Monday, September 25, 2017

Evan Yacoub details the importance of appropriate responses to the issue of mental health for people with an intellectual disability…

  • Limitations in access to mental health services for people with intellectual disability affects  their dignity…This means that their human rights are affected.
  • RECOMMENDATION:  Dedicated teams of Mental health services for people with intellectual disability.

Catherine Dupre, an Associate Professor in Comparative Constitutional Law, wrote in 2011 in the Guardian newspaper that dignity “sits in the wider human rights landscape of the European convention on human rights (ECHR)”, and that there was a “sorry picture of how some of the most vulnerable members of society are treated when their need for support is at its greatest. Reliance on dignity has highlighted their vulnerability and imposed a positive duty to treat everyone in a human way that does not degrade or ignore their identity”.

I am of the view that that limitations in access to appropriate assessment and treatment of mental health problems in people with intellectual disability impacts on their dignity. This subsequently means that their human rights are infringed upon. Simon Wessely, President of the Royal College of Psychiatrists in the UK wrote that “Dignity…  is a word that stems from the Latin for worthiness. Easily violated, human dignity is complex. It is dependent upon our fundamental human rights being conferred upon us: the right to be spoken to with respect, the right to be clean, the right to make decisions, be spoken to politely, to live pain-free, eat nutritious and tasty food, the right to privacy and to social inclusion, and the right to independence”.

Poor mental health which is not assessed and treated in a timely manner can impact on how others perceive us, how much attention we can pay to our personal hygiene, our decision-making, our appetite, and our independence.

In 2006, ‘A vision for change’, a government white paper, reported that services were slow to respond to mental health needs for people with intellectual disability. The paper references a report by the Irish College of Psychiatrists which states that “mental health/psychiatric services for people with intellectual disabilities have not kept pace with …developments – they remain under-resourced and grossly underdeveloped in many Health Board areas in Ireland. Some counties have no psychiatric service at all for people with intellectual disabilities.

The white paper also states that “There are still people with intellectual disability and mental health problems who do not receive any service, particularly those with a mild intellectual disability. While there is ring-fenced funding for intellectual disability services, the funding for mental health services within this is not clearly identified. There are also a number of structural barriers that hinder access to mental health services for people with intellectual disability. For example, voluntary bodies do not operate within defined catchment areas and are not funded to provide a mental health service to all those with an intellectual disability who might need such a service. Therefore, individuals with intellectual disability and a mental health problem do not have the right of access to a mental health service that others in the population have”.

A vision for change made a number of important recommendations in this area, namely:

RECOMMENDATION 14.6: Mental health services for people with intellectual disability should be provided by a specialist mental health of intellectual disability (MHID) team that is catchment area-based. These services should be distinct and separate from, but closely linked to, the multidisciplinary teams in intellectual disability services who provide a health and social care service for people with intellectual disability.

RECOMMENDATION 14.7: The multidisciplinary MHID teams should be provided on the basis of two per 300,000 population for adults with intellectual disability.

The paper also stated that the following mental health professionals should comprise the core multidisciplinary team to deliver mental health services to adults with intellectual disability and a mental health problem:

  • one consultant psychiatrist
  • one doctor in training
  • two psychologists
  • two clinical nurse specialists (CNS) and registered nurses with specialist training
  • two social workers
  • one occupational therapist
  • administration support staff

11 years on, MHID teams as described by VFG are yet to become operational. Finally however, there are significant developments afoot. The HSE mental health division has appointed a project team to kick start the implementation of VFG guidance in this area. Key issues for consideration in this process are:

  • Mapping current service provision;
  • Building starter MHID Teams for catchment areas;
  • Clarify the clinical pathway in the context of
    • Referral criteria
    • Assessment process
    • Care plan
    • Discharge including communications required.

This specialist model is vital. In addition to its core function in assessing and treating mental health problems in a vulnerable subset of the population which impact directly on their dignity, the specialist nature of the teams will hopefully address:

  • The need for accurate diagnosis given atypical presentations in this population and communication issues which are frequent;
  • The need for appropriate multidisciplinary input given that mental illness, chronic behaviour problems and social communication issues can co-exist and prove difficult to disentangle;
  • The increased frequency of side effects in this group;
  • The increased frequency of coexisting epilepsy and other medical conditions;
  • Specific ethical Issues such as capacity and consent.

It is important therefore to note that whilst change has been slow to arrive, the future looks much brighter. The article seeks to highlight why this is especially important. This is not just about addressing the lack a service provision. This is about dignity, which as Simon Wessely argues, is where one’s pride, self-respect and happiness comes from.

Author Bio

Evan YacoubDr Evan Yacoub MBChB MRCPsych MSc., is a Consultant Psychiatrist for people with a learning disability, and Chair of the faculty of learning disability psychiatry at the College of Psychiatrists of Ireland.

Derek McNamara makes the argument for a refocusing of the client-staff relationship in Intellectual Disability services across Ireland in our modern, policy-driven world.

It is my experience that trust, real trust, that is essential to the therapy process, has always been something that has taken some time to build up with this client group, due to the years of having their information indiscriminately passed from one staff member to another and the belief that I am just another person who will do this.

“I hate my file, it only ever says the bad things I do and never says anything about any of my good days, it makes me not trust anyone as anything I say goes in that damn thing.“

I have been lucky enough as a psychotherapist in private practice to work with a lot of men and women who have intellectual disabilities and this opening quote has come from that work. Something that is continually coming up for my clients in recent times is their ‘fear of the file’ and the desire to have it destroyed by any means possible. Services that support adults with intellectual disabilities in residential settings have begun to pay this area a significant amount of attention due to the presence of HIQA and its standard that ‘Each individual has a file’ (Standard 19.4).

It is my experience that trust, real trust, that is essential to the therapy process, has always been something that has taken some time to build up with this client group, due to the years of having their information indiscriminately passed from one staff member to another and the belief that I am just another person who will do this. As a result of this phenomenon, therapists such as myself have dedicated themselves to the task of trying to find ways to assist persons with intellectual disabilities to find their voice and share their inner worlds, through the various safe mediums of psychotherapy. To date I have always managed to find a way to build this element of the relationship but am finding this increasingly difficult due to the new rigorous HIQA requirements and the silencing nature it is creating among the intellectual disability community.

Due to their dependence on others it can be difficult for adults with intellectual disabilities to express their anger in constructive ways about these things, and so the silence is created. McCormack (1991) tells us that we are most handicapped when we are powerless, and conversely, overcoming handicap involves overcoming the obstacles to empowering oneself- One client I am currently working with has reported feeling like a “puppet on a string” and holds the belief that “staff have too much control over my life”. Another client recently told me that “I don’t feel like a priority in my own life anymore” and went on to draw a self-drawing with no legs and no face. When the picture was explored, that person told me how having no legs represented the feeling of being stuck when it comes to the service and the demands imposed to be good “for the files sake” and the omitted face represented the loss of self-identity felt in the process.

So why is any of this important? It is my strong opinion that the lack of trust towards those who are paid to support this client group and the damaging affects their silence and anger can cause, will serve only to set them back 30-40 years, rather than help them move forward as is the intention of the new legislation and standards being rigorously adopted by services across Ireland.

I feel it important at this point to highlight that this article is not being written to find someone to blame for this phenomenon, whether they be frontline staff, senior management or the policy makers themselves. I am writing this piece to shed a light on an Irish culture which has become obsessed with documenting, to the extent that the time that needs to be spent on empowering, and most importantly listening, to our clients is being forgotten. The crux of this article and what is being highlighted is my observation of the emotional neglect of individuals with intellectual disabilities taking place in 2015-policy-driven Ireland.

What I have seen through my work with clients with intellectual disabilities is that the new standards and policies seem to be under-appreciating the need to pay attention to the emotional life of those being supported by services. Professionals in the field of intellectual disability often seem reluctant to treat and investigate emotional difficulties, preferring to concentrate on service planning and development, de-institutionalisation and the modification of behaviour (Arthur, 2003), as is currently happening in Ireland.

It is my belief that there is a need for two things to happen in the modern day service to overcome this. Firstly,  a refocusing of attention back onto the relationship between staff and the clients they support is needed, with an emphasis on using the relationship to focus on a person’s emotional life, rather than priority being given to fulfilling paperwork standards. Secondly,  a creation of space within services where all staff can meet monthly with an external facilitator, in order to process some of the effects of the work on them (Cottis, 2008), as in order to be open to our clients’ emotional lives, we must be aware of our own difficulties when facing them.

Research suggests that providing psychological consultation to staff responsible for the care and support of people with learning disabilities facilitates emotional development, improves staff–client relationships, decreases symptomatic behaviour and helps improve quality of life (Arthur, 1999), and it is this which has been lost in our policy-driven culture. I hope this short article has redrawn attention to its need.

Author Bio

Derek McNamara MIAHIP,is a disability psychotherapist working in private practice in Dublin.

Dr Evan Yacoub Consultant Psychiatrist

Psychiatry provision is outlined in various counties and places in Ireland for people with intellectual disability.

Psychiatry input to people with intellectual disability in Ireland is provided mostly by the voluntary and non-statutory sector as described by the white paper A Vision for Change (Department of Health and Children 2006) alongside some statutory provision. This paper describes one such community voluntary sector service provision for County Galway. This service provides the psychiatry input to people with intellectual disability in County Galway (in addition to a fortnightly clinic to County Roscommon where there are 97 service users) in the west of Ireland. This service is responsible for the psychiatry provision to people with ID in the two counties with the exception of a small ‘closed’ statutory Health Service Executive-managed service no longer accepting new referrals in the east of County Galway which has 57 service users on its books. The psychiatry provision to this statutory service is 0-2 whole time equivalent Consultant Psychiatrist input with the remaining 0-8 WTE being provided to the voluntary sector.

County Galway

The population of County Galway in 2011 was around 175000 (CSO 2011). It has a largely rural population with 77% of people living rurally. It is the second largest county in Ireland by area (over 6000 square kilometres).

Psychiatry service

This consists of a full time administrator who also provides input to the psychology service, 2 full time non-consultant hospital doctors, and 0-8 WTE Consultant Psychiatrist input. As 0-2 WTE is separately dedicated to the aforementioned statutory service, the additional pressure on this provision is through the fortnightly clinic to the neighbouring county and any clinical issues arising from this in between clinics. The Consultant and NCHDs are part of the local general psychiatry service on call rota.

‘Core business’ issues

The service sits within a voluntary organisation which like many others in Ireland has level service agreements with the Health Service Executive. However unlike many others it delivers services to people with mild ID. A significant numbers of voluntary sector services in Ireland work with people with moderate, severe and profound ID only. People with mild ID are often seen by psychiatric community mental health teams although some fall between the gaps in service provision. In County Galway however and for historical reasons, a significant number of people with mild ID receive service provision from voluntary services specialising in working with people with ID.

THe psychiatry service also provides input to children with ID which is also fairly unusual in voluntary sector bodies in Ireland where CAMHS or specialist child ID teams may be in place. This is through a clinic jointly provided with the local developmental paediatrics service.

A Vision for Change (Department of Health and Children 2006) has a number of recommendations in this area;

RECOMMENDATION 14.6: Mental health services for people with intellectual disability should be provided by a specialist mental health of intellectual disability (MHID) team that is catchment area-based. These services should be distinct and separate from, but closely linked to, the multidisciplinary teams in intellectual disability services who provide a health and social care service for people with intellectual disability.

RECOMMENDATION 14.7: The multidisciplinary MHID teams should be provided on the basis of two per 300,000 population for adults with intellectual disability.

RECOMMENDATION 14.8: One MHID team per 300,000 population should be provided for children and adolescents with intellectual disability.

Where do referrals come from?

The psychiatry team members are employed by the largest voluntary sector provider in the county and also provide input to smaller voluntary bodies. Essentially small multi-disciplinary teams (minus psychiatry) provide input to people with ID depending on age, geographical area and level of ability. If psychiatry input is required a referral is sent in via the GP.

Whilst the psychiatry team members are not part of an MDT as such service provision can be delivered through case conferences and team meetings. Much of the time however it is through psychiatry clinics which are attended by service users, families and/or key team members as appropriate.

The psychiatry service also receives referrals from CAMHS and community mental health teams. The referrals for children are for those attending special schools in the county and accessing multi-disciplinary services attached to those schools. The service is ‘cradle to grave’ and does not refer older service users to old age psychiatry services but can discharge service users to the care of their GP if they no longer require psychiatric input.

Number of service users

Total Mild ID Moderate ID Severe ID Profound ID
413 131 152 118 8

Table 1; service users by level of disability

As can be seen from table 1, there is a wide spread of ability levels amongst service users with a significant number of people with mild ID accessing specialist provision. There will be a needs assessment under way shortly to ascertain how many people with mild ID access community mental health teams in the county.

Diagnostic categories

Diagnosis Number
Anxiety Disorder 10
Mixed anxiety and depression 10
Depressive disorder 50
Bipolar affective disorder 66
Schizophrenia 25
Schizoaffective disorder 3
Autistic Spectrum Disorder 131
Cerebral Palsy 15
Down syndrome 63
Obsessive Compulsive Disorder 17

Table 2; Diagnostic category by number of service users

A number of service users will have co-morbid diagnoses, and in some cases service users will be referred with challenging behaviours in the absence of any diagnostic categories.

Inpatient admissions

The service is well connected to local psychiatric services and arranging inpatient admissions when required is straightforward. The Consultant Psychiatrist is also employed by the HSE (due to the 0-2 WTE provision to a HSE-managed service) and this ensures that admitted inpatients are under the care of their community psychiatric service when in an inpatient HSE facility.

Summary points

  1. The service covers a large geographical area.
  2. The service has children and people with mild ID on its caseload which is not always the case for voluntary sector psychiatry service provision. A Vision for Change (DOH 2006) makes a number of recommendations in this area.
  3. Ensuring that Consultant Psychiatrists providing input into the voluntary sector have HSE contracts can facilitate inpatient admissions when required.

Department of Health and Children (2006) A Vision for Change; Report of the expert group on mental health policy. The Stationery Office.

Central Statistics Office (2011) Census 2011 in Ireland and Northern Ireland.