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Policy and campaigning update - April 2008

Way Ahead 2008;12(2):2-3
  1. New policy direction in Scotland
  2. Our NHS, our Future: the Darzi review of the NHS in England
  3. Health Select Committee review of NICE
  4. Wales: more telemedicine support for self-management
  5. Taking Control: the information needs of people with neurological conditions
  6. Northern Ireland: NICE guidelines on Tysabri endorsed

New policy direction in Scotland

In December, the Scottish Government published a major policy document on health. Better health, better care: action plan builds on previous work and a consultation that was held last August. No specific plans for neurology or MS are included, although it promotes better development of Managed Clinical Networks.

Priorities are moving care into the community, health promotion, education and public health. It also looks at a range of targets for service delivery and service provision, such as:

  • publication of delivery plans to improve palliative care by March 2008
  • investment of £9 million over next three years to support Carer Information Strategies
  • promotion of self-management throughout every Community Health Partnership by the end of 2008
  • implementation of the 18 week pathway from referral to treatment by March 2011; as a first step, no-one will wait more than 6 weeks for key diagnostic tests by March 2009

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Our NHS, our Future: the Darzi review of the NHS in England

The Darzi review, which will affect the shape of the NHS in England is due to report in June.

There is currently very little detail about what form this review will take. However, Lord Darzi has asked local groups to come up with clinical pathways that will suit the individual needs of their SHA areas. While this should account for differences in local healthcare provision and geography, it risks considerable variation between conditions and between areas.

The national review may resemble the plans for the reconfiguring of services within London SHA. These are outlined in the document 'Healthcare for London' that Lord Darzi originally drew up. Emphasis is placed on providing care in the community where possible, though people needing specialist services need to be prepared to travel. The MS Trust has responded to the consultation with a detailed model outlining our vision of the ideal service for MS.

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Health Select Committee review of NICE

The Health Select Committee's Report on the National Institute for Health and Clinical Excellence was published in January 2008. The committee considers NICE to be doing a reasonable job in difficult circumstances, but they did raise areas for further consideration:

  • NICE should take account not only of the impact a treatment may have on an individual, but the greater impact of helping that individual on carers and society as a whole. Interestingly, NICE considered this a reasonable view but outside the terms of reference drawn up on its establishment
  • NICE should look at recommending disinvestment from established and old treatments that may not work
  • NICE should assess all new drugs as they come onto the market, ie at licensing stage, and conduct a full assessment of the treatment at a later stage
  • risk-sharing schemes: the Health Select Committee expressed the view that the money might be better spent on publicly funded randomised controlled trials

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Wales: more telemedicine support for self-management

A new policy document published by the Welsh Assembly, Delivering emergency care services: a strategy, specifically includes people with long-term chronic conditions as a focus for better self-management strategies. This includes linking with the Expert Patient Programme, to ensure individuals are certain about which service to contact with a specific problem; allowing greater access to telemedicine for some chronic conditions and enabling better monitoring of people living in remote areas.

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Taking Control: the information needs of people with neurological conditions

Neurological conditions are often debilitating, frequently permanent, often progressive and always life changing. In many cases the treatments on offer are limited. Having access to timely, high-quality information allows people to navigate their way through complex, fluctuating conditions and inadequate services. Information empowers people to make informed choices and reduces fear and isolation.

A joint campaign by the Neurological Alliance (of which the MS Trust is a member), Ask about Medicines, and the Association of the British Pharmaceutical Industry set out to assess the information needs of people with neurological conditions.

1000 people with neurological conditions took part in an online survey hosted by members of the Neurological Alliance; in excess of 10% were people living with MS.

The results revealed that:

  • 82% of people living with neurological conditions in the UK do not have as much information as they want about their condition
  • 42% do not have the name and telephone number of a specialist team whom they could contact
  • 40% of people had obtained "very useful" information from patient groups and 27% from other patients, highlighting the need for people to be given contact details of patient organisations
  • though a fantastic source of information, less than 40% of people had seen a specialist nurse in the last year

The clearest message to emerge out of the survey results is that, despite health policy documents such as the NICE MS guidelines and the National Service Framework for Long-term conditions, people with neurological conditions are still not receiving adequate information about their condition and appropriate treatments.

To address the issue, a summit with policy makers, health professionals, commissioners and managers will convene to develop a plan for the provision of services that would allow people living with a neurological condition:

  • to be treated by health professionals who attach priority to giving information to patients
  • to leave the appointment at which their diagnosis is suggested or made with a minimum information package including:
    • adequate information about their condition and their treatment in a format which suits them;
    • a copy of the Ask about medicines guide Finding and Using Information about Health and Medicines
    • a copy of the Neurological Alliances Getting the Best from Neurological Services
    • contact details for a specialist team
    • contact details for a relevant patient support group
    • a date for a follow-up appointment at which there will be an opportunity to discuss the condition, treatment and to ask questions
  • to have a single well informed and accessible point of contact for on going information about their condition and treatment

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Northern Ireland: NICE guidelines on Tysabri endorsed

Health Minister Michael McGimpsey recently announced that Tysabri will be available to MS patients in Northern Ireland from April onwards. During a visit to the MS Society headquarters, Mr McGimpsey announced that the department had endorsed the NICE guidelines on the use of Tysabri and explained that health and social service boards and trusts are preparing for the managed introduction of the treatment. Mr McGimpsy described the current waiting times for such drugs as "unacceptable" and pointed to the £2m that has been invested over the last two years to ensure that by the end of March 2008 patients eligible for disease modifying therapy should not wait more than 13 weeks for their treatment to commence.

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