The overall objective of Valuing People was to enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a consistently high standard and, with additional support where necessary.

Sue Carmichael and Debra Moore (UK)

The authors are members of the Valuing People Support Team which helps to implement the changes recommended in Valuing People, the Government White Paper published in 2001.

Introduction

In this article we review the progress of Action for Health frameworks, which are part of the programme set up to improve health for people with learning disabilities in England after the publication of Valuing People.

Valuing People (Department of Health, 2001)  set a wide-ranging, across-government, across-service agenda for England with a vision reflecting the hopes and wishes of people with learning disabilities and their families.

Improving health and access to healthcare was a major part of the strategy, the overall objective being

To enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a consistently high standard and, with additional support where necessary.

This article briefly discusses one specific part of this work, Action for Health Frameworks, Health Action Planning & Health Facilitation.

In England, Learning Disability Partnership Boards (LDPB) were formed as an initial major action required following the publication of Valuing People (Department of Health 2001). There is one LDPB for each local authority: 150 in total.

Each Learning Disability Partnership Board was required to complete a series of seven Frameworks and strategies to guide the local implementation of Valuing People (Department of Health 2001). The Action for Health Framework was the last local framework due to be completed (as described in the section 7 guidance) with a deadline of summer 2003.

Background
There continues to be much research, discussion and publication regarding the health issues relating to people with learning disabilities (Kerr et al 1996, Robertson et al 2000, Institute of Applied Health and Social Policy 2004, National Patient Safety Agency 2004).

Prior to the publication of Valuing People (Department of Health 2001) the Department of Health had acknowledged the problems facing people with learning disabilities in achieving good health and published specific guidance such as Health of the Nation (Department of Health 1996), Signposts for Success (Department of Health 1998), and Once a Day (Department of Health 1999). These documents reflect an increased understanding and knowledge of the health issues that were highlighted by the field.

Following swiftly on the heels of Valuing People (Department of Health 2001) was further guidance on Health Action Planning and Health Facilitation (Department of Health 2002). These publications highlighted ways forward and reflected best practice (as yet untested) in the field.

A small group of reviewers have been working through the Action for Health Frameworks that have been submitted by Learning Disability Partnership Board's to give feedback, highlight good practice and identify shortfalls.

Progress on Action for Health frameworks
To date, 77 Action for Health Frameworks have been reviewed. Clearly, late delivery is an initial observation. However, one needs to be mindful that this is viewed in the context of a heavy delivery agenda (six other frameworks) whilst dealing with other national and local issues. Moreover, ensuring inclusiveness has meant that many areas have had to learn to work in participative ways with people with learning disabilities and their families.

The reviewers of the Action for Health Frameworks used a template designed by the main author of the Health Action Planning Guidance and amended by the review team to reflect the range of the frameworks. See 'How Good is Our 'Action for Health' Framework?'

There were some common themes that emerged from early reviews that continue to be key:

  • Action for Health Frameworks were often strongest in direction and planning around Health Action Planning and Health Facilitation.
  • Some found it difficult to describe how they would take forward the mainstream health agenda with Primary Care Trusts and by use of national standards such as those contained in the National Service Frameworks (NSF's).
  • A critical success factor for health action planning is a clear link with Person Centred Planning and other systems such as Transition Plans, Single Assessment Process (SAP) and Care Programme Approach (CPA). Unfortunately, many Health Frameworks were vague in describing how they would consider each of these to ensure an individual was not subject to a multiplicity of plans.
  • Many localities were able to identify the positive effects of projects and initiatives they had undertaken to support good health for people with learning disabilities. However, some were unable to sustain projects in the longer term or demonstrate their effect on health outcomes.
  • Whilst at least one Health Framework has honestly stated that their locality will be unable to meet the objective of Health Action Plans for everyone by Summer 2005, many have not been clear.
  • A common weakness with some of the early Frameworks was a lack of detail in how Health Action Planning would be rolled out to everyone in the area. However, more recent Frameworks appear clearer on this which may indicate shared learning and/or more time to reflect on the issues.
  • It has been positive to note how most frameworks have been clear in identifying the role of people with learning disabilities and family carers in the process and in particular in training opportunities.
  • Some areas have found it difficult to describe how and why they have prioritised which groups will be first to be offered Health Action Plans. Where there has been clarity is often because they have been able to obtain and use local population information and registers.
  • Links with public health and health promotion have been variable.
  • A number of Health Frameworks were unclear in regard to specific action around the needs of people from minority ethnic communities and people described as having a high support need.
  • There has clearly been a huge and positive effort in most areas to create accessible health information for people with learning disabilities and their families.
  • Some areas have had significant success with initiatives that have involved mainstream practitioners from primary and acute services working in partnership with people with learning disabilities and specialist practitioners.
  • A large number of Frameworks were vague about how they would ensure that people who are supported by Independent Sector Providers would be included in local plans.
  • More thinking needs to be done to make sure that other local frameworks that contain elements that can impact on good health are considered, e.g. housing, employment, etc.

To support the promotion of good health for people with learning disabilities, the Valuing People Support Team has instigated a series of actions and worked in partnership with other agencies, e.g. The Healthcare Commission.

  • Improvement, expansion and reform: ensuring that 'all means all' (Department of Health 2003) A publication that provides a brief analysis of how the Department of Health's Planning and Performance Framework relates to people with learning disabilities.
  • Supporting the leadership role of people who are 'championing' health in local areas and nationally.
  • Appointing two Expert Advisors in health to the Valuing People Support Team
  • Supporting the regions to sustain networks to promote, share good practice and address health issues.
  • Promoting Mencap Learning Disability 'Health' week
  • Including learning disabilities in the 'Better Metrics' project
  • Working with colleagues in the Healthcare Commission on a range of performance and governance issues relating to learning disabilities.
  • Linking to the National group of Strategic Health Authority Leads for Learning Disabilities
  • Providing events for professionals (including a range of health professionals) to think about their role in promoting person centred approaches
  • Publishing an 'ideas pack' to help people think about the role and function of specialist learning disability services, 'Out of the Box'
  • Working with colleagues in Mental Health to provide a toolkit to support people with learning disabilities and mental health needs, 'Green Light'
  • Producing a toolkit to support local areas to review the role and function of community learning disability teams

The Department of Health has also sponsored research in relation of Health Action Planning and Health Facilitation.

Conclusions:

  • It is helpful to see the local journey towards better healthcare as a series of milestones that can be mapped out over time within the Health Framework.
  • Getting the direction of travel towards mainstream services is critical whilst appreciating the need to review the role and function of specialist support.
  • Getting the balance right for individuals is crucial; good health should be seen to underpin, not overtake, the steps towards getting the life the individual wants.
  • Health Facilitation should be seen as a process that is inclusive and reflect the individual needs of the person and their families.
  • Local areas should monitor the outcomes from Health Action Plans to ensure that support is effective and services receptive to need.

References:

Valuing People - A Strategy for Learning Disabilities for the 21st Century (Department of Health, 2001)

Signposts for success in commissioning and providing health services for people with learning disabilities (Department of Health, 1998)

Once a day (Department of Health, 1999)

Action for health - Health Action Plans and Health Facilitation. Detailed good practice guidance on implementation for Learning Disability Partnership Boards (Department of Health, 2002)

Review of the role and function of Community Learning Disability Teams: review toolkit (Valuing People Support Team, 2002)

Improvement, expansion and reform: ensuring that 'all means all' (Department of Health, 2003)

Understanding the patient safety issues for people with learning disabilities (National Patient Safety Agency, 2004)

Kerr M.P., Richards D., Glover G. (1996) Primary care for people with learning disabilities - A group practice survey. Journal of Applied Research in Intellectual Disability. 9, 347-352.

Robertson J., Emerson E., Gregory N., Hatton C., Turner S., Kessissoglou S., Hallam A. (2000)
Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Research in Developmental Disabilities. 21, 469-486.

Greig R., (2003) The New Government Policy in England: A Change of Direction; Psychiatry Vol 2:8 Also link to the article on the website.

This article was specially written for our website in January 2005.