My mother had multiple sclerosis throughout my life, so I am very well aware of the impact that it has on people who have it and on their families.
With more than 100,000 people across the UK diagnosed with MS, it is important that people with this condition have access to the best treatments available and are supported with the cost of living.
I fully appreciate the challenges that many people living with MS are facing with the rising cost of living at the moment. Depending on their specific circumstances, it is possible that people with MS will qualify for disability benefits. People in receipt of extra-cost disability benefits such as Personal Independence Payment (PIP) or Disability Living Allowance (DLA) should have received a one-off Disability Cost of Living Payment of £150 from 20 September 2022, to help with the extra costs disabled people are facing.
I welcome the Chancellor's announcement that a second Disability Cost of Living Payment of £150 will also be provided to 6 million people on qualifying disability benefits during summer 2023.The Government is also providing a £650 Cost of Living Payment to recipients of means-tested benefits, to support people with low incomes with the rising cost of living. A further payment of up to £900 will be provided in three lump sums from summer 2023.
Since 2015, £150.6 million has been spent on research into MS through the National Institute for Health Research and UK Research and Innovation. This funding has the potential to improve the quality of care and treatments available to support people living with MS.
Regarding Sativex, I know that it is licensed for certain uses in the UK, as it has recognised benefits for people living with MS. However, the guidance from NICE states that it is not a cost-effective treatment for the NHS to routinely offer. I know that NICE update their guidance regularly, and it will be for them to discuss with the manufacturers of Sativex to find a model of funding appropriate to the NHS.
I welcome the decision of NICE to recommend Ocrelizumab for treating relapsing-remitting multiple sclerosis, and in particular it is positive that Ocrelizumab has been recommended to treat primary progressive multiple sclerosis as well. A commercial deal reached between NHS England and the manufacturers of Ocrelizumab, Roche, improved the drug’s cost-effectiveness and paved the way for NICE to recommend its use for primary progressive MS.
People living with long term conditions such as multiple sclerosis may be eligible for the Personal Independence Payment (PIP). The PIP is designed to offer claimants the correct level of care for their needs, which focuses on an individual’s ability to carry out key everyday activities, and claims are reviewed so those living with long-term conditions are appropriately supported by the care and welfare system.
I have been following with interest the experiences of people who have been prescribed Fampridine, particularly those who took the drug during clinical trials, only to see it withdrawn when the trial ended.
NICE has recently announced that it would not be recommending Fampridine for use on the NHS. It was acknowledged that Fampridine is a clinically effective treatment for some people, but is not cost effective at the current list price. This recommendation does not affect people who have already started treatment with Fampridine in the NHS. However, I understand that local commissioners are still able to take their own funding decisions on the use of Fampridine in their areas, taking account of NICE guidance.
I appreciate that this will not have been the outcome many were hoping for.
Finally, I am aware fampridine is currently routinely available through the NHS in Wales and Scotland but not in England. I appreciate that this may feel unfair, but the availability of treatments in Scotland and Wales is a matter for the Scottish and Welsh Governments.
Decisions on the use of fampridine in Wales and Scotland are based on more recent reviews of the evidence by the All-Wales Medical Strategy Group and the Scottish Medicines Consortium respectively.