Modernising mental health Services for people who are Deaf
Sense welcomes the opportunity to respond to A Sign of the Times.
Sense is a national voluntary organisation which works and campaigns for the needs of people who are deafblind, providing advice, support, information and services for deafblind people, their families and professionals. It was founded in 1955 as a self-help group for parents of children born with congenital rubella syndrome. Over the years our aims have expanded to encompass people with acquired deafblindness. Many of our service users experience a range of additional disabilities, including learning difficulties.
Sense welcomes the Government's recognition that Deaf and deafblind people are currently disadvantaged when accessing mental health services. A Sign of the Times represents a valuable step towards tackling this. In general the document accurately identifies the main issues relating to the provision of mental health services to Deaf people and the challenges of achieving the Government's aim of ensuring that Deaf and deafblind people benefit equitably from current mental health policy. However, in order to develop a strategy to deliver this two things need to be included. Firstly the strategy needs to adequately address the needs of deafblind people. Secondly it needs to identify much clearer targets and necessary funding to deliver those targets.
A Sign of the Times indicates that deafblind as well as Deaf people are intended to be included in the scope of the strategy. It goes on to give a very clear definition of the term Deaf, as meaning the cultural and linguistic Deaf community for whom BSL is their first language. The document then states when the term Deaf people is used it is intended to include Deafblind.
Definition of deafblind
In the United Kingdom the main national voluntary agencies concerned with services to deafblind people have agreed that:
Persons are regarded as deafblind if they have a severe degree of combined visual and auditory impairment resulting in problems of communication, (access to) information and mobility.
The Nordic Council (practitioners from the Scandinavian Countries who work in the field of deafblindness) has also developed a definition of deafblind.
The severity of the combined visual and auditory impairments means that deafblind people cannot automatically utilise services for people with visual impairments or with hearing impairments … deafblindness must therefore be regarded as a separate disability which requires special methods for coping with the functions of everyday life.
By definition therefore, deafblind people cannot use mainstream Deaf services without recognition of their specific needs. To adequately address the needs of deafblind people A Sign of the Times needs to be clear about the different groups which are included in the strategy.
The term deafblind is an umbrella term covering a range of different groups, each of which has different experiences, and faces different challenges. Four broad groups are included.
1) People who are congenitally deafblind - born with a hearing and vision impairment. People in this group are denied the major avenues of learning and interaction. People who are born deafblind, or become deafblind before they have the chance to develop language skills often have little formal means of communication. Some may not be able to access the concept of language at all. Reliable communication of feelings becomes much harder with obvious implications for mental health.
People who are congenitally deafblind may display unusual or "challenging" behaviour, which may include self harm or destruction of property. Such behaviour needs to be understood in the context of the person's difficulties with communication. The person may be trying to express something which relatives, carers or staff are unable to understand.
2) Individuals who are born deaf and later develop blindness. Depending on the severity of the person's deafness during childhood they may grow up as part of the Deaf community, using BSL. As their sight deteriorates they will need to use visual frame signing or hands on signing. In this response, these people are referred to as Deaf visually impaired people. Others in this category, who have some hearing impairment and often use hearing aids may communicate using speech and lip reading.
3) Individuals who are born blind and later develop deafness will communicate with speech and may use Braille.
4) Individuals may be born both sighted and hearing, but develop dual sensory loss, often in older age. They may communicate using deafblind manual or block alphabets and may use Moon for written information.
There are two possible reasons for developing services which specifically address the needs of Deaf people - because of their specific communication needs and because of their cultural difference from the hearing community. Only part of the deafblind population would be culturally a part of the Deaf community - Deaf visually impaired people. All of the deafblind population will have specific communication needs.
The strategy needs to address each of these groups in different ways. For Deaf visually impaired people it needs to look at how the specialist Deaf services can be made accessible to those who also have a significant level of visual impairment. A second group, referred to in this response as others with acquired deafblindness, includes groups three and four above, as well as deaf visually impaired people who do not use BSL. The key issue for this group is ensuring that mainstream mental health services are accessible to them. For congenitally deafblind people there are major difficulties in delivering mental health care, which are entirely different from the difficulties of delivering services to the Deaf community. This response therefore deals with this group separately.
How many people are deafblind?
The document estimates the size of the Deaf community, but not the numbers of deafblind people. There are about 23,000 deafblind people in the UK. Many of the problems of delivering high quality mental health services to Deaf people are a result of the low numbers. This problem is even more acute for deafblind people. Part IV identifies the importance of reviewing the population in relation to its cultural diversity and vulnerable groups. Such a review is a pre-requisite for planning services. The deafblind population should be included in any such review as a group distinct from the Deaf population. Department of Health guidance on Social Care for Deafblind Children and Adults issued under Section 7 of the Local Authority Social Services Act 1970 (Department of Health 2001) requires Local Authorities to identify, make contact with and keep a record of deafblind people in their catchment area. This information should provide a useful starting point for health planning. However, Sense's experience shows wide variations in the way in which local authorities are carrying this out. Health bodies are likely to need to carry out their own research to provide the necessary detail for service planning.
Proposals for Service Development
A Sign of the Times makes reference to Standards for Services for Adults who are deafblind or have Dual Sensory Impairment (Sense 2000) as being helpful to Primary Care Trusts. These Standards would also be of use to any health service provider looking at improving services to deafblind people, and we make reference below to specific standards of particular relevance. The guide Serving Your Deafblind Patients (Sense and Deafblind UK, 2001a) and the recommendations contained in Who Cares? Access to Healthcare for Deafblind People (Sense and Deafblind UK 2001b) would also be of use.
Mental Health Promotion
Children
The recognition of the crucial importance of early identification of sensory difficulties and early intervention is welcomed. For deafblind children the importance of receiving specialist early intervention is crucial to their development, and physical and emotional wellbeing. Sense has extensive experience of providing assessment and support to deafblind children, and is involved in the DFES early support pilot programme - 'improving services for disabled children under 2'. Ideally early intervention should be a partnership between health, social services, education and parents. We would therefore agree that the increased involvement of health in this process would be beneficial.
Family support is essential to strengthen the ability of families to provide effective support to their children. Reference is made to initiatives such as Sure Start in relation to family support. However, for families with children with low incidence disabilities and complex needs, such as children who are deafblind, Sure Start, with its tight generic local focus, is often not able to provide the level of support that is needed. Another layer of specialist advice is needed for these families, perhaps provided by a regional centre or service.
Social factors
Mental ill health cannot be understood outside the context of the rest of a person's life, culture and lifestyle. Employment, poverty, poor housing, social exclusion all affect a person's mental health. The mental health of Deaf and deafblind people needs to be seen in this context. The higher rates of unemployment of disabled people in general and dual sensory impaired in particular, are likely to have an affect on their mental health. Unemployment amongst people with a sensory impairment may be related to discrimination and/or poor access to education. Mental health promotion initiatives need to take account of this and address issues such as access to education, employment and social inclusion.
Primary care
Meeting standards 2 and 3 of the National Service Framework in relation to deafblind people represents a major challenge because in general primary care is not accessible to deafblind people. A recent survey (Sense and Deafblind UK, 2001b) found that deafblind people routinely face discrimination when accessing primary care services. One in six have avoided visiting their GP when they needed to because communication was difficult. Nine out of ten GPs with deafblind patients have made no attempt to improve access.
Primary care is critical to the delivery of mental health services, including for serious mental health problems. About one third of people with a serious mental health problem will receive all of their services through primary care. An estimated one in four appointments with a GP concern a mental health issue. Ensuring adequate access to primary care for Deaf and deafblind people should therefore be a priority. Standards 41 and 42 of Standards for services (Sense 2000) refer to standards for Health authorities primary care trusts and general practices.
The document states that primary care workers would benefit from training in Deaf awareness. There is also a need for deafblind awareness training. Sense would recommend that basic deafblind awareness should form part of all health professionals training (see later section for more detail on training).
Because of the low numbers of Deaf and deafblind people with mental health problems it is unlikely that every general practice will have expertise in this area. However it would be reasonable for each Primary Care Trust to identify one practice which would develop a specialism. Equally it is unlikely that each Local Implementation Team will have the necessary information and expertise on deafblindness to enable them to carry out their responsibilities in relation to this.
There is a role for the strategic health authorities in ensuring co-ordination of services. A manager within each Strategic Health Authority should have responsibility for ensuring co-ordination of adequate mental health support for Deaf and deafblind people. This person should be able to act as a resource for those trying to implement the strategy at a local level, providing them with advice and information on issues such as training, adequate levels of trained staff, etc. They would also oversee the provision of resources such as adequate interpreters and Communicator Guides.
The recommendation that all GP services should have a textphone and an established relationship with an interpreting service is welcome. Those with acquired deafblindness may also need facilities such as induction loops for hearing aid users. For deafblind people, access to written information is also an issue. More than 90% of deafblind people have never received accessible letters from any NHS organisation (Sense and Deafblind UK 2001b). Surgeries need to be able to provide information in large print, Braille, Moon or on tape as required.
The provision of training for all staff in how to use the equipment and services is also essential. One Deaf visually impaired person told Sense:
'I have never yet met a doctor who is 'deaf aware' or has any knowledge of how to use interpreters. On one occasion the doctor called the interpreter into the office and said that she would not need to interpret because she was used to working with old people who had hearing difficulties and would just shout at me like she did them.'
Who Cares? (Sense and Deafblind UK 2001b) also identified a range of good practice including GPs allocating extra time for appointments to allow for communication, allowing walk-in appointments for a person who was unable to use a telephone, and rearranging furniture to make the waiting area safer.
Specialist Services
The existing specialist Deaf mental health services do provide a service to deafblind people, but are generally not well equipped to do so, particularly in relation to inpatient services. Standard 45 of Sense's Standards for Services (Sense 2000) refers to mental health services for Deaf people. Within each of the Deaf services one manager should be identified who will be responsible for people with dual sensory impairment. Adequate levels of support should be available to deafblind people to access the specialist services. For instance, for a deafblind person to safely use inpatient facilities they might require a Communicator Guide with them throughout the day. The specialist services should have access to adequate Communicator Guides and funding to allow this to happen.
Access to advocacy services for Deaf and deafblind people is vital. This needs to include not just advocates to contribute to care planning, but specialist mental health advocates for people subject to the Mental Health Act. If Rampton is to be formally recognised as providing a high secure service to Deaf people, the advocacy services based at Rampton would need people able to work with Deaf clients. Preferably this should include Deaf advocates, but at a minimum they should have received training in Deaf awareness and have access to interpreters. Funding and service agreements for this service need to reflect this need.
There are issues of the design of settings within which services are delivered. For instance, acoustics and availability of induction loops are important for those who use hearing aids. Often simple and relatively cheap alterations can make a significant improvement to buildings in terms of safe access for deafblind people. Trusts should audit their buildings with access for sensory impaired people in mind. When alterations are made or new buildings are being designed, both the specialist Deaf services, and mainstream services should seek advice on maximising effective design for dual sensory impaired people.
Mainstream mental health services
Staff in mainstream mental health services will need awareness training around the limitations of hearing aids, use of loop systems and advice regarding a suitable acoustic and well-lit environments for hearing aid users.
Intermediate services
It is not realistic for the three specialist services to provide comprehensive intermediate services across the whole country. However, it is equally unrealistic to expect the proposals included in Option one alone to deliver the aim of allowing Deaf and deafblind people to benefit equitably from mental health policy. A more realistic proposal would be option one but with the specialist services providing additional support, advice, and direct services where necessary. In this way specialist professionals would not have to spend large amounts of time travelling to see clients, but would be available to do so or to provide advice to local staff as necessary. Local mental health professionals working with Deaf or deafblind clients would be able to draw on the expertise developed by the specialist services. Co-ordinating the delivery of the intermediate services and sign-posting local staff to specialist advice and support, is probably best done at Strategic Health Authority level.
Option one would require adequate levels of training and communication support. Ensuring the competence of early intervention, assertive outreach and crisis services to identify the needs of Deaf or deafblind people is essential, but would require considerable investment in training for staff running these services.
Sense supports the proposal to use financial incentives to encourage local professionals to develop a special interest in Deaf people. This should include encouragement for people to develop an interest in deafblind people, including awareness of the needs of all groups of deafblind people.
The recognition of the value of links with non-statutory organisations is welcome. Sense and Deafblind UK for instance have a wealth of experience of working with deafblind people which is unlikely to be replicated in the statutory sector. However, it should be recognised that this has a funding implication. Voluntary organisations in this context can provide a high level of expertise, they should not be seen as a source of free additional support.
General Issues
Targets and funding
Development of effective mental health services requires a commitment from Government backed by adequate funding. This is particularly true for deafblind services which can often require very intensive intervention from people with particular specialisms, consequently carrying additional costs. There is a need for realistic time-scales, with clear targets and milestones to ensure that effective changes are introduced in practice. For instance, targets for numbers of staff trained in BSL or deafblind awareness need to specify the level to which people should be trained. If plans are to be incorporated in the National Service Framework Implementation Plans then target dates need to be set by which all Local Implementation Teams should have done this. The strategy should also be developed to identify the bodies responsible for delivering these targets and for monitoring progress.
Training and communication support
Sense welcomes the recognition of the importance of awareness training for health professionals and for the availability of communication support. All references to Deaf awareness training should be amended to explicitly include deafblind awareness training. This should include the skills required to safely guide a deafblind person.
It is important to be clear about what level of training is appropriate for particular staff. BSL level 1 might be appropriate for reception staff, but even level 2 will not be adequate for carrying out mental health assessment or treatment. This would require fluent BSL, and where a fluent professional is not available, properly qualified interpreters should be used. Interpreters will also need training to be able to work in mental health settings, including mental health awareness. Deaf visually impaired patients will require an interpreter with an understanding of their particular communication needs. Communicator Guides should have the relevant CACDP qualification.
Health professionals need to understand the need for properly qualified communication support workers, and how to access adequately trained support in their area. If Local Implementation Teams are to be responsible for scrutinising the provision of interpreters and staff training they will also need guidance on what levels of qualification are appropriate.
These issues apply not just to direct service delivery, but to other parts of the NHS which Deaf and deafblind patients may need to access such as the PALS services and Patients' Forums.
User involvement in planning services
The document says little about user involvement in planning and monitoring services. Deaf visually impaired service users should be involved in planning the development of the specialist and intermediate levels of mental health services. CHI should also seek to recruit Deaf and Deaf visually impaired reviewers to carry out reviews of specialist and intermediate services. Equally the new Patients Forums need to be accessible to deafblind patients. This should include the ability for Deaf and deafblind people to become members of the Forums and for the Forums to be able to gather information about health services from Deaf and deafblind patients. They should be provided with sufficient resources to allow the training and communication support they need for this. Standards 8 and 9 of Sense's Standards for Services (Sense 2000) refer to involving service users in planning and evaluating services.
Deaf staff in mental health services
Sense welcomes the idea of recruiting and training more Deaf, deaf or deafblind mental health professionals. Sense's Peer Mentor Project for people with Usher syndrome has demonstrated the value of receiving support from someone who has similar experiences of sensory impairment. However there is a need for Deaf staff to have an effective voice within the organisations for which they work if they are to have an influence on organisational culture. Sense South East, for instance, organises a focus group for sensory impaired staff, allowing them to raise issues of common concern. A similar model would be worth developing in mental health services where Deaf people are being recruited specifically to improve access for Deaf patients.
Deaf staff also need to be involved at all levels within mental health services. Staffing strategies need to address the issues of allowing Deaf professionals to progress their career within mental health services. Deaf professionals should be involved in planning what support is needed for this to be effective including accessible training and mentoring.
Congenitally deafblind people with little or no formal communication
A Sign of the Times addresses the needs of a group of people who would be able to communicate, using BSL, complex concepts about feelings. It dos not address the needs of congenitally deafblind people who may have extreme difficulties communicating even simple concepts about their basic needs, such as that they want a drink or food. Sense has extensive experience of working with people with multiple disabilities and complex needs, particularly those with learning difficulties as well as sensory impairment.
These people rely on the staff who support them to advocate for them. Often it will be impossible to communicate with them without the help of someone who knows them well. This makes them particularly vulnerable.
The behaviour of people in this group needs to be understood in the context of the difficulties they experience in communicating. Congenitally deafblind people may have a limited understanding of the world around them and how to interact with it. Behaviour which in other settings would be seen as violent or self harming can be an attempt to communicate. For example, self harming behaviour is a common way that people try to express that they are in pain. It can also be an expression of frustration, or an outlet for an emotional outburst. Because staff owe a duty of care, and have to intervene when someone displays self injurious behaviour, it can also be used as a way to ensure interaction with another person. Sense has a lot of experience of working with people with this type of challenging behaviour and of developing preventative strategies and solutions. However, our experience is more related to understanding challenging behaviour as a means to communicate than from a mental health perspective.
There are practical issues relating to delivering any kind of healthcare to this group. Travelling is not easy so that attendance at the specialist centres would be difficult or impossible. Spending time in the waiting room is difficult, so appointments with health professionals need to be arranged so that the patient can go straight in on arrival.
However, the major problem is that very little is known about the diagnosis and treatment of mental health problems of people in this group. Much can probably be learned from those with experience of people with learning difficulties and mental health problems. To deliver an adequate mental health service to this group further research is needed and Sense would recommend that this be a priority for the NHS R&D programme.
Sue Brown
Head of Campaigns and Public Policy
October 2002
