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Getting to grips with the National Service Framework for Long-term Conditions: a ten-year strategy

  • Last modified date:
    8 October 2007

Around 250 people attended a national conference on the NSF for Long-term Conditions at the Hilton London Metropole on 19 July 2005.

Aims of the conference

  • Support organisations, professionals and mangers to deliver the NSF for Long-term Conditions;
  • Identify key first steps and make links to other policies and strategies;
  • Identify and address risks to delivery;
  • Give people the opportunity to come together and explore common issues in more detail.

Target audience

  • NHS (Tusts, PCTs and SHAs)
  • Local authority social services
  • Professional organisations
  • Voluntary sector
  • Independent sector
  • Private sector
  • Patients, service users and carers

Speakers

  • Liam Byrne MP, Parliamentary Under-secretary of State for Care Services
  • Steve and Ann Harris, Parents of young man with acquired brain injury
  • Kathryn Hudson, National Director for Social Care, Department of Health
  • Amanda Hutchinson, Long-term Conditions Lead, Healthcare Commission
  • Maureen Kelly, Chair of the Neurological Alliance and Manager of the Glaxo Neurological Centre, Liverpool
  • Bernadette Oxley, Commission for Social Care Inspection
  • Professor Ian Philp, National Director for Older People and Neurological Conditions, Department of Health
  • Professor Antony Sheehan, Director of Care Services, Department of Health

Structure of the day

Morning session

Presentations from:

  • National Directors leading delivery of the NSF - Professor Ian Philp and Kathryn Hudson
  • Steve and Ann Harris, a family who have experienced services first hand following an accident in which their son sustained a brain injury
  • Antony Sheehan, on national support for the LTC NSF
  • Maureen Kelly, on the role of the voluntary sector

Afternoon session

  • Workshops on a range of key issues which can help people deliver the NSF
  • Keynote address from Liam Byrne, Parliamentary Under-secretary of State for Care Services and the lead minister for the NSF
  • Presentations from the Healthcare Commission and Commission for Social Care Inspection.

Chair's welcome

Diana Whitworth, Chair of the NSF External Reference Group opened the day by setting out the vision of the NSF for Long-term Conditions which was to:

  • recognise the need to support people 'living' with long-term conditions;
  • address social exclusion and discrimination which was particularly important for people from minority communities;
  • promote key principles of dignity and respect, fair access to services, choice, and independent living.

Morning session - Plenary

Setting the scene -The Long-Term Conditions NSF

Professor Antony Sheehan, Director of Care Services, Department of Health

  • Department of Health is fully committed to supporting delivery of the NSF.
  • NSF aims to ensure better and more consistent treatment, care and support for people with long-term neurological conditions in all settings.
  • Partnership between professions, across sectors and with service users and carers is important and can be improved through better provision of information.
  • Services need to drive forward implementation in response to local need.
  • LTC NSF will be delivered in the context of key strategies and policies.

The contribution of the voluntary sector to developing high quality services

Maureen Kelly, Chair of the Neurological Alliance and Manager of the Glaxo Neurological Centre, Liverpool

Voluntary organisations can:

  • be innovative and work collaboratively with statutory services;
  • describe the patient experience, journey and needs well, including hard to reach groups;
  • be an important local resource for commissioners and providers of services.

Services that meet the need? A user perspective

Steve and Ann Harris, parents of Robin, a young man with acquired brain injury

  • Brain injury services are inconsistent with isolated areas of excellence
  • Bureaucracy, budget and administrative issues take priority over clinical needs
  • Areas for improvement
    - nursing units with facilities and staff able to provide appropriate ongoing care post intensive care unit and pre regional rehabilitation unit
    - more dedicated regional rehabilitation units for fast track rehabilitation
    - continuity and longer-term certainty on financial issues with advice and coordination on all available funding and benefits

Delivering the Long-Term Conditions NSF

Kathryn Hudson, National Director for Social Care, Department of Health

Professor Ian Philp, National Director for Older People and Neurological Conditions, Department of Health

  • Social care will make a difference for this group of people. Significant overlap between LTC NSF and Independence, well being and choice
  • Possibility of piloting services relevant to people with long term neurological conditions, including health and social care integration; cognitive, behavioural, psychological and physical needs; and impact on wider family
  • Important to listen to expertise and experience on front line
  • Need to look at whole person (all areas of life), whole system (family, voluntary sector, social care, health), for life
  • Alignment with other government priorities, e.g. self-care strategy, White Paper Your Health, Your Care, Your Say, diagnostics and workforce policy
  • Leadership from professional groups to take ownership of change agenda and drive forward progress

Afternoon session - workshops

Workshop A

Building interdisciplinary teams to deliver person-centred care - getting to grips with QR1 and relationship to Long-Term conditions model

Aim: To look at a local interdisciplinary team to deliver quality requirement 1, including making the right links to the Long-term Conditions strategy

Sheila Dilks, Nurse Adviser on Long-term Conditions, Department of Health

Shelagh Morris, Health Professions Officer, Department of Health

Helen Mcloughry, Head of Rehabilitation and Intermediate Care, Nottingham PCT and LTC NSF ERG Member

Questions

What are the challenges to effective multidisciplinary working to achieve the Public Service Agreement target?

What are the opportunities and benefits to delivering the long-term conditions agenda?

Feedback

  • Need for common terminology and definitions of disability and functions (World Health Organisation and International Classification of Disability and Functioning)
  • Promote a shared vision for services between commissioners, managers and professionals
  • Improve communication across professional groups and organisations
  • Develop capacity by modernising and prioritising services
  • Focus on people not patients
  • Policy needs to be joined up at national level
  • Workforce: need better leadership and understanding across professions
  • Funding: better planning and use of resources
  • Performance management consistent at local and national level
  • Culture change focusing on:
    - shared experience of education and training
    - more robust assessment processes
    - IT and compatibility of different systems

Workshop B

Implementing the NSF: What are the incentives?

Aim: Helping local health and social care economies identify opportunities for working together to implement the NSF

Amanda Forrest, Deputy Director, External Affairs, South Yorkshire SHA

Bev Hopcutt, Clinical Adviser LTC NSF team, Department of Health

Quick wins

  • Public Service Agreement target on reducing emergency bed days should include survey of neuro-specific data
  • Expansion of local single assessment process arrangements to include people with long-term neurological conditions
  • Map current provision of services to identify gaps and duplication and needs including socially excluded groups
  • Link to targets in social services' Development and Improvement Statement, e.g. number of people with care plans and reduction in numbers of people in institutional settings
  • Link to inequalities agenda and targets
  • Develop early implementation plan
  • Link to the 18 week wait target: does this include referral by any agency and self-referral to any service/sector to reflect life long needs
  • Link to Independence, well being and choice and future of adult social care
  • Use Modernisation Agency's 10 High Impact Changes to benchmark neuro services
  • Develop pooled budgets using existing legislation
  • Explore practice-based commissioning to expand capacity and capability to commission neuroscience services

Medium term actions

  • Develop workforce competences and skill mix to ensure appropriate use of specialist and generalist staff
  • Develop capacity in community provision and ensure that funding follows the person, e.g. if community services take workload from the acute sector then funding should also move to community services
  • Major review and reorganisation of services
  • Greater collaboration between secondary, primary health and social care
  • Promote use of integrated budgets, pooled resources and partnership and look at different funding opportunities
  • Put resources into more appropriate provision, e.g. invest to save, redirected continuing care monies invested in integrated teams
  • Pilot individualised budgets for people with long term neurological conditions to give them control and challenge traditional market provision
  • Use Local Area Agreements to promote local partnerships
  • Increase voluntary sector role in provision of informal support and advocacy, benefit advice, information provision and funding
  • Challenge service commissioners to shift focus from acute to community services

Workshop C

Implementing the NSF: How can we go about it

Aim: To share good practice and discuss ways of implementing the NSF

Dr Maggie Helliwell, GP, PCT PEC Chair and LTC NSF ERG Member

Barbara Kennedy, Chief Executive, Milton Keynes PCT and LTC NSF ERG Member

First steps

  • SHAs, PCTs and acute trusts to identify LTC NSF leads
  • Identify local implementation teams to plan and set up networks to bring people together and map current services
  • Local champions to facilitate joint working by bringing PCTs and social services authorities into geographical alignment
  • Identify numbers of service users (and carers) in each area using data from public health teams, Neurological Alliance, GPs, Quality Outcomes Framework and existing mapping work
  • Appoint more professionals, e.g. neurologists
  • Improve information on specialist services, e.g. specialist rehabilitation to help commissioners access specialist services through a single access point, rather than contacting different areas
  • Improve communications about the LTC NSF to promote ownership

Challenges

  • Funding: In the absence of specific targets and ringfenced money there is a need to highlight links between the NSF and national targets
  • Address knowledge gaps and find out who the key people are
  • Perverse incentives in the system: government policy aims to treat people in the community where possible, but funding goes into acute services
  • Incentives for NHS Foundation Trusts to provide services in the community
  • Improve neurological care in non-specialist settings through better education and training
  • Appoint key workers so that people do not fall through gaps in services
  • Increase workforce capacity without disadvantaging other groups, e.g. targets to establish community matron posts could undermine other specialist nurse provision
  • Look at the capacity, structures and IT to deliver the single assessment process

Gathering evidence

  • Listen to the full range of service user and carer needs, views and experiences in planning and developing services. Need to include vulnerable and excluded groups and communities, e.g. black and minority ethnic groups and the 'silent majority'
  • Develop systematic measures of service user experience, e.g. patient satisfaction surveys

Workshop D

Implementing the NSF: what are the levers?

Aim: To identify who can take the NSF forwards and what the mechanisms are we can use

Barbara Howe, Director of Specialist Commissioning, North East London and LTC NSF ERG Member

Rosie Schaedel, Director of Community and Children's Services, Tower Hamlets PCT

Key issues relevant to all Quality Requirements

  • Accurate local assessment of need, e.g. numbers of people affected, services required, and local access issues
  • Case management training for everyone to improve understanding of neurological conditions among generalist staff

Quality Requirements 1-3

Need to get acute care right because of the ongoing impact on outcomes.

Levers and opportunities

  • 18 week wait target from referral to treatment needs to cover all access issues, e.g. non-GP referrals and waiting times for specialist support such as neuropsychology
  • Learn from and align with stroke pathway and NSF for Older People
  • Extend single assessment process to people with neurological conditions
  • National Institute for Clinical Excellence (NICE) guidance and professional organisations' standards can be used to drive up quality of services
  • Investment in more critical care beds
  • Establish managed clinical networks
  • Services arranged in a 'hub and spoke model' can spread specialist expertise and improve early recognition of symptoms
  • Payment by results can improve diagnosis and initial treatment but needs support from care pathways and good links between secondary care and the community
  • Individuals, families and specialist voluntary organisations need to be involved in service development

Quality Requirements 4-8

Involve more organisations to increase the range of community services. Low volume, high cost services underline the importance of good local data and of risk sharing between PCTs. Joint funding, e.g. the use of pooled health and social care budgets can promote seamless services.

Levers and opportunities

  • Green paper on adult social care Independence, well-being and choice: Social services involvement in local implementation team is key to delivering NSF together with housing, education and transport
  • Social model should inform planning and commissioning of services
  • Improved community services can mean reduced bed days but block contracts do not support development of new community based services
  • Clarification of the links between the LTC strategy (NHS and social care model) and the LTC NSF, including the potential role of case managers and community matrons to support people with long term neurological conditions
  • Vocational rehabilitation: Improve occupational therapists' understanding of employment issues to bring into line with Department of Work and Pensions policy to support people with disabilities into work
  • Use voluntary organisations, e.g. MS Society joint projects with Remploy
  • PCTs to collaborate on review of commissioning of rehabilitation services, e.g. inappropriate time limits for rehabilitation support
  • Training in commissioning specialist services for Directors of Social Services

Quality Requirements 9-11

Levers and opportunities

  • Palliative care NICE guidance, gold standard framework, Liverpool care pathway
  • 2004 Carers Act
  • Medicines Management Framework
  • Links to OP NSF standard 4 - general hospital care
  • Staff

Workshop E

Getting the best from patient groups

Aim: How to capitalise on the expertise and keep the support of patient groups in implementing the NSF

Judith Kidd, Chief Executive, Neurological Alliance

David Pink, Chief Executive Long-term Medical Conditions Alliance and LTC NSF ERG Member

  • Patient representative groups have an important role in supporting implementation of the NSF. Evidence of good links and working relationships with the statutory sector includes: regular use of patient and service user forum to inform service planning; joint stakeholder events for statutory and voluntary sector; forum of voluntary and independent sector members to map services and needs. Secure funding arrangements with voluntary sector could ensure their continued input
  • Voluntary organisations can provide information to people, help them make links with resources that they may need, and provide long term assistance and support to guide a person through the process
  • Neurological Alliance can help people with rare conditions, communication problems and cognitive difficulties access a regional group or patient and public involvement forum, or partnership boards
  • Neurological Alliance Regional Alliances, local authorities and the NHS can help to identify useful voluntary sector contacts. Need to identify, discuss and plan how to involve the voluntary sector
  • Patient groups should not be 'hard to reach' and service providers should focus on people in a holistic way
  • Need to emphasise that LTC NSF is based on the social not medical model

Workshop F

Linking the Health and Social Care agenda to deliver better community based services for people with neurological conditions

Aim: To look at existing examples of joint working that can help implement the NSF

John Nawrockyi, Director of Social Services, London Borough of Greenwich

Viv Whittingham, Service Manager, Physical Disability, Sensory Loss and HIV Social Work Service, London Borough of Hammersmith and Fulham and Member of DH Neurology Advisory Panel

Presentation focussing on:

  • better community services
  • service integration at the point of delivery
  • the need for links to key strategies including Improving Life Chances of Disabled People and Independence, Wellbeing & Choice
  • more intelligent use of resources, extending choice and working in a more joined-up way, e.g. extending Direct Payments and introducing Indirect Payments; Using Section 31 freedoms to allow greater flexibility to use Direct Payments for health; In-Control pilots to give families control of their annual care budget
  • the need to look at service provision from a service user perspective
  • potential difficulties with choice and new ways of allocating resources to be addressed included: exemptions; purchasing local authority services; risks to commissioning; brokerage/support roles; and safety and protection issues

Feedback

Extending choice

  • Increasing personal choice means less certainty for service providers about demand for services. Similar to market forces that most other businesses have to deal with
  • Availability of a brokerage service raises protection issues, particularly for vulnerable groups. Need clarity on responsibility for this
  • Market needs time to prepare for individual investment and double funding to cover transition to new services
  • Need excess capacity to guarantee freedom of choice. Services are note currently able to provide this
  • Not everyone needs an individual budget. If statutory services can provide competitive, good quality services people may choose that service without needing to manage their own budget
  • Need to increase capacity so that services are not over subscribed or under funded.
  • Need to have the workforce, e.g. care workers to provide improved services

Integrating services

  • Frontline services should take the initiative to start working in an integrated way to address local need
  • Evidence from learning disability and HIV services shows joint-working can be effective. Case management and multi-disciplinary teams can prevent 'fallback' decisions when people lack necessary expertise and can agree what each partner will provide. Barriers that can prevent joint working include:
    - the voluntary sector not being treated as equal partners or properly reimbursed
    - staff not able to work across boundaries, e.g. social care occupational therapists not qualified to fulfil NHS roles
    - lack of mutual trust between services meaning people's needs are re-assessed by different people, e.g. for equipment provision and benefits entitlements
    - eligibility and means testing
    - jointly funded services with separate reporting arrangements
  • Liability and control of resources
  • Use of IT to map existing resources to assess local needs

Workshop G

Redesigning neurology services - Lessons from the Action on Neurology Programme

Aim: To share lessons from the Action on Neurology Programme

Sue Barrow, Director, Action on Neurology Programme

Dr Phillip Barnes, Consultant Neurologist and Clinical Director, King's College Hospital, London

What are the main constraints within your services that might hinder the implementation of the NSF within your area?

  • Restructure and re-configuration of PCTs
  • Lack of information and information flows around the system
  • Lack of shared vision and differences in culture and language between health and social care
  • Lack of clarity about the care pathway and impact on other services
  • Different funding streams for services
  • Lack of integration and poor communication between services and sectors, e.g. local authority, acute trust, community services and primary care trust
  • Access to information for staff, patients and service users about the availability of services locally
  • Training for professionals, including those with special interest
  • Poor transition and continuity of care arrangements for over 18s

Think of three examples where you could apply the lessons learned from Action On Neurology to support the development or redesign of neurology services within your area

  • Person-centred services
  • Focus on knowledge and skills not professional discipline or seniority
  • Promote shared vision around what is realistically achievable
  • Process map and redesign care pathways
  • Identify key stakeholders
  • Flexible professional roles and boundaries
  • Involve stakeholders and users through focus groups
  • Increase role of telemedicine
  • Improve baseline information to identify gaps and ways of addressing these

Consider how you would apply the lessons learned for each example you have given e.g. process redesign, new roles, technology, multidisciplinary team working and who the stakeholders are

  • Use service users and patients as 'teachers'
  • Improve services further down the pathway
  • Develop networks with community, voluntary and acute sector and patient representation
  • Telemedicine to have 'expert' assessment role and also to mange people living independently to avoid emergency admission
  • Improve rehabilitation to provide improved services in the community

How would you ensure that your services are accessible for all people with neurological conditions including minority groups?

  • Address minority ethnic community language barriers
  • Provide appropriate kite marked information for everyone
  • Regular review and re-referral with the possibility of self-referral

Afternoon session - Plenary

Liam Byrne, Parliamentary Under-secretary of State for Care Services

Key issues identified by delegates as challenges to delivery of the LTC NSF:

  • lack of targets: NHS is target focused so ministers to get it onto PCT agenda
  • postcode lottery: insufficient resources to support people living with long-term neurological conditions can mean difficulties arranging expert outreach; engaging specialist services; and shared care across boundaries
  • need to put on social services authorities' agenda by including in the Delivery and Improvement Statement and CSCI inspections. Risk of local authorities viewing this area as 'medical' which needs to be addressed with focused information
  • cultural change to ensure no fragmentation between funding sources
  • removal of barriers between professions
  • balance between health and social care by bringing values and holistic approach of social care to health services (especially assessment)
  • improve data about the numbers of people living with long-term neurological conditions
  • promote joint working and shared ownership at local level. Role for strong champions and grass-roots users and carers to influence change
  • need more detail about monitoring and engaging creatively with the voluntary sector and professional organisations

Monitoring delivery of the Long-Term Conditions NSF

Bernadette Oxley, Commission for Social Care Inspection

  • NSF for long-term conditions is the first major framework to underpin social care. NSF is about an integrated health and social care framework
  • CSCI has produced written guidance on the NSF to inform its inspections
  • Social care sector is large: 1.6m people use it every day and many have high dependency needs
  • Councils need to support carers in the caring role and as individuals in their own right
  • CSCI is looking at outcomes in performance assessment. They will work with the Healthcare Commission to change service reviews in response to new policies and strategies

Amanda Hutchinson of the Healthcare Commission

  • Healthcare Commission will avoid unnecessary reporting burden but will do detailed work with around 10% of organisations where appropriate. Annual healthcare check published in March to consult about the detail of assessments and reviews.
  • The next Annual Performance rating will take place in April 2006.
  • Healthcare Commission is currently developing indicators based on new national targets and standards. Improvement reviews identify progress made towards the developmental standards. The NSF could be assessed as part of these as it provides a model pathway for people with other long-term conditions.

Summary and closing remarks

Professor Ian Philp and Diana Whitworth

  • Encouraged by the number of stakeholders involved in developing the NSF and implementing it and enthusiasm of conference delegates and range of intelligent questions
  • Important:
    - to see the whole person as part of a whole system for life. Need to think about the importance of intimate relationships someone with a long-term condition may have, for instance a spouse or parent, and how the condition affects that relationship
    - to manage risks
    - role for all professionals in delivering the NSF
  • Department of Health will look into:
    - role of the independent sector
    - child and adult interface and links with children

NSF for Long-term Conditions team

September 2005

Additional links

Related Links

Long-term conditions information strategy

This aims to ensure that implementation of the quality requirements in the National Service Framework (NSF) for Long-Term Conditions is facilitated by the availability of the appropriate information for patients, families and carers, the general public and care professionals.

Additional links

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