NBS Campaign Update

Posted on: 08/06/2021

Further to our recent meeting with Baroness Blackwood, the newborn screening stakeholdler group has been working on reviewing our campaign. Given the huge number of health issues now jostling for priority as we are beginning see some light at the end of the Covid tunnel, we have decided to streamline our campaign into 3 clear key policy changes which would address the problems with the system now and also future-proof it for the increased work created by rapid advances in science and technology like gene therapies and genomic screening.

Nickie Aiken MP subsequently arranged for a meeting with Lord Bethell, Parliamentary Under Secretary of State at the Department of Health and Social Care, and key members of his team at the DHSC. We pitched our proposed policy changes to them and they were met with resounding support, in Lord Bethell's words the changes were "well thought-out, justified and realistic". This was another excellent endorsement of our work. Lord Bethell encouraged us to direct our asks into The UK Rare Diseases Framework, which is currently being developed. The RDF lists the priorities and underlying strategic themes that detail how the UK will address the challenges faced by those living with rare diseases. The RDF outlines 4 high-level priorities for rare diseases: 1. helping patients get a final diagnosis faster; 2. increasing awareness of rare diseases among healthcare professionals; 3. better coordination of care; 4. improving access to specialist care, treatments and drugs. Our policy changes are releveant to both priorities 1 and 4.

Our next steps were to unite the rare disease community to agree to developing and promoting the campaign messages. Whilst there will always be individual conditions striving for additon to the heelprick, the changes which we are asking for are over-arching and will benefit ALL conditons which are applicable to NBS. We are delighted to have had some new stakeholders join the group and also to have the invaluable support of Genetic Alliance UK, who have done much important work pushing for NBS reform in the past. Today Nickie Aiken gave our campaign a further boost by calling on Health Secretary Matt Hancock to support urgent expansion of our NBS programme which, as you can see, met with an incredibly positive response. Further details of the aforementioned proposed policy changes, plus a list of stakeholders, can be found on the NBS Campaign page.