Health: Multiple Sclerosis

House of Lords written question – answered on 26th June 2012.

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Photo of Lord Jones of Cheltenham Lord Jones of Cheltenham Liberal Democrat

To ask Her Majesty's Government what are their plans to increase the range of publicly available data on (1) outcomes, and (2) services, for people with multiple sclerosis.

To ask Her Majesty's Government how many multiple sclerosis patients received treatment for their condition in (1) each primary care trust, and (2) England, in each of the past five years for which data are available.

To ask Her Majesty's Government what assessment they have made of the multiple sclerosis register; and what plans they have for improvements to the register.

To ask Her Majesty's Government whether the forthcoming commissioning outcomes framework will include indicators on multiple sclerosis.

Photo of Earl Howe Earl Howe The Parliamentary Under-Secretary of State for Health

Information on the number of multiple sclerosis (MS) patients receiving treatment for their condition is not available in the requested format.

Information on MS patients who received treatment as admitted patients in hospital has been placed in the Library.

On 21 May 2012, the Government published their information strategy for health and social care in England. The strategy, entitled The Power of Information -Putting Us All in Control of the Health and Care Information We Need, sets a 10-year framework for transforming information for health and care. Although the strategy does not make specific references to people with MS, it sets out a vision in which information reduces inequalities and benefits all.

Although a small number of actions will need to be led nationally, many more actions will require local decisions, local leadership and local drive. Implementation will be driven at the local level, responding to local priorities and needs across health, social care and public health. Consequently, while the information strategy sets a shared, coherent vision for information, more detailed implementation plans will take shape in the months and years ahead to achieve the vision within specific parts of the health and care sector.

The strategy sets out a number of general principles and commitments that will be of benefit to patients and users of care services, including people with MS. The strategy has already been placed in the Library and can be accessed online, via the following link: www.informationstrategy.dh.gov.uk.

Although there is no specific indicator for MS in the NHS Outcomes Framework, there are a number of indicators that are relevant to people living with this condition.

For example, the overarching indicator "health related quality of life for people with long-term conditions" and many of the patient experience measures will capture people with long-term conditions.

We have already published data around 30 indicators in the NHS Outcomes Framework, and will be publishing data for the remaining indicators as and when they become available. Data can be accessed in the NHS Information Centre's website via: www.indicators.ic. nhs.uk/webview.

We have made no assessment of the multiple sclerosis register. The register, which is funded by the MS Society, will provide an understanding of the numbers of people diagnosed with MS, and will also capture important information about the experiences of people living with MS, such as time to diagnosis, the symptoms they experience and the services they receive.

The Commissioning Outcomes Framework (COF), which is a framework of indicators of the quality of health services commissioned by clinical commissioning groups, will take a generic approach to long-term conditions. This recognises that many patients have multiple long-term conditions or co-morbidities, and by focusing on specific diseases it risks overlooking the holistic needs of these patients. Outcomes frameworks therefore focus on the more specific outcomes that matter to patients regardless of what long-term condition they have.

The National Institute for Health and Clinical Excellence (NICE) is developing proposals for comparative outcome measures for the Commissioning Outcomes Framework in partnership with the Health and Social Care Information Centre. Its independent advisory committee held meetings in public to consider the evidence base on 21 and 22 May, and we look forward to the publication of their recommendations on 1 August.

The NHS Commissioning Board will then make decisions on the shape of the framework for 2013-14.

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