Developing Mental Health Services for Adults and Children with Intellectual Disability across Ireland

Fionnuala Kelly and Ciara Latimer examine the current process of establishing mental health intellectual disability teams in Ireland.

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Mental health services in Ireland have been evolving over the last 12 years, in line with “A Vision for Change” (2006), a blueprint for future mental health services. Overall, there is much more of a national awareness of mental health issues and the importance of mental health promotion. In terms of service provision, the HSE and other organisations have worked together on significantly advancing the development of mental health services for general adult, older persons, children and adolescent populations, in line with A Vision for Change’s recommendations.

In relation to adults and children with an Intellectual Disability (ID), A Vision for Change clearly states that there should be specialised mental health services dedicated to the needs of people with Intellectual Disabilities across the whole country. In conjunction, Ireland signed up to the United Nations (UN) Convention on the “Rights of Persons with Disabilities” (CRPD) in 2007, and this affirms that all persons with a disability must enjoy the same fundamental human rights and basic freedoms as do those without a disability. Achieving health equity for people with ID includes provision of better mental health services which recognise the changing face of mental health and disability services in Ireland.

What is the current picture of mental health services for people with an ID?

Currently however, it is widely recognised that there is a national shortage of experience and expertise specialising in the mental health needs of people with an ID, and that there is a deficit of specialist mental health teams and services across the country.

Historically, specialist ID mental health services have been, and are being, provided by many of our national section 38/39 Voluntary Agencies as part of their Disability services, and in 2013 the HSE’s Mental Health Division invested additional funding and resources in building up its own Mental Health for Intellectual Disability (MHID) teams. However, what has arisen is that there are sections of the country that do have access to these services, but significantly there are large sections that either have none or limited access to services that meet their specific mental health needs. On a national basis therefore, people with an ID are not experiencing the levels of care and support that they or their family members need.

What is the level of mental ill health for people with an ID?

In the past, there was an assumption that if you have an ID, you are unlikely to develop any mental health problems such as depression or anxiety. We now know from extensive research that people with ID actually experience mental ill health at a rate which far exceeds that of the general population. If a person has an ID they are at least two to three times more likely to have a mental health problem than the general population, with 4 in every 10 people with ID experiencing a mental illness in their lifetime. This vulnerability to mental disorder is complex, and arises from interplay between the intellectual disability and other medical, social and psychological factors.

What is being done to address this situation?

In 2017, the HSE’s Mental Health Division committed in its operational plans to develop MHID services across the country and initiated the “National MHID Service Development Programme,” as part of its strategic Service Improvement programme of development.  The aim of the programme is to work in close partnership with our colleagues in Social Care and the Voluntary Agencies, to pool resources and provide a unified approach to developing a national network of specialist, multi-disciplinary, community based MHID teams for adults and children with equitable and clear access across Ireland.  These teams will provide mental health services to people with moderate to severe ID, and will work together with their colleagues in other mental health and disability services, to provide a nationally-agreed quality of care programme.

What specifically is being worked on?

Developing quality MHID services across Ireland is not a quick-fix situation; instead, the national programme is looking longer-term and ensuring that initial focus is on building a solid foundation of staff, structures and systems, before addressing other priority areas.  Specifically, it is looking at:

  • Agreeing MHID service plans – within each section of the country, i.e. Community Health Organisations (CHOs), the HSE and relevant Voluntary Agencies will strategically agree how MHID services will be delivered within their own region, and clarify for service users and their families which agency is responsible for providing their MHID service;
  • Developing a network of MHID teams across the country – ensuring all health catchment areas across the country have a dedicated MHID team, either from the HSE or a voluntary agency, which they can easily access;
  • Building a critical mass of staff – with sufficient expertise and experience, this will be achieved through national and international recruitment, and through the introduction of new MHID specific postgraduate course options;
  • Developing a national Model of Service for MHID – which will clearly outline best practice and recommended guidelines for delivering quality MHID services, in a consistent and unified manner across all MHID teams;
  • Introducing a clinical data system – which will enable MHID teams to collect and use key Performance Indicators (KPIs) to ensure that services focus on quality improvement at a local and national level;
  • Clear governance – working with voluntary agencies and local HSE management structures to ensure that the governance of MHID services and their requirements are clearly detailed and adhered to.

 

Who is involved with this work?

To be effective and ensure quality, it is essential that this programme works with and obtains the views of a variety of people from diverse but relevant backgrounds. The following groups of people have and will be involved, to appropriate degrees, on working on all aspects of this programme:

Service Users and their families – we are working on developing services for service users and their families, so it is vitally important that we work closely with service users and their families to understand what they need from the service and to help us in its design;

MHID staff and subject matter experts from both HSE and voluntary agencies – it is important that this group involves all disciplines involved in delivery of services, e.g. Psychiatry, Nursing, Psychology, Social work, Occupational Therapy, Speech and Language etc., and that they have an opportunity to contribute;

Mental Health, Primary Care and Disability staff – all staff involved in the care of people with ID need to work together in an integrated manner, and hence it is important to get the views of all involved groups e.g. GPs, Disability Operations etc.;

National MHID team – this consists of a dedicated MHID Clinical Lead and Programme Manager with the support of the HSE’s Mental Health Programme Management Office and senior executive sponsors both clinical and operational;

Senior management from both Mental Health and Social Care – at national and local CHO level and across the HSE and Voluntary Agencies;

External Quality Assurance – working with colleagues in Community Learning Disability Services (CLDS) in Tower Hamlets, London, to research best practice and to provide an external input and review of the work.

groupMembers of the HSE’s National MHID Service Development programme, visiting with

colleagues from Tower Hamlets Community Learning Disability Services

 

What does all this mean for Service Users and their Families?

Ultimately, all these pieces of work and collaborations are working towards:

  • Service users and their families having easy access to a local mental health team, with the specialist skills to provide effective care, no matter where they live in the country
  • Service Users and their families knowing where to go to and who they will see
  • Engagement with GPs and local services, who understand local referral pathways and criteria
  • Adults and children with moderate to profound ID getting the right assessment, diagnosis and interventions
  • Service users having access to a specialist multi-disciplinary team. Initially a Baseline team of Psychiatry, Nursing and Psychology, but then services building up to include Occupational Therapy, Social Work and Speech and Language Therapy
  • Mental health and local disability services working together on care plans and how best to provide support and promote recovery
  • MHID teams creating local awareness of mental health and ID, including prevention, early intervention and how to crisis manage.

 

Interested and would like to have your say?

We are actively looking to hear from service users and their families to help us achieve this objective. Inclusion Ireland, in conjunction with the HSE, will be holding national family and service user consultation sessions in March and April 2018.  If you are interested and want to get involved, please contact either

Julie Helen (Inclusion Ireland) at julie@inclusionireland.ie / 086 8373312 or

Ciara Latimer (HSE Mental Health Division) at ciara.latimer@hse.ie / 087 0515580.

Ciara Latimer is the HSE’s Mental Health Division’s National MHID Service Development Programme Manager.

Dr Fionnuala Kelly is the HSE’s MHID Clinical Lead.

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