With the incidence of mental illness among deaf people high and specialised services almost non-existent, getting help can be difficult. Emma Dent explores the gaps in care

With the incidence of mental illness among deaf people high and specialised services almost non-existent, getting help can be difficult. Emma Dent explores the gaps in care

  • The incidence of mental illness among deaf people is around 40 per cent.
  • Only three NHS services currently provide inpatient and day hospital care for the deaf.
  • Deaf service users are often prepared to travel for specialist care, and some even relocate.

Poor access to mental health services is a point of loud and vociferous contention for many minority groups. But of the sections of society that suffer as a result, the plight of deaf people has a particularly low profile.

With the incidence of mental illness among deaf people at around 40 per cent - compared with 25 per cent for hearing people - and a two to five times greater rate of emotional and behavioural problems in deaf children, need is great.

But finding help can be complicated. Access to services for the deaf is curtailed in a number of ways, particularly by problems with communication. For most profoundly deaf people, sign language is their first language. Their standards of written and spoken English are often poor as it is completely different to British sign language. Few hearing people know sign language and if a clinician does it is unlikely they will know mental health and therapeutic terms. With lip reading not a sufficiently accurate tool to be used in mental health assessments either, an interpreter must be used, and not all services have easy access to them. This can all make access to primary and specialist services and appropriate care difficult.

'Unless people can communicate, they can be completely misdiagnosed, and simple things such as making a GP appointment can be difficult,' says Stephen Powell, chief executive of mental health and deafness charity Sign. 'The language situation means deaf people need specialist treatment.'

Few and far between

There are only three NHS services providing inpatient and day hospital care for the deaf, at South West London and St George's Mental Health trust; Bolton, Salford and Trafford Mental Health trust; and Birmingham and Solihull Mental Health trust. In total, they have fewer than 50 inpatient beds.

All run additional satellite clinics. South West London and St George's is also home to the only inpatient child and adolescent service for deaf people under 18, with six beds, and provides outreach community services as far away as York.

High-secure services for deaf adults are housed at Nottinghamshire Healthcare trust's Rampton Hospital. The private sector provides medium-secure and personality disorder services. Each of the specialist inpatient services also provides clinics in Scotland or Wales - the latter has no deaf service at all.

All the inpatient services are generic, with no psychiatric intensive care and no inpatient specialities such as older age, eating disorders or drug and alcohol misuse care.

As far-flung as services are, Mr Powell says deaf service users are prepared to travel for specialist care and would rather be referred to them by a local provider than struggle on in services designed for hearing people. It is not unheard of for deaf people with a history of mental illness to relocate nearer to services.

'Families would prefer to travel quite long distances rather than see local services,' says Dr Andy Howell, whose London-based children's outpatient service sees clients from as far away as Bristol, Exeter and Wales.

As with other patients with complex needs, there is a lack of suitable placements for deaf service users to be referred on to. The average length of stay for a deaf inpatient is, at eight months, at least twice the sector average, putting service users at risk of institutionalisation.

'Many housing schemes will not take someone who has a history of being aggressive, or who self-harms. Such clients need one-to-one care and place huge demands on a service,' adds Mr Powell.

Promising developments

Deaf charity RNID has plans for four community-based residential care homes for clients with a history of mental health problems.

'A third of our service users have some kind of mental health issue, right across the spectrum from anxiety to acute psychosis,' says RNID executive director of services Michael Adamson. 'Clients can bounce in and out of the system as there is nowhere to send them and then there is not enough support in the community. We are looking at providing social care in a therapeutic environment with a mixture of independent living and communal housing.'

Sites are now being sought for the first two eight-bedded units, likely to be in the Midlands.

'There is a deaf school in Derby, so services in the area are more used to the needs of deaf people, who can struggle to access mainstream services,' says Mr Adamson.

It is hoped the units will be open in late 2008 or early 2009, to be followed by two further units in a southern location.

Despite the higher incidence of mental illness among deaf people, the small number of people who are profoundly deaf (about 0.1 per cent of 16-60 year olds) means getting services enough attention from commissioners can be difficult. The specialist centres report that they can get referrals from primary care trusts who have never had to commission mental health services before.

'These are highly specialist services and can get left behind,' says South West London and St George's specialist services general manager Mandy Dunn.

Deaf services are hopeful that a commissioning group set up to look at the needs of deaf services will make some progress in this area. The group, which includes RNID, specialist clinicians and the chief executives of the three trusts that host deaf services, met for the first time in June.

London services are already commissioned on a London-wide basis.

'Each strategic health authority should have a PCT to lead on this with a specialist commissioning group that includes deaf people and the voluntary sector,' says Mr Powell.

'This is an opportunity to develop a real care pathway, if we can pull it together. This is the most optimistic I have been in 16 years.'

Specialised care: John Denmark Unit

Although based in Greater Manchester, Bolton, Salford and Trafford Mental Health trust's John Denmark Unit for deaf people has clients from south Wales to the Outer Hebrides.

The unit's 59 staff include a neuro-psychologist, art psychotherapist and 20 nursing staff. A number of the staff and nursing students are deaf. Its work includes a sex offender treatment programme and some inpatient clients are step-down low-secure clients from medium-secure units. Services have been adapted to make them gender sensitive; plans to expand the number of female beds from four to seven are under way.

Length of stay in the unit's inpatient beds varies from two months to 12 years. The trust admits some of the longer-stay patients have been inappropriately housed in the service, largely because there is nowhere else for them to be sent.

Clients range from age 18-75 and a number have additional needs, including learning difficulties, personality disorders and Asperger's syndrome.

'We have been refining our admission criteria over the past 12 months as we have to have a service that is about engaging people with mental health problems and the fact that we only get referrals from secondary care,' says trust assistant director of services Andy McDermott.

'We feel a responsibility to all clients but with two to four consultants, the work we can take on is limited.'

He adds: 'People who work here become passionate about the service and the sense of injustice about access to care for deaf people.'

Staff also do community-based work. Mr McDermott adds that the number of inpatient beds in the service will begin to decrease as more services are based in the community.

With the unit participating in work to improve commissioning of deaf services, he says primary care trusts can be reluctant to commission the expensive service.

Jenny Walker, modern matron at the unit, stresses the importance of staff in deaf services not becoming isolated. In common with other deaf services, the unit is a member of the British Society for Mental Health and Deafness, which holds professional development events.

Ideally all staff must have British sign language skills before they start work but training can be given.

'Staff can get frustrated with the communication issues and end up moving on,' she says.

Ironically, given that deaf services are so few are far between, the John Denmark Unit faces considerable competition for its staff, as there are private providers of deaf services in nearby Bury and Warrington.

Community services: South West London and St George's

Community-based mental health services for deaf people are rare. South West London and St George's Mental Health trust runs a unique assertive community service for deaf people.

Elsewhere, there are two services run by single community psychiatric nurses, with a third similar post in Bristol currently vacant.

One service is based in Newcastle, part of Northumberland, Tyne and Wear trust. The other, run by Nottinghamshire Healthcare trust, is led by community mental health nurse for deaf people Emmanuel Chan. Clients are referred to him by the trust's community mental health teams while he can refer clients to early intervention or crisis resolution teams.

'Most of my mental health colleagues do not have a lot of experience of working with deaf clients. We have access to full-time interpreters,' says Mr Chan.

A second full-time worker for the service has been appointed and is due to take up post next month.

South West London and St George's deaf enhanced support team (DEST), was set up in response to an inquiry investigating the circumstances in which a profoundly deaf young man with a history of severe mental illness killed one of his carers. Lack of appropriate services was pinpointed.

'We follow the assertive outreach model, with clients who are hard to engage with and have a history of psychiatric admissions and poor compliance with medication. But we cover the whole of London, not one locality,' says DEST team leader Gill Taylor.

'We make a point of keeping a foot in the deaf services camp and another in the assertive outreach world.'

DEST uses interpreters but supports staff in becoming fluent in British sign language.

Communication problems: seeking solutions

It is often difficult for deaf people to make themselves understood to mental healthcare workers.

There are very few clinicians able to communicate in the same language. Meanwhile, using written English may not be a viable option as it is frequently a second language for deaf signers, and the inaccuracy of lip-reading means it is not usually considered an effective substitute.

Use of sign language can bring other problems. The facial expressions used can be misinterpreted. Signing that something is sad, for example, does not mean that the signer is sad, but can be interpreted as such. The rapid and expressive use of the hands by sign language users can also be misunderstood.

Even clinicians who learn to sign can struggle to reach a level of fluency where it is possible for them to communicate medical and therapeutic ideas properly.

Likewise, sign interpreters would have to be highly skilled to be able to communicate the complex issues and emotions relating to mental illness.

A further complication can be introduced if a service user uses signing that is not British sign language or if their carer's first language is not English.

Taking sufficient time is essential, says Jenny Walker, modern matron at Bolton, Salford and Trafford Mental Health trust's John Denmark Unit. 'All therapeutic tools must be adapted and all assessments must be made on a non-verbal basis,' she says.

Interpreter Irene Dixon, who works at the unit, explains that an interpreter must not be tempted to over-interpret for a service user, no matter how great the communication problems. She adds: 'We try to use the same interpreters; clients do not want everybody hearing about their history.'

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