Looking forwards with spina bifida


Issues faced by young people with spina bifida and hydrocephalus during important healthcare transitions

Spina bifida (SB) occurs in pregnancy and results in problems with mobility and bladder/bowel incontinence. Those affected often require lifetime use of a wheelchair. In addition, around 80 per cent of those with SB also have hydrocephalus (HC) which can contribute to difficulties with learning, coordination and communication. Children born with these disabilities require lifelong support due to complex needs.

Young people aged 12 to 25 go through a range of transitions both in healthcare and education, with similar issues faced in both. These issues emphasise the need for an integrated approach.

All change

Young people develop close relationships with the paediatric team through regular hospital attendance. However, at the age of 16 they undergo transfer into adult services. This is a significantly different level of service which is reactive and relies on the individual asking their GP for support rather than it being proactively given. Many struggle with the self-management of their conditions and the health issues, especially related to incontinence; this may result in low self-esteem and depression. Work and study options can be limited due to the complexity of health issues, leaving young people with financial and educational inequalities. Therefore, the need for additional support during transition is often acute and early intervention with a person-centred approach can prevent young people reaching crisis point.

The transfer to adult services can be a daunting time for young people and their carer(s), as leaving paediatric services can be stressful. Transitional services require a comprehensive plan of the health and care needs of the young person and their family members with a view to looking at long-term goals, empowerment and advocacy.

Planning for transition involves speaking to young people and families, as well as staff providing for their care, health and wellbeing. At present, transition planning can be variable; there can often be inconsistencies and a lack of information and preparation for young people and their parents about the changes they can expect as they move into adult services, leading to a lack of understanding of the transition process. Often, professionals delivering care are not clear about the process, with some young people with complex health issues being transitioned to adult services in some areas of their care and remaining in paediatrics for other areas. These factors provide a clear indication of the need for transition specialists, whose aim is to coordinate services across the multi-disciplinary team and enable smooth transitions.

Effective planning

A robust transition plan needs to be in place before transfer to adult services, with it ideally starting at the beginning of secondary school. Although the guidance makes it clear that transition plans should be in place, it is difficult to produce them due to integrated care planning being in the early stages of implementation. If there is no equivalent adult service, the perception is that there is no-one to transfer the young person to and engage in the planning process. There needs to be clarity over roles and responsibilities regarding transition with a key worker coordinating engagement between different services.

Health passports can be used more widely with young people and their family in planning the transition process. One of the most frustrating elements of the transfer to adult services is having to keep repeating the young person’s health needs and history to multiple teams. Passports are valued by young people and their families as well as the health and care teams, although they are used infrequently. A person-centred electronic record providing immediate access to young people’s relevant medical history, care needs and wishes is needed as a matter of urgency.

An identified lead professional is crucial to support young people and their families through transition. Health and care professionals understand that parents are usually the main coordinators of care and services for their child. There is often a lack of resources and capacity in children’s services to manage existing workloads, with adult health services not routinely engaging in transition planning of under-18s. GPs are not routinely the first point of contact in the care of young people with complex needs as children, but then they have a key role when implementing care on transfer to adult services.

Listening to families

Health care settings and services should be responsive to the needs of young people and their families when transferring to adult services. Adult health care settings and services are often not suitable for young people who are transferring to their service. Professionals often feel that they lack experience in supporting young people with complex needs when they first move to adult services. Some more intensive services are available through children’s services but are not available through the adult care sector. This is often due to capacity and resources but also the differing skills and expertise in the two sectors.

The needs of parents as carers should be assessed and addressed within the transition plan. Parents often feel abandoned by health and social care services at this crucial time. There can be a culture of over reliance on partner agencies to recognise and assess the demands on family members as carers, to follow these up appropriately, and to develop strategies to address their needs. Families can feel unsupported by professionals, that the choices they face have not been fully explained to them and that they do not have enough control over future planning. Professionals often have had no training in assessing the needs of carers. Despite widespread recognition of the impact of caring for a young person with complex health needs, there are limited resources to address issues highlighted by carers.

Responsibility for funding should be agreed early in the transition process so that equipment, services, respite care or other requirements are agreed during the planning stage. Changes in funding from children’s to adult services are often not clear or explained in full. Assessments to allocate funding for continuing care can be completed by third parties who have no previous connection with the young person and their family, meaning that key information is sometimes not available and decisions are delayed. Personal budgets can be highly valued by young people and their families but they are of no help if the services are not available for purchase.

Making it work

Getting transition care right for every child is not easy but it is achievable; services require a comprehensive plan of the health and care needs of the young person and their family members, with a view to planning for short- and long-term goals, empowerment and advocacy. Sometimes, it is useful to hold transition clinics to enable young people to share ideas, discuss what adult services might be like and talk to others who are going through the same process.

Transition specialists should support young people and give details of groups, youth clubs or charities that might be helpful. Ultimately, as part of a holistic approach to the wellbeing of young people, a transition plan should be coordinated by a lead professional who maintains contact with the family and young person until they are well established within adult services.

Further information

Lindsay Cunningham-McLeish woks for Spina Bifida Hydrocephalus Scotland as their Health and Well Being Nurse for the East Coast of Scotland:

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