Shared learning database

Hertfordshire Community NHS Trust
Published date:
August 2013

The development of a service in which the patient is an active participant in their health care which is coordinated and mediated to afford a bespoke health package that meets the individual needs of patients and their carers.

This example was originally submitted to demonstrate implementation of CG105. It has been reviewed by the NICE team and continues to align with the replacement guidance NG42.

Guidance the shared learning relates to:
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

We proposed a transformational model which was designed to test the benefits of a clinical specialist co-ordinator in terms of high value healthcare and the main objectives of the project have been developed in line with the Hertfordshire Community Trust paradigm of service provision:

  • excellent clinical outcomes
  • outstanding patient and families experience
  • improved patient safety
  • highly efficient and cost effective service

Reasons for implementing your project

The application for this project was developed and supported by clinicians in the Neurological and Specialist Palliative Care Services in HCT, the Voluntary sector, local Neurologists and GP's who felt that patients with rare, and often rapidly progressing neurological diseases, did not receive adequate appropriate clinical support post diagnosis, with reports of being left feeling isolated and experiencing high levels of psychological distress.

A pre-service questionnaire was circulated via third sector partners and returned to the Coordinator for analysis and evaluation. This informed the development of the service and its focus.

Patients reported a fragmented service and poor communication between their professional team. Analysis demonstrated duplication of professional services and a lack of information about their condition and where to go for advice/support.

How did you implement the project

Identification of the patient group (five main conditions of MND, HD, PSP, MSA, CBD) and introduction of a care pathway from the point of diagnosis to death with a single point of contact for patients/families and professionals.

The project was supported by a steering group of 10 members that included neurologists, GP, service managers/clinicians from specialist and core services and all relevant third sector partners. Monthly neuro-palliative multidisciplinary team meetings that included membership from health and social care professionals and third sector representation also, chaired by the coordinator. Establishment of in county specialist outpatient clinics and carers groups, working closely with the acute and third sector partners to provide a gold standard service.

The main barrier to this project has been continued financial support to sustain the coordinator role which was key to its success as the original award grant only supported 9 months of the project. External third sector funding was successfully obtained to extend the project time frame and provide more evidence to ensure continued support from the local commissioning consortia.

The success of the project now means that further development is required to manage increasing numbers of referrals just as effectively.

Key findings

We evaluated what had been achieved through a post service patient experience interviews and collation of monthly statistical data to identify the impact of the work being undertaken. The main results include:

  • Reduction of non elective admission and length of stay
  • Increase in numbers of patients who stated a preference, dying in their preferred place of death
  • Patients report enhanced quality of life
  • Formation of disease specific carers groups linked to the carers strategy across all organisations as a quality strategy
  • Development of dedicated disease specific community clinics in-county
  • Established partnership group to support the steering of the service to monitor outcomes, as well as developing networks
  • Improved knowledge and skills base of the workforce
  • Reduction of complaints due to correct service pathways and application of appropriate knowledge and skills
  • Development of a more strategic approach e.g. MDTs including all relevant services
    The service has reduced the medical management approach, replacing it with a patient centred, holistic model which patients have reported as being an excellent experience of care, with high levels of satisfaction. Patients report feeling valued and empowered to take control of their future.

The approximate cost saving of the project in the first phase was £152,000.

Key learning points

There needs to be a long standing commitment from a financial perspective which avoids the loss of focus for the coordinator, who has also had to manage ongoing funding negotiations.

Project management support from an executive board level from the outset would have reduced the risks to success and stress of the project lead.
Ideally the project would have benefited from a researcher who shadowed the Coordinator to identify professional behaviours and provide the resource of more in depth analysis of data.

For further reading please refer to: "Patients and carers experience of living with a complex neurological and palliative diagnosis" (2013), Draper, Day, Garood & Smith) Mortality: Promoting the interdisciplinary study of death and dying. Vol 18, Issue 3, 2013.

Contact details

Dr Ana Draper and Liz Garrood
Consultant Systemic Psychotherapist
Hertfordshire Community NHS Trust

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

The project was additionally funded by a contribution of £25,000 each year for 3 years (to be match funded by statutory services) following an application made by the Motor Neurone Disease Association to the John Ellerman Foundation.