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 England”

Prepared by Guide Dogs on behalf of:

TheRehabilitation Project 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.

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 England”. 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 local authorities 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 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 agencies to “enable radical improvement for blind and partially sighted people through the provision of better rehabilitation services.” The RPG membership is outlined in Appendix 2.

Why was the RPG established?

Several Government reports from around the UK have criticised the quality of support and services available to blind and partially sighted people reporting amongst other things:

  • inadequate mobility and other rehabilitation services;
  • insufficient or meaningless service user involvement in service planning and delivery;
  • lack of information;
  • lengthy waiting times for assessment and/or service delivery;
  • a shortfall in qualified Rehabilitation Workers (RWs).

Despite some improvements in some areas, there remain unacceptably wide variations in provision.

What has the RPG been doing?

The RPG has analysed existing and new research to better understand 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.

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 England are changing. This section briefly highlights some key demographic and policy drivers which must be considered in reviewing rehabilitation provision.

Older people

In his 2006 report “Securing Good Care for Older People: Taking a long-term view”, Sir Derek Wanless noted that in the next 20 years, the number of people aged 85 and over in England is set to increase by two-thirds. Visual impairment is far more common in later life so its prevalence is also set to grow significantly. From the Government’s perspective, “Opportunity Age”sets out its strategy for an ageing society. The key aims of the strategy are to:

end the perception of older people as dependent;

ensure that longer life is healthy and fulfilling; and

ensure that older people are full participants in society.

Health and social care

The recently published policy documents including Green and White Papers contain some recurring themes:

Informed choice

Personalisation

Working together

Prevention

Emphasis on “outcomes”

Stated outcomes which health and social care should deliver are:

  • physical and emotional well-being
  • improved quality of life
  • opportunities to make a positive contribution
  • choice and control
  • freedom from discrimination
  • economic well-being
  • personal dignity

Individual Budgets and Direct Payments are to be extended 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:

  • Great 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.

A recent review of the social care workforce, “Options for Excellence - Building the Social Care Workforce of the Future” set out the Government’s vision for 2020 of “a highly skilled, valued and accountable workforce looking at individuals in their personal, family and community context, and providing imaginative and innovative services.”

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 visually impaired people might consider the following areas of need:

Managing health

Emotional wellbeing

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. Fair Access to Care Services greatly limits access to local authority provision.

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:

  • 19% of registered blind and partially sighted people were not visited for a needs assessment; and of those that were,
  • 40% 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 RPG 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 the UK. 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;
  • inadequate assessment of need;
  • limited or non-existent follow up at the end of a rehabilitation package or after the provision of community 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 RPG 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. This chimes with the Expert Patient Programme for people living with long-term conditions.

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.

There is a growing mis-match between the incidence of visual impairment (increasing) and the number of qualified RWs (in decline). Our research has revealed a number of issues which suggest some worrying trends:

  • the average working life of qualified RWs is around 8 years;
  • 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 to tasks is as follows:

  • administration (35%)
  • assessment (40%)
  • 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.

Turning again to the Options for Excellence report referred to in Section 1 “….all those who work within social care will have clarity about their role and how it fits with those of their colleagues, including where social care staff work with other professionals in multi-agency teams. Qualified staff will use their time to carry out the tasks in the most effective way to improve outcomes for service users, and aim to intervene early to prevent problems developing.”