Submissions were sought from the general public, patient/user groups and service providers in order to ensure that this neuro-rehabilitation policy would be informed by as wide a range of views as possible. An advertisement was placed requesting ideas, proposals and views on neuro-rehabilitation services and 77 submissions were received from individuals and groups, including service users, families and carers, service organisations, national advocacy bodies, individual professionals, non-statutory sector service providers, HSE service providers, umbrella groups representing service users, public representatives and national professional fora (see Appendix 2 for list of submissions).
The consultation process offered a wealth of information and insight into the reality of life for those needing neuro-rehabilitation services. Learning from this exercise has not only informed development of this report, but will also serve to inform ongoing efforts in all aspects of rehabilitation service provision. To this end, all information gathered during the consultations has been captured and analysed.
A detailed review was carried out by members of the Working Group on all 77 submissions and their content analysed, drawing out the key themes and main messages for this policy. Certain key messages were resonant themes in submissions and are highlighted here in order to reflect their importance in informing overall development, direction and approach of this policy:
• ‘The heartache started on their discharge to the community … I have done needs assessments on many groups of people, but this was the one area where I felt deeply affected by their total loss and inability to traverse the healthcare system once discharged from hospital. Also, they were traumatised by the lack of understanding on the part of many healthcare professionals.’ Dr. Regina Kiernan, Consultant in Public Health Medicine
• ‘Rehabilitation services should be based on need, regardless of age.’
Neurological Alliance of Ireland
• ‘There is a limited access to therapy in the community and rehabilitation teams comprising a range of disciplines, including occupational therapy, speech and language therapy, psychology, nursing, rehabilitation
assistants, social work, creative arts therapists. Teams do exist, but work independently of each other, are scattered, incomplete and insufficient for need.’ Richard Stables, Headway
• ‘Rehabilitation services and supports play an important role in the lives of people with disabilities. Effective rehabilitation will enable these individuals to eventually return to, and participate in, community life. This will lead to greatly improved quality of life for the individual, with resultant health and social gain.’ Jacinta Dixon, Disability Federation of Ireland
• ‘AOTI [Association of Occupational Therapists of Ireland] recommend the establishment and expansion of post-acute rehabilitation units, both nationally and regionally. This would maintain the speciality services needed for those people who require highly specialised and high-intensity therapy to reach their maximum independence, while also providing better access for those at local or regional level to avail of in-patient rehabilitation services.’ Association of Occupational Therapists of Ireland
Submissions from organisations that provide services shared a common focus on systemic elements, such as increased funding, dedicated resourcing and provision of ongoing training in order to address service needs effectively.
The need to achieve integrated service delivery and mechanisms of effecting this were common themes, while many suggestions were also made about enhancing the quality of services and improving the utilisation of existing resources. The shortage of neuropsychologists was most frequently mentioned in submissions.
Community-based therapists (occupational, physiotherapists, and speech and language) were noted as particular barriers to offering timely and effective neuro-rehabilitation. Strengths and weaknesses of the existing system were outlined, with proposals on how to close gaps in provision and how to work towards a more coherent system of neuro-rehabilitation service delivery.
Views of service users were often more personal in nature, reflecting their experiences in attempting to access rehabilitation and their frustrations when encountering barriers in this process. Lack of integration of services, reports of inequities, delays and lack of insight among staff on the person’s needs were highlighted regularly. A sense of disempowerment permeated many submissions, together with feelings of anger and frustration on the lack of appropriate
information and advice. The importance of clear information in a standardised
format in relation to eligibility to and availability of services was a recurring theme among service users. Many deplored the lack of such information, as well as the limitations in available supports to access services. Many barriers were reported as existing for people of different age groups, with children and their parents appearing to encounter particular obstacles in accessing appropriate services at the optimal time. Services were regarded as rigid and unresponsive, with age or diagnosis often appearing to be the criterion for access, rather than individual need.
Key issues identified during the consultation process by both service users and service providers highlighted gaps in a continuum of neuro-rehabilitation services, with specific reference to:
• a lack of appropriate step-down facilities for people discharged from rehabilitation;
• absence of rehabilitation services in many residential facilities and nursing homes;
• lengthy delays in effecting necessary house adaptations;
• uneven service distribution across the country, together with varying
approaches to service provision, emerged as a further major factor leading to inequities of access to treatment and support services.
Another issue identified by both service users and service providers was the need to involve families, carers and other relevant people in the neuro-rehabilitation process. For service users in particular, this was seen as a critical factor in facilitating engagement with social and recreational spheres of activity, as much as in supporting basic daily living tasks. Indeed, the importance of social activities and purposeful occupation as a means of enhancing quality of life was viewed as an integral component of successful rehabilitation. This is an essential factor – but one that may easily be overlooked – for consideration in developing any model of neuro-rehabilitation service provision.
The inadequacy of provision of essential aids, appliances and assistive technology was cited as hampering optimal independence. The potential of assistive technology – in supporting the service user to exert autonomy, live as independently as possible and overcome barriers to participation in activities – has not always been optimally harnessed. Adaptations to housing, together with provision of appropriate aids and assistive devices, can be a cost-effective means of empowering individuals and providing enhanced quality of life (see Chapter 3).
At the same time, it must be said, good practice in many services was acknowledged by those who made submissions. Understanding was also expressed about the difficulties encountered in moving towards an integrated model of service provision, with many realistic, constructive suggestions made on how to address these. These observations, suggestions and recommendations have been analysed and have informed the development process of this policy.