MS Trust comments on Radio 5 Risk-sharing Scheme programme

22 February 2010

The Donal MacIntyre show on Radio 5 covered the Department of Health Risk-sharing Scheme last night.

We supplied a statement to the programme:

The Department of Health Risk-sharing Scheme has brought major benefits in specialist services for the 100,000 people with MS in the UK and has given approximately 14,000 people access to the licensed drugs they need. The benefits include specialist nurses and therapists, specialist MS centres, educational support for health professionals and more neurologists specialising in MS.

The MS Trust was asked by the Department of Health to act as the administrator for the Risk-sharing Scheme at its launch in 2002. We took on this role as the scheme was the only way that people in the UK were going to get access to licensed drug therapies that were already, even at that time, widely used in all other developed countries.

The scheme is challenging and there are lessons to be learned, but we would not wish to see it end without legal guarantees that people with MS would continue to receive the treatments and services that are their right.

Benefits delivered under the scheme:

An increase in the number of specialist centres - at the outset of the RSS this was circa 25 it is now 70 +
An increase in specialist nurses - there were 80 in 2000 now there are circa 230. A significant number of these were funded under the Fast Track scheme, a partnership between the MS Society and the four pharmaceutical companies each contributing 20% of the costs, under the auspices of the RSS. MS nurses have brought real benefit to everyone with MS not just those on drug therapy.
An increase in the number of neurologists specialising in MS.
An increase in the number of therapists specialising in MS
Less than 1,000 people were receiving disease modifying drugs (DMDs) at the announcement of the NICE assessment. By year 2000 still only 3% of people with MS were receiving DMDs. Now it is circa 14%, although this is still low in comparison with Europe 25% - 30% and the USA 50% or more.
Educational support for the specialist MS professionals has been provided as part of the RSS. This would not have been funded by the NHS to the same level.
Primary Care Trusts, Health Boards, Strategic Health Authorities have recognised that they need to budget for MS treatments and services.
Drug therapy is one element of MS management, the 70+ specialist centres with multi-disciplinary teams funded through the RSS provide support to everyone with MS.