Peers debate changes to services for rare conditions

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On 6 May 2014 peers debated a Labour motion to regret regulations which create arrangements for the management of services for very rare medical conditions.

Labour claims the arrangements, enacted by the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) (No. 2) Regulations 2014, are much more fragmented than those in place prior to the Health and Social Care Act 2012.

Tabling the motion, shadow health spokesman Lord Hunt of Kings Heath told peers that "rare diseases are more a feature of health care in the United Kingdom than a lot of people realise".

An estimated 6% of the population suffer from a rare disease that affects fewer than 500 people in the UK.

"The separation of complex and interrelated functions between different national agencies risks the loss of efficiency and expertise in planning highly specialised services," said Lord Hunt.

The motion also stated that the process by which services for rare and very rare conditions are considered by the Prescribed Specialised Services Advisory Groups and NHS England are unclear and lacking in openness and transparency.

Responding to the debate, Health Minister Earl Howe said: "The government upholds the principle that no one should be left behind no matter how rare their condition is. People with rare conditions should receive the same access to high quality care as people with common conditions."

Explaining the need for the changes, he added: "Under the previous system it became clear there was variation in the range of services some specialised commissioning groups were commissioning and the policies that were being applied.

"This led to an inequity in access to services."

Lord Hunt withdrew his motion but closed the session by telling the House: "We will have to see how this systems proves to work but I do think there are risks that there is going to be widespread inconsistency and we need to keep this under very close review."

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