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“The new NHS” What will it mean to people with rare genetic conditions?

This was the question at the annual Genetic Alliance UK conference yesterday.  Genetic AllianceUK is the national charity of patient organisations and has a membership of over 140 charities supporting all those affected by genetic disorders. 

With the significant changes that are being proposed for the NHS the concern is those with rare genetic conditions will be left without the support and services they need.  It has been proposed that responsibility of care will move from the Primary Care Trust (PTC) to GP’s, and the worry is that there are not enough GP’s who have specialist knowledge about these rare conditions to effectively support these patients needs.  Some of the conditions are so rare that they may only effect a hand full of people in the UK and if you are one of these people the likelihood that your GP has a specialism in your condition is very slim. 
Genetic Alliance UK have worked with Insurancewith over the last 12months, helping us to understand the very complexed rare genetic conditions their member charities support.  In the past people with these rare conditions have been unable to find affordable pre existing medical condition travel insurance, not because they posed a huge risk, but because their condition was either not understood or had never been heard of.  At Insurancewith we have been growing and amending our medical screening system to take into account these conditions and are now able to offer medical conditions travel insurance for an every growing number of rare conditions.
Genetic Alliance UK have a big job ahead of them supporting and advising their members through these reforms and Insurancewith recognises the valuable work they do, and to support them donates  £1 to them from every policy that is sold via their referral.


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