Tweet
Dear Rare Disease UK member,
Report into the value of care coordinators
* If you cannot view this email properly, it can be viewed at www.raredisease.org.uk/news/carecoordinators.htm *
We’re putting together a report to highlight the value of care coordinators/care advisors. This report will investigate the benefits care coordinators bring both to patients and to the NHS and help us in our work to ensure that all patients affected by multi-system rare diseases have a named care coordinator. RDUK has been campaigning for this to be part of the forthcoming national plan for rare diseases.
The exact role that a care coordinator plays in a person’s care depends on the nature of the condition. It can also depend on whether the role is provided by the NHS or by patient organisations. Care coordinators generally ensure that a patient can access the services they need, when they need them. They generally also play an important role in providing information and support to patients and families about their condition, and sometimes more broadly, for example, about social services and welfare.
We are looking to speak to people about their experiences in this area. This includes patients (or their carers) who currently benefit from a care coordinator, patients who previously had a care coordinator but the post was discontinued due to lack of funding, people who work as care coordinators, clinicians who can speak about the value of care coordinators etc.
If you are willing to speak to us about this topic, have any information that might be useful to this work, or would like further information please contact samantha@raredisease.org.uk or 02077043141
Please feel free to pass this email on to anyone you know who may have an interest.
Best wishes,
Samantha Reeve
Policy Research Officer
RDUK Secretariat
Rare Disease UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
UK
http://www.raredisease.org.uk/uk-rar...e-strategy.htm Important to know about worldwide rare disease networks. These organisations are working on research, health service awareness, coordinated treatment provision and developing 'orphan' drugs. They can help us find specialists and research centres and access unusual treatments.
Report into the value of care coordinators
* If you cannot view this email properly, it can be viewed at www.raredisease.org.uk/news/carecoordinators.htm *
We’re putting together a report to highlight the value of care coordinators/care advisors. This report will investigate the benefits care coordinators bring both to patients and to the NHS and help us in our work to ensure that all patients affected by multi-system rare diseases have a named care coordinator. RDUK has been campaigning for this to be part of the forthcoming national plan for rare diseases.
The exact role that a care coordinator plays in a person’s care depends on the nature of the condition. It can also depend on whether the role is provided by the NHS or by patient organisations. Care coordinators generally ensure that a patient can access the services they need, when they need them. They generally also play an important role in providing information and support to patients and families about their condition, and sometimes more broadly, for example, about social services and welfare.
We are looking to speak to people about their experiences in this area. This includes patients (or their carers) who currently benefit from a care coordinator, patients who previously had a care coordinator but the post was discontinued due to lack of funding, people who work as care coordinators, clinicians who can speak about the value of care coordinators etc.
If you are willing to speak to us about this topic, have any information that might be useful to this work, or would like further information please contact samantha@raredisease.org.uk or 02077043141
Please feel free to pass this email on to anyone you know who may have an interest.
Best wishes,
Samantha Reeve
Policy Research Officer
RDUK Secretariat
Rare Disease UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
UK
http://www.raredisease.org.uk/uk-rar...e-strategy.htm Important to know about worldwide rare disease networks. These organisations are working on research, health service awareness, coordinated treatment provision and developing 'orphan' drugs. They can help us find specialists and research centres and access unusual treatments.