Campaigning
Open Door - February 2008 page 2
Information provision
The MS Trust has been working with the Neurological Alliance, of which we are a member, and with the Ask About Medicines group to survey the information requirements of people with neurological conditions. Maybe you participated via the MS Trust website?
More than 1,000 people completed the survey and in excess of 10% of these were people with MS. The results show that:
- 48% of people did not understanding their initial diagnosis when they left the appointment
- Nearly 70% did not receive advice about seeking further information when they were first diagnosed
- Over 40% do not have the contact details of a specialist team who they can call to ask about their condition or treatment
- Only 40% had seen a specialist nurse in the last year
- Only 11% ranked information from GPs as very useful
The results are disappointing but not a surprise. We know that information provision can still be an issue in some parts of the UK and we also recognise that many people with MS are not seen within the system at all. The results do however provide us with information that we can use to campaign for improvements. We will be demanding that, as a minimum, people with neurological conditions should be able to expect:
- To be treated by health professionals who attach priority to providing information
- To leave the appointment at which their diagnosis is made with: adequate and appropriate information about their condition, contact details for a specialist team, contact details for a relevant patient support organisation, and a date for a follow up discussion
- To have a single, well-informed and accessible point of contact for ongoing information about their condition and treatment.
Darzi review of the NHS
To date Lord Darzi, a junior health minister and eminent surgeon, has presented his review for London and a preliminary review for the rest of England. Underlying his recommendations is a wish to see care delivered in different places and by different people. The fact that neurology gets no specific mention in his review is a major concern. Whilst we support the benefit of care nearer to home and the need for reallocation of responsibilities within the NHS, it is difficult to get too excited when neurology is starting from such a low baseline. We will be working hard to ensure that improved access to specialist neurological and neurorehabilitation services is not overlooked.
Other campaigns
Working with the Royal College of Physicians we have recently repeated our two yearly assessment of the implementation of the NICE MS Management Guidelines. The research covered all of England and Wales and will provide data for campaigning, and for sharing with those responsible for monitoring that the Guidelines are implemented. We will publicise the results in future editions of Open Door.
In conjunction with Partnerships for Health and with input from other parties we are working on an MS Pathway to help commissioners know what services should be purchased for the people with MS in their locality.
2008 looks to be a busy period. Now that the NHS has lived through its financial 'break even' period we hope to be able to move forward and consolidate good services in some areas, and guide others to put new improved services in place. Watch our website for information on these projects.
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