model will service Surrey with the hope of rolling it out across the whole of England and Wales in the future.
About the survey
The purpose of this survey is to seek the views of patients, families and carers, to understand where current care services provided by the NHS and organisations such as the Huntington’s Disease Association are working well. The NHS and Huntington's Disease Association will be able to identify themes and opportunities for service redesign and findings from this survey will inform the development of a proposed service model.
Who can take the survey?
This survey is open to anyone who is directly affected by Huntington's disease. This includes those who are have tested positive, those at risk of developing Huntington’s or those who have had a negative test result as well as family members and carers.
Responses to this survey are completely anonymous.
Why get involved?
We want everyone affected by Huntington’s disease to be heard and to receive the best possible care. It is so important that we hear from those whose lives are affected by the disease across England and Wales so we can represent all views and experiences.
“This survey offers the unique opportunity for the Huntington's community to have their say into what a service model for Huntington's disease should look like. The NHS currently does not have a service model for Huntington's disease which leads to a huge variation of support received. This survey offers the opportunity to create one. This will promote better care, understanding and support for those affected by Huntington's disease.” - Cath Stanley, Chief Executive of the Huntington’s Disease Association
How to take the survey?
This survey is now closed
If you would prefer to complete a survey by phone, contact 0151 331 5444 or email [email protected] to let us know and we will arrange a time to give you a call.
Likewise, if you have any questions about this survey or are affected by Huntington’s disease and are looking for support, please contact [email protected] or call 0151 331 5444.
This survey is now closed
We are pleased to announce that we are working in partnership with Kent Surrey Sussex Academic Health Science Network, Guildford and Waverley ICP / Surrey Heartlands ICS and Roche Products Limited to develop a service model for Huntington’s disease.
The NHS does not currently have a service model that outlines the delivery of care for patients with Huntington's disease. This means that the standard of care for patients can vary. This project aims to build on existing services to develop a model that is fit for purpose and provides equitable care for Huntington’s disease patients.
Initially, the model will service Surrey with the hope of rolling it out across the whole of England and Wales in the future.
About the survey
The purpose of this survey is to seek the views of patients, families and carers, to understand where current care services provided by the NHS and organisations such as the Huntington’s Disease Association are working well. The NHS and Huntington's Disease Association will be able to identify themes and opportunities for service redesign and findings from this survey will inform the development of a proposed service model.
Who can take the survey?
This survey is open to anyone who is directly affected by Huntington's disease. This includes those who are have tested positive, those at risk of developing Huntington’s or those who have had a negative test result as well as family members and carers.
Responses to this survey are completely anonymous.
Why get involved?
We want everyone affected by Huntington’s disease to be heard and to receive the best possible care. It is so important that we hear from those whose lives are affected by the disease across England and Wales so we can represent all views and experiences.
“This survey offers the unique opportunity for the Huntington's community to have their say into what a service model for Huntington's disease should look like. The NHS currently does not have a service model for Huntington's disease which leads to a huge variation of support received. This survey offers the opportunity to create one. This will promote better care, understanding and support for those affected by Huntington's disease.” - Cath Stanley, Chief Executive of the Huntington’s Disease Association
How to take the survey?
This survey is now closed
If you would prefer to complete a survey by phone, contact 0151 331 5444 or email [email protected] to let us know and we will arrange a time to give you a call.
Likewise, if you have any questions about this survey or are affected by Huntington’s disease and are looking for support, please contact [email protected] or call 0151 331 5444.