A Constant Fight

the need for accessible and coordinated services for children and adults with hydrocephalus and/or spina bifida

The findings of this Report are based on a project conducted for the Association for Spina Bifida and Hydrocephalus between August 2001 and April 2002 which comprised a qualatative study involving service-users and professionals, covering their views on the important health needs, social needs and service needs of people with hydrocephalus and/or spina bifida. The Report highlights and examines the main issues for professionals and a wide range of service users, including some with little or no involvement with ASBAH.

People with spina bifida and hydrocephalus (SB/H):

• have a wide range of health needs involving a number of different medical and health-related specialisms.
• depend upon the provision of health services to meet crucial needs, eg continence care or mobility, in order to achieve and maintain independence and quality of life.
• require health services which have a holistic approach and are able to work in partnership with the user.
• in addition to their specialist needs, require access to mainstream services such as family planning, mental health, women's health, etc.
• require better access to health services by entitlement and without having to fight for them.

Some health service provision meets the needs of people with SB/H in ways which they consider satisfactory and appropriate. However, this is not always the case, especially for adult users.

Many of the Health Services which people with SB/H currently access:

• are fragmented and poorly coordinated, lack continuity and do not communicate well either among themselves or with users - and this is especially the case for many services for adults, where it is difficult to re-start contact if this has lapsed
• adopt a single disability - rather than a holistic - approach to users and their range of needs
• do not function with extensive knowledge and understanding of Spina Bifida or (especially) Hydrocephalus
• are structured on the assumption that adults are able to take full responsibility for the management of their own health care, and this is not always appropriate
• fail to meet the health care needs of young people in mainstream schools on a consistent and coordinated basis
• fail to offer a coordinated transition between paediatric and adult services
• do not offer in-patient or out-patient facilities for people with disabilities, or appropriate care to meet their needs while they are in hospital (eg stoma care, skin care etc)
• demonstrate little recognition of the complex needs of people with SB/H who are ageing

People with SB/H:

• need a service which supports their transition to adulthood and independence, where it is crucial that social, health, education, employment and emotional needs are covered in a coordinated programme.
• need access to coordinated, knowledgeable support/advocacy to enable their successful negotiation of service access, especially with respect to accommodation, equipment, mobility, respite care, employment, etc.
• require provision of accommodation appropriate to their independent living needs and without the risk of isolation.
• need services which address the needs of a population with increasing life expectancy, in terms of accommodation, equipment, etc.
• need services which adopt a holistic approach to provision of equipment including wheelchairs, rather than a narrow medically-defined assessment of need.
• require adequate financial provision to meet the costs of living with disability.

Parents of children and young people, especially those with multiple impairments:

• require accessible services which offer them the support they need as well as meeting the needs of the young people.

Although there are areas where service provision takes a positive needs-led approach, much of the provision for people with complex needs due to SB/H (and especially for adults) is characterised by:

• a fragmented, discontinuous, problem-focused approach, with little allowance for long-term planning or holistic consideration of need
• a rigid set of criteria for service access which often means only those in crisis or at high risk qualify
• low levels of knowledge and understanding of the conditions (especially hydrocephalus)
• a categorisation of service-users which is often inappropriate for those with multiple impairments and which acts as a barrier to a holistic approach
• a lack of attention to the needs of young people reaching the Transition period
• delays in assessment and service delivery, with the result that some users feel they have to fight to get access to services they need
• little provision to meet particular needs such as respite care or the combined effects on users of disability and ageing, or those associated with hydrocephalus

The main features of service need are:

• service delivery is often as important as the service involved - ease of access, continuity of personnel with knowledge and understanding and communication skills.
• coordination and continuity of services within and between statutory services.
• a holistic approach focusing on user need and not availability of resources.
• realistic response times which do not risk a reduction in user health independence or mobility.
• provision of information to users and providers.
• coordinated support for users in navigating the range of statutory (and voluntary) services.

• A partnership approach between service providers and service users.
• A clearly identified Care Coordinator to operate with parents across the service divide, to offer support and advocacy where necessary and to maximise service use while sharing responsibility and control.
• Regional specialist centres with the knowledge and range of specialist skills to provide a holistic service to users through a coordinated approach under one roof, and including an outreach and information service.
• A transition service bridging the service divide and enabling young people to develop the skills necessary to adulthood and appropriate independent living.
• Planning for the future, including meeting the needs of those with hydrocephalus and those reaching older age.

extracted/selected quotes from participants:-

• "[You] have to start from scratch every time you have to see a doctor," (adult, 30s with SB/H, referring to the wide range of unconnected clinic appointments she must attend).
• "You get to that stage where you stop asking, 'cos you lose heart: they won't come to you and suggest or offer anything," (mother of 14-year-old with severe impairments due to H).
• A woman with SB in her 50s contacted sociaservices requesting help in the home. She found the staff variable in quality, constantly changing and often failed to turn up at alwithout warning. She felt there was a constant emphasis on what they were not prepared to do rather than what they would do, and little regard for her needs: 'my needs seemed to come last.' She felt the service in no way met her needs but she stilneeds assistance, and now relies on help from friends whom she pays.
• "You get to 16 and certain things are just cut off stone dead, like Physiotherapy - they think once you get to 16 you don't need them anymore," (adult, 20s with SB/H).
• "Often when I'm an in-patient my general everyday care doesn't go well, despite what's in my care plan," (adult, 30s with SB/H)
• "Everyone will sympathise and understand about the outside things that they can see, but the inside things, memory and things like that," (mother of 12-year-old with SB and H).

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