Skip to main content

Gorlin Syndrome

Volume 464: debated on Tuesday 9 October 2007

To ask the Secretary of State for Health (1) what assessment has been made of the standard of care provided to patients with Gorlin Syndrome; and if he will make a statement; (154740)

(2) what assessment his Department has made of the level of implementation of National Institute for Health and Clinical Excellence guidelines on improving outcomes for people with skin tumours;

(3) what representations his Department has received on patients with Gorlin Syndrome being unable to access treatment on the NHS; and if he will make a statement.

The Department has received a very small number of representations about access to treatment on the national health service for Gorlin’s Syndrome patients. No assessment has been made of the standard of care provided to patients with this syndrome.

However, in February 2006 the National Institute for Health and Clinical Excellence issued guidance on “Improving Outcomes for People with Skin Tumours including Melanoma”.

This guidance highlights a number of genetic conditions, including Gorlin’s Syndrome, which predispose a person to the development of skin cancer in later life and sets out recommendations for the management of people with this condition.

Specialised commissioning groups1 have been asked to produce implementation summaries setting out how they would implement this guidance over the next three years. These plans have been submitted to the National Cancer Action Team and are being checked for compliance against the guidance.

1 Specialised services, defined as those services provided in relatively few specialist centres to catchment populations of more than 1 million people, are either commissioned regionally by specialised commissioning groups (SCGs) or nationally by the National Commissioning Group (NCG) depending on the rarity of the condition or treatment. 10 new SCGs were established on 1 April 2007 to commission services on a regional basis, coterminous with the 10 strategic health authorities. (This succeeds a two tier arrangement of regional (eight SCGs) and local (25 local SCGs) commissioning groups.) Services commissioned at SCG level include haemophilia, blood and marrow transplantation, secure forensic mental health, spinal cord injuries, etc.