Influencing Change Our primary focus is on the patient; offering advice, information, guidance and support.  However, many patients advise us that they struggle to access services and timely treatment.  With this in mind the Gorlin Syndrome Group are committed to working with a host of national organisations to influence change and ensure equality of services and treatments for those affected by the condition.

National Voices (previously Long Term Conditions Alliance) is the new umbrella organisation established by and for the voluntary sector.  It brings together all national voluntary organisations representing users of health and social care to give them a stronger voice in policy-making.

Skin Care Campaign is a national umbrella organisation representing the views of patients with skin conditions in the UK.  Links to Skin Care Campaigns in Scotland and Wales.

 

Genetic Interest Group (GIG) is a national alliance of patient organisations which support children, families and individuals affected by genetic conditions.  

 

Rare Disease UK a national alliance for people with rare diseases and all who support them.

 

NHS Connecting for Health is currently conducting a consultation with the public and healthcare professionals on the use of patient information for purposes of health research and managing and planning care. To participate in the consultation click on the link above and access the on-line questionnaire.

 

Skin Care Campaign have contacted us with details of QOF Public consultation on GP Quality incentive scheme.  It seems ridiculous that with 25% of all GP appointments being about some sort of skin condition that there isn't a QOF to both monitor and motivate the GPs. A QOF or QOFs in skin care would undoubtedly raise the profile of dermatology in primary care and consequently either directly or indirectly benefit everyone with a skin condition.

 

GIG Patient Partner Project - Research is underway on patients' involvement in experimental clinical research within Europe. The study, which will take a close look at the part patient organisations play and are willing to play in experimental clinical research.

Patient Partner is a three year project funded by the European Commission. The Genetic Dutch Alliance has joined forces with three European partners, the Genetic Interest Group (GIG), the European Genetic Alliance Network and the European Forum for Good Clinical Practice. The work will focus on major diseases as well as rare illnesses.

The results of the study will be discussed in a number of workshops throughout Europe and will assist in producing guidelines and recommendations of the part patient organisations can and are willing to play in clinical research. The recommendations will be presented to European and national policy makers, scientists and the biopharmaceutical industry.  In line with the goals of the study, a European network will be founded to support the involvement of patient organisations in clinical research.

The Project leaders believe that involving patient organisations in an early stadium of clinical research, as equal partners, contributes to research that is better adjusted to the actual problems of patients. Furthermore, the partnership contributes to speeding up research, improving its quality, giving more insight into the possible benefits and disadvantages and finally to better healthcare.

 

NICE consultation on Public Health intervention - Prevention of Skin Cancer.  The Gorlin Syndrome Group along with other voluntary sector organisations and clinical leads across many hospital trusts participated in this consultation.  NICE took on board many recommendations from participants and these have been included in the scope of the second draft. 

 

	This page will be updated with new articles as requests are received.