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Patients With Rare Genetic Disorders To Be Fast-Tracked

Updated: May 8

NHS England has announced that it will fast-track hundreds of patients with rare genetic disorders. In a recent press release, the health service explained that it has launched a pioneering new service to help people with leukodystrophies to receive earlier and more accurate diagnosis and specialist care.


The plans are intended to help patients with inherited white matter disorders (IWMDs), which affect the central nervous system. The patients will have expedited access to specialist care teams, and will have the option of virtual consultations to reduce the travel requirements for face to face appointments.


John Stewart, Director for Specialised Commissioning at NHS England said: “This new service is a pioneering model of NHS care, with a combination of virtual and face-to-face care with access to a range of experts.”


He added: “This means hundreds of children and adults will see IWMD specialists and get a genetic diagnosis sooner. The new clinical registry also provides opportunities for clinicians to learn more about the condition, identify patients likely to benefit from trials of potential new treatments and will enable patients to share information about how they are feeling”.


Health Minister Helen Whately said: “This pioneering new service means people with rare IWMDs will be diagnosed earlier and treated faster. It’s thanks to the NHS successfully harnessing research and joining up specialist services.”


“Our Rare Diseases Action Plan committed to reducing health inequalities and improving the lives of people with rare diseases. This is an important step towards fulfilling those commitments”.


Meanwhile, progress has been made on reducing the number of people waiting over 18 months for elective care in England. Despite increased demand and the impact of industrial action, total numbers have fallen by 123,969 since September 2021 according to the latest figures released by NHS England.


NHS National Elective Recovery Director, Sir James Mackey, said: “Despite the impact of industrial action, covid, flu and a very difficult winter, it is clear that the NHS has done an incredible job on reducing the number of patients waiting 18 months for treatment.”


He added: “Ahead of the next milestone, these new figures show the remarkable work being done across the country with waits of more than 18 months now down four fifths on their peak, a reduction of over 45% in the last month alone.”


“It is testament to the joined-up working across the NHS, with colleagues pulling together and widespread innovative measures being rolled out by trusts, that we have been able to cut the longest waits for patients”.


The recent campaigns to encourage people with potential cancer symptoms has resulted in record levels of demand in the service. Over nine out of 10 patients who receive a cancer diagnosis start treatment within one month. Over 2.8 million people were tested for cancer symptoms last year, with 322,000 beginning a course of treatment.


If you are looking for data validation for RTT and Non-RTT (Follow-Up) Waiting Lists, please get in touch today.

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