Mental Health Users, Patients and Carers Must be Involved in Policy Development

Mental health patients must be involved in policy development – Neville


 Fine Gael Limerick TD and President of the Irish Association of Sucidology, Dan Neville TD, has said that service users and carers must be involved in the planning and delivery of mental health services. Deputy Neville is giving the keynote address at the 10th Annual Mental Health Conference at University of Ulster, in Derry today (Tuesday).

“Service users have a unique insight into the experience of mental health and a greater awareness of the public perception of mental health and the provision of services. Their expertise is very different to the experience of other stakeholders in mental health. The importance of the views of service users in formulating mental health policy must not be ignored.

On the 9th and 10th of this months the Irish Association of Suicidology in association with a Counselling charity contact held the 17th Annual Conference in the City Hotel, Derry/Londonderry.   The theme of the conference was Building Resilience and Promoting Recovery.    Before I refer specifically to the theme of my talk entitled “Rehabilitation and Recovery must underpin all aspects of mental illness”.

I will deal briefly with resilience.     At different stages of life we face challenges and difficulties and this is especially so many during the present economic crisis.    It is important that we develop individual strengths to bounce back from such challenges that life presents.

It is important to adapt to change and to draw on ones strengths to protect our mental health and to plan to do so.    There is no one formula to do this as each individual has different difficulties.  It is important to take care of one’s mental health by meeting friends and to get involved in leisure time activities.     Too often in times of difficulty people do not have the mental energy to do this.    Exercise and diet are vital during such times.

In extremely difficult times such as there is at present, a loss of income, a threat to one’s job or home or if there are financial difficulties, particular care has to be paid to mental health and wellbeing.  Too often, people will resort to alcohol or drugs to ease the mental pain.     If the extreme mental stress is persisting it is important that help be sought and that people share the burden with friends, family and seek professional assistance and that they are not inhibited in doing so.

Unfortunately in many cases we still delay or do not seek assistance.     While things have improved, stigma still persists which is hurtful and isolating and causes prejudices against those who are mentally unwell.    Stigma excludes and marginalises people.     It limits access to employment, damages social relationships and participation and reduces self esteem and dignity.    Recovery of one’s mental health is a journey of healing and transformation in enabling a person with a mental health problem to live a full meaningful and participating life in the community whilst striving to achieve his or her full potential.

The concept of a recovery from mental illness is a wide subject and each individual has to find their own way and strategy for recovery.    Recovery is a process unique to each person.    It is important that the mental health services have a strong commitment to recovery for those suffering from mental ill health.    This must reflect the belief that it is possible for all those suffering from mental illness can achieve control over their lives, to recover their self esteem and to move towards a life where they experience a sense of belonging and participation.

The lack of appropriate services for those ill in the community creates difficulty for the mental health services and for a large number of individuals themselves.    They suffer the stress from their illness.   Too many are at high risk of ending up homeless, becoming involved in petty crime, being inappropriately imprisoned or being in a state of social isolation and dereliction.       Because of this lack of services those with enduring mental illness are at risk of repeated involuntary detention.  Modern mental health services is best delivered in the community.    Resources must be provided from mental health services to be used primarily to further strengthen community mental health teams in both adult and children’s mental health services to advance activities in the areas of suicide prevention, to initiate the provision of psychological counselling services in primary care and to facilitate the transfer of mental health service users from institutional to community based care.

The Group that experience a range of problems that result in their lives becoming restricted and impoverished are those people with severe and enduring mental illness.    This group of service user is perhaps the most vulnerable in the mental health service and ultimately the quality of the service overall can be measured by the quality of care provided to this group.    In the past this group reflect limitations in professional appreciation of their emotional and practical needs and also limited appreciation of their potential to grow and develop as individual through and beyond the experience of severe mental illness.

‘A Vision for Change’, the report of the expert group on mental health policy in the Republic state that Rehabilitation and Recovery Mental Health Teams should provide specialised service for people disadvantaged by a range of problems that can develop with severe mental illness and which cannot be adequately met by the general adult community mental health teams.     It is important that a process is introduced that enables disadvantaged individuals to access as independent a life as possible in social, cultural and economic terms.     A strong commitment to the principal of recovery should underpin the work of the rehabilitation team.   This reflects the belief that it is possible for all service users to achieve control over their lives to recover their self-esteem and move towards building a future life where they experience a sense of belonging and participation.

Many of this group experience substantial distress resulting from persistent symptoms.    Institutionalisation and loss of selfhood and require individualised, specialised interventions with appropriate recovery orientated programmes many could reach a level of functioning sufficient to live and enjoy a more independent life in the community.

The needs of service users for social as well as clinical recovery is not currently addressed by the service provision.

Many of the current Vocational and Training Programmes which are a key component of rehabilitation and recovery do not meet the needs of service users for moving into mainstream employment.

There is a lack of adequate housing and accommodation options for enabling service users to move through the different stages of recovery and progress towards the goal of independent community based living.

‘A Vision for Change’ recommended that each Community Mental Health Team should be assigned to a population of 100,000.     Assertive outreach teams providing community based interventions should be the principal modality through which these teams work.    It is recommended that the composition of these teams should include the following:


–          One Consultant Psychiatrist

–          10-15 Psychiatric Nurses for assertive outreach nursing team (maximum case load of 12 service users to one nurse.

–          Mental health support workers based on numbers of service users require such support who can provide peer support and advocacy

–          Two Occupational Therapists

–          Two Social Workers

–          Two Clinical Psychologist

–          Cognitive Behaviour Therapists/Psychotherapist

–          Addiction Counsellor

–          Additional staff including domestic skilled trainer

–          Creative and recreational therapist

–          Administrative Support

I wish to address the area of involvement of service users and carers in the planning and deliverance of excellence and supporting recovery of those suffering from a mental ill health problem.

Service users have a unique insight into the experience of mental health and a greater awareness of the public perception of mental health and the provision of services.     Their expertise is very different to the experience of other stakeholders in mental health.     Family and friends are important sources of support for service users and have their own unique insight into mental ill health and the provision of mental health services.    The importance of the views of service users in formulating this policy is shown by the inclusion of service users at all levels of the mental health system.    There needs to be a willingness and acceptance from professionals that service users have a right to be involved and this should be built automatically into their ways of working.    Service users should be facilitated to decide what they want to do rather than having to adapt to others plans for them.    Exceptions to this happen in the case of involuntary admissions but the principle of involvement should be maintained as far as possible.  The existing experience, knowledge and skills of service users should be valued even those may challenge those of some professionals.

I wish to deal with the area of carers of those recovering from mental illness and the need to include and involve carers involved for caring in the home for people with mental health problems, the need to formerly recognise and support through practical means the crucial role of family care in mental health service provision.    Carers often feel excluded from the care of the service users, for example in situations where they are not given any information while at the same time being expected to provide shelter for the service user and look after their day to day needs.      Carers need to be valued for their role and input.   This means for example that the mental health service should consult with the carer and inform the carer in advance that the service user is being discharged into their care.


It is often appropriate and helpful for the carer, with the agreement of the service user to be involved in the care planning process.   The care plan should ensure that carers are not forced to assume an unsustainable level of care.   Carers should be provided with practical support and measures such as inclusion in the care planning process with the agreement of the service user, inclusion in the discharge planning process, timely and appropriate information and education, planned respite care and should have a member of the multi- disciplinary team to act as a key worker designated point of contact with the team and to ensure that these services are provided.


Confidentiality is often raised as the reason for lack of communication.    Providing the service user agrees the Carer or other family members should be given information about the service users’ situation if they request it.   However, there are times when the information needs of Carers and families may conflict with the service users wish for privacy.  While the right of confidentiality for the user must be respected, a way forward must be agreed to ensure the needs of the carer and family are also met.







A person centre approach to delivery of care will both highlight and moderate these conflicting rights offering measures such as advanced directives that can be put into effect at times when the user may not be well enough to make informed decision, identifying a working in partnership with the carer, and providing carers and families information about the illness with regard to the sensitivities of the service user.


It has been shown that inadequate information or an absence of information contributes to poor experiences by service users and carers.    Indeed many users and carers experience added stress and trauma and associated ill health because they do not know or are unsure of the diagnosis and are given little information on many aspects of treatment and care.


On-going and timely communication of information relating to care options, medications, treatment options and therapies, legal rights and status, complaints procedure, availability of services, training, housing, benefits and entitlements, must be structured into the service provision system.   Information should be available from a range of sources both within and independent of the medical health service.


A decision by a service user to ask a family member or friend to request information on their behalf should be respected by professional staff.    This presents an opportunity for learning for both the giver and the receiver of information.    Information flow must be multi directional involving service providers and carers.


The right to information is fundamental to autonomy and self-determination.     The manner of communication is crucial to ensure this does not become a paper exercise and should involve advocates or personal representatives where necessary.    Different types of mental health information, and the systems for providing such information should be available.


Information on the process involved in making complaints or comments on mental health services should also be widely available.


The Adult Education System should offer appropriate and supportive access to information, courses, and qualifications to service users, carers and their representatives that would help to enhance and empower people to represent themselves and others.