HL Deb 09 June 2003 vol 649 cc9-11WA
Earl Howe

asked Her Majesty's Government:

Of the 9,000 patients who may be eligible to participate in the beta interferon risk-sharing scheme for multiple sclerosis:

  1. (a) how many were on waiting lists for treatment when the scheme started on 6 May 2002; and
  2. (b) how many are now receiving treatment; and [HL.3073]

To whom, figures for the number of patients currently:

  1. (a) on the waiting list for the beta interferon risk-sharing scheme for multiple sclerosis; and
  2. (b) receiving treatment on the beta interferon risk-sharing scheme for multiple sclerosis. are being reported by primary care trusts; and [HL 3074]

What action they are taking to encourage primary care trusts to implement the beta interferon risk-sharing scheme for multiple sclerosis; and [HL3075]

What specific activities the steering group set up to oversee the implementation of the beta interferon risk-sharing scheme for multiple sclerosis is undertaking, and how its work will be passed down to Primary Care Trust for implementation; and [HL3076]

Why there are no plans to publish a progress report on the implementation of the beta interferon risk-sharing scheme for multiple sclerosis, and how they will ensure that an update on progress is made available. [H L3077]

Baroness Andrews

We estimate there are around 5,000 patients now receiving treatment with a disease-modifying drug for their multiple sclerosis. About. 300 new patients each month are being initiated on treatment. We do not have information about numbers waiting to be assessed.

The project is administered by the scheme steering group which is composed of representatives from all participating companies, the MS Society and the MS Trust, the Association of British Neurologists, the Royal College of Nurses/Association of MS Nurses, and the four UK health departments. In broad terms, the steering group's role is to oversee implementation of the scheme and to advise the scheme co-ordinator and participants on any actions which could help to ensure the smooth and effective entry of patients into the scheme. For day-to-day purposes the scheme steering group has delegated its authority to a project monitoring group which works closely with the Sheffield School of Health and Related Research (ScHARR). ScHARR is co-ordinating the initiation of the project and the collection, capture and analysis of data relating to the scheme. ScHARR manages the consortium which is responsible for monitoring the health outcomes of patients entered into the scheme. To do so, they need to establish and maintain links with all the specialist centres which are assessing and prescribing treatment for MS patients. It is envisaged that the formal patient monitoring process for assessing cost effectiveness and pricing adjustments will continue for up to 10 years. Within this period there will be two yearly reviews of the reimbursement arrangements. It is intended that valid findings arising out of the data monitoring and analysis of the scheme will be published, if possible in peer-reviewed journals.

We do not hold precise details about the way in which primary care trusts (PCTs) are implementing the scheme but following earlier reports of slow progress we asked strategic health authorities (SHAs) to adopt a proactive role with their PCTs to meet their statutory responsibilities. SHAs and PCTs have previously been reminded of their responsibilities to implement the scheme in the chief executive's bulletin dated 17 July 2002.