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Policy and MS: update for Health Professionals - January 2018


Welcome to the MS Trust policy blog!

This post is intended for Health and Social Care Professionals working with people with MS. We hope this will provide you with policy information and links relevant to your work. 

This post contains information in 3 sections:

  • MS-specific updates
  • NHS England updates
  • Recent Government announcements relevant to MS

MS-specific policy updates

NICE MTA:  recommendations on beta interferons and glatiramer acetate

Last month we heard that NICE would be recommending Extavia, but rejecting five other, widely used, injectable disease modifying drugs (Copaxone, Avonex, Betaferon, Plegridy and Rebif). You can read the MS Trust’s initial response to this.

The MS Trust is extremely concerned by this announcement, and we have submitted a formal response to NICE. We have surveyed Health Professionals and people with MS to collect evidence to contribute to this. We received over 500 responses from people with MS – who were largely shocked and dismayed by the announcement – and over 120 responses from Health Professionals in MS, who gave us helpful insight into the use of these DMDs, management of patients on them, and views on the consequences of the decision.

Thank you to everyone who completed the survey – your response has helped us write a robust and well-evidenced response to NICE, in which we made it clear that we strongly believe that all current treatments should remain available as treatment options for all eligible patients. We think that the NICE recommendation was made without reference to clinical practice or experience and that it ignores the significant differences between each of the treatments. We are particularly disappointed that the recommendation does not acknowledge individuality and patient choice, impact on specialist MS services, or the costs of this.

We have made these points clearly and firmly in our response to NICE.

NICE STA: ocrelizumab for treating primary progressive MS

The European Commission has granted marketing authorization for ocrelizumab (Ocrevus) for the treatment of both active relapsing MS and early active primary progressive multiple sclerosis. This follows a recommendation from the European Medicines Agency in November that a licence should be granted.

Find out more

MS algorithm

NHS England is developing an algorithm for the use of DMDs to treat MS. The development of the algorithm has been led by Dr Alasdair Coles, Chair of the ABN MS Advisory Group, with input from a wider group including the MS Trust, MS Society, UKMSSNA and specialist pharmacists in neurology. The purpose of the algorithm is to: ‘provide a framework to aid decision-making for multiple sclerosis specialists and patients, to help reduce excessive variations in practice, and ensure safe and effective prescribing.’

The development of a clearer prescribing pathway is welcome, and it is hoped that it will support appropriate and equitable prescribing of DMDs. We hope that a clearer prescribing pathway will support appropriate and equitable prescribing of DMDs. We understand that further consultation will take place over the next few months and that the algorithm will not be used to create barriers to treatment for people with MS. 

Neurology Service Specification

The current NHS England Neurology service specification is due for review this year. The MS Trust is a member of the Neurological Alliance, which will have input into the service specification. (Here is the current service specification.)

What does this mean for people with MS?

We hope that the review of the service specification will help to improve the quality of neurology services and clarify existing issues regarding the local and specialised commissioning of services. As soon as we have any further information on the service specification, we will let you know. 

NHS England policy updates

There have been a great deal of NHS England initiatives over the past couple of years, focusing on organisational structures, working with public sector partners, data improvement and efficiency. Here are a few links on those most relevant to MS. 

NHS Sustainability and Transformation Partnerships (STPs)

There are 44 STP areas covering all of England, where local NHS organisations and councils have drawn up proposals to improve health and care in the areas they serve. The King’s Fund has a good explanation of STPs: ‘Sustainability and transformation plans are a means of NHS organisations coming together with local authorities and other partners to agree the future direction of health and care services in 44 areas of England.’

STP can also stand for ‘sustainability and transformation plan’, plans drawn up in each of the 44 areas setting out practical ways to improve NHS services and population health.

More information about STPs can be found here and here.  

What does this mean for people with MS?

It may be helpful to look at different STPs to understand more about health priorities in different areas. You can STPs are unlikely to mention MS specifically, but may have information about neurological services in your area. All STPs are different, and many do not prioritise neurology or long term conditions. Ideally, we would like to see all STPs prioritise long-term conditions and neurological services to improve the lives of people with MS.

Find your area's STP.

Some STPs which have prioritised neurology are:

NHS RightCare

NHS RightCare is a programme designed to use local data to improve outcomes for patients. The programme seeks to iron out local and regional inconsistencies in NHS services. The programme has three components: intelligence, innovation and implementation. Under ‘intelligence’ each CCG has produced data packs on long term conditions

What does this mean for people with MS?

The data packs provide information on neurological services in different areas and how this compares with similar populations. The packs are designed to be used by commissioners to identify opportunities to improve healthcare in each CCG. The pack should contain a matrix (table) on page 9 which shows how your CCG compares with others for neurological conditions.

A RightCare project with the aim of improving care pathways for people with MS, Parkinson’s and Motor Neurone Disease is currently being considered. We will let you know when we hear any outcomes of this project. 

NHS Vanguards

The NHS vanguards are programmes of work taking place in 50 areas as examples of best practice in care provision. 

There are 5 vanguard types:

The Walton Centre in Liverpool is the neurological vanguard for people with long term neurology conditions – people who have MS, epilepsy, Parkinson’s disease and other enduring conditions.

What does this mean for people with MS?

The vanguards are working to provide models of best practice to improve services for people with MS.

Recent Government announcements

Government Action Plan for Informal Carers

The Department of Health announced in November that a cross-government Action Plan for unpaid carers would be developed in 2018. This seems to have taken the place of the proposed carers’ strategy. The Carers Trust and Carers UK both published press releases: here and here.

What does this mean for people with MS?

It will be important for those who care for people with MS to have input into this Action Plan. The government has not yet said how or when it expects to consult on the Action Plan, but we will let you know when we hear of any further updates.

Social Care Green Paper

The government announced in November that it will publish a green paper on care and support for older people by summer 2018. A public consultation will be held when the paper is published. The government will also undertake a parallel programme of work for working age adults.

What does this mean for people with MS?

As many people with MS are of working age it will be important for us to keep up to date on this work and provide input where possible. We will let you know when we hear of any further updates.

Improving Lives: the future of work, health and disability

The DWP has published its strategy on the future of work, health and disability. This sets out plans to transform employment prospects for disabled people and those with long term health conditions over the next 10 years. It includes a commitment to see one million more disabled people in work over the next 10 years.

What does this mean for people with MS?

It is essential that people with disabilities, including people with MS, are supported in the workplace. However, it is also important to realise that for some disabled people, working is not an option due to the nature of their condition. It will be vital for people with MS to provide feedback to the government on the different proposals which will come out of this strategy. We will let you know when we hear of any further updates. 

This is our first policy update blog for Health and Social Care Professionals in MS - what do you think? What policy topics would you like to see covered? Let us know

Kirsty McKenzie, Policy and Insight Officer, MS Trust 

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