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A commissioning pathway for MS specialist services

Vicki Matthews, MS Specialist Nurse Advisor, MS Trust

Way Ahead 2009;13(4):6-7
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What does good look like?

The NHS next stage review[1] is clear in its call for high quality care and a good experience for users. Patient-Reported Outcome Measures (PROMs) will be the future evaluators of a good service. PROMs are concerned with the consequences of disease, treatments and outcomes that are considered important by the patient[2]. The FDA propose an umbrella term for PROMs: 'a measurement of any aspect of a patient's health status that comes directly from the patient'[3].

What does a good MS service look like? Identifying successful commissioning of MS specialist services needs those indicators that matter most to the person with MS and their families. MS specialists know what good looks like from the provider perspective; specialist commissioners know what good looks like from a purchaser perspective; but the most important voice is that of the person with MS.

The MS 18 week pathway

The MS Trust developed one of the first successful long-term conditions pathways using the Department of Health's 18 week pathway template. This web-based tool is a 'living' guide that informs commissioning services that have little knowledge about MS, on investigation, diagnosis and treatments. It demonstrates the complexity and unpredictability of MS and care needs. It is not a clinical algorithm (like map of medicine) but a navigation through the range of medical and non-medical options needed for successful management of MS.

When you look at the MS commissioning pathway[4] on your computer screen you will see a visual representation of the MS trajectory from pre-diagnosis onwards (it is important to view the explanatory user guide before using the pathway). The pathway can have additional layers, or fields, of information such as finance and IT. They are in the same format and can help commissioners form an accurate idea of things such as cost implications or workforce design of a service.

What next?

It was agreed that the next step was to develop a patient authored layer or field using the pathway template and the experience based design principle[5].

In May 2009 a focus group of people representing a range of MS experiences were invited to spend the day learning about the commissioning pathway and to discuss what mattered most at a number of identified milestones along the MS trajectory.

Milestones in the MS trajectory

  • Pre diagnosis
  • Diagnosis
  • After diagnosis
  • Managing MS specific symptoms and acute episodes
  • Managing change and transition
  • Toward the end of life

MS specialists know what good looks like from the provider perspective; specialist commissioners know what good looks like from a purchaser perspective; but the most important voice is that of the person with MS.

The group discussed what a 'good service' would look like at each of the above MS 'milestones'.

The group were also asked to think about what a 'good service' should deliver at each of the tiers of the pathway.

Tiers of the pathway

  • History and assessment
  • Diagnostics
  • Treatments

A good information service for people with MS at diagnosis should include:

  • honest discussion in plain English without jargon;
  • a plan of how to manage for the immediate future and the options that are available, rights and responsibilities and contact details;
  • a key contact available to talk over any concerns and who responds quickly;
  • a set opportunity to review responses and answer questions;
  • some protected time, integral to treatment plan, to talk through the emotional response to diagnosis;
  • practical information on driving, work, children and how other family members can manage diagnosis; and
  • information given by professionals that is relevant to reactions, situation, and needs.

This information was matched to the three stages of the pathway to begin the process of populating the patient layer of the commissioning pathway.

History and assessment

  • Truthful and realistic discussion with some key information about MS such as how many people get it, at what age etc.
  • Routine invitation to bring a partner to consultation and as part of standard practice.
  • Consider differing preferences between men and women, and relationship dynamics as to the presence of another person.
  • Someone who is clear, confident and authoritative gives diagnosis.
  • Time for discussion is given with no sense of being rushed.
  • A team is available for additional support and to repeat any information.
  • Information is succinct and relevant to immediate plan/needs.
  • The clinician demonstrates control of the immediate situation regardless of patient long-term preferences or usual locus of control.

Diagnostics

  • Give a clear and honest explanation of the reason for tests and what is being investigated.

Treatment

  • The opportunity for choice between outpatient or home visit by MS specialist within one week of diagnosis.
  • A jointly agreed plan of support/treatment options (not necessarily starting a treatment) with a clear direction and strategy of what will happen and what to do next.
  • Not given scripted information but tailored to the individual and their immediate concerns.
  • Focus on what is positive and help on practical issues and rights (even if they are not exercised).

What happens next?

The information collected will be distributed to a wider group of people with MS. It will be interesting to consider such issues as gender in determining preference and the request for plain English and honesty as key themes. The MS Trust will collate views from people with MS to form a consensus on what matters, and when, during the assessment, investigation and treatment/management of MS at any point along the MS trajectory.

Collaborative work is also underway with other health professionals to develop and complete the patient layer. This includes working alongside the 18-week clinical lead for Rheumatoid Arthritis who is also developing a patient layer.

The need for evidence based, effective patient information, a meaningful indicator of successful outcomes for people with MS, and services shaped by the patient experience is gathering pace. The song of the patient will soon echo loudly through the corridors of commissioning; we will do well to ensure we have written the music well in advance.

Visit the MS commissioning pathway

References

  1. Darzi A.
    High quality care for all: NHS Next Stage Review final report.
    London: DH; 2008.
  2. Riazi A.
    Patient reported outcome measures in multiple sclerosis.
    Int J MS 2006 13(3): 92-99.
  3. Food and Drug Administration.
    Guidance for industry patient reported outcome measures: use in medicinal product development to support labeling claims - draft guidance [cited 2009; August 16].
    Available from: URL: www.ispor.org/workpaper/FDA%20PRO%20Guidance.pdf
  4. Multiple Sclerosis Trust.
    MS commissioning pathway. [cited 2009; August 16].
    Available from: URL: www.mstrust.org.uk/professionals/information/pathway.jsp
  5. NHS Institute for Innovation and Improvement.
    The experience based design approach [cited 2009; August 16].
    Available from: URL: www.institute.nhs.uk/quality_and_value/introduction/experience_based_design.html

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