Genetic Alliance UK - Views & Policy:
Genetics in the NHS
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Genetic Healthcare Delivery in the NHS
In one sense a genetic condition is just like any health problem, it affects one or more of the body’s systems, and a specialist in healthcare for those systems will deliver healthcare to those affected by the condition.
The unique characteristic of genetic conditions is that they can be carried and passed on to succeeding generations, and that their progress and natural history is predictable, to some extent, by the identification of certain genes in a patient’s DNA. This component of healthcare for patients affected by genetic conditions is delivered by Regional Genetic Services in the NHS.
To access a Regional Genetic Service, you must contact your GP, who will arrange a referral for you. Here is a list of the Regional Genetic Services in the UK.
Getting the best out of the NHS can be difficult for patients affected by inherited health conditions. Genetic conditions are often rare, which makes it unlikely that a healthcare professional has encountered a patient with the condition before, and makes diagnosis difficult.
Even after diagnosis, the pathway through the NHS for a patient is not always clear or simple. Genetic Alliance UK has a number of projects that aim to help patients with this problem.
Genetic Alliance UK carried out a unique and innovative user-led project to develop Family Route Maps as a Tool to help families with genetic conditions to access appropriate information and services in the UK, worked in partnership with individuals and families affected by the following genetic conditions: Barth syndrome; Gorlin syndrome; Multiple Endocrine Neoplasia Disorders (MEN); Myotonic Dystrophy; Nail Patella syndrome; and Syndromes Without A Name (SWAN).
More details on the: Family Routemaps Project.
Many of the conditions that affect our members are complex and require the attention of more than one healthcare specialty. Communication between these healthcare disciplines drastically improves the quality of healthcare delivered.
The Facilitating Networks project aims to help patient support groups to facilitate the development of networks of health professionals in order to improve information, care and services for patients and families affected by, or at risk of, rare genetic disorders.
You can read more about the: Facilitating Networks Project.