Continence
It is sometimes hard to believe that all of our service users are served by the same national health, educational and social services - so variable is the quality and quantity of their care. In no area is this more apparent than in the field of continence management.
Recent changes in NHS funding and the introduction of the NHS and Community Care Act have further complicated the issues. In some areas, it is becoming increasingly difficult to gain access to an appropriate consultant. Therapist support and adult services may be almost non-existent.
For these reasons, we aim to use our specialist knowledge to work towards improving services by ensuring that every child born with spina bifida is given access to specialist paediatric and urological advice from birth and that adequate counselling and support is available to the family.
Some authorities offer pre-school support services and we aim to liaise with as many as possible in order to promote the idea of early independence and self-awareness training.
Once a child has started school, it is essential that school staff should be made aware of the importance of adequate continence training in the school setting and that this is reflected in a multi-professional assessment under the terms of the 1981 Education Act.
We know that, while there is no one system of continence management that suits everyone, there will be a system that suits the individual. Professionals must therefore work with families to design daily care and independence training programmes which are fully compatible with the demands of the school day and the life-style of the family and, for adults, with the demands of independent living.
In order to ensure that suitable continence equipment is available in all regions for our service users, we liaise with our colleagues in health, education and the social services to raise their awareness. It is also our duty to seek out the best value for money for service users. In doing this, we shall be in a position to promote greater co-operation between professionals and better use of available resources.
ASBAH believes that lack of adequate continence management in the early years leads to inappropriate behaviour and to lack of self-esteem. It is essential that we encourage medical practitioners to consider these long-term effects when deciding upon the methods of management of incontinence in young children.
Working with paediatricians to establish systems of management which help to promote independent living will provide our service users and their families with a much greater quality of life. ASBAH's Specialist Advisers (Continence) take individual referrals, as well as holding workshops for those who feel happier seeking advice in a group. Advice is also available on request to all professionals working in the health, education and social services spheres with children and adults who have spina bifida.
Information supplied by the:
Association for Spina Bifida and Hydrocephalus, 42 Park Road, Peterborough, PE1 2UQ, England
