Thursday 19 July 2012
Health Minister challenged on specialised services
Health Minister, Earl Howe, was challenged by Peers in a House of Lords debate yesterday on the new NHS commissioning set-up in relation to national specialised services.
Two of the Muscular Dystrophy Campaign's leading parliamentary supporters, Lord Walton of Detchant and Baroness Thomas of Winchester, made significant contributions highlighting the commissioning arrangements for muscular dystrophy and related neuromuscular conditions.
Baroness Thomas raised the issue of treatments for very rare neuromuscular conditions like Pompe disease and the value for money system that the Government is committed to introducing in January 2014:
The Department of Health says that the new system will give patients and clinicians greater access to clinically effective and cost-effective medicines. But experts are not convinced that the system will work without the AGNSS [Advisory Group for National Specialised Services] framework, particularly given the situation in Scotland where AGNSS does not operate. The last thing we want is to go back to the old days when people diagnosed with Pompe disease, for example-an ultra-rare but treatable neuromuscular condition which affects fewer than 100 people in England-were not always certain that enzyme replacement therapy would be licensed in England because NICE [National Institute for Health and Clinical Excellence] had to be satisfied that it would be cost-effective. Through the leadership of Sir Michael Rawlings, national commissioning of such orphan drugs was transferred to an advisory body which later evolved into AGNSS, and the dreaded threat of a postcode lottery was removed.
Lord Walton referred to Duchenne muscular dystrophy and that certain drugs are now in clinical trial which are showing promise in slowing the progression of this condition. These drugs are so-called molecular patches which mask defects in the actual gene in a form of exon skipping.
For these drugs to be effective, different molecular patches will have to be developed for different mutations. Speeding up that process for different mutations will be difficult but the safety issues are all the same. Lord Walton sought assurances that as these molecular patches for this condition become increasingly available that not every single patch is going to have to be tested and subject to regulatory control, and that regulation covering all these patches may be acceptable.
Earl Howe, responding to the contributions of Peers during the debate, outlined the future set-up of specialised services.
Instead of highly specialised services being commissioned nationally by the National Specialised Commissioning Team and specialised services commissioned on a regional basis by specialised commissioning groups, the new NHS Commissioning Board will take responsibility for commissioning all these services. That will all be under a national commissioning policy which will be sensitive to local requirements so that the needs of people with rare and very rare conditions are met.
The Muscular Dystrophy Campaign is committed to ensuring that the extensive work undertaken by the ten NHS Specialised Commissioning Groups in the national neuromuscular work plan is maintained and developed in the new NHS Commissioning Board set-up.
For more information about the debate and our parliamentary activity, please get in touch:
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