Independence and well-being in sight - Executive summary

An executive summary of “Independence and well-being in sight – Developing the vision: a consultation paper on the future of rehabilitation services for visually impaired adults in Northern Ireland”

Prepared by Guide Dogs on behalf of:

The Northern IrelandRehabilitation Steering Group

Alternative formats

This document can be obtained in large print, Braille, electronic format or on audio tape by:

Calling 0800 028 4348 and leaving your name and full postal address.

Telephoning Alison Bennett on 028 90 471453.

Emailing .

It can also be downloaded at

The more detailed “Full” consultation document can also be obtained in the same way.

Introduction

Some visually impaired people need access to a full range of specialist “visual impairment” services. Others do not. This document considers not only the function and role of specialist visual impairment services in meeting the needs of people with sight problems, but also of the wider health and social care sector. Non-specialist services are sometimes poor at identifying needs resulting from sight loss and addressing them. This consultation is therefore aimed as much at the wider health and social care community as it is at those providing discrete visual impairment services. The debate that this consultation hopes to stimulate is about who should do what.

This document contains an executive summary of the full consultation paper “Independence and well-being in sight – Developing the vision: a consultation paper on the future of rehabilitation services for visually impaired adults in Northern Ireland”. A response form to the consultation is also provided.

This consultation focuses on visually impaired adults. It is not solely for those who use or provide specialist visual impairment services. We therefore encourage the participation of as many organisations and individuals as possible.

We are especially keen to hear from users of visual impairment rehabilitation services and so encourage Health & Social Service Trusts and voluntary organisations to share this consultation with groups of blind and partially sighted people in their area. The consultation ends on 30 April 2007.

What is the Northern Ireland Rehabilitation Steering Group?

The Northern Ireland Rehabilitation Steering Group (NI Steering Group) was established by Guide Dogs, RNIB, and the Blind Centre for Northern Ireland to inform and take forward the work of the Rehabilitation Project Group, highlighting issues specific to Northern Ireland that need to be considered within any new proposals for the future delivery of rehabilitation services.

What is the Rehabilitation Project Group?

In 2005 the Rehabilitation Project Group (RPG) was established jointly by Guide Dogs, the Royal National Institute of the Blind (RNIB), Action for Blind People and the National Association of Local Societies of Visually Impaired People (NALSVI) to work with other statutory and voluntary agencies in the visual impairment sector to “enable radical improvement for blind and partially sighted people through the provision of better rehabilitation services.”

Lists of the member organisations of the main RPG and the Northern Ireland Steering Group are reproduced in Appendix 2.

Why were the RPG and NI Steering Group established?

Reports over recent years from around the UK have been critical of the quality of support and services available to blind and partially sighted people reporting amongst other things:

  • an apparent lack of adequate resources;
  • inadequate provision of mobility and other rehabilitation services;
  • insufficient or meaningless service user involvement in service planning and delivery (although good examples do exist);
  • lack of information;
  • lengthy waiting times for assessment and/or service delivery;
  • a shortfall in qualified Rehabilitation Workers (RWs).

Despite some tangible improvements in some areas there remain unacceptably wide variations in the quality of provision.

What has the NI Steering Group been doing?

The NI Steering Group has analysed existing and new research to understand better unmet need and the state of play of services. It has looked at the relevance for blind and partially sighted people of recent and impending changes in health and social care. It has also formulated some ideas about how things could or should be done differently. The issues and ideas summarised within sections 1 to 4 of this document are outlined in greater detail in the full consultation paper.

A note on terminology

This document uses a number of key terms which are explained in Appendix 1 at the end of the document.

How do people respond?

A response form at the end of this document contains a number of consultation questions on which we are seeking your views. Details of how to respond are given on the form.

Section 1 - Policy context

Health and social care services in Northern Ireland are changing. This section briefly highlights some key demographic and policy drivers which must be considered in reviewing rehabilitation provision.

Government Policy Papers

The Department of Health Social Services & Public Safety (DHSS&PS) document, “Caring for People Beyond Tomorrow” (2005) clearly highlights that “demographic and lifestyle trends will have a profound impact on the future demand for primary care services.

It is likely that by the year 2025 Northern Ireland will have a population which is:

  • larger - 1.8m by 2026 compared to just under 1.7m today potentially creating more demand generally;
  • older - around 350,000 people over the age of 65 by 2023 compared to 266,000 in 2002 and therefore likely to present additional challenges in respect of both health and social needs;
  • living longer, with potentially greater levels of incidence of age related conditions including sight loss; and
  • better educated and informed, with greater expectations of the type of services they wish to receive, effectively seeking a person-centred service operating to the highest standards.

The DHSS&PS has identified 4 high-level goals to meet the future demands of services:

  • to make primary care services more responsive and accessible and encompass a wider range of services in the community.
  • to develop more effective partnership working across organisational and professional boundaries to provide more effective and integrated team working.
  • to facilitate more informed, proactive engagement and involvement of people in local communities and practitioners in the use, planning and delivery of services.
  • to put in place a care infrastructure fit-for-purpose which provides integrated modern services.

The DHSS&PS remain committed to the development of Direct Payments giving more people resources to arrange and commission their own care.

Changing workforce

Rehabilitation Workers (RWs) working with blind and partially sighted people are generally employed in “social care” rather than in “health”. Senior commentators have been predicting the likely future shape of the social care workforce with, amongst other things:

  • Greater emphasis on functions and competencies rather than specific professional roles
  • Social care staff working in a range of settings including health and outside the traditional limits of their roles

In order to achieve their 4 high-level goals the DHSS&PS have clearly indicated the need to develop effective collaborative working, and there will be a need for “integrated workforce plans which cross professional, organisational and sectoral boundaries. These plans will provide for changing roles and competencies across the health and social services over the coming years, including HPSS, the private sector, the independent sector and the community and voluntary sector.

An outcomes approach

Research conducted by Guide Dogs and described in more detail in the full consultation document indicates that an “outcomes-based” assessment would be a more effective approach to measuring the effectiveness of services. An outcomes-based assessment for blind and partially sighted people might consider the following areas of need:

Managing health

Emotional well-being

Transport

Work

Leisure and spiritual pursuits

Education

Information

Communication

Outdoor mobility

Enjoyment and safety of the home.

It is acknowledged that not all of the services required to meet these objectives may be funded by the public sector.

Section 2 - The case for change

While some improvements are evident, poor co-ordination between eye clinics and rehabilitation services, inadequacies in the assessments of people with recent sight loss and failure to address the emotional impact of visual impairment, remain significant problems. Guide Dogs’ research has confirmed this. A more detailed research summary appears in the full consultation document but key findings include:

  • 15% of registered blind and partially sighted people were not visited for a needs assessment; and of those that were
  • 27% of people were not offered a service following the assessment

Respondents reported that the emotional impact of their sight loss was not addressed. The help received “Didn’t address any of the psychological or emotional needs, social needs, nor how to deal with isolation…”

The lack of support for people coping with sight loss has a knock-on effect on confidence and mental health. Guide Dogs’ research found that higher mental health scores are associated with:

  • increased ease of Independent Living Skills activities;
  • increased mobility;
  • increased likelihood of employment;
  • lower reported isolation.

There are higher rates of depression among older visually impaired people. People with depression are less likely to accept rehabilitation services. An individual’s experience of sight loss, together with the availability of social support appears to be of greater importance to outcome than the severity of sight loss.

Diversity

Two-thirds of all people with a visual impairment have an additional disability or serious health problem such as deafness, arthritis, angina or diabetes. Many people with a learning disability have a sight problem which is undiagnosed. Some black and minority ethnic communities have a higher incidence of eye disease than a comparable population of white Europeans.

Acknowledging modest improvements

The NI Steering Group acknowledges that there have been some improvements in the arrangement and delivery of rehabilitation and other care services for blind and partially sighted people across Northern Ireland. However, there are still unacceptable variations in the quality of provision, and still too much focus on “process measures” and insufficient attention to planning and evaluating services around the desired outcomes of visually impaired people.

Section 3 - Firm foundations - new beginnings

This section seeks to marry the best of current practice (firm foundations) with new ways of working, rising to the challenges of the changing health and social care environment and developing a truly person-centred, outcome-based service model fit for the 21st century (new beginnings).

Diagnosis – The start of a new journey or the end of the line?

The emotional impact of sight loss and particularly its diagnosis is well documented. Despite a streamlined and simple referral process, the current system rarely offers assistance in meeting the immediate and urgent critical needs of the individual which are actually intensified by the process of diagnosis and certification.

We know that many people experience:

  • lack of emotional support around the time of diagnosis;
  • delays between referral from the eye clinic and the commencement of a social care assessment;
  • lack of information about services or equipment, and
  • lack of advocacy services.

Good practice does exist in addressing these needs but tends to be the exception rather than the rule. According to Guide Dogs’ research, almost three quarters of respondents reported that sight loss had an impact on their confidence. For many people, the time of going blind was singled out as the period during which their confidence was affected. Support and someone to talk to during this period were seen as major contributors in helping to restore confidence.

The NI Steering Group is keen to hear views on proposed solutions to these longstanding problems presented below. These may not be the only solutions and so we are also inviting alternative suggestions. Brief descriptions of some existing models are given in the full consultation paper.

Proposal – “The Middle Step”

Structured information provision and emotional support available to people around the time of diagnosis: timing dependent on the individual.

Group work for people with recent sight loss can be a hugely positive and rewarding experience as well as being a cost effective way of giving people information about living with visual impairment, demonstrating assistive technology and community equipment and providing a forum for structured peer support. There is research evidence that peer support is an effective method of helping people to adjust to sight loss.

It is proposed therefore to develop a “middle step” that bridges the gap between formal diagnosis and the commencement of community-based rehabilitation. As well as having a key aim of providing peer support, it could include information about sight loss and advice on coping with it, a basic introduction to low vision, preparation for rehabilitation skills training and familiarisation with popular items of equipment.

The optimum timing of such a “middle step” programme is something that is likely to be dependent on the individual and their circumstances. Some people may benefit from support prior to diagnosis and certification. Others may have no immediate desire to join a group to find out about sight loss or sources of help – let alone to explore feelings about their life change. So whilst the “middle step” might generally be described in terms of “shortly after diagnosis” we recognise that timing needs to be more flexible.

We also acknowledge that family carers have their own discrete needs arising from the impact of sight loss on family relationships. We believe that structured peer support could play an important role in helping family carers to come to terms with their own changed circumstances, and help them understand how best to support their family member in engaging with and benefiting from rehabilitation to achieve their desired outcomes.

Section 4 The Rehabilitation Worker – a pivotal role in delivering independence and well-being

The skills of a fully qualified Rehabilitation Worker (RW) are often the key to the successful rehabilitation of visually impaired people.

Our research in Northern Ireland and across the UK has revealed a number of issues which suggest some worrying trends:

  • the overwhelming majority of workers chose rehabilitation as a career of second or third choice;
  • lack of career development opportunities results in many RWs opting to re-train in related areas (i.e. Social Work) or to leave the field altogether;
  • the number of RWs operating within adult services in the UK is in the region of 550 (less than the number employed five years ago).

According to Guide Dogs’ research, the percentage of time currently devoted by RWs in Northern Ireland to tasks is as follows:

  • administration (40%)
  • assessment (35%)
  • delivery of the service (25%).

However, despite the growing crisis we are not simply advocating the training, recruitment and employment of more RWs. While that is part of the solution, we believe there are other appropriate responses.

We believe that the case for the formalisation of a Rehabilitation Assistant (RA) role trained at NVQ Level 3 or 4 is stronger than ever. Some of the more routine tasks could be undertaken by the RA leaving the higher qualified RW to address more complex needs.

The ageing profile of the population presents a compelling argument for more attention to be paid to the prevalence of sight loss and its impact in both qualifying and “in-service” training for all those working with older people. Furthermore, we also believe that in some instances, given the right level of training, non-specialists carrying out assessments of older people could respond appropriately to less complex sight loss needs without recourse to the specialist skills of RWs.

Many practitioner roles across health and social care have been reviewed over the years. Often change has been resisted, but it is clear that simply “more of the same” is not a viable option now or in future.

We believe that establishing a UK-wide body with all the powers and attributes of those in other fields – Occupational Therapy, Nursing, Social Work, etc. – is vital to the future of adequate and appropriate services to blind and partially sighted people. We envisage this body having regulatory authority similar to that of the member organisations of the Health Professions Council along with the remit to authorise training, produce a code of ethics and take responsibility for discipline in the profession. Perhaps most importantly, the professional body would be able to secure the title “Rehabilitation Worker” along with any others that emerge as a result of the changes proposed in this paper. This is vital to end the proliferation of job titles and prevent those with no appropriate training from being employed as qualified workers and able to use the title, “Rehabilitation Worker”. Such situations do little to provide service users with the confidence they require that those charged with meeting their needs are qualified to do so.

Of course “Rehabilitation Worker” may not be the term of choice. “Rehabilitation Officers” or “Rehabilitation Officers (Visual Impairment)” – often abbreviated to “ROVI” – are also titles that are used. There needs to be agreement on the title to be protected. It should be noted that at the moment, neither Skills for Care and Development nor the General Social Care Council are aware of any plans anywhere in the UK to register RWs.

A “pan-sensory” role has also been suggested within sensory teams. One suggestion is that such a role would respond to the “low-level” needs of all service users with hearing impairment, visual impairment or dual sensory loss. This role envisages for instance a worker trained to provide support at a functional level and might be exemplified by the provision of equipment and training in its use. We welcome suggestions as to other functions such a role may have.