Website of the Department of Health

1. Thank you for inviting me - very pleased to be here.

2. The Department has traditionally enjoyed a good relationship with the Neurological Alliance, reflected in our close working relationship on the National Service Framework for Long Term Conditions and in the financial support we have given to enable the Alliance to pursue its valuable work.

3. A combination of funds from the Department and the Alliance's connections have given us a unique opportunity to facilitate user and carer involvement in the NSF.  I would like to take this opportunity to thank you for the work that has been done to establish these focus groups, and your willingness to work collaboratively with us as well as other organisations such as the Long-term Medical Conditions Alliance to secure this vital input.

4. When my predecessor Jacqui Smith spoke at this event last year she set out our aims and ambitions for the NSF.  I want to take this opportunity to update you on the huge progress that has been made over the past year with developing the NSF and some of the other projects and initiatives that are crucial to making the NSF a success.

Why have this NSF?

5. I know you have been as keen as I have to see this NSF take shape.  It will be essential for a number of reasons.

6. Neurological conditions account for around 17% of GP consultations, and 10% of A&E attendances are neuro-related.  It is essential that we improve the capability of frontline services to respond appropriately to the needs of people with neurological conditions.

7. In addition, for over a million people their neurological condition results in long-term disability.  So we also need to provide effective ongoing support to enable them to maximise their quality of life and level of social participation.

8. Currently services are not adequately meeting the needs of people with long-term conditions.  The Alliance's publication 'In Search of a Service' identified some of the key areas for change:

9. And the recent inspection of social care services for physically and sensory disabled people highlighted some more general issues that affect people with long-term conditions:

- Difficulty securing equipment and adaptations

- Lack of awareness of the needs of people with complex or multiple disabilities

- Need for holistic and person centred assessment and care planning

- And smoother transitions between services

10. These have been echoed in the comments we have received from the public and professional groups, and in the consultations that the Neurological Alliance and the LMCA have held with users and carers.  We need to meet these challenges.

11. There are also exciting developments in the treatment of neurological conditions that the NSF needs to pick up on such as the provision of beta-interferon for MS patients and exciting advances in surgery for people with Parkinson's disease.

12. But there are also less dramatic - yet equally important - approaches to supporting people with neurological conditions that the NSF has to promote such as the development of specialist nurses and GPs with a special interest; and extending the Expert Patient programme and the opportunity for self-referral.

What issues are the ERG looking at?

13. So we are clear about what the NSF needs to address.  But how is it shaping up?

14. Through my exchanges with the chairs of the External Reference Group and with officials I have picked up some early messages about what areas they are looking at.  However, I understand that they still very much represent work in progress and I, like you, am eager to see what their final advice looks like.

15. Some of these issues deal with initial contacts with services:

16. Of course, 'diagnosis is the beginning not the end', as we were reminded by one of the participants at the focus groups.  So another group of themes deals with the provision of ongoing care and support:

17. A third set of issues relate to appropriate living arrangements:

18. Finally there are a number of areas that could be considered to be cross-cutting themes that relate to the need to ensure consistency in the services that are available to people locally:

19. From this you can see that the ERG is tackling the issues that you have told us are important.  One of the major tasks now is to define how we can achieve these ambitious aims in a way that is joined up and puts the individual at the centre.   The benefits of accomplishing this are obvious:

20. In Buckinghamshire they have developed a Brain Injury Service Network.  I know of two men who both sustained head injuries in traffic accidents and received support through this network.  Both had experienced difficulty adjusting to family, work and social life following their injuries.  But following a comprehensive programme of physio, psychological, vocational and family therapy both were able to come to terms with the effects of their injuries.  And within two years both were able to find satisfying employment and to rebuild their relationships with their loved ones. 

21. The difference is that one was treated in an A&E department in Buckinghamshire and was referred straight onto the programme.  The other was treated elsewhere and spent seven years struggling to cope, without his needs being recognised, before he was lucky enough to be referred to the service.  This is the difference a joined-up strategy makes.

What will the NSF look like?

22. So this is the kind of change that we are aiming for across the country.  But what will the NSF say that will help to ensure that it results in real change?

23. For a start the NSF will present clearly articulated standards.  These will be short, specific statements describing what needs to change in order to achieve our overall aims for the NSF.

24. Each standard will be supported by the rationale for why change is necessary, as well as the evidence for how a particular action or intervention will result in improved outcomes for service users.  'Evidence' in this context does not necessarily mean fully-fledged randomised controlled trials, but some kind of formal evaluation.  It could be the results of audit before and after change, or patient satisfaction surveys for example.

25. In addition I will want to see evidence that the recommendations the ERG makes are practical and cost-effective and, crucially, that they reflect the changes that people have told us they want to see.

26. Where possible we will also provide evidence-based markers of good practice to demonstrate how change can be achieved. These will identify key interventions drawn from service models that have worked in practice - like the one I described earlier.  They will also be linked to guidance and appraisals produced by the National Institute for Clinical Excellence and the Social Care Institute for Excellence.

27. The ERG will also need to suggest national and local performance indicators and outcome measures that might be needed for monitoring and benchmarking progress in meeting the standards. Suggestions for monitoring, possible service models and audit tools might not feature in the standards themselves but might be provided later as tools to support implementation of the NSF.

28. In doing this the focus will be on neurological conditions but clearly improvements in the areas that I have mentioned will have benefits for people with a range of long-term conditions and disabilities.  Because the number of people with long-term conditions is so large, more effective and efficient services for these people will also have a positive impact on the ability of NHS and social services to meet the needs of the general population.

Implementation

29. I know that many of you have expressed concerns about how we will ensure that the recommendations the NSF makes are being implemented.  Neither you nor I want a beautifully crafted NSF that just sits on a shelf.

30. New-style NSFs will not set national targets or milestones.  Of course the NSF will relate to wider targets that the government has set - for instance around waiting times for inpatient and outpatient treatment.  And if the ERG feels there are compelling, evidenced-based reasons that access needs to be quicker to improve outcomes for neurological users, then it can make recommendations in these areas.

31. However implementation will be monitored.  The NSF will provide a benchmark for the Audit Commission, the Commission for Health Audit and Inspection and the Commission for Social Care Inspection to refer to when assessing the progress that services are making.  And we will be taking their advice so that the NSF is structured in a way that these organisations can use.

32. But we want the NSF to be a document that is equally relevant and understandable to both professionals and service users. Something that you can claim ownership of and use to drive up the quality of services in your own local areas.  So there will also be a crucial role for service users to play by feeding in their views through Patient and Public Involvement Forums. And by becoming involved in consultations and other activities around designing local services for people with neurological conditions. 

What else will support the NSF?

33. Another key requirement for the NSF, if it is to represent a useful tool for delivering improvements locally, will be the extent to which it draws links to other policies and initiatives that are relevant to people with long-term conditions.

34. There are a number of projects that the NSF will relate to.  Some of these are already in progress; others are just getting started.  But all will help to ensure that when it comes to implementing the NSF, services will already be moving in the right direction.

Improving Wheelchair Services

35. For example, we are taking action on a number of fronts to improve Wheelchair Services.  There are 640,000 wheelchair users in the UK, many of whom have neurological or other long-term conditions.  But currently services are extremely variable up and down the country.

36. Some of you may have heard me outline our ambitions for a new Wheelchair Collaborative when I spoke to the LMCA in September.  The Department and the Modernisation Agency are working in partnership on this project with wheelchair manufacturers and providers as well as with users and carers to improve wheelchair services.

37. In addition the NHS Purchasing and Supply Agency is working with the Posture and Mobility Group and the Wheelchair Managers' Forum to develop a template for services which will help overcome local inconsistencies.

Community Equipment Services

38. Community equipment also plays a vital role in helping disabled people maintain their health and independence, and preventing unnecessary hospital stays.  We are currently funding a project to integrate community equipment services across health and social care. 

39. By April next year we expect that the majority of health and social services' community equipment services will be integrated.  And we are aiming that 50% more people - almost 2 million in total - will be benefiting from community equipment services.  In addition, by December 2004 we are aiming for all stock equipment to be delivered within seven working days.  The current target is 21 days.

40. We have given substantial additional funding over the three years from 2001 to 2004 to help the NHS and councils to achieve these targets.  The Integrating Community Equipment Services (ICES) team - a national team of experts in community equipment services - is helping services focus on how they can improve.  And recent changes to the law have abolished the powers of councils to charge for equipment services.  This has not only improved equity for people living in places where they used to charge, but has helped break down barriers to integration of health and social care services.

New Assessment Tools

41. And we want to go further.  We know that for both wheelchairs and community equipment, the time it takes to arrange an assessment is a crucial concern for people who need those services.  The long-term solution will be to increase the numbers and variety of people qualified to make assessments.  But there are other things that we can do to make the process easier and more accessible.

42. We have begun piloting a new easy-to-use self-assessment software program in five areas across the country.  Each area will have the software available in a different place.  In Manchester, for example, kiosks can be found in Boots and ASDA. 

43. Answers to a series of questions produce a printed report of simple equipment or aids to daily living that may help people with everyday tasks.  It will give details of where they can be obtained.  And it will also advise on whether a professional assessment is needed.

44. So we are moving in the right direction.  Both the Wheelchair Collaborative and the Community Equipment Services initiative will underpin work on the NSF.

'Action On' Neurology

45. The Action On programme is another vital part of the government's modernisation agenda.  It is all about finding better ways of working to improve frontline services for patients, making them more convenient and more responsive.  Re-designing the NHS around its patients and focusing on their needs.

46. We have allocated £1.2m to the Modernisation Agency for an 'Action On' programme on neurology.  The project will involve around 6-8 pilot sites and will run for about 18 months.

47. The effect of the programme will be to produce advice and guidance that will support neurology services to achieve a number of goals:

48. Following the project a practical toolkit will be developed to enable neurology services to review the care that they are providing.  At the same time the programme will develop a learning network to give neurology services access to best practice in service organisation and delivery.

49. I am pleased to announce that 87 sites have applied to take part in this project. The successful sites will be announced later this month. I think you will agree that this reflects the huge eagerness within the field to improve neurology services.

National Electronic Library for Health

50. We are also promoting the spread of good practice more generally through the creation of the National Electronic Library for Health.

51. The NeLH draws together knowledge and information from across the NHS and makes it available at the point of care to support shared decision-making.  And it provides tools to help services implement policies and guidance such as this National Service Framework.

52. One way they are doing this is by developing zones on each of the published NSFs that include links to all the major NSF related publications and resources.

53. Another is through the development cores of common knowledge for different conditions.  These will be available as a reference for any professional who wants to boost their knowledge and understanding around a particular condition.

54. And in April next year work will begin on the creation of a specialist library on neurology.  We are very grateful for the support that the Neurological Alliance has provided in defining the content of this library.  And for your help facilitating the involvement of users and user representative organisations in its design.

Conclusion

55. This NSF is part of an important step-change in services for people with long-term conditions, particularly those with neurological conditions.  I want to see long-term structural change combined with early demonstration of our commitment to change.  In the shaping of the NSF, as in so many other areas, the Neurological Alliance has a key role to play.  I applaud you for the contribution you make to improving the lives of people with neurological conditions - by working with us and through your own activities.  And I hope this partnership will continue with equal success for many years to come.