Mapping Vocational Rehabilitation Services for people with Long Term Neurological Conditions

Lead applicants: Prof. Diana Playford and Dr Kate Radford
Start date: January 2009 End Date: December 2010
Email: [email protected]

Background

Quality requirement 6 of the National Service Framework for long term neurological conditions (LTNC) highlights the need for services that enable people with LTNC to enter work, education or vocational training, remain in or return to their existing job or withdraw from work at an appropriate time. These services are known as vocational rehabilitation (VR) services.
Since the course a neurological disease follows differs according to the neurological condition. Some, for example stroke and traumatic brain injury, come on suddenly. Others, e.g. epilepsy may be intermittent and unpredictable. Some are progressive e.g. MS and Parkinson’s disease, while others, e.g. cerebral palsy are stable but with changing needs due to ageing. People with different conditions may require different types of vocational rehabilitation service at different times and the nature of service they need may vary.
The provision of vocational rehabilitation services for people with LTNC in the UK is currently patchy and services are poorly defined.  Some are provided by existing NHS rehabilitation services, some are linked to Job Centre Plus and others operate within the private or voluntary sector.  New guidelines recommend how vocational rehabilitation should be organized to meet the differing needs of people with LTNC and existing guidelines for people with acquired brain injuries (such as stroke and traumatic brain injury) call for partnership working between health and social services and statutory (Job Centre Plus) and voluntary services to bridge service gaps and ensure that people can access services when they need them.  However, it remains unclear to what extent existing services fit with these recommendations or meet the differing needs of people with LTNC. 

Aims

The purpose of this study is to identify and describe vocational rehabilitation services currently available to people with LTNC in England and consider the extent to which they fit published recommendations. 

What we will do and how we will do it

With the help of an expert panel (including people who provide and use VR services), we will develop a questionnaire to identify vocational rehabilitation services and explore current practice.  Then in a selection of sites identified in the survey, we will use in depth interviews to explore barriers and facilitators to VR services for people with LTNC and determine the extent to which these meet the needs of the population served.

The results of the research

At the end of the project we will provide:
1) a directory of specialist VR services for use by those who provide or need a VR service;
2) maps showing the location of specialist VR services in England;
3) a questionnaire that can be used again to monitor the development of new VR services and the implementation of the NSF;
4) an online forum for sharing information about services, which will include examples of good VR services.

 

Progress reports

Summer 2009 Update

A new researcher, Ali Gibson, has been recruited. The necessary ethics approvals have been obtained and the steering group and expert panel have met. Progress is now being made in getting the survey underway.

Winter 2009 Update

Stages 1 and 2 of the study, involving the development of the questionnaire and mapping specialist vocational rehabilitation services for people with LTNC, were deemed by NRES not to require ethical approval. Full ethical approval will be sought for the 3rd stage of the project involving the case study investigations.

Expert panel members have been identified – both service provider representatives and service user representatives - and held its first meeting on 5th May 2009. The group aims to a) provide an overview of the project, b) consider a definition of a specialist vocational rehabilitation service, c) consider a proposed typology for mapping, d) discuss the draft questionnaire and e) consider which networks and organisations to approach for the mapping exercise. Questionnaire design was also discussed at length at the meeting and suggestions for further development were made.

The initial steering group meeting was held on 10th June 2009 to a) provide a summary of the project’s progress, b) review the draft questionnaire, c) confirm our mailing/recruitment strategy, d) discuss further recruitment of service user representatives, e) discuss the definition of a specialist vocational rehabilitation service for people with LTNC and f) discuss typology for mapping.

The design and development of the questionnaire has now been completed and initial mailing commenced at the beginning of October.  An email with information about the study has been sent to all members of relevant College of Occupational Therapists Specialist Sections (COTSS-Work and COTSS-NP). We have invited them to take part in the study if their service provides any level of vocational rehabilitation for people with LTNC. To date, we have had 64 responses and 51 questionnaires have been sent out. (We are awaiting consent/postal addresses from 4 people, 6 responses were from services outside England and 3 responses were from people working in a service we’ve already sent questionnaires to). British Society of Rehabilitation Medecine (BSRM) members are also to be contacted shortly.

Summer 2010 update

We have completed the 1st tranche of mailing and commenced analysis and mapping from questionnaire responses. Analysis of the data from the questionnaires is underway, as is the mapping process. We are developing two sets of typology according to the i) type of service and ii) components of vocational rehabilitation offered.

Selection criteria have been agreed with the expert panel and the process of selecting four case study sites and obtaining R&D approval has begun.

The inclusion criteria for the 2nd tranche of mailing have been agreed and it is nearing completion.

Development of the interview schedule is also underway and nearing completion.

User involvement

We have convened 3 steering group meetings and 4 expert panel meetings.
Our researcher, who has personal experience of a LTNC, has been actively involved in all aspects of the study. She attends various meetings and will also be involved in the dissemination of the work both regionally and nationally.

The expert panel currently also includes 5 service user representatives with neurological conditions. Each of the 4 disease trajectories are represented now.

Early Findings

Preliminary findings from questionnaire data include;

  1. The majority of VR services for people with LTNCs are a component of a general rehabilitation service. There are few services focussing solely on VR and even fewer aimed solely at people with LTNCs.
  2. Staff delivering VR services for people with LTNC often lack specific training.
  3. The development of the VR component of a general rehabilitation service is often due to the vision of a single member of the staff team, or the demand of a patient group where their needs remain unmet.
  4. Several service providers believe that commissioners often lack the knowledge/understanding of the role of VR and its need for people with LTNC. This can lead to difficulties in securing funding for such services.
  5. It is the belief of some service providers that there are a limited number of professionals who have both the medical knowledge of LTNCs and the impact they have on employment skills and opportunities.
  6. VR for people with LTNCs is very time-consuming and individual to each client.
  7. There is a need for standards of competency or at least minimum expectations for VR services for people with LTNC.

Many medical professionals have advised that they are not aware of any VR services for people with LTNC in their area, even if they exist. This supports the requirement for this study so that such services can be mapped and a guide published for health care professionals and potential service users to refer to. 

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