Shared learning database

Sussex Partnership NHS Foundation Trust
Published date:
October 2008

A multi-disciplinary working group was set up to look at how the NICE guidance for dementia should be applied to adults with a learning disability. This led to the development of a coherent pathway which clinicians can refer to in order to help them chart the steps from pre-diagnosis to end of life care.

 This example was originally submitted to demonstrate implemention of NICE guideline CG42. This guideline has now been updated and replaced by NG97. The practice outlined in this example has been reviewed and is consistent with the updated NICE guidance. The updated guidance should be referred to if replicating practice described in this example.

Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

The aim of the group was to set clear guidelines around how individuals with a suspected diagnosis of dementia are managed from the point of referral into the community learning disability service and to ensure their care is well managed and consistent from team to team. To ensure a consistency of response from the point to referral into the team when a diagnosis is suspected and to ensure that individual professionals' response is evidence based.

  1. To design a clear pathway that we could share with other colleagues and agencies from our Social care partners and colleagues working with older adults within the mental health trust which aids clinical planning and case management.
  2. To implement the care pathway for all adults with learning disabilities and an additional diagnosis of dementia who are referred to our service. To set up a register of individuals with this diagnosis.
  3. As a tool to up skill all members of the team and to help ensure that any dementia training the service provides is in keeping with the pathway and the needs of individuals and the services supporting them.

Reasons for implementing your project

The group initially started from a disparate group of health professionals who had begun to look at the NICE guidance on dementia in terms of what it meant to an individual suspected of having the condition and had an additional learning disability. The group Community learning disability team consists of occupational therapists, clinical psychologists, psychiatrist, nurses and social worker.

It became clear that in order to provide a co-ordinated response that individual professionals needed to work together to achieve this. Regular monthly meetings were set up which systematically worked through the guidance and interpretation of this in the context of our service users and the referrals received by the team. This involved several stages and led to each professional researching the evidence of best practice from the assessments we might to use to assist with diagnosis, to the role we might offer at the various stages of the condition.

The group identified inconsistency in response and the care received by different people from different individual professionals and teams alike. Time was also wasted on clinicians duplicating work. The group identified the need to target training (for paid carers and families) more strategically, that is, all agencies involved to develop a shared programme of training aimed at maintaining health and well-being of the individual. In addition, the multidisciplinary team received joint training on implementation of the pathway based on the NICE guidance.

How did you implement the project

1) A multi-disciplinary working group was set up to look at how the NICE guidance for dementia should be applied to adults with a learning disability. This led to the development of a coherent pathway which clinicians can refer to in order to help them chart the steps from pre-diagnosis to end of life care. The pathway is in place and gives a clear indication of the care of an individual from diagnosis to end of life and how care might be best managed in the context of individual need and the evidence base. There is a clear statement of the roles of different clinicians and what they might be able to contribute to someones care.

2) The pathway illustrates the importance of multi-agency co-operation and planning throughout the stages of the condition. It outlines the roles of the individual professionals within a team and the part they may play in supporting an individual. It also outlines the key role of case-coordination and clinical planning at different stages of the condition. The dementia pathway also links in to the service training strategy, in terms of the type of training offered by the team at different stages of the condition, ranging from raising awareness of the condition to support staff and families caring for someone at the initial stages of the condition to training designed around a specific individual. Training is provided to carers and family members from the multidisciplinary team and regular consultation and individualised training to services supporting someone with learning disability and dementia. It can be a reference guide for newly qualified clinicians with little previous experience of caring for someone with learning disabilities and dementia. Training on the use of the pathway for all staff in the community learning disability team has been provided. This is also part of the team induction pack.

3) Work in developing the register and formalising an audit programme supporting implementation.

Key findings

At present audit and monitoring is informally completed within the team. Also developing tools to evaluate effective outcome measures from other agencies. Outcomes which focus on recovery principles at developing stages of the condition rather than curative measures.

Key learning points

1) To develop as a pilot project in one locality and rollout across the rest of the Trust in the future. As the organisation is spread over a wide geographic area, has a large population and is made up of three localities, good practice is often isolated to one area.

2) At the outset of a project like this it is really important to get the right people in the room in terms of professional background and ability to take projects and work forward.

3) Learn that to be effectively supported through care people need representatives from multiple agencies and professions. We need to know and share with each other what we do and what we can offer.

4) Have clear timetables to report back on.

Contact details

Wendy Harlow
NICE & SCIE Implementation Facilitator
Sussex Partnership NHS Foundation Trust

Tertiary care
Is the example industry-sponsored in any way?